Officially Listed!

28 Mar

It’s been a little over two weeks since my last post and I can now share with you that Jody has officially been made active on the national transplant list through UNOS.  His actual list date was March 25th.  In my last post I told you how we were having a hard time making this decision, and that Jody’s doctors were not in complete agreement with which way to go either.  Recently we learned why this has been a hard decision even for Jody’s team of physicians: he doesn’t fit the picture of a “typical” CF patient listing for transplant.

When most adults with CF (80%) are listed, it’s because they are using oxygen 100% of the time, and are losing weight (which is super important for those with CF to be able to fight off infections).  I’ve never talked about CF and weight before, so you may not know that many people with CF do not have any digestive enzymes so their body does not naturally absorb all the fat and nutrients from the food they eat.  While they take digestive enzyme pills to help with this problem, they are not quite as effective.  For this reason, almost anyone you meet with Cystic Fibrosis will be quite thin, despite a high fat diet.  Jody for instance, drinks 1600 calorie shakes every day to help him gain weight, and can eat as much fat in his diet as he wants (if you’re thinking to yourself, ‘must be nice,’ think again, you wouldn’t want the rest of what he has to deal with).  In general, people with CF have to work really hard to maintain their weight so when weight begins to fall, this is problematic.  Jody does not fall into either one of the categories above: he’s maintaining his weight, and while he wears oxygen most of the time, he can also go without it if he is sitting down and not doing anything.

One of the driving forces behind the decision to list Jody now is the frequency of which he needs IV antibiotics to fight off infections and keep him well.  He used to bounce back after these IV’s, meaning his shortness of breathe would go away, his lung function would improve, and he would return to his normal, active self.  In the past six months or so, this hasn’t been the case.  Jody’s lungs are worn and tired, and they don’t have much bounce-back left.  It is important to replace them now, while he is well enough to withstand such an intense surgery/recovery.  The doctors know that in Jody’s current state it wouldn’t take much (even just getting the flu) for him to go downhill fast, and be too sick for transplant.  And so, Jody’s CF and transplant doctors, are finally in complete agreement with the decision to make him active on the list, and this is what we were waiting for.

You might have some questions about what happens next, but I think I’ll save that for my next blog post (because this one would become too long, and you’d probably lose interest).  We’ll pick up where I left off soon but for now, I’ll leave you with a really good five-minute animated video that helps to explain organ donation and transplantation at a basic level, it’s worth watching.

 

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7 Responses to “Officially Listed!”

  1. Inhaling Hope March 28, 2014 at 11:25 am #

    I know that must have been the hardest decision your family has ever had to make. My health this past years has taken such a hard hit and I think about transplant a lot these days. Such a terrifying and hopeful step. Your family will be in my thoughts!

    • CF Wife March 28, 2014 at 8:07 pm #

      Terrifying and hopeful… you’ve got that right! Never thought we’d be at this point, and with such young children, but ready or not, here we go. Thanks for reading and commenting. Sorry to hear this past year has been hard on you. 😦

  2. Paula Balliet March 28, 2014 at 2:53 pm #

    Hi Tiffany:

    Thanks so much for the update. You all are in my nightly special prayers.  I know that the decision to be listed does not come easy.   BUT  I also know exactly what you mean when you write that even a cold or flu can take CF’ers down fast.

     That is what happened to Sonia. Her PFT’s went from 58% to 38% in a month.She was only wearing O2 as needed. IV meds stopped working even tho she was on them constantly.

    One evening she became super short of breath, was put on the vent and a month later she died. She just got to sick to fast for her to even realize it. Had we had time and warnings ,I know she would have been listed months before.   

    But as you and Jody know oh to well when PFT’s are above 35% and a CF’er is doing sorta OK  being listed (Most the time ) is not even possible.    There are to many CF’ers who wait for lungs who meet the low PFT’s criteria.

    The main thing to always remember . Even CF’ers with low criteria PFT’s have to be a match to their new lungs. So that miracle set of lungs with Jody’s name on them is not meant to go to any of those other CF’ers. That being said Jody can get lungs before thos others and can do much better just because he is not in the terminal stage of CF.

    I did not want to weigh in my opinion after you last blog saying WHAT IS THE RIGHT THING TO DO ?      BUT   I feel in my heart you and Jody have made the right decision.    Just because of our personal experience of the loss of Sonia.

    Don’t think to much about   ( the just 5 – 10 years ) that new lungs can work.  We have a friend ( Dave ) CF’er who was 27 when he got his new lungs in 1998.  He is now 43 years old.  AND  it is 16 years later and his lungs are still working and have even worked through the hurdle of cancer over the last 2 years.

    Yes, I know people say    But   Dave is a exception to the rule. Jody can be too.    Sonia always believed that without Quality or life Quantity is nothing.

    God be with you all. Thanks again for sharing the news of Jody’s transplant listing.  Hang in there. One day at a time.

    I am sorry this email got so long.

                                                   A special friend who knows                                                              PAULA

    • CF Wife March 28, 2014 at 8:10 pm #

      Paula, we too are hoping that Jody is the exception. Hearing stories like Sonia’s confirms that we are making the right decision. I just wish she too, had had this opportunity before it was too late. Thank you for keeping us in your prayers.

  3. Marilyn Titter March 28, 2014 at 9:14 pm #

    Sonia’s story is all to real. I am glad all the doctors are in agreement. I am sure that gives you confidence. Now I will pray for Jody’s good health until you get the call and both can walk into Hopkins for the transplant. I am right there with you all the way. Just call if you need to talk. Be strong. Everyone is on your side.

  4. Ruthie March 28, 2014 at 10:07 pm #

    Thank you for the update! Continued prayers for you all!

  5. Hippie Shepherd April 22, 2014 at 5:17 pm #

    Reblogged this on My Second Life and commented:
    Please, please, please become a registered organ donor. April is National Organ Donation month. Please spread awareness. Donating an organ or even bone marrow or tissue is truly the biggest gift you could leave behind for someone.

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