Two Down, Ten to Go

9 Nov

All things considered, Jody had a good week.  He’s eating well (many thanks to the people bringing delicious meals), he gained a pound, and he was even a little more active at home. On Monday he had a local speech therapy session where they taught him additional exercises to strengthen his swallowing muscles.  It seemed kind of pointless because he had already been practicing the strategies he learned while in the hospital and on Wednesday he completely and totally passed his sixth swallowing study.  He no longer needs to use his adult ‘sippy’ cup, he can drink without fluid restrictions, and he can eat foods of mixed consistency (like cereal with milk, or soup).  At this point he is still taking his pills with Jell-O or pudding, but he’s been cleared to take them with water, just one at a time.  Jody was very excited to have passed this test.  I’m glad too but feel a little cautious after everything we’ve been through.

At clinic on Wednesday Jody’s PFT’s were 73%!!!  One week ago they were 64% and the week before that they were 50%.  It’s mind-blowing!  This past year watching Jody’s PFT’s had become something I dreaded, they were so disheartening, and a little too much reality that his lungs were failing.  Now, with two healthy lungs which are getting used to their new home, his PFT’s are not so depressing.  In fact, they’re actually uplifting.  Watching those numbers climb is confirmation that transplant was worth it. We hoped for this.  We prayed for this.  It hasn’t been easy, but we thank God for this gift.  There is a reason people refer to organ donation as ‘the gift of life’… because it is… truly.  I may not speak of it often, but we have not for one day forgotten Jody’s donor and his/her family.

Also at clinic this week Jody lost his metal!  If you’re not following me, I’m talking about his staples… all 67 of them.  After seven weeks his incision had healed well enough and the staples were ready to be removed.  It was simple and painless, and now he has one less (or 67 less) things on his body that don’t belong there.  The day he gets his feeding tube and central venous catheter out will be another day to rejoice.

Because Jody was not on enough medication (enter sarcastic tone), he was started on five new meds this week.  The most notable one is a medication to lower his blood pressure, which has been elevated as a result of his immunosuppressants.  To help with his high blood sugars we’ve started giving him four extra units of insulin on top of the sliding scale at breakfast, lunch, and dinner.  Remember that unlike ‘normal’ diabetics he doesn’t need to limit his sugar intake (because of his Cystic Fibrosis).  For now this increased insulin seems to be working.  Jody was not diabetic before transplant and it is still possible that once his Prednisone dose is tapered down (currently he is on 17.5 mg), his sugars might improve.  However, this could also throw him into full-blown diabetes.  Time will tell.  Obviously our hope is that he will not be diabetic for life.

As you may have noticed, there are so many side effects to the medication Jody is required to take.  I just mentioned high blood pressure and high blood sugar, but it doesn’t stop there.  The Tacrolimus causes his hands to shake noticeably.  Our oldest daughter has asked more than once, “Daddy, why are your hands shaking so much?”  These shakes even render his handwriting illegible.  We are told that with time his body should adjust to this medication and the shakes may be less.  Jody still has blurred vision (although not nearly as bad as in the hospital), and this past week we noticed his speech was off.  When we mentioned the speech thing at clinic the team didn’t seem to have an answer for it or to be concerned by it.  Anyone who knows Jody can pick-up on it pretty quickly.  It’s hard to know what could be causing it if it’s not a known side effect of his medications.  I guess we’ll just keep an eye on it and pray that it resolves with time.

Friday Jody started his first pulmonary rehab session.  This is done locally and actually he was doing this at the same center pre-transplant.  Then it was to preserve the lung function he had, now it’s to improve it and get him back into shape.  Pulmonary rehab is basically guided exercise.  Jody is very deconditioned right now so he is looking forward to rehab and the strength it will give him.

