Wednesday, July 28, 2010

weekly medical update

had yet another of the weekly doctor appointments yesterday. Dr H is still gallivanting around europe, so i saw one of the nurse practitioners again. here's the rundown:

xray is improved. after 3 weeks of antibiotics and the stent, the pneumonia seem to be cleared up and the pneumothorax has gotten a tiny bit smaller. and i've stopped the iv antibiotics, thought the picc line is still in.

all my drug/vitamin levels are within range, though the tac level is at the low end, so may bump the tac back up to 2.0mg.

with the blood sugars totally under control, i can reduce the blood sugar checks (read: finger sticks) to twice a day, down from four times a day. if things stay stable over the next couple weeks, i can abandon the pseudo-diabetes blood-sugar-check behavior altogether.

my lung function was up to 49% (from 45%). good to see it moving up again. let's hope it stays moving in that direction.

and, the biggest news of all, next week will mark the end of rehab. just a few more sessions and i'm out of there. i will have completed the prescribed number of rehab sessions, and i've pretty much peaked in terms of how much they can exercise me in their little gym, so i will be released out into the world to fend for myself. which means i have to come up with some sort of self-motivated exercise routine.

that's about it on the medical front. i'm not due for another check in with the doctor for two weeks, so the weekly medical update may become a bi-weekly medical update. or it may just be totally irregular.

in nonmedical news, i am home alone, shockingly surviving on my own once again. i've officially begun the period of my renewed independence, and what was formerly my parents' bedroom is now officially the guest bedroom. (sorry, mom and dad. but thanks for being here when you were. you are still allowed to come visit.) i have slipped pretty easily back into my living alone routine; it's nice to know that it still comes easily after all this time.

i hope you all have a lovely wednesday.

Saturday, July 24, 2010

Friday Is Bronchday II

because nothing starts the weekend off right like an afternoon bronchoscopy, Friday is Bronchday.

so this time, the bronchoscopy (#4 since transplant, in case you're counting) was supposed to be at 2:30. which sounds nice until you consider that the patient must fast starting at midnight the night before. 2:30 being what it is, i cheated slightly and took my morning meds with 6oz of black coffee. harmless.

so i planned to be at the hospital to check in around 12:30, though i had received no call the night before to confirm. well, at 11a, dad got a call at home from the interventional pulmonology folks to tell me that they had been expecting me at 10:30. so mom and i scrambled to get out the door, and i checked in about 11:20. good thing, too, because then i had to wait 3.5 hours until the procedure. (that brings my total for the week to 8.5 hours in hospital waiting rooms. [it could be worse, jim, i know.])

but in the end, the bronch went as well as could be. they removed the stent, and the dehiscence in the left anastomosis had healed well enough that they did not have to put another stent in. so good news that things are healing and good news that i wont have to undergo another bronch for 6 weeks or so, provided no more bumps in the road. while they were in there, they cleaned up a few secretions and whatnot, but nothing major. so the dehiscence is healed and the lungs look nice and clean.

good thing i shaved off the beard last weekend.

so on to the weekend: a little housewarming party at my cousin's this afternoon (and the house will be warm: heat index to 110 here in philly today), and then some long awaited visitors on sunday.

for now, it's back to my coffee.

Tuesday, July 20, 2010

weekly medical update

there's good news, and there's notgood news.

the good news is, the driving restriction has been lifted. in and of itself, this is maybe not huge. but it is the first step to resuming independence. and it's nice to take a step in that direction. it was also nice to actually drive my car for the first time in 6 weeks or so. it's just like riding a bike. and i didn't hit any cyclists on the way home from rehab.

the notgood news is, my lung function has plateaued again, i have another bronch scheduled this friday to swap the stent, and the IV antibiotics have been extended another week. so none of that is much fun.

the CT scan did show a decrease in the pneumonia and pseudomonas colonization, but the bronch last week seems to have rustled up some junk in my left lung, which is why they're playing it safe and extending the antibiotics. of course, if the bronch does that every time, i'm going to be stuck in an endless loop of IVs and bronchs. unlikely, of course. but i'll feel better when the lung function is climbing again and the bronchs are less than a regular occurrence.

also, they'll be taking another biopsy during this bronch to check for rejection. which is not standard procedure, so i'm wondering why in particular they made that decision.

anyway, dad is heading home tomorrow on the train, so i will be on my own -- for the first time in a long time -- until....thursday night. then mom comes back down because i need a ride to/from the bronch. but i guess 36 hours of independence is a nice test run.

Sunday, July 18, 2010

sans beard

the beard is gone.

playoff beards are supposed to bring you good luck and keep you on a hot streak. right now the only streak i'm on is one of unsatisfying bronch results. so yesterday i nixed the rehab beard, 'cause it aint doin' me any favors.

that is all.

