Becky's Blog

152 Days and Counting

2010-03-16T15:59:00.003-05:00

Well, it's been a long time since I wrote last. Honestly, I kept waiting, thinking that the next time there was a blog update would be when Jake wrote to tell you all I'd gotten new lungs. Since that hasn't happened yet, though, I figured I should give a little update. A lot has happened since the beginning of November, but I'll give you just a few of the highlights.

We've been blessed beyond belief in these past 4 months. In November, we were contacted by a local family that gives an amazing gift to another family each Christmas. Each member of their family chips in to get things that the other family needs. This year, they chose us. We were blessed with new coats, clothes, boots, and a much needed eye exam and new pair of glasses for Jake. We felt incredibly humbled and grateful for the gifts this family gave and think of them each time we use them. God used these people to provide for us when our situation would not allow us to provide them for ourselves. It's a shining example of how the church works together. We hope to follow their example in the future.

In December, my sister and her husband and daughter came to Illinois for Christmas. We had a great time with them and even had pictures taken of our entire family. My brother and sister and their families gave me a ring that has "HOPE" engraved on it. It was an incredibly special gift, and I wear it every day. Whenever I look at it, I think of them and know that they are thinking of me and praying for me and hoping with me.

I also received an incredible gift from a friend. My best friend, Kati, has a brother that we've prayed for for a very long time. About a year or so ago he gave his life to Christ and has been changing in amazing ways...and in ways only a relationship with Jesus Christ could make happen. He's always been a good guy, but seeing the change in him has been awe inspiring. He spent New Year's Eve with Kati and her family and Jake and me. We also celebrated Christmas together that night, and his gift to me was amazing. He told me he'd been praying for a long time about how and when to stop smoking. He said that after praying he had decided that when I get new lungs he would stop. To me, this was the most amazing gift I could have received. To know that he prays for me and cares about me is special in itself, but to know that he will be breathing fresh air when I do is a priceless gift.

I had a "dry run" in December. While I was in the hospital, they called me to tell me they MIGHT have new lungs. It was a long shot because of some complications they foresaw, but we all went on high alert. It ended up being a comedy of errors. I got a hold of Jake but we couldn't decide if he should come up or not since they were pretty certain the lungs wouldn't work. Then I called my dad and he was in the middle of getting his tires rotated at Wal-Mart and couldn't do anything. Almost everyone else I called didn't answer their phone. And I'd left my papers at home with the list of people I should call so I was going by memory...NOT a good thing! Everyone was finally contacted and told to wait until we knew for sure, and Jake went ahead and made the 3 hour trip. About 5 minutes after he got here, my nurse came in and said "No go". And that was it. So basically Jake drove 3 hours to watch me eat dinner!

It really was a good thing to happen, though. It gave all of us a chance to see what would happen...and most of us found out we were not ready. It was also a good chance to see that they really were looking for lungs for me and there really are lungs out there with my name on them.

Probably the biggest excitement of the last 4 months, though, has been Jake's work. On the first of January, a lot of new medicare laws came into play. Because of this (making a very long story short) we no longer have an income limit in order for me to continue having affordable healthcare! Jake started working 30 hours per week at church and once the transplant happens will be able to start working there full-time! We are thrilled! Jake loves his work which is a huge answer to prayer to begin with, but to be able to do it full-time will be amazing! This will also allow us to move out of my parents house and FINALLY have a place of our own again!

So many exciting things are just around the corner for us. I ask that you continue to pray for the transplant and for the donor and their family. Also, please pray for our emotional health. I continue to be in the hospital for 2 weeks with usually only 4 weeks in between stays. This is incredibly draining for both of us. Since the end of October I've been in the hospital 5 times. We're really ready for this trend to be done, but also realize that it's all in His timing. I am thankful for every day I have with the lungs I have. Just please pray against discouragement for both of us.

Thanks again for your prayers for us and I hope the next time there is an update it will be Jake doing the typing. We'll keep hoping!

"My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever." Psalm 73:26

On THE List

2009-11-02T20:39:00.002-06:00

On October 15, 2009 I was officially put on the University of Iowa Hospitals and Clinic's double lung transplant list. As of today I have a lung allocation score of 32.77. (You can Google lung allocation score to learn more about what all that entails.) For my blood type group (type A) I have the highest score at this transplant center. So, essentially I'm at the top of the list!

Being on the list has brought on a myriad of emotions. Most of the time I'm excited at all the possibilities. However, I'm also going through everything from depression to nervousness to fear. Knowing the call can come at any moment is kind of like having your senses on high alert all the time. It's stressful and anxiety inducing. The times I'm not thinking about it are far and few between and inevitably I suddenly worry about not being worried.

I'm also in the hospital right now and somehow being here has intensified all the anxious and sad feelings I was feeling at home. Honestly, I don't know how people do this for one and two years. I know that my wait is going to be relatively short and continually experience these things. What do those people do who wait for such a long time?

Something Jake and I have been talking about lately is all the changes that will occur in our relationship. Jake has always been my caretaker, especially these last couple of years. Besides the stress of surgery and recovery, we are going to be facing a significant shift in roles. Suddenly the things I haven't been able to do I'll be able to do. The things I depended so much on Jake for will be greatly decreased. This is bound to change things between us which is both exciting and scary at the same time. I see it almost like getting married again.

Before we got married we talked a lot about who would do what and what we expected out of each other. Now, we're having those same conversations. The difference is, we're not completely sure what to expect. We don't know how a "normal" couple does things. It's all going to take a lot of adjustment. Thankfully, we've been seeing a great counselor who's been helping us to see where things will change and will be there for us when we feel lost in our new relationship roles.

It's not just our relationship either. Almost every relationship I have will change in some fashion. Most notably with my parents. For nearly 28 years my mom and dad have worried and cared for and kept a close eye on me. Though I still will never be perfectly healthy after transplant everyone around me will have less to worry about. It seems like this would be a huge relief and welcome respite, but again, after 28 years of certain roles it will be a huge adjustment.

It will be a big adjustment for me too. Though I've always been very independent and hated being in any kind of spotlight, I'm sure to some degree it's something I've become accustomed to. I just pray I will handle this with grace the way God wants me to. Certainly going through counseling this last year+ has helped me separate myself from my disease.

Until a few months ago I wouldn't have thought I had that problem. However, with my counselor's help I realized I really thought CF was a huge part of who I was. Now though I realize I am just me and I happen to have the challenge of CF. I've even made a concerted effort to separate myself from the disease. Where I used to say I was a CFer, now I say I'm a person/patient with CF. I know it's a little thing, but I figure if I start with little things it will eventually make a big difference.

Anyway, I got off on a little tangent there. I continue to pray and ask that you pray that this will all happen in God's perfect timing and that He'll give me His peace that surpasses all understanding. I also ask that you will join me in praying for the donor and his or her family. Please pray that they are believers in Christ Jesus and that God is right now preparing them for what will come. Please pray that they are right now having special moments with each other and making memories that will carry them through their grief.

What is kind of neat is that each time I have an anxious feeling it drives me to pray. I pray for myself and my family, but I pray more for the donor and their family. I am already feeling a special connection with them and pray that one day we will meet each other in heaven.

Almost Ready

2009-09-22T21:12:00.002-05:00

Just a quick update:

We had the family meeting today and it went really well. We got a LOT of information in 3 1/2 hours! Some new information, some clarifications and a lot of answered questions.

I need just a couple more things in order to be listed. I'll get a DEXA scan tomorrow (a bone scan). I'll also make appointments tomorrow to see my dermatologist and ob/gyn when I get home. Basically they need to check everything to make sure there is no cancer anywhere. After that, I'm ready!

On a side note...

We all went to dinner tonight at one of the local restaurants in town, Bob's Your Uncle. We really had a great dinner and great conversation. Definitely a day to remember.

Speeeeeed It Up A Little!

2009-09-17T16:47:00.004-05:00

Oh what things can change in such a short amount of time. Since I wrote last things have been put on the fast track. I suppose they've been there all along, but I was oblivious, so I guess I just noticed things were on the fast track.

About a week after the last post, I got a call from Jana asking about my vaccinations and where I was on getting them started. A not-so-long-story short, she informed me that I only need to have started the vaccinations in order to be eligible to be listed for transplant. Before, I incorrectly thought that they needed to be completed which would mean about 6 more months. With this new information things dramatically changed.

Tomorrow afternoon my family will be here in person or via phone call (Oh ya, and I'm in the hospital again) for a family transplant meeting. We'll all get the same info at the same time so everyone is fully informed and in the loop. Then if everything is in order I will be presented to the transplant board next Monday morning. If everyone agrees that I'm a good candidate then I will be immediately listed. Wow, right? Ya, it came pretty fast.

I've been through one big freak out and enough little ones to know I'm still being realistic with my expectations. I'm sure I'll be having another large one on Monday when it becomes all too real again. Thankfully, most days I spend my thought time thinking of all the things I'll be able to do when I have new, healthy lungs. The list continues to grow exponentially everyday.

The average wait time here is only 2 months, so there's a really good possibility that I'll be celebrating my 28th birthday with new lungs! This wait time is going to be somewhat torturous I'm sure, but I know I have a lot of people praying for us and I am so very grateful that we are not alone in this.

Some good friends of our family are putting together a fundraiser for us to help with all the costs that insurance won't cover after transplant. Again, so many answers to prayer so many times in our lives it's almost unbelievable. We are blessed beyond words and far more than what we deserve.

Thank you for being part of our lives.

(And for those who don't know, the title of today's blog comes from the episode "Job Switching" from I Love Lucy. My favorite show of all time :) )

Hospital, Heart-Cath, and Transplant Surgeon

2009-08-21T12:50:00.003-05:00

I just got home from my 2 week retreat in my favorite vacation spot - University of Iowa Hospital. Thankfully, this trip was fairly uneventful. Other than being tired a lot, things seemed to go well and my PFT's even went up a bit.

My first set of PFT's were 39%, to which my doctor replied "Your PFT's have always been a little hard to explain". This just goes with my freak-of-nature theory :) I think more likely, though, is that somehow, and some way, this is part of God's plan - to continually surprise even my doctors! My second set was 37%, and I think that is probably more accurate and that I just had a particularly good day the first time.

I've mentioned before that the transplant team wants me to lose some weight. Well, instead I gained about another 10lbs. I talked to my endocrine docs and we agreed that it was due to my hypothyroidism so they increased the dosage of my meds. Hopefully, in the next couple of months I'll see an improvement in my energy level and these extra pounds will come off. It will certainly help me breathe better.

This past Wednesday I had the right-heart cath done for the transplant work-up. It was an interesting experience to say the least. Dr. Hornick stopped by antibiotics on Tuesday and that night and Wednesday morning I had to drink Mucomyst in order to prepare my kidneys for the contrast dye used in the procedure. I think I've talked about that stuff before, but for a refresher, the stuff tastes and smells overwhelmingly like rotten eggs. It is the WORST stuff I've ever had to take.

Anyways, I had been told that they would go in through the artery in my groin so I was REALLY not looking forward to this procedure. That day, though, the doc came in and informed me that for a right-heart catch they go in through a vein in the neck. I was incredibly relieved to say the least. About an hour later my nurse came in and said she had to "prep my groin" for the procedure. I said "uhm, WHY?". The doctor came back and explained to me that they have to get certain pressure readings and if they can't get a proper reading through the vein in the neck then they have to do the artery in the groin also. So already I was having a roller-coaster of emotions. It turned out they needed me down there right away, though, so my nurse didn't end up doing the prep.

Once down there I had to change into a hospital gown since I always wear my own clothes when I'm in the hospital and then lay on the table. They prepped me (not one of the shining moments in my life!) and after about half an hour got the actual procedure started. They gave me 2 shots of a local anesthetic and started to put in the IV catheter. Even with the 2 shots I was still feeling the cath go in, which was somewhat painful, so they gave me another shot. With each one I felt a prick and then a burn as the anesthetic went in.

The whole thing was fairly uncomfortable. I had to lay on my back with my head turned all the way to the left so by the end of the procedure my shoulders and neck were stiff. They also made my heart beat extra beats 3 different time which kind of feels like a sudden rapid heart rate. I got an apology after each one since it did feel really strange. While the cath was in I also did a 2 minute breathing test into a computer. After about 30 minutes of pushing and pulling the catheter the whole thing was done.

All the people involved were incredibly nice. One nurse had me hold on to her hand for most of the time and squeeze when it was painful. She kept asking me how I was doing and telling me not to be so brave. Which I really wasn't. I cried a little at one point and concentrated on breathing the whole time to keep myself from completely breaking down. It's not that it was a horrible experience, but it was new and I didn't know exactly what to expect so I was nervous. I knew if I started crying a lot I would start shaking and didn't figure that would be too good while a wire and catheter were near my heart. :)

I was nauseous and had a big lump on my neck as a result of the test, but was really glad it was over. After a couple hours, Jake had all my stuff packed up and I was discharged from the hospital. We spent the night at a hotel in town, ate pizza, and played a new Monopoly game. It was good to relax together for the night.

On Thursday morning I had an appointment with one of the transplant surgeons, Dr. Parekh. He explained more of the risks involved with the surgery, and answered our questions. He is a really nice man and I know I'm going to be in good hands. After the appointment we went out for lunch, did a little shopping and headed home.

As far as I know all I need to do now is finish my vaccinations and start Pulmonary Rehab to gain as much strength before surgery as possible. I'll do that for 12 weeks and then my plan is to use a personal trainer here in town until the surgery. He will send regular reports to Dr. Klesney-Tait. She requires this so that she knows I'm keeping up with the program.

I need to talk to Jana Beaver again to find out if that's all I have left. If it is, then when all the vaccinations and rehab are done, my case will be presented to the transplant panel at a Monday morning meeting and all the members have to agree that I'm a good candidate for transplant. If they all agree then I am immediately put onto the list and then it's a waiting game.

Thank you all, once again, for your support and prayers throughout my life and this process. This is not a burden I can carry on my own, and I am very thankful that I have so many of you helping me walk this path.

Crazy Weeks

2009-07-09T23:19:00.012-05:00

The last few weeks have just been crazy for us. I'll try to sum it all up.

