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.


  1. Becky I just read this tonight and wanted to let you know you are truly an inspiration to me. I can't imagine facing what you are going through. First of all I hate hospitals even though I work in one, go figure. My mom said we must be bouncing ideas off one another because we write so similar. The truth is we are both facing some incredible odds against us but our faith in God is strong! Keep writing because one day your pain will be someone elses gain. When you get a chance you should find a book called "In A Pit With A Lion On A Snowy Day" by Mark Batterson. It has opened my eyes to responding to God's call to face our most troubling circumstances instead of running from them. Take care and you will definitely be in my prayers!

  2. Becky you are encouraging to us all.
    My husband just got a transplant three weeks ago yesterday & He is doing great! We are currently up in Chicago & are hoping to come home tomorrow-we live in Stanford,IL which is 15min from Bloomington/Normal.
    Please read our blog
    I hope it brings you courage. We both got to the point where we knew that no matter what we wanted God was going to do it His way and that's what we both prayed for often! Everything went perfect for transplant the donor was young,active and there was NO trama to that person's body so it was like he was getting two perfectly NEW lungs! It's such a blessing and he is feeling great today! If you ever need anything,have questions or you want to give us a call or what ever e-mail me at
    Trust In the Lord with all they might! He WILL take care of you!!
    Please know that we are thinking of you!

  3. Becky, I just found a site that you may be interested in. It's called Confessions of a CF Husband and is at It could be an encouragement to you. Kent

  4. Hey Girlie!!!

    I just read about your journey in another blog, "eSentialz..."

    You're preparing to be transplanted at U of Iowa?!? Cool... I know a number of people who were done successfully there... And I get to speak to a group down there in October!!! I have a feeling you'll be in excellent hands...

    Saw all of your statistics... Yup -- so many are true, and so many should be thrown away... I have cystic fibrosis too. I received two beautiful, new lungs a little over nine years ago. I live in Chicago, Illinois - my beautiful, new lungs came from Iowa. I hope that your journey is as amazing as mine has been...

    I have some of my story at and I contribute to a blog about organ donation at And a video that I'm pretty proud of that was produced by Donate Life Illinois is on YouTube and titled Circle of Life

    You hang in there, buckaroo... I can tell you right now -- after living all of your life with crappy, cystic fibrosis lungs -- you don't even know what taking a "real" breath is like... It's been over nine years for me, and it still blows my mind every single day... and I think of the beautiful girl who saved my life, throughout the day, every single day...

    Love, Steve

    Steve Ferkau
    Chicago, IL