Tuesday, August 31, 2010

Overdue Medical Update

so, it's been a while. i just got back from a doctor's appointment, and i guess there is quite a bit from the past two weeks to recap, healthwise.

a couple weeks ago, i started experiencing this weird feeling in my throat, like something is lodged there and won't go down. so every time i swallowed, it was pretty uncomfortable. it got worse over the past week, so yesterday i underwent a barium swallow study: basically i drink a thick, chalky liquid in various standing and laying positions while they take pictures of my esophagus and upper g.i. area. the results were inconclusive in terms of the swallowing issue, but did show more acid reflux. so today dr. H upped my acid reflux med and ordered a throat CT w/ contrast (tomorrow a.m. -- yippee) to check for inflamed nodes or something of the sort that may be pushing on the esophagus from the outside.

meanwhile, the stomach issues have been coming and going. had some severe pain a few weeks ago, then it went away, then it came back, etc. so we are swapping out two of the g.i. meds (reglan and erythromycin) for domperidone, a med not approved in the US, but used extensively in canada (where dr H used to practice). this means i have to order it from some pharmacy in canada. just one more hassle. but hopefully it will solve the stomach issues.

of paramount importance, of course, are the lungs. i had a bronchoscopy this past friday. no rejection, no growth of fungus or bacteria, no major cleanup necessary. the only hiccup was that the left anastamosis (the one that had the stent for the dehiscence) healed very narrowly. so it took some forceful prodding to get the bronch scope in. the resulting inflammation and all the poking and prodding knocked me off my feet, so to speak, for a few days. but it looks like the airway may have opened up a bit, because my FEV1 (lung function) is up to its highest point, at 49%, a marked increase from testing three weeks ago. but as a result of the narrowing, unless the lung function drastically improves, they may need to put in a sort of balloon to widen the airway in november.

the other open issue has been my energy level, which has been particularly low the past couple weeks. this one seems to be a mystery. all the blood levels have come back normal and we can't seem to pinpoint the cause. i'm discontinuing one heart med that may be contributing to the problem, but otherwise it seems to be a wait-and-see sort of scenario. hoping that fixing the other problems will help fix this one.

that's about it. overall, i'm no tin bad shape. no major setbacks. just a few little ones that are being consistently uncooperative. so hopefully something will break in my favor. and hopefully the CT tomorrow will illuminate this swallowing issue. and with any luck the lung function numbers will start climbing regularly now.

Wednesday, August 18, 2010

nothin doin (america edition)

so i have little to nothing to report. but, of course, no news is good news.

my bronch has been pushed back a week for scheduling reasons, but i went in yesterday for some bloodwork. i haven't heard back about any of the results, which means everything is a-okay.

after bloodwork, i decided to waste the day in high american fashion, so i spent a few hours driving and walking around valley forge. honestly, i spent less time thinking about the torturous winter months of 1777-8 than about things like "i wouldn't have been able to walk up this hill 3 months ago" or "i don't even care how far away i park anymore". a different sort of introspection than the founders intended, i'm sure.

to make it an even more american day, i proceeded to a mall. and not just any mall, but the vast, unwieldy megacampus of king of prussia mall. why did i do this, when i so obviously hate malls? i was looking for food. of course, i ended up parking on the complete opposite end from the food court, so i got plenty of exercise and wandered into plenty of stores for no apparent reason. in my travels i managed to acquire 1 sandwich with fries and coke, 1 crazy indie novel, 1 dirt-cheap pair of jeans, and 1 iced coffee.

and that was about it. some history. some selfish introspection. and some consumerism. pretty darn american.

Wednesday, August 11, 2010

(bi)weekly medical update

yesterday (tuesday), i saw my doctor for the first time in a month. he'd been on vacation in europe while i'd been on duty in rehab. hardly fair, but what are you gonna do. he had been following along and giving orders from abroad, though.

my lung function is no better or worse than it was 2 weeks ago. in a glass-half-full world, this is good news, because nothing is wrong and my lungs are already in better shape than they have been in 15 years. in my world, this is frustrating news, because i expect my lung function to improve beyond 46%, but it is constantly stagnating. dr. h. said the l-fn could improve for as long as 1 year before it levels off, or it could very well have already levelled off. the sound of his voice wasn't super-confident when he talked about my l-fn slowly increasing to 80%, but maybe i'm just projecting. anyway, only time will tell.

and apparently time is about the only medicine for my recent g.i. issues. i've been having some severe stomach pain in the evening, after dinner, for which there is nothing to be done but eat a little less and wait. that strategy made sense to me two months ago, but now it seems a little inadequate. i really thought i was done with the stomach issues, but they've resurfaced the past couple weeks.

there is good news, of course. news good enough that even i can't spin it negatively. blood sugars have been fine, so i am the rare case of a cf patient not developing diabetes post-transplant. rare as in less than 10%, as in only the second patient dr h has had in the past 5 years. so the plan is to still check it a few times a month, just so that i don't miss it developing at a later date (which could still happen), but otherwise i am free of that hassle for now.

dr h scheduled me for a bronch in two weeks (just to check everything out and be on the safe side). and otherwise just occasional blood work and less occasional chest xrays and office visits. so i'm just chillin in philly for the foreseeable future.

Tuesday, August 3, 2010

rehab is fin

today was my last day of pulmonary rehab. it took all of 6 weeks, and a gruelling six weeks it was. to complete the rehab, i did a 6-minute walk today (standard eval sort of thing). basically, you walk back and forth down a hallway for 6 minutes, with your oxygen saturation and heartbeat constantly monitored, and they measure how far you walk and how fatigued and out of breath you get. i walked 30% farther than i had at the beginning of the 6 weeks, and comfortably farther than i ever have before (i've been doing these periodically for many years). so i guess the rehab was worth it. now i just have to figure out my home exercise routine, and some sort of progression of exercise to get me from walking to running. tips/advice welcome.

in other medical news, since i've been ok for the last week, they finally pulled the picc line, so i am now completely unfettered. and blood work has been knocked down to once a week, doctors visits bi-weekly, and xrays every two or three weeks.

so, i will be coming up to nj for a long weekend on thursday. ill be in wayne till monday, so if you're around....

i think ill spend wednesday at the philadelphia museum of art. ill probably be able to make it all the way up the rocky steps, and then i can relax in front of some renoir.