At the end of May I turned in my resignation after nearly 9 years at Franmar Chemical. It was quite bittersweet. I loved the people I worked with and really enjoyed my job, but working was becoming too hard on me. So after a lot of thought and consideration, we decided it was best for me to retire. Strange to do at 27. I asked my mom and dad if they felt old since their youngest daughter had now retired. They just laughed. We've had an ongoing joke that my body thinks it's twice as old as it is. So, at 54, I guess I just took an early retirement package. :)

Due to the significance of the appointment with Dr. Tait, Jake and I decided we were in desperate need of some alone time in a far off place...preferably with a beach. So, on May 28th we flew to Ft. Lauderdale, Florida. We made an agreement before we left that there would be no discussion of the trials we were facing at home. We were leaving it all behind for 6 days and just enjoying our time together. It was exactly what we needed. After six days of beach, relaxation, and a really cool car, we came home relaxed for the first time in long time.

As soon as we got home Jake started his new part-time position as Associate Director of Technical Ministries at our church. We'd prayed about this job for almost 2 years and God brought it to us in His perfect timing. Jake is now really enjoying every minute he spends working. Another answer to a long prayed prayer.

Along with that new job, Jake also took over my former duties at Franmar and continues to work part-time in the warehouse. Of course, in addition to starting a new job, accepting new responsibilities with his old job, and continuing to work his old hours...he also got selected for jury duty! A two-week long mesothelioma civil trial, where he was elected foreman. (Had to brag on him :) ) Could there have been any more? Well, actually, yes! During those two weeks he was on the jury, I was also in the hospital again in Iowa. Did I mention things have been crazy?

Those were the hardest 2 weeks in recent history for us. Normally, he and my parents come up each weekend I'm in the hospital. Now, however, he works every Sunday so he needs to come up during the week. But with all the craziness he had for those 2 weeks, that just wasn't possible. Monday-Friday, 9am-5pm, he was at the courthouse. Wednesday nights, Saturdays, and Sundays he was at church. Thursday night he did payroll. There was no time for him to come up to see me. On top of that, we couldn't even talk all that much. Generally, we text back and forth several times a day, and we talk every night. He was so tired at the end of every day, though, that our conversations had to be cut short.

The second Thursday I was there, I got a text from him around 5pm, when he normally would contact me. We chatted for a little bit then asked me if I wanted to go out to eat. I thought he'd gotten his days confused and thought my mom and dad would be up early. So, I said I didn't want to go out by myself. His next text said "What if I picked you up?". I read it and immediately started bawling. Happy tears, of course. I'd missed him so much and had been having a pretty rough time at the hospital (a lot of crying and a meeting with the nurse manager if that tells you anything). I called him right away and he said he'd be there in about 10 minutes. He purposely waited until 5pm to get a hold of me so I wouldn't know anything was up. I later found out that around noon the lawyers decided they were going to take a recess for the afternoon and the next day. Jake immediately went to Franmar, did payroll in a record hour and a half (pretty good for his second week on the job!), grabbed what he needed at home and started the drive to Iowa City. That is my man.

He stayed for the night and spent almost the entire next day with me...almost exactly 24 hours. He was told by several people that "she really needed you". And they were right. They know me and knew what I needed, but more importantly God did. I'd been begging God for just a little bit of time with Jake, however that had to happen. Though he could have gotten out of jury duty because of me, I wanted him and he wanted to have that experience. I knew it was only going to happen by God making it happen, and He did. I'm always amazed at the way He works.

Since I've been home, we have been on the search for a home of our own. This past Tuesday we found it. Yet another answer to a long prayed prayer. We'll be moving sometime at the end of August and are absolutely thrilled that we'll be on our own again.

This is a theme has popped up repeatedly in our lives lately. In His time, in His way, for His purposes, and His glory. I pray that I won't soon forget the lessons of these past weeks, months, and even years. God is faithful even when we are not and for that I am so very grateful.

Things are moving with the transplant process. I completed a few more tests while in the hospital and will go back in August to meet with Dr. Tait again. I also will have a date soon when I will meet the surgeon. I think I have just one more test before I am eligible to be listed. I will find out more about when that will be when I see the doctors.

As always, thank you for your continued prayers for me, Jake, and my family.

Read the Stats and Then Throw Them Away

2009-06-12T22:27:00.001-05:00

After some prodding (Hi, Lynn! ;-) ) I decided I should probably add to my blog. I started this 4 days ago, but it took me awhile to get it written.

When Dr. Klesney-Tait began talking to us she said "for some people this day is very traumatic". That's exactly what it was. With every statistic she gave and every complication she said I could have, the more the weight of the decision I'd made became clear. This is not an easy life and anything but an easy fix to the difficulties of CF. This is trading one life-altering challenge for another life-altering challenge. We didn't know to what extent until that day.

Some of the main points and statistics (accurate only to the point that I took accurate notes and can still decipher them):

Once the transplant is performed I will remain in the hospital for 2-3 weeks depending on how post-surgery recovery goes. After that I'll be released and stay in town for 4 weeks at a hotel while continuing to do tests and being monitored multiple times a week. (I can't remember exactly how often...it may be everyday.) After that I'll be allowed to come home, but will have to come back every month for a few months, and then gradually the visits will be farther and farther apart.

The average age of a person receiving a lung transplant is 55 years old. CFers are almost always significantly younger than that, so that is a positive thing. However, they also have a much greater risk of post-surgery infection because the CF still attacks the sinuses and trachea. (It will not attack new lungs because, CF being a genetic illness, they are different DNA.) That's why they plan on a 2-3 week stay after transplant.

Bronchoscopies are performed every day for the first couple of weeks and then on a regular basis during the 4 weeks and at each check up following for at least the first year. They basically stick a tube down the trachea into the lungs to look for any possible complications before they become a problem.

There is a 5-10% chance of mortality during the initial 2-3 weeks.

The 1 year survival rate is 87%. 5 years is 52%, 10 years is 35%, and 15 years is 20-25%.

The majority of those who die in the first year die in the first 3 months due to major complications.

50% of patients will have acute rejection episodes in the first year. If the episode is recognized and dealt with quickly, they can be reversed.

Normally only one anti-rejection drug is needed for transplants. However, we are constantly breathing in bacteria and foreign matter (think dust). So, for lungs, 3 different drugs are needed to suppress the immune system to lessen the chance of a rejection episode.

At the 5 year mark, statistically, out of the 52% of those still alive, 3 of those patients will experience renal (kidney) failure. For that reason, many people who get a lung transplant will then also need a kidney transplant. This is especially true with CF, because we've had a lifetime of strong antibiotics that greatly affect the kidneys.

Because of the drugs used to suppress the immune system, those with transplants are at much higher risk of skin cancer and become extremely light sensitive. Transplant candidates are required to see a dermatologist every year and need to have a full body check-up prior to transplant to check for anything that could possibly present a problem. (i.e. suspicious moles will need to be removed). After transplant it will be much more difficult and possibly life-threatening to take care of these things.

Eyes and teeth will also need to be checked regularly before transplant and any potential problems dealt with. Things like cataracts and abscesses can also be dramatic problems after transplant.

A different diet will be prescribed (while still maintaining a CF diet) after transplant. Things like grapefruit juice will no longer be allowed because of drug interactions. Also, no homeopathic or "natural" drugs can be taken because they are not required to have their ingredients listed and are not regulated.

Complications and challenges specific to me (not that they're really rare or anything...):

I have sensitivities (drug effectiveness against infection) to only a few antibiotics that fight the bacterias that grow due to CF. Because these are the only ones I can use before transplant, these will be the only ones effective after transplant as well. So, if an infection develops in the sinuses or trachea it will be much harder to fight (especially since I will have no immune system). Dr. Klesney-Tait said she would talk to Dr. Hornick about holding back at least one of the drugs during admissions before transplant in the hopes that it will be more effective after.

Since I've had kidney issues already (stones and nephropathy) the drugs for anti-rejection may have a greater affect on them and cause more damage.

There is a big question of when to get me on the transplant list. If I can get 6 or more months out of the lungs I have, then I need to do that, and want to do that. But you can never really know when is the perfect time...if there is a perfect time. This is especially difficult because I learned that there is also a chance of sudden death in women with CF. For this reason, where normally they would list when lung function is around the mid-20% range, they list women at more around the 30% range. I have remained fairly steady around the mid-30's for a few years, which in all reality, is not that far from 30%. To put it in raw numbers, at 34% I have a lung function of 0.97 liters. 30% would be about 0.86 liters. Not a big difference.

The news about sudden death in women was probably the hardest part to hear. All this time I kept thinking that I had another year or two before transplant as long as I stayed in fairly good shape. Hearing this news hit too close to home.

For several years CFers were not allowed to come anywhere near each other. They thought that we would pass certain bugs back and forth. This is still true, but the bad thing is that it cut us off from each other, and really the only people who could really understand what we were going through - our support system. A couple of years ago, this "rule" was relaxed so that we are now allowed to be within 3 feet of each other, or arms length. So after several years of CFer relational famine, I started talking to one of the older CFers, Lori (or rather she came to talk to me - I am way to shy to start a conversation with someone else!). Because she was older, was often in when I was, and we shared a love of Nintendo DS's, we became friends. She really helped me feel like I wasn't so crazy for a lot of the things I was experiencing.

Not too long after that I got a phone call that she had died. It wasn't a "normal" CF death, though. She had been in the hospital, went home, and a blood vessel burst in her lungs and she died in her husband's arms. Her PFT's had been in the mid-30% range for a few years and she seemed very stable. Much like I've been for the last couple of years. Needless to say, hearing from the doctor that sudden death is much more common in women shook me and Jake.

The last, and kind of weirdest thing, is that I need to lose weight. "What?!? A CFer needs to LOSE weight?" Ya...go figure, huh? About 6 years ago or so, after 20 some years of constantly struggling to keep my weight up, something happened (insert God here) and I haven't had any trouble with keeping my weight up. Actually, the majority of the time I'm about 10lbs. over what is considered my "ideal" weight (and really where I feel most comfortable). So, Dr. Klesney-Tait wants me to lose 5-10lbs. Honestly, that doesn't sounds too bad to me. I breathe better without that extra poundage.

Those are the statistics and possibilities of everything that can go wrong. It's extremely overwhelming at first glance. We got some great advice from a good friend of ours, though. He told us something like: "Yeah, those are the stats and they look pretty scary. But we serve a God who doesn't care about statistics. Throw them out. If you know this is what God wants you to do, then do it with confidence.". And you know what? He's right. Our God is bigger than all of this. We may have been surprised by what the doctor said, but God wasn't. He didn't say "Oh, my, I didn't know that!" and then change His mind about what He was going to do with me.

The Bible says our days are numbered and He knows when our last day is. Our responsibility is to follow His lead and go where He says to go even when it's scary. I'm sure Noah was a little scared when God told him to build an ark when there was no sign of a flood and everyone around him was laughing at him. Gideon was scared when God told Him to face the Midianites with only 300 men to fight the battle. And Jesus himself was so scared of the cross that he actually sweat blood. But the thing all these people have in common is that regardless of the fear, they did what the Father asked them to do. They did it because they knew who was in charge and that no matter how it looked from their point of view, they knew that if He asked them to go then there was a reason for it and the battle was already won.

I am scared. I'm scared of what doing this means for me, my husband, my family, and my friends. I'm scared to the point that I almost can't talk about it without crying. But more than the fear, I know this is what I've been asked to do. I said awhile ago that when I made the initial decision to not get a transplant I never really had peace. I was scared of the surgery and fear took me over. Now I'm scared, but I have complete peace. I'm not doing mental flip-flops on the decision. Finally, I have no doubts that this is what I want to do and that I'm following God's call for my life. I'm choosing life.

I don't know where this choice to follow will lead, and honestly, I don't know if I'll even make it through the surgery. I do know that when I wake up I'll be breathing like I never have...breathing in His blessing of having more time here with the ones I love or breathing in the sweet sight of my Savior. Either way, I can't lose.

A Photographic Journey to Iowa City

2009-05-16T22:05:00.010-05:00

So, on Thursday Jake and I drove up to do the 6-minute walk and talk to the transplant doctor for the first time. I decided to take the camera along to show a typical trip to Iowa...though I guess I've never gone for this reason before, so it's not really typical, but...oh, you know what I mean. This is gonna be really exciting, so buckle up!

I am not a morning person. At all. Morning and I? We just don't get along. And this particular morning started at 5:59am...and that was 29 minutes later than it should have started...thus this was my reward. Granted, I probably should have taken pictures of the actual doughnuts, but by this time they were long gone.

This is Jake driving. He always drives because I tend to develop narcolepsy when at the wheel. We've decided it's best this way.

This is one of the construction areas we went through.

There were only a couple. In Bloomington, Peoria, Galesburg, the Quad Cities, and Iowa City. I still don't know how we made it to the appointment on time.

This is a construction worker wondering why the chick in the car is taking his picture as she drives by.

Are those mountains in the distance, you ask? No, no. Those are just cool clouds.

This is a bridge going over the Mississippi River. Not the one we usually go over, but that one was backed up by, you guessed it...construction. I like this one, though. It gives the illusion of being extra sturdy, don't you think?

This is the Pulmonary Rehab gym I use every time I'm in the hospital and where I did my 6-minute walk. That's me over there by the glass being weighed and measured by Janie.

These are two great people. That's Jana Beaver on the left. She's the lung transplant coordinator. And that's Dr. Klesney-Tait on the right. She's the transplant team pulmonologist. I was talking to the social worker, Emily (forgot to take a pic!), and started crying. She was incredibly understanding and reassuring. Then she left the room to give Jake and me a minute to talk. Pretty soon Jana walked in and said she'd heard I was having a tough time and gave me a big hug. It's just what I needed. I'm really looking forward to working with them more.

As for the actual appointment...there was a lot of information given to us in a relatively short amount of time (about an hour). Dr. K-T was very blunt and honest about everything, as she needs to be. This means that there is a lot for Jake and me to process, and we are still doing just that. I will post later about all that we learned.

I hope you've enjoyed this photographic journey. I'll continue to take pictures and hope that they get more interesting from now on :)

Home at Last

2009-05-13T14:16:00.003-05:00

(This post seems really disjointed to me, so for that, I apologize!)