Friday, July 16, 2010

Friday is Bronchday

because nothing starts the weekend off right like a 6am bronchoscopy, Friday is Bronchday.

we -- mom and I -- got to the hospital at 6am on the dot, sans morning coffee (fasting for bronch). well, mom had coffee. i had pills. through admission and gowned by 6.30a.

then we talked to the interventional pulmonologist, Dr G, and his fellow, whose name ive already forgotten, so we'll call him Dr NA. this bronch was to be a lot more involved than the last one, with the possibility of inserting a stent (if the dehiscence hasnt improved) and the possibility of having to do a rigid bronch (which involves inserting a stiff metal tube down the throat, into the airways, through which the Dr can use things like forceps and cameras and various tools that one should not normally have shoved down ones throat). either way, Dr G informed us that this was very likely the first of a long series of bronchs (news to me) over the course of the next few weeks or months until everything looked copacetic, at which time i could go back to having just the regularly scheduled bronchs through the transplant clinic (which is where the first one was, two weeks ago). since they were playing the whole procedure by ear, depending on what they found when they peeked inside, it could take an hour or 4 hours or anything in between.

and with that lovely news, i was rolled into the OR and pleasantly shoved into a drug-induced nap.

did i forget to mention the baby-faced medical student who got to hold the oxygen mask? i hope he didnt get to do anything else while i was passed out, because honestly he couldnt have been over 13. i refrained from all doogie howser jokes, though. arent you proud?

i spoke to Dr NA a couple times after they woke me up (procedure < 60min.) heres the deal: they put in a temporary stent; rigid bronch was not necessary; there was very little cleaning inside the lungs necessary.

the idea behind the stent is to promote the formation of tissue in the left anastomosis in order to solidify and widen the airway. in 2 weeks, theyll go in again, and take out this stent and replace it with another to further widen the airway. this will be done ad nauseum every two weeks until they are satisfied with the state of the airway. as far as i can tell, it might be done 2x or it might be done 20x. all depends on the healing.

as for the cleaning out, the fact that not much was necessary is the good news for the day. very little pseudomonas colonization and mucus clogging. im hoping this means the ivs can be stopped next week, but Dr NA could provide no guidance on this.

now i am home, finishing cup of cafe dos. no plans this weekend. it might be too hot to go outside, ever. we shall see.

Wednesday, July 14, 2010

Weekly medical update

It's that time of the week again: time for the weekly medical update.

Dr H is on vacation in Greece or someplace, so this week's appointment was just with B, my nurse practitioner.

Things seem to be moving in the right direction. My stomach issues are nearly entirely resolved. Potassium level is back to normal. Tac level is a little low, so we are upping the tac dose. Lung function is moving up again after a week-long plateau and is now at 45%.

The big questions will be answered on Friday when they do the bronchoscopy. Depending on what they see when they go in there, they may put a stent in the left anastomosis if the dehiscence is not healed/healing. The look of the bronch will also determine whether or not they continue the IV antibiotics beyond the initial two weeks. Obviously, I'm hoping for no stent and no more IVs.

In News of Christopher's Eventual Independence, the ban on driving will be lifted next week. This is the first step in kicking my parents out of the apartment they found me and resuming something close to independent life. Mom and Dad have been great, and I couldn't have done any of this without them, but I'm pretty eager to make my way back to life as normalish.

MT, my old neighbor, came down to visit last night. So I got a healthy dose of old Wayne. Oh, and cupcakes. Today DD is coming down, so I will be cheerfully entertained all day. And then back to rehab on Thursday. Bronch on Friday. What fun.

Sunday, July 11, 2010

Obligatory post

This is an obligatory post, because it's been a few days and I don't want any of you thinking something terrible happened. All, in fact, is well.

CN came to visit for the weekend and We spent lots of time watching the last two world cup games and walking around aimlessly and just generally doing lots of nothing.

Next week's schedule: blood work, rehab, xray on Monday; rehab and appointment with my NP on Tuesday; blood work, rehab, and xray on Thursday; and another bronchoscopy on Friday to see if the dehiscence has improved.

That is all. Have a lovely day.

Wednesday, July 7, 2010


today is exactly one month from the transplant. it is also exactly one year from when everything went downhill, and i got hospitalized and started the final listing process.

[i suppose i am supposed to be reflective. or something. but i'm not. probably because i am still in the middle of it all, so i have very little energy to start looking back at this point. i'm not in hindsight 20/20 territory yet. so we'll leave that for another day in the (hopefully not-too-distant) future.]

to celebrate i refrained from any physical contact with any medical personnel and maintained a strict 1 mile dmz between myself and the hospital. though i did have to field about half a dozen medical-related phone calls. which was a little excessive.

but i did get some good news. the biopsy results from my bronch last week came back and there is NO rejection. which is a welcome relief, considering treating the rejection is counter intuitive to treating the dehiscence in the left anastomosis. also, my tac level has finally settled into the proper range, so i won't have to adjust the drug levels.

nice to get some good news after the past week.

tomorrow, it's back to rehab.

