Wednesday we traveled back to Hopkins for Jody’s first post-transplant visit in the Transplant Clinic. For now this will be a weekly occurrence with the goal to gradually increase the space between appointments. As I mentioned in my last post Jody’s first week at home was a rather miserable one as he dealt with painful abdominal cramps and bloating which made eating difficult. These symptoms were the result of a bowel obstruction. There were so many possible causes for this: Narcotics, dehydration (for so much of his hospitalization he was on severe fluid restrictions, both oral and IV), too many CF enzymes (since he has lost so much weight-now down to 105 lbs, his enzyme requirements are less), and CFer’s in general are prone to obstructions (although it’s never been an issue with Jody in the past). There are other possible causes as well. At this point we didn’t care so much about the cause as we did getting it fixed. For two nights Jody did GoLytely, a type of bowel prep that is often used prior to a colonoscopy to clean out a persons system, so to speak. When this failed to work we knew he needed something more invasive. A barium enema was added as first on our list of things to do on Wednesday. This basically includes filling the colon with a special liquid (barium) so that it becomes visible on x-ray. A blockage can then be identified and hopefully broken up. Jody was definitely obstructed but thankfully the procedure worked to fix it. Immediately after the procedure we went to eat lunch and he ate more than he had all week and the best part was that he didn’t have that painful cramping in his abdomen as a result. He’s been eating and pooping ever since, and it’s great to see him feeling better. Hopefully this (obstruction) won’t be an ongoing issue that he has to deal with going forward.
The rest of our day long but was rather uneventful. Jody had a chest x-ray and then his first post-transplant hopsital PFT’s (pulmonary function testing). He now has a machine at home to check these twice a day and we were anxious to see how the home machine correlates with the hospital machine. The numbers were surprisingly close. His lung function this day was 64%!!! When we left the hospital a week prior he was at 50%. This number is expected to continue climbing and we’re told usually peaks between 6-12 months post transplant. I still can’t believe how easy Jody makes this testing look compared to a few short weeks ago. Even the tech who performed the test commented on how neat it was to see him walking in there, no oxygen, and able to do the test so effortlessly. Can you imagine how ‘easy’ it will be for him as his lung function increases? I’m so in love with these new lungs of his!
In clinic we met with Jody’s transplant coordinator and the doctor. Jody’s primary transplant doctor also happens to be a CF doctor (one of the few who works both CF & transplant) so it’s been neat to see him through the years as one of Jody’s primary CF docs and now his primary transplant doc. At his appointment we reviewed his extensive medication list and made some changes. We reviewed all the home self-monitoring data we’ve been recording (vital signs, weight, PFT’s). They checked out his incision and all the healing sites where tubes and lines were removed. Dr. M listened to his lungs, smiled and said, “You’re lungs sound SO good!” Those words seem so foreign after years and years of unclear lung sounds. It’s music to our ears. Jody’s x-ray did show that he still has inflammation and fluid in his lungs (we knew this when we left the hospital) so hopefully this will resolve on its own.
Jody’s been having a hard time sleeping at night because he needs to stay at a 30% angle. He has pillows propping him up so that his shoulders stay upright but it makes it hard to change positions at night. It’s also hard for him because he is not normally a back sleeper. He wakes up with back and neck aches. Some nights he even sleeps half of the night in bed and the other half on the couch. I never quite know where he’s going to be when I wake up. Jody talked to the doctor about this in clinic but they hold firm to the fact that he needs to sleep upright to prevent another aspiration episode (even though he doesn’t eat for over three hours before bed). I’m going to order Jody a wedge pillow I found online to see if that helps. Jody has thought about buying a recliner chair but that doesn’t seem like a reasonable long-term solution; we’re too young to sleep in separate
chairs beds. If this is a lifelong thing we may need to break-down at some point and order one of those mattresses that sits up. For now I hope the wedge pillow will work, obviously that’s the easiest and cheapest solution.
The last two days have been much better than all the previous days at home. It’s been great to see Jody eating again and not paying for it afterwards. Speaking of food, many of you have asked how you can help, and here is one way you can bless us. Our friend Kendra has kindly set up an online meal schedule for us. Meals are so wonderful, especially for me, so I don’t have to worry about cooking in addition to taking care of Jody and our girls. When I go back to work I know they will be even more helpful. If you are interested in bringing us a meal you can CLICK HERE to sign-up online. Thank you to those of you who have already signed-up or brought a meal, you don’t realize how helpful this is to us, and we are so very grateful.