I got out of the hospital yesterday. It was a great relief due to the fact that this stay was particularly hard on me emotionally and mentally. Since December 15th I have been in the hospital for a total of 59 days. (That's 2 months out of 5, or 8 1/2 weeks out of the last 22, or 59 days out of 155. Bottom line is, it's been a lot.) Being in the hospital is always hard, but to be in so much is taking a big tole on my emotions.

I'm around people all day long - doctors, nurses, nursing aids, physical therapists, physical therapy aids, pulmonary therapists, social workers, food and nutrition workers, dietitians (you get the idea) - but I'm still lonely. These people to a great degree become friends and my "hospital family", but it's just not the same. I miss my husband, who is my best friend. I miss my friends and my family. I miss the support and the love. I talk to people online and in text messages and sometimes even on the phone (I hate talking on the phone, so...). I see Jake and my parents on the weekends. But during the week I just feel alone.

This time was really hard too, because everything seemed so hectic. Because we were trying to get a lot of the evaluation testing for transplant done, it seemed I was always being taken somewhere to do some kind of uncomfortable test. And I know it's only the beginning. There is going to be so much to come with this transplant. I'm just not sure I'm handling it well. Going to do these by myself was hard. Again, I just felt alone while doing something that is literally life changing.

I'd love to say I prayed through each one of them, but honestly, I forgot sometimes. While doing my Echo I prayed because of how uncomfortable it was, and during my CT yesterday morning I prayed because I thought the contrast dye was going to make me throw up (it has had that affect on me, but thankfully, it didn't this time). I wish it was my first response to every situation, but I know a lot of people were praying for me even when I forgot. God carried me through each test and everyday I was at the hospital.

I've learned, lately, that while situations may never change - life will always be hard - He'll give me the strength to get through each day. I'm also learning more all the time that this place is not my home. Every time I'm scared and lonely, I'm reminded that it's because we were not created to be physically apart from the Father. Our real home is with Him and we will never be wholly who He created us to be until we're with Him. I laugh sometimes when I think about the fact that I'm trying to extend my life here on earth while I so desperately want to be in the place we were really meant for. I fully stand by my decision, though. I want to do what I believe God wants me to do, which is to continue to choose life. I'm going to continue to believe, even though I do sometimes have doubts, that He has a purpose for me that I can't imagine or accomplish on my own. I can only accomplish those purposes by staying faithful to His call for my life. After all, our lives are for His glory alone.

Tomorrow, Jake and I are going back to UIHC to do the 6-minute walk I couldn't get in while I was there, and to meet with the transplant pulmonologist, Dr. Klesney-Tait. It will be a long day of traveling, so please pray for safety and that things will go smoothly.

Thank you for your continued prayers and support through all of these challenges.

Marriage the Way He Intended

2009-05-10T20:44:00.006-05:00

My nurse (who is not usually on this floor and who I just met last night) came in a little while ago. While talking about meds and schedules she asked if it was my boyfriend/fiance/husband who stayed last night. I told her that, yes, it was my husband. She then said she had been talking to one of the aids on the floor and asked him if he'd told his wife "Happy Mother's Day". He apparently said no and that she called him a "jackass". The nurse then said "I called my husband the same thing. Must be hereditary in testosterone". I was honestly just shocked that she would tell me that and had no idea how to respond. I just did that half-smile thing to acknowledge I heard her and said nothing. I wish something would have come to mind, though I'm afraid it would have been some smart aleck comment that would have done more damage than good. Several things came to mind afterward, of course. If you tell a complete stranger that you've called your husband a thing like that, I'm sure it's safe to assume it's a pretty common occurrence. So, something along the lines of "So are you getting divorced soon? I know if I called my husband that repeatedly, he'd certainly not have a lot of motivation to stay with me". Or "Does he call you things like that too?". Or "I guess you don't have a lot of love for him, huh?". But like I said, I'm sure these would have done more damage than good.

After going through all the inane possibilities in my head, I started thinking about marriage. It's a passion of mine, to experience and encourage marriage the way God designed it to be. I have a specific passion to encourage women to treat their husband's with respect, to give them encouragement to lead their families, and to build them up whenever possible. This, of course, always means that we as women need to hold back when we want to yell, allow them to have the final say in all decisions even when we may not agree, search for every possibility to tell them we're proud of them, and to talk more about their accomplishments than supposed failures. It's not always easy, but when you look at the job they must do, I think our part pales in comparison.

Marriage is the picture of Jesus, the Groom, with His followers, the Bride. Jesus took our sins on Himself, and died in our place so that we could have life. Husbands are held accountable for their families; for their wives and children. They report directly to God for our sin. After all, it is his job to be the spiritual leader. They are also required to be willing to die for their wife.(See Ephesians 5:25-33) Can you imagine greater responsibilities than those? But we as wives make their jobs nearly impossible sometimes. Have you ever tried to lead someone who obviously didn't want to be or refused to be led? Have you been around someone who put you down all the time or called you names or yelled at you for forgetting an event or was constantly telling you you did something wrong? It probably made it downright unbearable to be around that person, right? You may even have cut ties with that person because of their personal attacks. It's the same with husbands. God has not only required them to, but has placed in their hearts the desire and the ability to lead. It may not be the way you think they should lead and they may be completely apathetic about that calling, but that is not our part or our responsibility. Our part is to *gasp* submit. It's a nasty word, I know. But that's the truth. We are called to follow our husband's lead. (See Ephesians 5:22-24 and notice that where the men have 9 verses dedicated to their role, women only have 3.) That's it. Whether you knew it at the time or not, when you said "I do" you were really saying "I will follow". That IS our part. It was a choice. If you didn't want to be led, then quite honestly, you shouldn't have gotten married. If you're already married, then you need to follow. There is no gray area here. Now, of course, there are exceptions. If your husband is leading you to do something clearly against God's Word and will, then you should not follow. But that is the only exception. It's a tough task, but we're strong women, right? We are up to the challenge.

So, thinking about what that nurse told me. Can you imagine calling Jesus that name? (I can't even bring myself to put those two names in the same sentence!) I'm not saying your husband is the perfect Savior sent down to heaven to rescue us from sin. Your husband is a fallible human being, capable of mistakes...but let's face it, so are you. So, unless you're prepared to hear the same things in response to your mistakes, refrain from saying things like "I told you so" to your husband when a mistake is made.

Just to perfectly clear, I am not perfect at any of this and make no claim to be. You're welcome to ask Jake about mistakes I have made in our relationship. I'm not proud of any of it and try with all I have to be the wife I want to be and who God has created me to be. The point is to make progress. If you're exactly where you were when you got married then you probably have some work to do. If you've made progress, don't be too quick to pat yourself on the back. You'll make plenty of mistakes to make up for any progress. But make progress. Move forward. Don't stay stagnant in your relationships with either man in your life (God first, husband second).

And if you want to make your hubby feel extra loved, tell those around you how proud you are of him. Point out the wonderful qualities he has and the little things he does for you. I promise you, word will get back to him what you say about him, whether good or bad, so make sure it's good. There are plenty of people in the world who will want to tear him down. Make yourself the person he comes to to be renewed and refreshed. He'll want to come home, and he'll want to be the husband God has called him to be.

I'll step off my soap-box now...

One last thing...I am obviously not ready to do anything with this passion if the previously mentioned thoughts are the first ones that come to mind. I need prayer! :)

Chillin'

2009-05-08T16:24:00.002-05:00

My day started off a little rough. They tried to draw all my labs this morning but for the first time ever, my port decided not to draw blood. So, we finished my antibiotics for the morning and am hoping that by tonight it will decide to draw. Otherwise we'll have to change needles again and see if that works.

At 12:30pm I went to do bunch of PFT's. The one I normally do is called spirometry, but this time I did that and 2 other tests. All together it took 2 hours to complete. By the time I got back I was pretty wiped. I ate a late lunch and then decided to treat myself to a little relaxation.

The hospital has 2 "Massage Oasis" spots, so I went down and had a 30 minute chair massage. Holy cow. I've never had one, but I think I'm now addicted! I always have rock hard muscles in my back, neck, and shoulders and when I come in the hospital they get even worse. Dr. Hornick was explaining accessory breathing muscles when I was admitted. When you're breathing hard (usually during aerobic exercise or the like) you use muscles in your neck and shoulders that you don't usually use during normal breathing. However, when there is significant lung disease, breathing becomes harder and then those muscles are used much more often and can become tense. When I came in, those muscles were particularly tight. He showed me something I can do to take the pressure off of those muscles which does help. But after sleeping on these hospital beds, everything gets tighter, so hence the massage. It was great!

After that I decided to further treat myself and got a cup of coffee at one of the kiosks. It's a Caramel White Chocolate Mocha. It's Ghiradelli chocolate and caramel, so it's quite tasty :)

While writing this my nurse came in and we tried my port again. It worked! Woohoo!

Jake is on his way up along with mom and dad, so I'm pretty psyched for that. In the meantime I'm just chillin' out and enjoying my coffee and unusually relaxed muscles.

Should be a good weekend :)

Evaluation

2009-05-07T16:48:00.002-05:00

Today started what will be a slew of tests to evaluate whether I can have a transplant. I had an EKG and an Echo. It wasn't bad, except that the person who did the Echo was a guy, so that was a little uncomfortable. But I'm sure I'll go through much more uncomfortable things than that so I may as well get used to it.

Tomorrow I'm going to get a LOT of blood taken. There is apparently a stack of order an inch thick. Thankfully most of it will come out of my port so I'll only get stuck for a Tobra trough that was already scheduled for tomorrow.

The original plan (this morning's plan at least) was to do the chest CT tomorrow, but Dr. Hornick decided he didn't want me doing that while I'm on antibiotics. So, we've tentatively scheduled that for next Thursday. That could change depending on how well I'm doing next week. Contrast dye, which they use in CTs, is hard on the kidneys. The antibiotics I'm on now are also hard on the kidneys. So, he will take me off of the antibiotics the day before I go home and have the CT be the last thing I do before I leave. When I get taken off the antibiotics I'll then get to do a wonderful tasting neb called Mucomyst. (I'm not exactly sure how it works, but it's an antioxidant that will help the kidneys.) This stuff smells and tastes like rotten eggs. I'm not even close to joking. We used to call it puke-o-mist or other appetite-wetting names. It's really horrible stuff.

I'll still have my appointment with the transplant pulmonologist (not the surgeon as I incorrectly stated yesterday) on Thursday as well. Sometime in the next week I'll also do the 6-minute walk test.

As for this hospitalization, things are getting a little better everyday. My chest isn't nearly as tight as it was and the wheezing keeps improving also. I'm hoping to see a better PFT number on Tuesday since the one this past Tuesday was only 29%. I feel a lot better than I did, though, so I hope that's a good sign.

And, just because I want to brag (I've NEVER been able to brag about this!): My A1C number was 6.4% this time! Woohoo! I'm kinda proud of myself :)

Lung Transplant Decision

2009-05-05T18:48:00.005-05:00

FINALLY, a new post!

Well, after praying and thinking about it for months I've finally come to a decision. I will be going through with getting a transplant. Here's the when, where, why, and how:

When: My lung function has been around the mid-30% (when I'm at my best) range for awhile. I won't get listed until I'm in the mid-20% range. They figure that by the time you're there you'll need the transplant in 2 years or less. So, hopefully I won't get listed for awhile. Since CF is so unpredictable, they want to have things in place in case things change for the worst quickly. I have an appointment on the 14th to do some of the testing, but since I'm already in the hospital, Dr. Hornick said we'd try to get this set of tests done while I'm here. I'll be having a chest CT, PFT's, a 6-minute walk test, and I'll talk to the surgeon.

Where: Here at UIHC. They've had a program since the 1990's, but didn't have a surgeon for several years. They got one again a little over a year ago. It's actually what started me thinking about it all again. I love the people here, I love the doctors, and I love the town. Sometimes being comfortable and trusting the people you're working with is more important than going to the absolute best place in the country. Though, Iowa does have a great track record. Also, since they're relatively new, the list is relatively short so my wait should be pretty short once I'm listed.

Why: Like I said, I've been thinking about it for awhile...again. :-P What finally got me was when I heard one of the girls I've known here for a long time, Jamie, got her transplant in December. In January my PT aid, Amanda, was telling me about how Jamie's last few days before the transplant went and how she was doing since. I started crying. Granted, I cry a lot, but still, I didn't know why I was crying. A couple of years ago when I was seeing a counselor (seeing one now too, but a different one) she told me that whenever I cry there's an emotion behind it and I need to figure out what that emotion is. So, I thought about it and figured out I was crying because I really wanted that chance. I wanted the chance to breathe a full breath and even if I only had that for a minute, I wanted the chance. I realized how much I really wanted a transplant. So after talking to Jake, I decided to pursue it. I told Dr. Hornick I was re-thinking my decision and he got me in contact with the transplant team. It's all gone pretty fast. I've talked to the transplant team's social worker and both lung transplant coordinators. After a lot of prayer and thinking I was almost 100% sure I wanted to do it. For the past couple of months I've been devouring books. I don't know why I suddenly want to read all the time, but I do. I've totally fallen in love with Karen Kingsbury's books. She's a christian fiction author and her books really make me think about a lot of things. So, I was reading one of her books and in this one in particular she was talking a lot about choosing life in all circumstances. When I was done I read the author's notes and she said her dad had been diagnosed with cancer and though he was told it may not do anything for him he decided to go ahead with really aggressive treatment. She said that her dad had always taught them to choose life. I looked up a verse she referenced, and although it was not quite "you need to get a transplant", it really confirmed my decision. I know that in context it means choosing God and ultimately, Jesus Christ, but still...I think it fits. The verse was Deuteronomy 30:19 - "Today I have given you the choice between life and death, between blessings and curses. Now I call on heaven and earth to witness the choice you make. Oh, that you would choose life, so that you and your descendants might live!". So, although it may not last more than a minute or even less, I want to choose the chance at life. And if that's all I get I still get to live - just in a different place. Either way, I win. :)

How: It's a complicated process as you can imagine. I'm going to try to chronicle my lung transplant journey on this blog, so you can all see how it happens with me. Things are overwhelming right now. I have such a mix of emotions...from anxiety to excitement. Part of the process is to meet with a psychiatrist so that's gotta tell you that this is a stressful and emotional process.

