weekly medical update -- all star edition

hello my little droogies.

every tuesday, in addition to rehab, i have an appointment in the transplant clinic with Dr H and one of the Nurse Practitioners. this appointment is basically the full medical touchpoint, with issues ranging far and wide, long- and short-term, small and large, minor and major. and while medical news creeps into most every post on this blog (that is the point, isn't it?), i figured, since i'm getting a comprehensive update once a week, i'd give you one too. aren't i considerate?

this week, my regular nurse practitioner, B, was on inpatient duty, so dad and i met with N instead. we know her pretty well from emails during the listing and waiting process, and she's super smart and calm and prepared. we had a long talk with her and Dr H joined in after a while to add his doctorness to the equation. so here's the deal.

on my inability to sleep: basically, i haven't been sleeping too well. i'm up every day by 5:30 when the nightly percocet wears off. and i'm waking up about once every two hours (which is an improvement on the once-an-hour pre-transplant). part of it is pain, part of it is medication side effects. they don't want to prescribe any sleep aids, because i'm already on so many other meds that might interact, and because i've never before been on anything for sleep. so N's recommendation is to a) cut out caffeine after noon, b) relax in the afternoon but don't nap, and c) establish a consistent sleep routine with good sleep hygiene (which i think is a pretty awkward/funny phrase; makes me think more of bedwetting than anything else). i'm not really sure how i am supposed to simultaneously a) cut out caffeine; and b) not nap. coffee has always been a crutch for my inability to nap. as for establishing a sleep routine, it's harder than it sounds. for my whole life, my sleep routine has revolved around the 40-60 minutes of nebulizer treatments i had to do before and after bed. i don't have to do those anymore -- which is awesome, obvi -- but it leaves a big gap in my routine. tucking myself in these past couple weeks has felt awkward and unnatural to me. i have a feeling neither of these is going to counteract the drugs/pain issue, but i'll give it a try.

on my malfunctioning gut: the combination of a) cf digestive issues, b) the trauma of transplant, and c) the side effects of so many meds, has also resulted in some seriously uncomfortable gastroparesis. things just aren't moving properly through my gi tract. the result is some serious pain and discomfort after eating, and major gas issues (from both ends). (tmi? yea.) the problem of course is that i need to eat, and i need to really eat more than i normally would in order to get through the recovery process. which is, of course, in total conflict. i'm already on plenty of gi meds to try to counteract the side effects of the other meds, but they only do so much. the gastroparesis seems to be getting slowly better, but it is still mighty uncomfortable. (and the distended belly that comes with hides my previously perfect abs, which is disheartening.) but apparently, the only brilliant scientific resolution is: time. so i'm just supposed to keep doing what i'm doing and it will slowly resolve itself (hopefully) over the next few weeks.

on my swollen ankles/feet: my dame judy dench cankles returned this past weekend. i'm told it is not a major concern, as long as the swelling goes down every night, which it does. so i'll just keep an eye on it and try not to think of margaret thatcher.

on diabetes and blood sugar levels: not sure if i have mentioned this before, but i have added diabetes to my list of maladies. it was not unexpected. in fact, the incidence of diabetes in post-transplant cf patients is something close to 90%. it may go away as i am weened off some of the drugs, or it may be permanent. there's really no way to tell. but for now, i am cutting out lots of sugars, taking my blood-sugar levels three or four times a day, and dosing with insulin with every meal. it's a serious pain in the ass (or really, in the fingers) so hopefully it is transient. but it is under control for now, at least. i just have to keep the milkshakes to a minimum.

on tac levels: the major/most important drug i am on is an immunosuppresant called tacrolimus (or prograf). it is the main weapon in fighting organ rejection post-transplant. my blood levels are tightly monitored (twice a week) to keep the tac level at the proper range, and then the drug dosage is adjusted accordingly if things are not quite right. it often takes a few weeks for the tac levels to really settle into place, and mine have been fluctuating up and down from the low 5s to the high 19s. at this stage in the process, my tac is supposed to be between 8 and 12. monday's blood test put it at 5.2. so we have upped the tac dose back to 2.0mg. more blood will be drawn thursday to see how that's going.