Tuesday, July 6, 2010

discharge (again) and weekly medical update (again)

yesterday was a pretty good day, considering i was stuck in a hospital room. AC (not the city) came to visit, so dad got most of the day off (minus chauffeuring) and i spent the better part of the day entertained and distracted by AC (once again, not the city). she brought a mancala board, which i will now force all visitors to play with me. so click the link and read up, because you don't want to embarrass yourself.

today, however, was mostly antigood. i spent most of it sitting in my hospital room just waiting for the folks at the hospital to get their act together and get everything ready for discharge. by 10am, they had made the decision to discharge me, but i didn't actually leave the hospital until after 6pm. so it was kind of a long and frustrating day of very little progress.

which is kind of how the entire last week has been. instead of feeling a little better every day, i have stalled out and really don't feel any better than i did a week ago, and the test numbers and images confirm it. in the past week i've had about 6 chest xrays, a chest ct, and a bronchoscopy with a biopsy. the results of the biopsy still have not come back (the point of the biopsy is to see if there is any rejection, btw), but from all the rest they have determined:
1. the suture rupture in the left anastomosis is a major issue. with only the one bronch, we cannot tell if it has started to heal, so there will be another bronch likely in the next week. if things do not improve, they may have to insert a stent to promote some scar tissue. in the meantime, the prednisone has been lowered (which is good for the blood sugars, but bad for possible rejection) in order to help the healing process;
2. there is definitely pseudomonas present. can't tell for sure if it is new and active or an old colonization, so we are pumping me full of iv antibiotics (which i was sort of hoping to be rid of after transplant) and some nebulized antibiotics (another thing i was hoping id never see again: nebulizers);
3. the pneumothorax has not gotten worse, but it has not improved. if it gets any larger or starts to leak into other parts of the lung, they may have to put a chest tube in (another thing i thought i was rid of) to drain the pleural fluid.

in the meantime, i am home at least, on iv antibiotics and nebulizers and some extra oral meds for at least the next two weeks.

dr h summarized the situation as: a "significant step back/bump in the road", but one he expects me to fully recover from and move on from.

so that is that. i am mostly worn out, though i think it's more psychological than physical.

Monday, July 5, 2010

Yesterday was long and boring. The morning brought unnecessary alarm
bells and the afternoon brought hours of playing rummy 500 with mom.

In the morning one of the residents informed me that there was fluid
in my lungs, filling the pneumothorax, and that my hemoglobin was
getting dangerously low. Turns out the hemoglobin was probably a lab
error (reran the test and number was ok) and after hours of fretting,
the attending informed me that fluid filling the pneumo was perfectly
normal, and everything was going as expected. The pneumo hadn't gotten
bigger so there was nothing to worry about.

Then, hours of the ongoing card game with mom. I forget who's winning.

I slept through the fireworks, sort of. Mom, dad, and Aunt E watched
them from the hallway with a bunch of other patients.

That's it. Usual blood work and chest xray planned today.

Sent from my iPhone

Saturday, July 3, 2010

Male nurse day

Today was male nurse day in Founders 1476. I actually like having the
occassional male nurse: it's a nice change of pace. This guy was like
a toned down version of the case-of-the-Mondays waiter in Office
Space. Actually I kinda like the guy, but he said "these guys" way to
much. As in, You gotta take these guys first, referring to some pills.
And, I gotta hook this guy up, referring to an IV antibiotic. As I was
wheeled away for my kafkaesque trip to radiology for a chest xray he
actually said, I'll catch you on the flippy. No joke.

But he was a solid nurse. The newly annointed residents are another
story. I have them to thank for being underdosed on pain meds all
afternoon. Not that I'm in unendurable pain, but I could stand to be
in a bit less. Coaxing from me and badgering from the Dad eventually
got it resolved, but I'm not sure how many days of this I can tolerate.

Chest xray supposedly (read by first year resident) showed improvement
and, as the Dad continues to remind me, the fatigue issue seems
resolved, so I guess things are headed in the right direction.
Prednisone has been reduced to help fight infection, but the tac level
is still hard to pin down.

All my meds make me so shaky it's hard to type on the ol iPhone, so
until tomorrow.

Sent from my iPhone

Friday, July 2, 2010

From Founders 1476

Oh how short the glory lasts.

It's 3 days since my recovery was deemed "all star". Well, that didn't
last long.

Today (after a great dinner Thursday night with S) I woke up feeling
pretty crappy: tired, weight lost, headache, wheezing, tight chest,
shaky. My bronchoscopy was sheduled for noon, so I figured I'd just
report the symptoms when I saw Dr H for the bronch. Some of it, no
doubt, could be attributed to fasting for the bronch.

Well the bronch didn't exactly go swimmingly. Much of it was clear,
but Dr H found a medial partial dehisence (a small pit without a true
hole and partial suture breakdown) in the left anastomosis. (you're
gonna have to look those up yourself. No links today.) Also confirmed
the pneumonia that came up on the CT scan. So I spent most of today
waiting in the outpatient bronch lab to be transferred to inpatient.
I'm here in my hospital room now, fresh from a convo with my three-
weeks-experience resident (oh the joys of the hospital in July)
waiting for a tray of cold hospital food.

The plan is to pump me full of some iv antibiotics and an profilactic
antifungal and hopefully send me home Tuesday.

We shall see.

Sent from my iPhone