I would love for you to continue to pray for me, my husband and family as we go through this. Some specific prayer requests:

*Please pray that I will put my faith in God alone. During my emotional ups and downs I want to draw on His Word for strength. I've tried to make a point of reading something from the Bible when I find myself starting to stress out, become depressed, or worry. I want this to be my first reaction rather than my last resort.

*Pray that I will keep an eternal perspective in mind. When I worry what people will think or how they will view me, I lose sight of my purpose - to bring glory to God. When I concern myself only with how God views me and what I am "storing up in heaven" I am much more likely to be bold in my faith.

*Please pray that my family will be united in this. No family is immune to problems and there are bound to be problems that come up in this stressful time. Pray that we will all be reminded that we need each others support, need to love each other, and can use this time to renew and rebuild relationships.

*It is very easy for me to do everything to distract me from my emotions rather than actually dealing with them. Please pray that I will talk about the emotions, deal with them, and most importantly take them to God in prayer. He gives peace in a very unpeaceful world.

*Please pray that God will give me courage. In my weakness, His strength is made perfect and I pray that His strength and glory will show through me.

The Weekend and The New Digs

2009-02-09T15:45:00.003-06:00

I'm feeling so much better. Dr. Hornick took me off of the Lisinopril (blood pressure meds) last week and by Friday I was feeling pretty good. Apparently, one of the side effects of that med is spontaneously developing a cough, so he thought it might be part of my problem. Combine that with my blood pressure dropping and the dizziness and it sure seems like the right thing to do. He's going to talk to my endocrine doc (Dr. Doelle) to see what other med I can be put on for the nephropathy.

I'm feeling so much better, in fact, that when I did PFT's on Friday I blew 35%! That is back to my baseline and that makes me VERY happy! :) I was on such a high after that that I didn't take a nap at all, but then was exhausted by that night. Oops. Oh well...I have to take what I can get when I have the energy to have it!

Jake and dad came up Friday night and stayed for the weekend. When it's just me and "the guys" we tend to talk about different things and do different things. I love when my mom comes up, but it's nice to just have dad sometimes too.

We went out to lunch on Saturday at Bennigan's and spent 2 hours just talking. I love when this happens. Just getting to sit around, munching, and discussing that things that are going on in our lives. You'd think that since we live with my parents that we'd get more times like this, but they are very respectful of our privacy and need to have our time, and we try to do the same with them. So, it's just nice to talk and go over the things that are happening...and there's always something happening.

I love my dad's heart and hearing him talk about the things that are pressing on it. It lets me know how to pray for him and how I can try to encourage him. I hope that I can give back to him, even a fraction, of what he's always given me.

On Sunday we tried a new restaurant in town that we decided we won't do again. It was a little barbecue place and the food was okay, but it took over an hour to get our food (which I guess is normal) and we just weren't impressed. Again, though, good talks and it's always fun to try something new.

We spent the rest of Sunday afternoon at Barnes & Noble and amazingly made it out of there with a very small bill. We got a couple of good books and I'm already pretty far into mine. It's a nice distraction while I'm here.

I realized over the weekend that I hadn't even mentioned the new floor. Well, for good reason :) The "ward" that was previously known as PICU or Pulmonary Intermediate Care Unit, is now known as RSCU or Respiratory Specialty Care Unit. It's not all it was cracked up to be. It is not at all warm like the old PICU. It had fake hardwood floors and cozy colored walls which made it very homey. Not here, though. The whole floor is coated with sterile white walls and floors...okay, maybe beige, but still. The lights are so bright I think they may have once planned to do surgeries in the patient's room. Thankfully, they're talking about changing the bulbs.

The majority of the rooms ARE bigger, but the two rooms I've had so far and actually even smaller than the old ones. With all the stuff I bring up here, it is a little claustrophobia inducing.

We do have flat screen TV's, but if you have the lights on there is a big glare. We also have DVD/VCR players, but unfortunately the remotes have already disappeared and there is not way to navigate the menus in the DVD's from the box itself. Somebody at Zenith was not thinking there.

Really, the hardest part is that these nurses/nursing assistants/respiratory therapists/housekeeping staff just don't know us. They don't know our routines or Dr. Hornick's. It's a tough break in period. I didn't realize how much our old nurses just knew us (and even each of us individually) and knew how Dr. Hornick operated. It's really little things, but little things add up.

We were never woken up before PT came in to do CPT on the other floor. Vitals waited until we were fully awake. Housekeeping would wait until after 12:00pm to come in. Things like that. Then there's things like flushing the line really well after administering Tobramycin to make sure levels would be correct later and how often all the tubing needs to be changed. Dr. Hornick has specific guidelines and everybody on this floor is learning. Everything will get to where it needs to be, but in the meantime things can be a little frustrating for everybody involved. I'm just hoping for some dimmer lights and maybe a bit of color.

A Little Better Everyday

2009-02-05T21:22:00.004-06:00

I'm feeling a little bit better today. I've gotten 2 good nights of sleep and am napping at least a couple of times each day. I'm also eating more normally so that's giving me some extra energy too. I am still tired most of the day, but it's nice to be able to fall asleep now when I do get tired. I'm still having trouble with my sinuses so I'm having odd coughs and getting, uhm, well...little chunks out of my nose (sorry if that's gross). It's definitely getting better, but it is pretty annoying.

Exercise is going okay now. My blood pressure is staying in the normal range and I walked down today instead of using a wheelchair, so there's definitely been progress made. I'm still pretty far from my baseline exercise tolerance, but for everything I've been going through these last couple of months, I think that's okay. I'll get there...it's just taking longer than usual this time.

Dr. Hornick wants me to do PFT's tomorrow, so I should have a number to give you by tomorrow night. There's some other numbers that aren't as good as last time. I was really excited about my Hemoglobin A1C test last time I was in (it was 7.2) but this time it was 8.2. My body went through so much during the kidney stone stuff and my blood sugars took a backseat during all of that. I'm working on that and it seems that my sugars are already getting under much better control. I'm incredibly thankful it's happened as quickly as it has.

Dr. Hornick is at a conference or something (can't remember what he said for sure) through the weekend so Dr. Stoltz is taking over for him. I really like Dr. Stoltz and since most everything has stabilized I'm completely comfortable with Dr. Hornick not being here.

There's not a whole lot else happening right now. Since I've still been so tired most of my day is spent lying down or asleep...not too exciting. I'm not nauseous anymore so I'm going to ask Dr. Stoltz if we can start my iron again in the hopes that I'll get some energy back and not sleep quite so much. Then maybe I'll have more to blog about :)

Until tomorrow...

A Sleepy Update

2009-02-03T17:57:00.003-06:00

This admission has been a little rough so far. Up until today, I still felt nauseous most of the time and therefore didn't eat much. I'm not sleeping well because of coughing during the night so I'm sleeping a lot during the day and am just generally exhausted. Because of the way I'm coughing, Dr. Hornick said it's sinus related so I'm on 3 different nasal sprays. My Tobramycin levels are already high so today I was switched to a 24 hour schedule instead of a 12 hour. But not until I had to get blood tests 4 different times.

I'm a tough stick and it's showing more this time. The first time I got blood was for levels (1, 2, and 3 hours after getting the Tob). 3 draws, 4 sticks. The rest of them were for troughs (right before a dose). #1: 1 draw, 1 stick; #2 1 draw, 2 sticks; #3: 1 draw, 1 stick. This wouldn't sound so bad except for that they've been pretty painful. The one I just got about 20 minutes ago was, at least, sitting next to a nerve. I didn't scream, but came darn close. It was on the knuckle of my pointer finger...there just weren't other veins popping up.

I'm also on the Meropenem (the one that makes me sick for the first few days) so I had fevers, and it made the nauseousness worse for awhile. I've had night sweats every night so far, which are miserable. I've had them several times before and it's just a result of the infection being fought off, but it doesn't make it any more comfortable. I'm looking forward to those going away!

My third antibiotic is Cipro(floxacin) and thankfully there are no side effects from this one. I'm very thankful for that.

I started exercise yesterday without incident. Today, though, the light-headedness/dizziness I've been having since getting the stent out changed that a bit. I've been having lower blood pressure readings since the kidney stone stuff and when I went to exercise it dropped. I was told to stop and go back up to the room. I like to push myself when I'm down there, but I was happy to give it up today. I've been using a wheelchair to get down there because of the dizziness so I returned safely to my room and have just been hanging out since.

I know this is kind of a jumble of stuff, but I wanted to get out an update and I'm just so tired, this is all I can do for now. Sorry about that! Hopefully things will be getting straightened out in the next few days and I'll return to my normal self...well, as normal as I can be :)

Thank you for your continued thoughts and prayers!

P.S. Just had a cool/weird experience...Peoria, ISU, and Bradley were all just mentioned in a news sports story. Very cool to hear stuff about the hometown area, but weird because nobody ever knows where I live! :-P

Two Blogs for the Price of One Day - & - Admission #65

2009-02-01T20:51:00.001-06:00

Jake wrote an entry to tell the story of what happened when I was going through all the kidney stone drama. He did a great job of explaining the whole ordeal, so if you're curious, give the previous entry a read. (It also leaves off where this entry picks up.)

Last Friday I got the stent out. I was queazy from the moment it was removed but was trying hard to keep my cookies where they belonged. Since I had been nauseous the whole time it was in, I figured it was no different. Jake and I went to Steak 'n' Shake to get something to eat, as that was the only thing that was sounding good to me for awhile. I ate a little bit of cottage cheese (yes, I know that's a weird food to eat when you're nauseous, but it had worked thus far) and a little bit of soup and I was done. We had decided to stay the night in town and do a little shopping the next day, so after eating we went back to the hotel. It had been about 2 hours after the stent had come out, when I started having a coughing spell...and pretty soon my cookies fell on the floor...and my jeans...and my socks. I suddenly felt horrible and so much better at the same time. For one, I had packed "light" (at least for me) and so the jeans I was wearing were the only pants I had brought. Second, I had just tossed the cookies all over a hotel room floor and that is just plain embarrassing.

Jake was awesome, as usual. He quickly started cleaning up the floor, and me and somehow managed to not toss his own cookies. (I still don't know how he did that.) Pretty soon the floor was clean, and he was preparing to take my jeans and socks to a laundry mat. When he got back he surprised me by having gone to the local Goodwill store and picking up 2 games. He didn't know how I'd be feeling so he thought he'd get something for us to do. I felt so much better after having some time to settle down. We spent the rest of the night eating a little dinner, watching TV, and playing Tri-Bond. It ended up being a pretty good night :)

The next day we went to the Coral Ridge Mall (if you're ever here in Iowa City/Coralville you have to check it out. It's huge!). I had to stop and sit a lot during the day and I was exhausted by the end of it, but it was a lot of fun to spend a semi-normal day with my hubby. We don't get to do things like that nearly enough.

For the next week my nausea got progressively worse and I started developing cold-like symptoms. On Thursday I finally sent my nurse practitioner, Beth, an email explaining my symptoms and asking advice on what to do...hoping that I didn't have to come in for another admission. She got back to me pretty quickly and delivered Dr. Hornick's news...I needed to come in. And here I am.

I'm getting pretty tired again, so I'll stop for now. More details on this stay later.

Kidney Stones from the Perspective of My Loving Husband

2009-02-01T20:06:00.002-06:00

Sorry this took so long to put together. I hope this gives people a better idea of what happened through all of this. Jake