on prednisone: in other dosage adjustment news, the weening off the prednisone has begun. prednisone is use post-transplant to help fight infections. it's also used to fight rejection, should that occur (it hasn't yet). it is one of the drugs that is a) screwing with my sleep; and b) causing the glucose/diabetes issues. so it's a good thing to start dosing down. Dr H dropped it from 30mg to 25.

and now on to the lungs, the part i know you've all been waiting for.

on my lung function: the primary test used to monitor my lung function is a pulmonary function test (pft) called a spirometry. it basically measures how much air i take in and push out. from that test, the benchmark number used to gauge my lung function is called the FEV1 (forced expiratory volume in 1 second). basically, it is a measure of how much air i can blow out in the 1st second of exhaling. pre-transplant, my fev1 was about 22% of normal/healthy/predicted. yesterday it was 41%. that is only a slight improvement on the 38% from last week, but it is higher than it has been since high school, and it is moving in the right direction. my FVC (forced vital capacity), the other major benchmark, measures the amount of air i blow out in the full exhale. that number is climbing at a much slower rate (and is actually still lower than pre-transplant), but this is to be expected. so all this is good news, droogies.

on my chest CT: last week, my chest xray showed two small pneumothorax. this means there were two pockets of air in my chest cavity where my lung should be. it's often caused by a partially collapsed lung. in this case, the pneumothorax is the result of a slight mis-sizing of the donor lungs. (it wasn't an error, it's just the reality of the situation that no two people are shaped alike.) basically, the lungs didn't quite fill my chest cavity, so there are some air pockets in the spaces. this should resolve itself over time, as the lungs expand, but we have to keep an eye on it to make sure it doesn't get worse for whatever reason. to that end, last week i had a chest CT done to rule out any major issues. the chest ct showed that a) the pneumothorax is very small and not a major problem, and not getting worse; b) the sternum is healing/fusing nicely and smoothly; but c) there seems to be a slight infiltration of pneumonia in the lungs. Dr H has decided not to overtreat the pneumonia since i am not showing any symptoms, but he has moved up the 6-week bronchoscopy to this week (which will be about 4 weeks) just to be on the safe side (and because he's going on vacation soon). so the bronch is scheduled for friday, which sucks something awful because i had some much anticipated visitors planned, and because i may miss the end of the netherlands-brazil quarterfinal. (go orange!) they'll be taking a biopsy to check for rejection and assessing the pneumonia issue. it should be fun.

a further note on the chest CT: over the years, i have seen dozens of my chest xrays, but i'd never really looked at one of my chest CTs. a few months ago, A, a med student friend of mine, showed me examples of a ct of lungs with bronchiectasis (present in CF, it is the enlarging/inflammation of the large airways). she also showed me a healthy lung CT (where the large airways -- those enlarged/inflamed circles -- are not visible). the difference, you'll noticed, is pretty marked. i had much the same reaction to that juxtaposition as i had when i saw the pictures of my explanted lungs: how did they work at all? yesterday, my ct looked like the healthy lungs. and to see the clean, healthy ct was sort of exhilarating, just like seeing the clean xray not long after transplant. it's mind-boggling to think what was there before.

my regular NP, B, stopped in to say hi and pulled out the final stitch from the chest tube holes. so all the stitches are out and i'm left with just scars and scabs. (and some staples in my chest, but you can't see those with the naked eye.)

overall , the visit went well. to give you a sense of the big picture, i'll tell you what N told me. when i asked her how i am doing in terms of the overall progress of my recovery she said, "you are an all star."

i refrained from agreeing with her out loud. you know, because i'm modest.


thanks to everybody at audible who sent a note with the care package. they took me quite some time to read through, which is a very good thing on so many levels. i look forward to seeing you all soon. no, really, i do.


perc dreams update: i've noticed that i've been getting beat up or shot in a large percentage of my dreams, especially toward morning (ie, when the nightly perc is wearing off). i'm wondering if this is my brain trying to explain why i feel like i "got hit by a bus" (which is a phrase every one at upenn uses to describe how your body feels post-transplant). that's not helping my sleep either.