Since 2006, I’ve done a lot of research and friend-making in the CF and lung transplant community. This stepped up in 2016 when I began to realize that I was below 30% FEV1 (predicted lung function measuring volume expelled in the first second based on my age and size) and I suspected that it wasn’t going to bounce back. My wife was much more optimistic about it and that’s why she continued in mini-denial as this process started 2 weeks ago.
I’ve walked online (as you’re now doing with me) with at least 20 people who were either on the list, recently transplanted, or were being re-transplanted (you can receive a second transplant if you’re compliant with your regimen). I’ve read more than my fair share of journeys that brought this hard-shelled guy to tears at the joy of breathing deeply for the first time they could remember. I’ve read more than my fair share of journeys that ended either without lungs or without a second set of lungs and read the description of what kind of death that is.
Once I got married, there was no question that I was getting a transplant. Once we adopted our first son, I found out that there is another level beyond “no question.” Now that we have a 15-month old… yup, there’s another level beyond that. My story isn’t done. I’ve got more to do here, and that includes seeing a couple of careers and families start and pass on the family name.
What transplant looks like
When a donor pair of lungs become available, they check the immediate area first and then go out in bands of 500-mile radius in turn. They will search up to 24 hours for a new host. CF doctors are more picky about the donor than most because we, as a population, are much younger than, say a COPD or emphysema patient. Shocking, but it makes no difference in your list ranking if you were born with a lung disease or self-inflicted your lung disease after 50 years of ignoring surgeon warnings on packs of cigarettes.
Once listed, you can’t travel more than 2 hours from your transplant center so you can arrive quickly. That means we can visit Orlando and some gulf beaches, but not the Atlantic beaches or a conference in Miami or Jacksonville. When you get the call to come in, you don’t know if you are the primary or secondary recipient. They run lots of tests on you and the lungs. When the lungs arrive, you’ve often been waiting 6, 12, 18 hours and are prepped for surgery and ready to go.
My transplant center (if I read their information correctly) makes an incision on each side and spreads the ribs far enough to slide lungs in and out. Another option is a long incision along the underside of each pectoral muscle all the way across the chest. Google for images if you want – I’m not going to flash them in front of everyone.
Once under anesthesia, they make the incision and prep for new lungs. They then inspect the lungs on-site and make a call on whether to proceed with removing your lungs. Depending on your ability to survive on one diseased lung, they may place you on a heart/lung machine. While closing back up, they place two chest tubes and a drainage tube to allow the fluids from swelling to drain and to allow the lungs to fully expand in the chest cavity.
Surgery takes 3-6 hours, but sometimes much longer if the diseased lungs are severely plastered to the chest walls. Our center has a really good system for updating family on the progress of procedures and I expect that to be as good or better for something like this… and I REALLY hope someone takes photos or video of the whole thing for me.
After surgery, it’s time to go to CTICU (cardio-thoracic ICU) for 3-5 days. At this center, they let you recover for a few hours or a day but then they want you sitting up to let the lungs hang and start to creep into all the spaces of your chest cavity. I was informed during evaluation that my doctor is very anti-opiates and will manage pain with an epidural until discharge. I know at least one person who has been transplanted under his care, so I’ll be asking him about the pain.
After CTICU, we move to the transplant unit, which has nurses who are very familiar with the situation and bring another level of care that isn’t on the main floors. They are in charge of monitoring for rejection, administering the pain plan, antibiotics, and getting me used to the medicine schedule as soon as possible. It’s around this time that they ensure you don’t need to be intubated again and can have the chest tubes pulled so everything heals up.
Before long, really just a couple of days if things progress well, they get you walking with assistance. When they’re sure you’re able to get about enough to come back, do your own meds, and are tolerating any pain, they send you home after 10-21 days in the transplant unit.
For about 3 months, I’m not allowed to be left alone in case I need something or something happens and I’m incapacitated. So if we need something, I need to go with my wife, someone needs to come here to be with me, or someone needs to go do the thing we need… for 3 whole months.
The first month also includes two weekly trips to TGH for rehabilitation of my lungs and all the limbs that slowly lost mass and strength as I reached this point. I noticed leaving the hospital that my skinny jeans are no longer skinny – I have quite a bit of room in them now. It’s pretty easy to reach both hands all the way around my thigh, which I haven’t been able to do since pre-Fatboy.
Then there are once weekly rehab trips, numerous bronchoscopies, biopsies, daily home PFT tests, and getting into a routine taking medicine throughout the day, not just whenever I wake up and whenever I go to bed.
That’s all I can think of now. Anyone who is on the other side of a transplant, feel free to chip in. When I am on the flip side, I’ll link to this and link this to that one and see how similar they are.
My hospital has now performed over 500 lung transplants!