On Monday, December 15, Becky went down to Hopedale’s emergency room after I got off of work. We thought that it was going to be a quick, confirm it’s a kidney stone, get a pain med kind of trip. Well, that turned into something a whole lot more. We spent the night at Hopedale still thinking that it was going to be a short trip and then we would be sent home the next morning. Tuesday morning Dr. Matt got a second x-ray and cat scan to see if the stone had moved any, but when he compared the scans, nothing had changed. So, he arranged for Becky to be transferred to Methodist Hospital the next day so the stone could be extracted.
We got to Methodist about 10:30 on Wednesday, and by the early afternoon, she was going into surgery. Becky’s parents came over to be with her because she was really nervous about going into surgery, and understandably so. Surgery is very hard on completely healthy people, but when you add in her complications from CF, it is a scary event. With her CF, it is basically the shorter time you’re under, the better. The three of us stayed with Becky, calming her down while the doctors communicated some last minute information with her doctors in Iowa. The surgery was meant to be a 5 minute in and out procedure, and the anesthesiologist assured us that it was a literal 5 minutes. When she went into surgery, we were escorted back to the surgery waiting room, where a receptionist checked us in and handed us a pager, which would alert us when there was an update. As was expected, we received a page just twenty minutes after she went into surgery. We went up to the front desk and the receptionist told us that the doctor would talk to us in the first consultation room, which were these rooms just off the waiting area where doctors could talk confidentially with family members. We waited about five minutes for the doctor to arrive, and when he did, we received news that was not expected.
The doctor told us that the stone was very large, somewhere between six and eight millimeters. It was so large that they could not get anything around the stone to try and pull it out, and when it is that large, pulling it out could cause damage to the ureter, which is the tube that goes from the kidney to the bladder. He said that all he was able to do was get a wire beside the stone, and when he got through, puss started to come back through. This was a bad sign. He told us that when there is puss behind the stone, the patient has a fifty-fifty chance of survival. What happens is urine that is behind the stone has nowhere to go so it sits in the tube, which is a breeding ground for bacteria. If the bacteria gets concentrated enough, it can back up into the kidney and then into the bloodstream. Once it is in the bloodstream, there is no chance for survival. The bacteria moves too quickly for any antibiotics. The only option was to insert a tube from her back into her kidney to drain the puss that is behind the stone. Then, they can combat the infection and hope it hasn’t spread into the bloodstream. Once I consented to the surgery, we were immediately transported to the Interventionary Radiology Surgery area. The doctor who was doing this surgery was a specialist in minimally invasive surgery. He would use cat scans and xrays to fed the tube into her back, through her kidney and into her ureter. When we got close, we were told that Becky had requested to see us before she went into the second surgery so we were directed over to a gurney by a set of double doors that was surrounded by people in surgical scrubs. We only got to see her for a minute or so before they had to take her away, and then we went into the waiting area for the longest wait ever, which was actually a little over an hour.
When the doctor came back out after the surgery, he said that the urine that he collected out of the kidney did not look too infected, which was the best news that I had heard all day. He sent the sample off to the lab to have it tested for the type of bacteria that had grown in the urine. I was so antsy to see Becky that I couldn’t sit down again. Finally, Becky was moved back up to her room.
After having some time to reflect on what happened, I was amazed because God, once again, spared Becky. When a surgeon says that the puss coming out of a hole “does not look good”, I’m pretty sure that he knows what he is looking at. But then, the second surgeon says that the urine does not look too infected, he knows what he is talking about. And the ultimate God-incidence, the lab report came back and stated that there were no bacteria in the urine. Only God can take a puss that “doesn’t look good” and turn it into no bacteria at all.
Once Becky was back in her room, little did we know that we had a whole other set of problems that would arise. Becky and I were really confused on what was happening at that point because the stone was still in her ureter, she now had a tube coming out of her back, she was doped up on pain meds so she was sleeping most of the day, and nobody was telling us what was going to happen next. In the next couple of days, we saw probably ten different doctors. They were split into three different groups of doctors. One group was the urologists, who were watching everything related to her kidneys and the kidney stones. The second group was for general medicine. They monitored everything else that wasn’t related to the kidneys, which meant they would keep an eye on her CF and diabetes. And the third group was the two surgeons who had done the surgeries that she had already gone through. They were the only familiar faces that we really were able to recognize. There were several frustrations in dealing with these groups of doctors. First off, we rarely would see the same doctor twice. In the five days that we were there, we would see a new doctor who would make the rounds for that department, and each time there was a new doctor, the same set of questions would be asked. It was quite obvious that there was little to no communication between the doctors, which did not give us a great deal of confidence in them.
The general medicine doctors, in particular, were alarmingly incompetent. The morning after Becky had the two surgeries, one of the doctors from the general medicine group came to talk to us an introduce himself. He explained that he would monitor everything that wasn’t kidney related and so he was asking general questions about health history. Then he started asking about her CF. One of the first questions he asked was “how long have you had cystic fibrosis?” Becky and I were both shocked and scared. For those who are not as familiar with the disease, cystic fibrosis is a genetic disorder…which means you are born with the disease. I could understand if the doctor was not very familiar with the disease, or didn’t know how to treat the disease, but if the doctor who is supposed to be monitoring the disease doesn’t even know what it is, I’m not going to trust anything that he recommends.
The next morning we were in the same situation that we were in a couple of days ago. The urology docs had mentioned about five or six options that we had in terms of dealing with the stone, but they never stated what would be the best choice in our situation or what they were planning to do. They approached it as here are the choices but we’ll let you make the decision even though you don’t know as much about the situation. I felt like we were in that commercial where there is a doctor talking on a phone and he is talking somebody through a surgery, and they show the person on the other end of the line is a guy with a steak knife in one hand and the phone in the other, and he says, “shouldn’t you be doing this?”. So we were both confused and frustrated. We really didn’t know what to do. Later that same morning, we talked to the physician’s assistant to the general medical doctors, and she just asked a couple of questions about how Becky was feeling and about how her pain was doing, then she left. About a minute later, she came back and nonchalantly said that she forgot to mention that Becky’s hemoglobin was low and that she will probably need to get a blood transfusion. The assistant would have walked right back out the door at that moment if we didn’t stop her to ask her a couple of questions. We found out that her hemoglobin was right at the borderline of being too low so we decided to wait and see if it would come back up on its own. At this point, Becky just wanted out of that hospital. Neither of us trusted the doctors there, they had no idea what kind of problems could arise from her CF, and they didn’t seem to know what they were doing. All these complications seemed to be coming up and we just wanted to go to Iowa City where we know the doctors are capable and her CF docs could monitor what was happening.
So we told the nurse we were going up to Iowa and asked if Becky could get a medical transport. We found out that because Becky is on Medicare, the medical transport would not be covered because it would not be considered medically necessary because the hospital where we were at could do everything that another hospital could do… and if you believe that I’ve got a nice bridge in Brooklyn that I’d like to sell you. Becky’s mom was with us so she was making the arrangements in Iowa City while we tried to get everything with doctors sorted out, which was a hassle because there was a time crunch. This was the night that huge ice storm came through the central part of the US. There were ice storm warnings out for most of central and northern Illinois and all the way through Iowa. We had about four hours to get Becky released and then make the two hour drive up to Iowa City. Becky’s mom got in touch with Becky’s CF doc up in Iowa and he was very concerned about what was happening and about us trying to beat the ice storm, and he let us know that because it was a Friday, there would not be much difference between staying where we were and going up to Iowa at that point because either place would simply continue the same routine through the weekend and then try and do something on Monday with the stone. Once we knew that, we decided to stay for the weekend and then go to Iowa on Monday.
Later that night, Becky’s nurse was in her room hooking up an antibiotic into her IV and was just reviewing everything with Becky because she had just started her shift. She left to go get something and when she came back, she told us that the latest blood work had come in and her potassium came back high. This is something that can really mess with your body because potassium is what powers your heart. If your potassium is too low or too high, it can throw off your rhythm. So Becky had to drink this nasty brown liquid, which looked like some dirt, clay, and sand were all mixed together and then some NyQuil was thrown in for flavor. The liquid would help bring the potassium back down but Becky also had to wear a heart monitor overnight just to make sure that it had not affected her heart.
About an hour later, the nurse came in with a bag of fluids, which confused us because she had just changed the bag not that long ago. She told us that there was potassium in her bag so the doctors wanted to switch her over to one without any potassium. It didn’t really sink in until later that there was potassium in the bags of fluid that had been going through her IV for the last 3 days. Also, because she had the kidney stone, the fluids were being pushed through at a high rate, 100mL per hour. This just made us mad. The doctors could have potentially damaged Becky’s heart if they had kept pumping potassium into her body. The next day, Becky asked one of the doctors in the general medicine group if her high potassium could have something to do with the blood pressure medication that she was on. She is on the blood pressure medication because of her kidneys. Apparently it helps reduce the strain on the kidneys somehow, I don’t really understand it. Anyway, the doctors response was, “You’re blood pressure wouldn’t have anything to do with this.” Becky then had to explain that one of the side effects of the blood pressure medication was potential potassium imbalance. The doctor then had to look at Becky’s chart. And his witty reply…”Yeah, that might have something to do with it.” It was very comforting knowing that the doctor did not have a clue what he was doing.
Later on that night, Becky asked about her blood sugars because they had been all over the place, her sugars were running between 250-350. She had not been on her normal insulin regime, which the docs would not put her back on because she was on the surgical floor, and that’s just how they did it on that floor, but even with that, it still didn’t make sense that they would be running that high. The nurse was also confused and thought about it a little and said that she would ask about that. When she returned, she informed us that her meds had been mixed in dextrose, which is standard practice for IV medications; however, for diabetics, they run meds through normal saline so their blood sugars do not spike, like Becky’s had been doing. At this point, we were completely frustrated with the hospital and were just waiting until Monday so we could go up to Iowa. To add insult to injury, because the doctors were pumping so many fluids into Becky, her blood had actually been diluted, which would make the hemoglobin seem low, which means that a blood transfusion should never have been on the table. As soon as they dropped her fluids, her blood count went back up.
After all that, the weekend was fairly uneventful. Becky was still sleeping a great deal because her pain meds were knocking her out so I kept myself occupied with TV and magazines. Looking back on the decision to stay, we were very thankful that we did not try to beat out the storm. When Monday rolled around, we were ready to get out of that hospital. Our biggest concerns were making sure that Becky would not be in pain on the trip and making sure we got up there safely. For the pain, the nurse was able to get some vicodin for Becky right before we left, which was able to get her up there under manageable pain. The drive up there was a little scary at times. First off, the temperatures were bitterly cold. I think that day had a high in the single digits. There were also all kinds of cars that had gone in the ditch, and we even saw a couple of semis that had rolled over. The roads were clear for the most part, but there were a couple of areas where there was some patchy ice, but we were able to make it safely.
Once we got there, we were again a little confused as to what was going on. Shortly after we got up to Becky’s room, her CF doc came in to see how everything was going. We were under the impression from the previous communications that we would go up there on Monday and get into surgery to deal with the kidney stones. Well, when we got there, we found out that there were not any openings for surgery that week because it was the week of Christmas, which was a little frustrating. But once we talked to the urologist, he said that because of the bad weather that was yet to come, there was a possibility for cancellations. So in the mean time, her regular CF doc wanted to get Becky as healthy as possible for the surgery, which helped with the frustration level. The unfortunate part was that in getting Becky as healthy as possible for surgery, we would have to stay in over Christmas, which was, amazingly, the first time that she has ever had to be in over Christmas.
When we were able to talk to the urologist again, he told us that they had an opening on Jan. 6th , which he had penciled us in for. He convinced us this was a good idea to take this because the next opening wasn’t until the 26th of January. So we opted for the 6th. When he was going over the basic routine for the surgery, he mentioned that the surgery would be done under a general anesthetic, which caused both of us to tense up. Under general anesthetic, they have to intubate, which is where they stick a tube down your throat and put you on a breathing machine so that you can breathe during the surgery. This is what happened a couple of years ago with her ICU incident so the thought of her having to be intubated was scary. So we mentioned to him that the other docs we had worked with in Peoria were planning to do this under a local and asked to see if that would be possible. He said that he would ask about it.
The next day, the urologist got back with us and told us he had talked to the surgeon we were going to be working with and said that it is possible to do this under a local, but it is not recommended. Under a local, there is potential for the patient to move, which could result in the wall of the ureter being punctured. At that point we still wanted to go with the local because of the complications the general would introduce with the CF. A little bit later the anesthesiologist came in to talk about the surgery, and he knew that we wanted the local so he stoically mentioned that if the local didn’t work then they’d have to go to a general anesthetic. This again freaked us out because it felt like the only people that cared if this was done under a local was the two of us. After the anesthesiologist left, we were able to talk to Becky’s CF doc again, and he was able to calm us down. He told us that he talked to the urologists that were going to be doing the surgery, and could understand their point about doing the surgery under the general. He then told us that the general is not necessarily a bad option because the main concern with doing the surgery is actually being immobile for a long period of time. The immobility actually is worse than the intubation because it allows for mucus the clog up the lungs more. So the more important issue was how quickly Becky would be able to get up and move around after the surgery, and with the local, it would actually take more time to recover from that than the general anesthetic. At that point, we felt assured that the general anesthetic was the best option.
After another week in the hospital, we both wanted to get out for a while. We had already been in over Christmas, and the plan seemed to be for Becky to stay there until the surgery, which was another week away. Neither of us was really fond of the idea, and we had some family back home that we hadn’t been able to see because of this. So we talked to her CF doc and convinced him to let Becky go home for the week before the surgery.
The surgery was scheduled for Tuesday, January 6th, so instead of trying to drive up the morning of the surgery, we drove up Sunday night and stayed at a hotel, which worked out really well. The day of the surgery went amazingly well. We were told to check in about 10:30 that morning. We got there about 10:30 and waited for probably 20 minutes before they took Becky back to get prepped. She had to go through all the normal surgical procedure: making sure she hadn’t eaten anything after midnight, getting the surgical gown on, double and triple checking the procedure, etc… It was right about noon when she went back into the actual surgical area. The surgery took about an hour and a half, and when the surgeon came out to talk to me, he said that everything went really well. The stones that they broke up were harder than expected, but they were still able to break them up. They had to leave the stent in because there were a couple of fragments that were still up in the kidney, and that would be taken out in a couple of weeks. The greatest news was that they were able to take the intubation tube out right away, and Becky was sitting up and doing pretty well. When I was finally able to see her, she looked really good and felt pretty well. Her throat was a little sore from the intubation, but other than that, she felt pretty good. At that point, it was mainly the pain meds working, but you take what you can get. They kept her overnight for observation, but we were fine with that.
When we got home, Becky found out that the stent was more troublesome than she originally thought. She had pain every time that she moved and it was also making her incredibly nauseous. The surgery was on Tuesday, she got released Wednesday afternoon, and by Thursday night Becky had to go back into to ER because she was throwing up so much, and her urologist told her that if she couldn’t keep anything down that she needed to go to ER to get some fluids. When we got there, they put her on a large amount of fluids and a good cocktail of pain meds and anti-nausea drugs so that she was able to get some sleep. The next morning, she was doing much better. She still needed the really strong pain meds to get through, but when she was on the pain meds, she felt pretty good. Over the next couple of days, her doctor kept an eye on her and saw that she was improving. Her doctor was hesitant to release her because he was afraid that she would end up back in the ER. By Saturday, Becky was able to get by with lower amounts of pain meds so the doctor felt more comfortable releasing her. Becky still had trouble eating the entire time the stent was in so, by the time that she got it out, she had lost over 10 pounds. For most women, that would be a feat of joy, but with the CF, Becky needs to keep her weight up. There have been studies done that show that people with CF who are able to keep their weight up live longer. About a week after getting the stent out, Becky was still not able to eat much of anything so she decided that she needed to go back to Iowa. So that’s where things are.

Pain

2008-12-13T14:08:00.003-06:00

I've been in a lot of pain the last few days. I'm pretty sure kidney stones have reared their ugly heads once again because of where the pain is. Several years ago I had lithotripsy done twice, but of course, the stones still remain. I can't have the lithotripsy done anymore because I can't have the anesthesia, unfortunately. All I can do is drink lots of water and lemonade (lemons help break up whatever mine are made out of), carefully monitor the pain, and pray that there are no complications. The pain comes and goes, so I'm not worried about there being a bigger problem, but it just becomes annoying.

I've also been nauseous a lot more lately. Jake and Kati are convinced it's my blood pressure meds. (Although, it could be partly from the kidney stone pain too.) I'll monitor that more in the next week or so and if it doesn't get better I'll call my endocrine docs and see if there's anything they can do about it. Until then...I just eat what I can, when I can.

