This is going to be a long one, but it will illustrate and explain everything that has happened in the last week while I was admitted to the hospital for my poor lung function.
Before someone can be placed on the list for an organ transplant, they need to be evaluated. For a double (bilateral) lung transplant, this list was quite extensive. I don’t think I am missing anything in this list because I took notes, but I’m not 100% sure it has every little thing and I don’t need some items based on age, gender, and previous treatments.
- Upper GI exam
- Bone density scan
- Ventilation–perfusion (VQ) scan
- Chest CT scan
- Chest x-ray
- Approximately 18 vials of blood
- Blood type/tissue type test
- Organ ultrasound (everything in your trunk)
- Heart catheterization
- Full pulmonary function work-up, including 6-minute walk test
I still need an appointment with my dentist, eye doctor, and a dermatologist. That’s it for me as far as physical exams, but the evaluation didn’t stop there. I met with every member of the transplant team, which included:
- Transplant pulmonologist (my usual CF doctor)
- Transplant coordinators (3)
- Transplant social worker
- Transplant financial counselor
- Transplant psychologist
- Transplant pharmacist
- Transplant cardiothoracic surgeon, fellow, & nurse practitioner
- Transplant anesthesiologist (I guess this comes later)
I have some notes on my personal experiences with these exams and then the experts who met with me/us.
The upper GI is only unpleasant because barium is unpleasant, but I’ve tasted many worse things… sometimes at a dinner table. I’d place the taste as drinkable marshmallow, but almost as thick and without the initial punch of sweetness. Definitely a dessert aftertaste, though. This tests for reflux, and I bombed this exam so a future procedure called a nissen fundoplication is possibly in my future to prevent passive acid from coming up my esophagus and drip into my new lungs. It’s a big reason for organ rejection after transplant.
Of course chest x-rays and CT scans are completely non-invasive and are quite quick. The CT scan was shocking to see how much of my lungs have been ravaged by CF with mucus, scar tissue, and cysts. A very large portion of my upper right lung is filled with cysts and other unusable tissue.
The chest CT was, hands down, the most shocking information I’ve ever received about my health. It put how I feel into a very real, visceral sense of what is happening to me – to an organ I can neither see nor touch.
EKGs are super quick and painless, as is the echocardiogram. The ultrasound takes quite a bit longer, but it’s also just a laying down and relaxing exam.
Now for my favorite exam: the VQ scan. It’s used to compare the airways with the vascular area so they can determine if there is a blood clot or bleeder anywhere. For the first half of the test, you breathe in radioactive gas (you wouldn’t like me when I’m angry) and then it lights up a fluoroscope for 5-10 minutes. After that, they inject a radioactive dye (I have a central port so I didn’t need an IV poke) and they watch where it goes for 5-10 minutes. I asked the technician why it’s not all over my body and is restricted to the lungs and he told me it’s because the particle size gets filtered by the lungs and gets stuck there until it disappears.
Then my least favorite exam came the day before discharge: heart catheterization. Most of my anxiety over the exam was because I had already been catheterized for my tachycardia surgery last January. I was fully awake and had nothing for anxiety, but I was given plenty of morphine once things began. How much it helped, I have no idea, but I would guess it didn’t start to touch my pain from the procedure. So I was nervous going in that I’d re-experience the pain… coming from someone with a VERY high pain tolerance.
Happy juice never came and the procedure was a replay of last year except this one used much smaller sheaths so inserting the sheaths and catheters was no big deal this time around. Still, on my scale of 1-10, it’s still a 12 for me. I told them this didn’t get any easier the second time and that’s off the charts pain. The technician assured me that I rocked because I didn’t actually scream or cry and he’s seen many battle-hardened marines cry like a baby on that table.
So there’s that to prepare me for what to expect in recovery from having my body torn apart and put back together. I’ve already put a stake in the ground and said I’m going into this with the goal of exceeding every expectation and mark they have and set for me. I was never able to join the Marines because of CF, but I have always felt like one.
The majority of my visits were just someone popping in to introduce themselves or a quick 3-5 minute series of questions about either my history or some family medical history. Some of them went on for 20-30 minutes, so here are the longer ones.
The pharmacist ran down all of my current meds and showed me a list of post-transplant meds. Of interest was the complete lack of nebulizers or inhalers. None. Not a single inhaled medicine. A general cross-section of the list includes two anti-rejection meds, an anti-viral, and anti-fungus, and a spattering of other meds that I’m already on in one form or another. Soooo… I’ll be stopping about 5 inhaled meds and two hours of every morning in exchange for about 5 pills.
The social worker needed to ensure I have a support network in place to take care of me after transplant. I’m not allowed to be left alone for 3 months, even to go pick up groceries or our son from school. So I either need to go with her everywhere, have someone else stay with me, or have someone else do our thing. I’m very blessed to have both our parents close by and both of my wife’s siblings and their spouses also in town, so we have lots of hands to share the load between taking care of us and the boys.
The financial counselor needed to ensure that we can pay for transplant and the meds that come after. No problem. I’ve got a grandfathered health insurance plan that we pay out the nose for with premiums but the deductible and max hasn’t changed in 8 years. I’ve never felt so justified paying these rates and resisting to participate in the current insurance market. My paranoia has finally paid off on this long-standing financial decision. When all is said and done, it’s possible that my meds and visits will cost insurance and us less than we currently do.
The psychologist just interviewed us about who we are, our family, what I enjoy (LEGOs!) and do for a living. Then he asked about our mental history of counseling, treatment, and medication. There’s a support group for pre- and post-transplant once a month that we may visit because I’m one of the few able to come pre-transplant. He said it’s all post-transplant now because the others on the list aren’t able to make it. So why not make an appearance and see what they have to say about where I am now knowing where they are now?
That’s enough for one post. More on transplant and how I feel in two other posts.