Monday, November 2, 2009

On THE List

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.

Tuesday, September 22, 2009

Almost Ready

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.

Thursday, September 17, 2009

Speeeeeed It Up A Little!

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 :) )

Friday, August 21, 2009

Hospital, Heart-Cath, and Transplant Surgeon

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.

Thursday, July 9, 2009

Crazy Weeks

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.

Friday, June 12, 2009

Read the Stats and Then Throw Them Away

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 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.

Saturday, May 16, 2009

A Photographic Journey to Iowa City

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  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 :)

Wednesday, May 13, 2009

Home at Last

(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.

Sunday, May 10, 2009

Marriage the Way He Intended

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! :)

Friday, May 8, 2009


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 :)

Thursday, May 7, 2009


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 :)

Tuesday, May 5, 2009

Lung Transplant Decision

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.

Monday, February 9, 2009

The Weekend and The New Digs

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.

Thursday, February 5, 2009

A Little Better Everyday

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'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...

Tuesday, February 3, 2009

A Sleepy Update

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 

Sunday, February 1, 2009

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

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

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.