Unfortunately, not being able to eat much lately means I've also lost some weight. Kati and Eric said several times they thought I'd lost weight, but I thought I was still okay. Yesterday, though, I weighed myself and I've lost about 6 pounds, so...ya. Once again, I'll just eat whatever I can, when I can.

Hopefully, all this stuff will clear up enough so I'm not miserable when there are Christmas gatherings. Not to mention that my cousin, Ryan, and his wife, Logan, are going to be here before New Year's and for about a week after. Ryan is in the Navy and stationed in Connecticut. They're expecting their first baby in April so we're having a baby shower for them while they're here. Ryan (and now Logan too) has always had a special place in my heart so I'm really looking forward to seeing them and seeing little Lyle in-utero :) So I need to be feeling decently when they get here!!

Thanks for praying!

2008-12-09T13:36:00.004-06:00

It's been almost 3 weeks since I've blogged. Not sure why exactly, but I just haven't been all that talkative. Plenty has happened, though, so I'll try to catch you up.

On November 25th I turned 27. I love my birthday. Almost in a child-like way, I love my birthday. I think part of it has to do with the fact that my parents were told that I wouldn't live to be 1, and here I am 26 years later still proving them wrong. I like proving them wrong :)

Jake added to my all-things-game-related addiction and got me the official Scrabble Dictionary. I then kicked his butt in 3 or 4 games in the next few days. He also took me out to Buffalo Wild Wings to eat dinner and play trivia...one of my FAVORITE activities :)

My 16 month old niece, with some help from her mommy (my sister, Staci) called to sing me happy birthday. It was priceless! It made me cry, but in a good way, of course. If you're on Facebook, you can hear the message on my page. All in all, a great birthday.

Thanksgiving was a lot of fun. My brother (Matt), sister-in-law (Chris), niece (Mahkayla) and Aunt Nancy came to the house for lunch and afterwards we played Mega-Monopoly. Such a great game! Chris and Mahkayla ended up calling it a draw after about 5 hours of playing and bankrupting the rest of us. We all had a lot of fun and laughed a lot...such great family time.

The next Saturday Jake and I went out with our best friends, Kati and Eric, to see the movie "Fireproof" at Wehrenberg Theaters. We'd already seen it once, but it's such a great movie we wanted to see it again. This was also further celebration of my birthday (which actually turned into a birth-week instead of day).

Unfortunately, on Saturday night I was already starting to feel kinda icky. By Sunday I was feeling really badly and had a full blown cold (and a GI bug to be named later). We ended up missing our godson (Kati and Eric's son), Malaki's, first birthday party, and were really bummed about that. But by Sunday night, Jake was sick too, so we were very glad we didn't go. Jake ended up staying home Monday and Tuesday, and tried to go into work on Wednesday, but came home after only a few hours. Thursday, we were feeling good enough that he went back to work, and I did payroll. We're still feeling the effects, but the Puffs consumption has gone down dramatically.

Friday night we had our annual Franmar Christmas party. We always love going to the party. For me, it's a time to put faces to the names I write checks for every week, and to see the ones I know but don't get to see very often. It's a fun group of people to hang out with, so the party is always a good time.

Here's Jake and me at the party:

This year the entire company surprised me with a new game...Franmaropoly! They spent the entire last year creating this thing. From writing new Chance and Community Chest cards to all the employees HAND-MAKING the playing tokens. They had a local printing shop we do business with print the cover for the box lid and the board itself. It's absolutely incredible. I am completely blown away that they would do this for me. I'm still in shock that I held back the tears (you know how emotional I am!) while at the party, but there were plenty when we got home. Now I just have to get Jake to play it with me :) (I'll add photos as soon as I have some!)

I guess that's it for now!

Therapy, Pooping, and a Big Decision

2008-11-19T17:26:00.003-06:00

I've been home for about a week and a half now and for the most part things have gone well. Jake has been doing my CPT every night, which has helped a lot. I'm not good at doing my CPT at home because it usually includes using "The Vest" which is pretty uncomfortable. The Vest inflates and then shakes the stuff loose in the lungs. It's just overall uncomfortable when I'm doing it and then I itch like crazy when I'm done. I think that just has to do with the friction it causes, but still. I finally asked Jake if he would be willing to do manual CPT and he reminded me that several years ago he pushed pretty hard to do it for me and I, uhm, well, not so politely said no. I can be really stubborn when I want to be. Needless to say, he was just short of thrilled when I asked him to do it for me.

I think manual does a much better job than the vest. The vest was designed to give CFers more independence and there are also a couple of other things I can use (percussors, Flutter, Acapella) but I don't really like any of them. I much prefer manual CPT. CPT involves him pounding on my back, sides, and chest while in different positions for 3-5 minutes at a time. This is also called "postural drainage". Depending on whether we're doing "uppers" or "lowers" I sit or lay in different positions in order to get the mucus to drain in the right direction. It may sound painful, but really, when I get it done in the hospital I can end up falling asleep. Right now we're doing 3 minutes a side and will work up to the full 5 minutes. There is quite a bit of technique involved and the muscles really have to be built up. Jake is doing an awesome job. He has good technique so he gets a good "popping" sound (a sign of good technique). I'm glad I finally have a better attitude about the things I need to do...it makes me feel better all around.

Today was a little tougher. (This is one of those delicate subjects that I hope I won't gross anybody out with...I'll be careful of what I actually write, but you'll get the idea. If I still gross you out, I apologize! :-D) Back in January I had an intestinal blockage that made me spend an extra 3 days in the hospital. I was in so much pain and was so bloated you would have sworn I was pregnant and in labor. For 3 days I drank some pretty nasty-tasting liquids (to get things moving), MiraLax out the whazoo, I wasn't allowed to eat anything and had enemas 3 times a day. If things hadn't started moving, surgery was the next step. I apparently have a shrinking of the intestine right before the colon (they found this in a CT scan) so that can cause stuff to get backed up. I tell ya, I have never been so happy to poot and poop in my life!

Anyway, I have recurrences of this every once in awhile, but since I know the signs I can act pretty fast. Today, though, it snuck up on me. After breakfast I was so full that I knew I already had a problem. I drank a glass of milk with MiraLax and then went back to sleep for a couple of hours. My stomach wasn't nearly as distended when I woke up and I felt better so I ate some Jell-O. I guess I wasn't better, because even with that little of food in me I was incredibly full again. So, I've been pretty uncomfortable all day. I haven't eaten anything since the Jell-O and am a little nervous to do so. I guess when I'm done with this I'll drink another glass of MiraLax and then try to eat a little something, because I am SOOO hungry. Hopefully, things will get moving again!

Jake and I made a fairly big decision this past week. We've decided that after the first of the year, Jake is going to cut his hours at work down to 15 hours a week. We want to spend a lot more time together, not to mention Jake will then be able to help me out a lot more at home. We don't want to waste the time we have together. If the next few years really are all we have left, then we want to make sure we're making the most of every moment. Jake will still be going to school, but we will have a lot more time together than we do now...which is very little. Since making this decision, Jake has had so much peace about it. He really wrestled with it for awhile but he decided that this was the right decision. We always have fear about what other people will think about our decisions (it's a sickness, I tell ya) but after deciding this was the right thing for us in our situation, we've had nothing but positive feedback. Our dearest and closest friends, Kati and Eric, even told us that they've been praying that we would do this! Mom and dad have been awesome. They know that this means we're staying put for the foreseeable future, but they've made it clear that they want this for us too and are happy to have us stay. We are so incredibly blessed by parents and friends who love us both so much, are willing to help us in any way they can, and continually support us.

I have never lost hope in healing or a cure or significant medical breakthrough, but Jake and I really had to look at what the possibilities are and what my doctors and history tells us will happen. We are really looking forward to our time together and the memories we can make that, no matter what, will never be taken away.

Thinking and Praying

2008-11-10T18:52:00.002-06:00

Jake and I have been talking about the transplant. We've been praying about it. I know others are praying for us. I keep having the same thoughts and feelings about it. The trouble is, my answer doesn't make sense. More than anything, I want to do God's will and not my own. I want to take the right path, but sometimes God's path doesn't follow what we see as logic. Not to mention if I go through with what I've been feeling I need to do, it kind of scares me. Not that it's bad, but just uncomfortable.

Since confusion does not come from God, I know that I've been getting in the way. Tonight, I went to the first chapter of Joshua and read this:

"Be strong and very courageous. Be careful to obey all the law my servant Moses gave you; do not turn from it to the right or to the left, that you may be successful wherever you go. Do not let this Book of the Law depart from your mouth; meditate on it day and night, so that you may be careful to do everything written in it. Then you will be prosperous and successful. Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."

Though I won't be sharing what has been going through my head right now, I was really encouraged by these verses. I'm going to continue to pray and I hope that whoever reads this will pray with me too.

Discharge Day!

2008-11-07T16:44:00.002-06:00

I'm just finishing up my last antibiotic right now. Jake is on his way up and should be here in about an hour, so as soon as this med is done I will de-access my port and pack up all my stuff. I don't think I've written about my port, so maybe I should explain that. It's a small Rolo (the candy) looking thing that is surgically placed right under the skin. Mine is in my chest (although there are numerous other places to place them). There is a tube connected to it that runs up my neck and then down into my heart...well not quite my heart. Each time I come in the hospital they insert a special needle (a "huber" needle) into it and I get my antibiotics through that. While I'm here I get the needle and dressing changed once a week, and at home I get it flushed every month. It's really nice because of the aforementioned limited number of viable veins. Plus, blood can also be drawn from it. My Tob levels can't be drawn from it, though, because that's where the antibiotic goes in, so the results would not be accurate. They have an average lifespan of 5 years before they need to be replaced, but I and a few other CFers have pretty much crushed that statistic. I got mine in April of 1997 and it's still going strong. Usually, they need to be replaced because they stop flushing caused by clotting or because they get infected. I have it flushed every month to help prevent the clotting. I use heparin to flush it while in the hospital (while it's not being used for meds) and a more concentrated dose of heparin each month while I'm at home. So, that's pretty much that.

My med is done now, so I'm gonna go take out my needle and get packed! My next blog will be from home! Woohoo!!!

Breakin' Out

2008-11-06T17:17:00.000-06:00

I get to go home tomorrow! I'm pretty excited about that :) Saturday will be 2 weeks so Dr. Hornick is letting me out tomorrow. Studies have shown that hospitalizations lose their effectiveness after 2 weeks and can actually do more harm than good. Being on antibiotics long term, without a break, can lead to decreased sensitivity. I have resistance to most drugs, and a lot of the ones I'm not resistant to I'm allergic to, so I certainly don't need any help with that.

I got blood drawn again today, and again, it only took 1 stick. I'm completely shocked by that. The entire time I've been here I've only had to be stuck the number of times I've needed blood drawn. That's pretty crazy. A very good crazy though. A kinda of crazy I would like to be repeated over and over and over and...you get the idea :)

I've had a whole different attitude toward taking care of myself for the last couple of months, and it's only improved since I've been here. Suddenly taking care of the diabetes isn't such a chore, and I actually don't mind (I haven't made it to "like" yet) exercising. It's been somewhat enjoyable since I've been here. I've made progress and I feel better physically and emotionally. I'm trying to figure out what to do for exercise when I get home. We have a Wii now, so that will definitely help. I'm looking at a couple of options, but I'm not sure what we'll be able to do. Whatever happens though, I really think God is changing my mind and my attitude. I've prayed for that for years and now it's happening. Very cool.

I got a really happy surprise today. I found out that the new PT aid, Kelly, is a Christian too! I'd suspected it since I met her about a week ago, and apparently she had suspected me too :) Today she asked me and after I told her I was, we had a great conversation! It is really nice to be able to talk to her while she's doing my CPT. She is a very cheerful person and always has a smile on her face.

Today also seemed to be Pick-on-Becky-Day. It was all in good fun, but it seemed that everyone who came in had something to tease me about. I've thought for a long time that I must have a sign on my forehead I can't see that says "You can pick on me and I'll take it well". I actually like it a lot. The one I remember most is when we were coming back from Las Vegas. We were on a flight that served us these little boxed lunches that included Jelly Belly's...one of my all time favorite treats. I got really excited about it and the steward said "Oh ma'am, I'll have to take those". I got a shocked, sad look on my face and then he laughed and said "I'm just kidding!". He (and Jake) got a good laugh out of that. I love that people, even strangers, know they can joke with me like that.

If you know me, you know that I LOVE games, no matter what the game is. Board games, card games, video games...I love them all. So, the hospital has a Bingo night that I've always loved to go to. I guess they realized that people had a hard time getting to the room where they had it so they started TV Bingo. They have a closed-circuit TV station here at the hospital that they now use for that every two weeks! It's pretty fun. You turn the TV to channel 5 at 6:00pm and play. Earlier in the day they come around and ask everyone if they want to play and give them a Bingo card. When you get Bingo you call BINGO (2-4646) on the phone and they answer it on the show. We play 4 games and there are 2 winners for every game. When all the games are over, the volunteers bring around a cart of prizes that each can pick from. (They're good prizes too!) Well, last night I was the second winner of the last game! I chose a green shawl that I'm quite sure my "Aunt" Vicki is going to try to steal. :-P It was a really nice diversion for awhile!

Anyways, I'll be home by tomorrow night and be ready to visit with the Stubbs family while Jake's sister, Selena, and her husband, Brian, and their 2 1/2 year old daughter, Norah, are down for the weekend. I always look forward to seeing them and am especially excited to see Selena, who is at the moment very pregnant. She is due at the end of December, so this will be the last time we see them before the baby is born. I'm getting home just in time to see them and have some really good food. Pretty good timing, I think :)

Apologies

2008-11-05T20:36:00.003-06:00

For all of you who have commented to me on this blog, I am so sorry! I thought blogspot would notify me somehow if I had comments, but it didn't so I never saw them until tonight! I so appreciate all of your comments, prayers, and love...I hope you know how much they mean to me. And from now on, I will check to see if I have comments so I can write back!

Thanks again!!