There are plenty of moments when Jody or myself are frustrated that things are not moving along as fast as we would like them to (even though we know he has come a long way).  Usually this happens when he would like to be doing more or when I wish he could do more.  I was thinking about this the other day and realized that because we have been talking about a double lung transplant for so long, it’s become the norm to us and has lost the wow factor.  Don’t get me wrong, it’s still huge and we know it, but sometimes we forget just how huge it is.  It’s not until I tell a complete stranger and watch their eyes grow large, and hear, “Oh, wow!” spill from their lips.  It’s not until I hear the lead anesthesiologist who was in the OR with Jody (1 of 4 who were there) say that a double lung transplant is the hardest thing for an anesthesiologist to perform, “By far harder than a heart transplant.”  It’s not until I hear from a transplant coordinator that a lung transplant requires higher doses of immunosuppressants than any other transplant performed today.  And this week, it was when the transplant doctor said that it takes ONE year to fully recover from this surgery that I was once again struck by the magnitude of it.  We have been told this before by other lung transplant recipients but this time it really hit home.  In this day and age people have major surgery, go home a few days later (if not the same day), and are back to work a few weeks after that.  When I hear that it takes ONE year to recover from this three and a half hour surgery, I become that wide-eyed person, appreciating the greatness of it and I too utter, “Wow!”  When we remember this, we embrace the progress Jody has made already and know not to rush his recovery.  A year sounds like a long way off when our lives have already been on hold for a year, but what’s another year when he has the rest of his life to live after that?  Sometimes I feel that people think that since Jody is home all is well and that transplant is done.  As you can see, the surgery is complete but this is far from over.  Two months down, ten months to go…


11 Responses to “Two Down, Ten to Go”

  1. Sheryl November 9, 2014 at 6:51 am #

    Things are looking good! Keep up the good work Jody!!

  2. Sharon November 9, 2014 at 9:24 am #

    Great news , keep up the good work. One day at a time ,you’ll be back in your shop before you know it !

  3. Kelly November 9, 2014 at 12:18 pm #

    Great to hear of such progress. Keep up the good work jody and your body will follow. You have had so many hurdles, and there may be some that pop in from time to time. But remember that you have a God that will help you conquer each and every one of them as he has this whole time.

  4. Lori Harvest November 9, 2014 at 7:35 pm #

    Tiffany, I love your blog, and as I’ve said before…you need to publish your words. It’s so well written for those who have no understanding of the complex issues involved. I feel as though I’m there with you, and have since the beginning! So happy for the positive progress that Jody is making! Prayers continue for progress and strength for all of you.

  5. Marilyn Titter November 10, 2014 at 8:00 am #

    Great news Jody and Tiffany! So glad you are going back to rehab, give all the staff there who knew Paul, my love! Every day a little better. Take a deep breath for me:)

  6. Ruthie November 10, 2014 at 1:49 pm #

    Thanks so much for sharing and keeping us posted, Tiff! We are rejoicing with you in the progress being made – and our prayers continue for all that is still needed!

  7. Hippie Shepherd November 10, 2014 at 5:07 pm #

    I don’t think it will take a full year for him to recover. It can vary but I think he will do better than that. Especially with how fast he is coming along already. It took me only a few months before I was fully healed and fine. Though I had intestinal complications related to the massive weight loss right after surgery, so it took longer for that part to get better. It took about 5 or 6 months to gain all my weight back plus more and that was when I was finally Healthy for the first time in my life! 🙂 I think it will only take a few months to get to being good as new, at least I hope and pray for that.

  8. Candace Hansell November 10, 2014 at 11:49 pm #

    Keep up the good work! those PFT scores are awesome! Hope this week brings more good news

  9. Cindy November 18, 2014 at 12:25 am #

    Jody and Tiffany,
    Keep on keepin’ on. You’re the perfect example of INSPIRATION to others. I’m very happy for your continuous progress. So profound, what you’re enduring together.
    Thinking of you often.
    Aunt Cindy & John

  10. Marian Ressel November 23, 2014 at 6:32 pm #

    Just remember Tiff…365 days seems like an awful lot, then before you know it, another year is shot!! Seriously, I can’t believe that Jody had 67 staples in him for 7 weeks. 7 weeks!! I take out c/section staples in three days! I remember having staples after my c/section and at that time they left them in for 1 week. The skin was starting to grow around the staples. I felt so much better after they were removed. I can’t imagine how Jody must have felt.
    Your post was very uplifting. I am so glad Jody is home and things are looking up. Prayers continue.
    Love, Marian


  1. Remembering 9.15.14 | CF Wife - September 16, 2015

    […] He survived!  I survived!  We, as a family, survived!  I remember writing the blog post Two (months) Down, Ten (months) to Go, referring to the 12 months the doctors say it takes to recover from a double-lung transplant, and […]

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