P.S. After writing this I found where to change settings so that I do get notified when I get comments :)

My "Free" Day

2008-11-05T17:11:00.002-06:00

Not much to share today. Wednesdays are the "free" days. No tests at all...just exercise. It went really well again today. I'm kinda kicking butt and that always pumps me up :)

I'm feeling better today although I'm quite tired again. I got woken up at about 3am by someone taking the other bed out of my room. I have no idea why they needed it or why they needed it at 3am. Oh well. Then I got woken up at 7:30am to do nebs to be ready for CPT. Usually I don't get woken up until 8 or 8:30, so with all that I'm pretty tired.

I'm not having the pain in my side anymore and getting up to do things isn't as tough. So it's my theory that a lot of people prayed about that and so now it's gone :-D I don't know what Dr. Hornick will think. I haven't seen him yet today. He may have come when I was gone, I don't know. I'm not really worried about anything though.

I did see the endocrinologist (not Dr. Doelle, but someone else I've never met) and he commented on how well I was documenting my blood sugars and insulin. I about started laughing. If he only knew. I also talked to the dietician today about carbs. She gave me a booklet thing that should help me some more. I'm actually finding out that a lot more of what the doctors and nurses told me when I first became diabetic stuck than I thought. I'm a lot better at estimating carbs than I thought I was. That's building my confidence a bit more :)

I didn't post this yesterday, but I had a visitor! Very exciting for me! My friend, Heather Fey, was in Iowa visiting her aunt and uncle, so she stopped by! Her uncle works at the hospital so he was able to find me for her. That comes in pretty handy because this place can be pretty confusing if you're not used to it. We only got to talk for about 10 minutes before they came to get me for the x-ray, but that really brightened up my week. Heather and her husband, Paul, are in our small group Bible study at church. They are great friends and are one of the most encouraging couples we've ever met. We love hanging out with them and I am really looking forward to getting back to our small group when I get home.

'til later...

A Good Day Overall

2008-11-04T16:03:00.002-06:00

I've been having some low Sats lately and some pain in my side so Dr. Hornick ordered a chest x-ray today. He's pretty sure it's just a muscular thing, but he wanted to double check. Thankfully, x-rays aren't painful, so I'm good with that. I'm not sure when I'll get the results from that, but again, if I don't hear anything I know it's okay.

The last few days I've had a hard time breathing when I get up to do anything and had really bad headaches from the low oxygen levels. Hornick said that I may need to start using more oxygen at times when I didn't used to need it. That's pretty frustrating to me, but I'm always hopeful that things will get better. He also said that he's always been surprised with how high my Sats have been given how low my PFTs are. I think that's kinda cool.

I also did PFTs today. They were 31%. The number we look at, called FEV1, is the amount of air that can be blown out in the first second after deep breath. Mine is something like .84 liters, which is 31% of what is predicted for my height, weight, etc. That's not too bad considering how bad I was when I came in, but they're not even close to where I want them. But really, I want to be back at 85% so...

I kicked some major butt at exercise today. My Sats stayed high the whole time (on 2 liters of oxygen, of course) and my work load was higher than it's been in awhile. Amanda gave me a challenge and I couldn't resist. Turns out I did pretty well!

So, something that's running through my mind...

I'm rethinking the transplant. Two years ago I made the decision to not get one, but for about the last year I've been continually questioning that decision. I think it was the right decision at the time for multiple reasons, but now I think I need to look at it all again. I'm sure I'll be talking about this more in future blogs, but for now I just want to ask that you pray for me and for Jake while I make this decision. Doing this would mean major life changes, the least of which would be moving for probably 6 months or more.

Thank you so much for allowing me to talk about all this. I really think this has been good for me and allowed me to open up about a lot of things I probably wouldn't talk about in person unless specifically asked. I'm very open about my disease but I find it very hard to open up about how it affects me emotionally and so this gives me a good outlet for that. I also very much appreciate your prayers. It is only because of Jesus that I am here. He's the only thing that gives me hope and a purpose for my life in the midst of so much disease and pain. I am continually grateful that there are people who lift me up to Him in prayer and though I will never understand it, God chooses to move when His people pray, so...thank you for all you do for me.

Randomness

2008-11-03T17:00:00.004-06:00

Jake and mom came up for the weekend. Dad is on Colorado on his annual Elk Chasing, er, Hunting trip so he obviously wasn't here. (He called me today and said he actually got a shot off this year, so he is now officially a hunter.) We didn't do a whole lot. My med schedule is such that it doesn't allow for a lot of time out. We went out to eat on Saturday and Sunday and saw a movie on Saturday night. "Changeling" was a good movie. It was a tough movie to watch, but a good one. My favorite part of the week while I'm here is the weekends. I get visitors, get out of the hospital, and get away from hospital food. It's not all bad food, but it does get boring after awhile. We did a little shopping on Sunday too, but before I knew it it was time to be back for my next med. I'm pretty tired now...too much excitement :)

I got my Tob trough today and haven't heard anything about it, so I'm assuming it was okay. Tomorrow I'll finally do a PFT (Pulmonary Function Test). We always have them on Tuesdays and Fridays but Dr. Hornick lets me decide if I want to do them or not. I was feeling pretty crappy last week so I didn't do them at all. I'm anxious to see what they look like, though, so I'll do them tomorrow.

So far I haven't had any side effects from the new med. I'm supposed to watch for dizziness, especially when I stand up, but I haven't noticed it at all, so that's good. Over the weekend I finally started feeling better. It took longer this time to actually start feeling the progress. My hope is that it will continue. I'm still coughing but not like last week. I got up a lot of junk today and it was easier to get up, so I think that's good. Exercise was tough today, but I think this was just a bad day for me.

I guess that's it for now. Sorry it's all kind of random...I really need a nap. :)

It Started Off Happy...

2008-10-31T15:54:00.003-05:00

Ironically, I got some sleep last night but am more tired today than I've been all week. So weird. I guess I'm not all that talkative because of it, so this will probably be pretty short.

There are 15 CFers in right now, so things are a little hectic around here. The PT people have to work out how to do all 15 CFer's CPT twice by 12:00pm. Not an easy task. Then they have to get us all in to exercise between 2:30pm and 4:00pm. Again, not an easy task. But they get it done and we are all the better for it.

I wrote the first paragraph and my endocrine fellow (a doctor who is in process of getting their specialty) came in and gave me some news. They took a urine test the other day and there are proteins in my urine, which is called nephropathy. This means that there is at least some kidney damage. The good news is that it is early and is treatable. I will now be taking a blood pressure medication in order to correct the problem. This brings on more regular tests and concerns, but it is treatable, so that is good. The bad news is that it is my fault. For more than 12 years I did not take care of my diabetes. It took a backseat to my CF and because of my stubbornness and lack of discipline I have now created a whole new issue. I'm crying now because I feel so stupid for not taking care of myself. There is/was this part of me, that despite having CF, has been in denial of the significance of the diabetes and the fact that I could develop other issues. Maybe it's just too much for my brain to handle. I joke a lot about how many health issues I have, but it's always, at least initially, a shock to hear that there is yet another problem. I know that eventually I will add this to my list of complications and diseases and will move on with the taking care of myself. Right now, though, I am still processing. If you could pray that I process well and that the treatment will be successful without side effects, I would greatly appreciate it.

Until later...

Emotions

2008-10-30T15:40:00.004-05:00

One of the CFers, Destiny, gave birth to her baby boy today. They both are doing really well, but this stirred up a lot of emotions in me that I wasn't expecting.

You all probably know that before we got married Jake and I decided to not have children, and to further ensure this I had my tubes tied. What you may not know are all the reasons why we made this decision. CFers can have children and Dr. Hornick even called me before I had the surgery to make sure that I knew that this wasn't the only answer. I assured him that I knew that, though I did appreciate the fact that he called to make sure I wasn't making a decision I didn't really want to make. Here was(is) my thinking, though. CF is hard on a body to begin with, and pregnancy is hard on a healthy woman's body, so put the two together and the results have a potential to be bad. I couldn't stand the idea of having a child and knowing that there was a large possibility that that child would lose their mother at a young age. I also couldn't stand the idea of leaving Jake to raise a child on his own. Having it happen without the knowledge beforehand that it might is one thing, but to knowingly go into it with that knowledge...I just couldn't do it.

That surgery was hard on me, but I knew that going into it. I knew that Jake could have had a vasectomy and it would have been much better for my health. But there's further thinking into that too. What if I did die soon into our marriage or after a few years? I didn't want to take the option away from Jake to have children with the person he would fall in love with after I was gone. I know they can be reversed, but that's not even a sure thing, so...I made the decision to take care of it myself. If I had made any other decision about having children or how to prevent having children, they would have been selfish decisions and there is no way I could have done either one any other way. Now, please don't get me wrong. These were MY decisions and someone else making these decisions may make them a different way. That doesn't make them wrong. For me, though, any other decisions would have been wrong.

Even with all these very logical decisions, which were well thought out, the decisions and the surgery didn't take away a desire to have children. I wish that they did. It would certainly make things a lot easier. There have been at least 2 times since we've been married that I thought I was pregnant despite the tubal. I was thrilled and terrified both times...I'm sure very normal reactions. Both times I would get so excited at the thought and then be crushed when it wasn't true. I feel a little silly even telling people that, because, duh, right?...I had a tubal. But there is always a small chance of getting pregnant after getting a tubal, and if you know anything about me, you know that I've pretty much crushed every statistic and expectation my entire life...so it wasn't such a crazy thought.

So, when I knew Destiny was going into surgery to have her baby, there was this flood of emotions. Thinking of what I may have missed out on because of my decisions, how hard it must be to not have a lot of support when you have a baby and have CF. And then, Amanda, told me a few things that brought even more. Destiny told Amanda that she had written a note to Dr. Hornick that she wanted given to him if anything were to happen to her during the C-section. Basically, telling him how grateful she was for his care and support and everything he'd done for her while in his care. It made me cry, knowing that this wonderful moment in a woman's life would have to be filled with worry and wonder over what would happen, and even expecting that something might. I hated knowing she was thinking about that...but what else can you think when you're in our position? Every flu, cold, sinus infection...everything that comes up can be the beginning of the end. I've seen it happen, and heard numerous stories of how the smallest thing started the ball rolling. What must she have been thinking about leaving her baby behind? To not be there when he starts to walk and talk, and go shool, and get married. I think, she must have been peaceful in a lot of ways, because Amanda said Destiny was comforting HER. Thankfully, nothing did happen. And even more than that, there are some serious miracles going on. They had planned on her having the c-section on the 17th, but she was feeling so good that she said she wanted to wait 2 more weeks to give him more time. (But she did NOT want him to be born on Halloween :-P) He was born at 29 weeks and was breathing fully on his own! No one was expecting that. Destiny is doing well and I hope to hear more about her recovery from surgery while I'm here.

The good thing for me today, was that with all my doubting of the decisions I've made in my life, I feel like I got confirmation today that this one was the right one. The reasons I had for not having children are the same worries Destiny must have had. I'm very thankful that I won't have to have those worries. Granted, God can still make another miracle happen in my life. He can bypass a tubal, and I know that...He is so much bigger than that. But I also know that I will never have to wonder if I made a mistake by not having one. And I know that if I do become pregnant that it is not by some mistake I made (which I guarantee you I would think, because I constantly worry about who I hurt) but because God really wanted this for Jake and me. I find a lot of peace in that.

As a side note, Destiny named her baby boy Brandon Douglas. Douglas is after Dr. Douglas Hornick. If there is any doubt what we think of our doctor and how amazing he is, there is some proof for ya.

A Better Day

2008-10-29T16:03:00.018-05:00

I had another bad night, BUT I've actually had a pretty good day! I made it through both sets of CPT today (the last two days I either didn't do one or couldn't do all the different positions of them), and I exercised. I usually have a really hard time the first few days I go, but it went surprisingly well this time! My Sats (Oxygen saturations) were good the whole time and I went 25 minutes! PLUS, I got my A1c results back today...it was 7.2!! That really cheered me up :)

My endocrine doc, Dr. Doelle (pronounced like Deli), came today too and even he had a smile on his face! I don't think I've ever seen that from him...I've been a frustrating patient for quite sometime :-P (He treats my diabetes and hypothyroidism) He was happy that my numbers were better and also said my thyroid levels looked good. I asked that the diabetes nurses and dietician come in so that I can get a refresher course on all things diabetic. I'm finally at a place, mentally, where I'm receptive to the information...it only took 13 years :-D

I haven't seen Dr. Hornick yet today, so no info there. All in all, things are looking up. Now, if I could only get a good nights sleep!

So, somebody (*cough cough* STACI *cough cough* ;-P) thought I needed more pictures on here and not JUST on Facebook, so I took some pictures with my iPhone today. Maybe you can get a little better idea of what my favorite "vacation home" looks like.

This is my side of the room. I'm in a double right now because there are so many of us right now. We have to be by ourselves because we don't want to catch anybody else's bugs, so this time I get a really big room with TWO windows :) There are 13 CFers right now (8 adults, 3 peds, I think). That is a HUGE number at one time. I guess the weather isn't helping any of us this time.

What I see when I lay in my bed. That's the white board where my goals are written and the fabulous (HAHA!) TV. Peds have it so good with their flat screen TVs and DVD players and...uh...no bitterness here :-P

The other side of the room. Notice the fabulous faux wood sink cabinet and stunning bed clothes...just so stylish. The bed is mussed because Jake slept in it on Saturday. It's nice to have an extra bed he can sleep in instead of the chair or a cot that he brings with him.

My bathroom. Very oddly shaped. The mirror on the sink cabinet-thingy allows me to see the top of my head. Quite handy. Hence the hand mirror underneath it.

The view from my window. This is by far THE best view I've ever had. Usually I'm looking at a brick wall, so this is really really nice. Anybody who comes in the room comments on the view, so you know it's special :) They also comment on how cold I have the room. I love a nice cool room. It's set at about 67 right now...pretty much perfect. Really nice when the rest of the hospital is about 72 or so. The CF dietician came in today and said she'd come hang out in my nice cool room and check out the view when she gets stressed. Sounded good to me :)

That's all for now!

Day 3

2008-10-28T15:54:00.002-05:00

I had another bad night. The coughing wasn't quite as frequent as the other night, but it kept me up longer. I would just start to nod off and I'd start coughing again. Frustrating is the only word that comes to mind. Exhausted is what I am now.

I did take a nap this morning for about 2 hours, but then people kept coming in the room, so it didn't last nearly as long as I wanted it to. Hopefully, tonight will be better.

I still haven't exercised yet. The exhaustion leaves me with no energy and the thought of exerting that much more just makes me want another nap, so I skipped it again today. I really want to get going with that, because it does speed up recovery. If I get a good night of sleep tonight I'll finally get back into the normal routine, I expect.

Overall, I do think I'm starting to get better. Jake said my voice sounded better when he called me over lunch. I haven't coughed as much today so I think that's a good sign. Although, I have gone through yet another box of tissues, for a total of 3 in 3 days. That's probably at least a little tree I've killed by now :-P

We have new IV pumps this time. None of the nurses or CFers like them. They're like Fort Knox...impossible to get in to. Normally, we all mess with our pumps, changing the speed the drug is infused at, or correcting the volume of the med. Not to mention adding more time to it when it starts to beep and annoys us. But not on these babies. Nope. You have to have an ID badge in order to get in them and pharmacy decided what speed the med goes in. Most CFers are in quite often, so we know the routine, and know what our bodies can and can't handle. We all change stuff, and the nurses know we know what we're doing, so they're okay with it. Usually I run my Tob over half an hour, but the new machines think that because I'm little my body can't possibly handle the drug going in over a half hour, so I get to sit for twice as long. It's pretty annoying. The nurses hate them because they don't have the freedom to use their brains...pharmacy did that for them. They set how much time the nurses have to start the med after they scan the med or enter it by hand before it starts to beep. Apparently, they think nurses are also tazmanian devils, so they gave them about 10 seconds to get it done.

Here's the genius of someone who has been in the hospital a lot though. Te he he. Apparently, one of the CFers who is in right now, discovered a little button on the back of the machine that allows you to change things without the ID badge. Our favorite physical therapy aid, Amanda, is passing the word around :-D I haven't tried it yet, but I'm sure I will the next time the pump decides to mess with me.

I found out some more about the move. Several of the nurses from this floor and even some of the housekeeping people are requesting to move with us. I'm very excited about this. Moving to a new floor is always hard, because you get really attached to the people you see every time. (Not to mention that breaking in new people is always a process :-P) So, some of our favorites want to go with us. That should make the move even better, if their transfers are approved. We've had favorite nurses, who got frustrated with the way this floor is run, go to different positions in the hospital. I'm hoping they'll come back to us when we move.

We are a very interesting breed of people, as I've mentioned before. I mean, if you think about it, we really are freaks of nature to begin with. CF is not a common disease. Jake and I did the math on what percentage of the American population actually have CF and it came out to be less then 1/100 of a percent. Is that crazy or what? Throw on top of that, only 10% of the CF population develop diabetes from the disease...how much of a freak of nature am I now?! (By the way, I take "freak of nature" as a good thing...who wants to be like everybody else? :-) )

I suddenly drew a blank on what else to talk about so I guess I'll stop for now. I'm sure I'm forgetting important information of some kind, but if I get some sleep I'll probably remember it tomorrow :)

Thanks for reading my ramblings!

Full Day Deux

2008-10-27T15:55:00.003-05:00

Things got straightened out last night. Turns out my day nurse didn't see the orders Dr. Hornick put in my chart. Thankfully, my night nurse found them after I was confuzzled by some things and asked her about them. So at about 11:00pm last night all the new orders were actually put into the computer system and everything is as it should be. Gotta love technology.

I am now on 3 antibiotics. I did get put on the good one, so YEAH!! It's called Aztreonam...I've been practicing saying it all day and it hasn't gotten any better. This one isn't sticking in my head for some reason. Oh well. The other one is Cipro, which I'm on quite a bit too. Usually, it's in pill form, but doc decided to do IV this time. So, my current med schedule is: 8am: Aztreonam, 10am: Tob and Cipro, 4pm: Aztreonam, 10pm: Tob and Cipro, and 12am: Aztreonam.

We did levels today for Tob. I am pretty sure this is the first time getting blood 3 times only took 3 sticks. I don't know how that happened. Although, my nurses did listen to me when I told them where to stick it (LOL! the needle that is...). The 2 nurses who did them were really good, so I give them the credit.

I really only have 3 veins that can actually be poked successfully with some consistency. 2 in my left hand and one on the back of my right arm. That one is particularly awkward, but it works so, we do what we have to. One of the veins on my left hand gets pretty sore after getting stuck. It's right over the bone of my thumb below the knuckle...but again, it works, so we do what we have to do. Those results I probably won't get unless they're high...kind of a no news is good news thing. I also realized I made a mistake in my last blog. The troughs I get twice a week after today. Always on Mondays and Thursdays, unless Dr. Hornick gets a hunch. And, he's always right when he gets his hunches :) So, my veins get a break until Thursday.

As far as how I'm feeling...

Last night and this morning were particularly rough. I tried going to sleep at about 11:30 and coughed until 2am. When I woke up this morning it happened all over again. From 8am until around 10:30 all I did was cough. Coughing always has some pain with it. You can't cough that much and not have pain. I start getting headaches from the pressure and my abs start to burn. More than anything, though, it just breaks me emotionally. This feeling of "it's never going to end" start flooding my mind and I can't help but cry. I know I'm an emotional person to begin with, but I hate this kind of crying. It's tears of desperation. I'm pleading with God to make it stop after about an hour. Eventually, I remember (it has to be the praying that makes my brain work again) that cold water or ice works. I start sucking on ice and sipping the water and things start to calm down. Then I fall over from exhaustion and usually just go to sleep, if my body will let me. I long for those periods to not come. I do everything I can to avoid them. Sometimes, that's just not possible.

I'm extremely congested both in my sinuses and my lungs. A few people have commented that I sound particularly bad this time. I'm coughing up a ton of mucus and have already gone through 2 boxes of tissues since I've been here. By day 2 I'm usually feeling better and coughing less, so I'm having a rough time, mentally. Sometimes it's too much to handle. I just want to feel better, even a little bit.

Dr. Hornick wrote, on the white board in the room, what my goals are for this time. Number 1 is decrease in cough/sinus congestion. Number 2 is decrease in dyspnea. This was a new word for me, so I had to look it up. It just means difficult or labored respiration. The white boards are a new thing, so actually seeing the goals are too. I like it :) Number 3 is "BS Control". I laughed when he wrote that down. I thought he was talking about something else, but he quickly told me that he meant blood sugar control. The other way would work too, though. :) Apparently, at least one of my meds is made with some sugar solution, so he changed that in my chart so they would make it with saline instead. I had a spike in my blood sugars this morning which really confused me, so finding that out relieved that concern. The rest of the day has been better as far as those go. I forgot to ask about my A1c result, so I'm going to try to remember that for tomorrow. The A1c is the test they use to find out what your average blood sugar has been for the last 3 months. They like it below 7.0 and as close to 6.0 as possible. Mine usually runs around 8.0. It's gotten a lot better over the years as I've learned to take better care of my diabetes. My goal for this one is at least 7.8. My last one was 7.9 so I want to see improvement!

Moving on, number 4 is "smile daily". I kinda liked that one. I don't really think I have a problem with that, and he knows it. I think that's why he put it up there. There was also originally a number 5, which I find hilarious. It was "Be Normal". As in, Normal, IL. He doesn't miss any opportunity to throw that around. A couple of years ago, he realized what town I was from and hasn't stopped joking about it since. I love that he has that dry sense of humor. It reminds me of my dad, so it's kinda comforting :) He quickly erased it after he wrote it. I laughed, but maybe he didn't think others would get the joke. Besides the fact that no matter what, I will never be "normal", so that is an impossible goal :-D

My voice hasn't really gotten any better. All the coughing last night and this morning made it worse so there is almost no voice left. That makes ordering my food fun :)

So now the good news. I found out that the adult CFers will be moving to a new floor at the beginning of next year. Dr. Hornick has been lobbying for a long time for us to get our own area. Being around sick, contagious people is NOT good for us at all. This will be at least the 3rd time we've been moved since they stopped putting us in peds. I have high hopes for this. They've been renovating the floor for awhile, so it will be brand spankin' new when we get there. I know that Dr. Hornick wants us to have a lot, but I'm not sure what will actually happen. The new area will be next to the IPCU (Intermediate Pulmonary Care Unit) which has really big rooms...so I'm crossing my fingers for that. Also, he's wanted us to have (and we've all wanted) what all the peds kids have. Flat screen TVs, cordless phones, video games, DVD players, refrigerators...the works basically. When you're in as much and as long as we are, these things are really awesome. It makes being here not quite as horrible. I'm not sure what the board will be willing to pay for and what will be donated. When my friend, Lori, died last year her husband donated 7 dorm refrigerators and a Wii for use ONLY by CFers in her memory. We have to eat so much to keep our weight on and everybody I know brings food with them, so those fridges are great. I always have soda in mine. Mmmmm...Mountain Dew. :) These kind of luxuries are really special and I'm hoping that someone will see fit to get them for us. Children's Miracle Network outfitted peds, so they may do it for us too. We're a special breed of adult, so we may still qualify as children :-P

Alright, so I've written a whole heck of a lot, so I'm gonna quit now. It's kinda nice getting this stuff out...should have started this a long time ago. (No "told you so"'s from anybody, got it? ;-) )

Back in Iowa

2008-10-26T19:16:00.004-05:00

Jake brought me up to the hospital last night. I have been sick for the last few days with a bad sinus infection that wasn't getting better, so here I am. I had a bad cold for about 10 days at the beginning of September, and after Aunt Barb's death, there was a lot of stress. The sinus thing popped up, and there ya go. Sick, sick, sick.

I'm not feeling too well, as you can imagine. I'm extremely tired and am still coughing quite a bit. I've also been nauseous on and off since Friday night. To add to everything else, I started that very special time of month, and the cramps are always enough to knock me down for 2 days without all the other stuff going on. Being on the antibiotics means no ibuprofen, so Weeee!, even more fun. I requested tylenol w/ codeine, so we'll see if my doc okays that. The tylenol by itself does absolutely nothing for me.

Dr. Hornick had been out of town so I had another doc admit me. Thankfully, Hornick was back this morning and I feel much more comfortable now. He is THE best doctor. I truly trust him with my life and that means a lot when you're in a position like the one I'm in. He cares very deeply for every one of his patients and that is really obvious. He knows his stuff, is incredibly humble, forceful when he needs to be, and has a great bedside manner...what else could a patient ask for?

So far I'm only on Tobramycin (Tob from here on in), which I'm on every time I'm here. I think we must be waiting to get test results back or something because nothing else was prescribed, which is unusual. I didn't get a lot of time to talk to Hornick when he came in this morning because I was getting CPT (Chest Physio Therapy) at the time. I'm sure I'll be able to ask more questions tomorrow. I'm not really worried about it though.

I guess for the time being I'm just resting, eating, and doing nebs. Tomorrow will start all the fun stuff (completely sarcastic). I'll get stuck for Tob levels tomorrow morning. That checks the level of the drug in my blood 1, 2, and 3 hours after it is administered. They do this after the 3rd dose the first time, and then I just get troughs once a week (or when Dr. Hornick gets a hunch :-P) after that. The troughs are much nicer because I only have to get stuck once right before they infuse the drug. They check that to protect my kidneys. Too much drug and my kidneys can shut down, too little and I won't get the benefits.

I'll also, most likely, start exercise tomorrow (which I loathe). I say most likely, because right now I don't feel up to it, but I may feel better after another nights sleep. Also, depending on the second med chosen I may be nauseous by the time exercise time rolls around. One of the drugs I'm still sensitive to is Meropenem. Unfortunately, it makes things worse for the first few days...nausea, fever...fun stuff. I'm hoping for the drug we did 2 admissions ago. They'd never used it on me and I didn't have ANY side effects and I didn't have to get stuck to be on it. Beautiful! At the time they said they'd do every other visit would be Meropenem and every other one would be the new one (can't remember the name at the moment). We'll see what Hornick's decision on that is. I don't usually fight him on stuff. I trust him enough to not fight unless I absolutely can't handle something. That doesn't happen too often.

My dinner got here about 5 minutes ago, so I'm gonna quit for now. Maybe I'll have more info to share tomorrow.

Weary and Feeling Small

2008-10-15T12:12:00.003-05:00

I've been feeling really down lately. Yesterday was especially bad. I had a low-grade fever and was really tired, so that may explain some of it, but still. I've been very lonely lately. Jake is working all the time and for the next couple of months it will get even worse. I've just felt very alone. I suddenly feel like I'm 10 again and think "I don't have any friends" and cry. It's a horrible feeling. I do have friends and they care about me, but I don't see them very much. It seems that everybody has their thing(s) to do and I don't fit in to those plans. It's kids, or work, or errands, or something...always gets in the way. I spend the days and most of the evenings by myself. I want to talk to people, to be with people, but something always seems to get in the way. Either I'm not feeling up to going out or I don't feel that I should call people. I always think I'll be interrupting them, or inconveniencing them. I often feel like I'm a burden.

I try hard not to complain about things. I feel like if I start I'll never stop so I try hard not to ever start. But the truth is things are really difficult for me. I have a hard time getting moving most days. I want to do the laundry, clean the bathroom, clean up the family room...but I'm so tired and the thought of doing something I know will make me cough and exhaust me is just too much most days. I need help but don't want to ask anyone for it. Everyone else has the same tasks to do and usually a heck of a lot more. They have small children to take care of, and jobs to do, and their own homes to tend to. Nobody has time to take care of their families and mine too. I need to do it, but just can't find the energy to. So, things go undone until they absolutely have to be done. Like when unexpected company is coming in half an hour and I have to fly to get everything cleaned up, all the time not breathing well, and coughing and then collapse when it's finished...usually then putting on the oxygen I should have had on the whole time.

I just feel very alone and don't know what to do about it. I know the answer lies with Jesus, but I even feel distant from him. My own doing, I know...he doesn't leave. But that starts a whole different topic, so I won't get into that right now.

Until later...