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November 15th, 2005
November 14th, 2005
October 22nd, 2005
01:35 am
hello world...
yes, it is I, Grover. or something.
posting LIVE from Geisinger at (owie) 28.8 kbps, thanks to the niceness of the ![[info]](http://l-stat.livejournal.com/img/userinfo.gif?v=92.2) jodawi, who found a free 2-week trial offer from Eskimo North...
at any rate...
thank-you SO much for your comments of support! J printed them out, as I believe he mentioned, and I read them...
thank-you to swhobbit and hopeforyou, who called my room earlier! (I suspect randimason for your card!
thanks to jodawi, hopeforyou, and randimason for updating my journal!
thanks SO MUCH to jodawi for standing vigil for hours every night, fetching things, and just catering to all of my little whims!
and... thanks to the deceased donor and his family, whose identities I do not (yet?) know... for makingall of this possible.
Dr. Potdar, the transplant surgeon, seems delighted with my progress and really did say I might be his best patient ever, though it's unclear whether he means from the standpoint of progress (where I am indeed kicking butt, more on that in a sec), or the fact that he seems to think I'm intelligent enough to make good, detailed progress reports over the coming months
as for the kicking butt part:
- last creatinine measured was 0.6, which is awesome.
- often, a new kidney needs some time to wake up" and quit saying "WTF?" before working properly. I was lucky... apparently my new one woke up before I did and I'm peeing like a racehorse.
- ditto for producing insulin right away. WOW... Dr. P says I have to have ice cream before leaving just on general priniciple.
- I got to have my hair washed yesterday and today! this might seem trivial, but it's a serious mental health issue for me. really!
- I had six cups of chicken broth Wednesday... clam chowder twice yesterday and twice today, with lots more chicken broth thrown in for good measure...
- allegedly within a year I should see an 80% reduction in peripheral neuropathy and "some" improvement in the GI stuff.
things I really did not want to know:
- what a Foley catheter is.
- just how sore one's throat gets from having tubes in it (the gut pain is nothing by comparison... really!)
- what having 25+ extra pounds of water attached to my body feels like. oh wait, already knew that one... mostly from the saline they've been giving me, plus the shock of the surgery...
- just how red urine can turn after you walk across the room with a Foley catheter (no pic, sorry)
- just what it feels like for one's GI system to restart after surgery (and better than it has for the past 12 years or so)
- no heavy lifting for AGES, possibly no cardio either. need to discuss more with transplant team.
- just how bad the Geisinger food service is (oh wait, I knew that already, too)
various folks wondered about the sorts of gifts they could send, I gather. the restrictions, it turns out, had more to do with me being in Cardiac Intensive Care than with the transplant -- flowers and stuffed animals are OK, or whatever. but "watever" could simply be your effusive well-wishes, already delivered.
much recovery remains... I have to stay in the area for about 6 months for frequent checkups, blood tests, etc... but after that, and even during, I have so much to do, to accomplish.
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October 16th, 2005
09:42 pm - will the next contestant please COME ON DOWN...
(as long as the organs are OK and the cross-match is negative...)
got the call a little before 6pm, just as jodawi and I were leaving to have dinner with my parents and grandfather.
I will know whether to go into Geisinger tomorrow morning... 7am-ish. not sure how long I have to get there in that case...
my brother who's in Georgia, in training for the Capitol Police, is going to see whether he can get permission to skip a few days of classes, and either fly or drive up (he's nuts, but look at who he has as a sister)
I am freaking out again. I hope this is the real thing, because I don't think I can deal with too many more of these calls (aargh)
the donor was a very healthy 21-year-old male who fell off a roof. very sad to hear -- so young -- but very nice that he chose (or his family did) to donate his organs.
hopeforyou, randimason, and/or jodawi will be notified when possible about any transplant-related news, and will post in this journal.
Current Mood: freaked
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September 2nd, 2005
11:58 pm - down periscope
as for the endoscopy, if you're wondering:
there was trouble getting the IV in but they eventually did, it was very routine, there is no ulcer, but there is quite a lot of reflux and consequent damage to my esophagus.
also, an obvious problem with emptying... my stomach still contained food though I'd been fasting for over 12 hours... but no bezoars (balls of rotting food).
unfortunately. did not see my GI doc, so no chance to ask about the Cisapride... I'll read a lot and make an informed decision over the weekend, then email the appropriate folks... thanks.
they prescribed presciption strength Prilosec because Protonix isn't covered, and $5/pill is too much for me to pay.
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September 1st, 2005
06:39 pm
dialysis today AND tomorrow (since Berwick only operates MWF, I missed Wednesday, had to go to Geisinger today, and will return to Berwick tomorrow) no barfing today, but there were other unpleasant GI facets of the experience.
endoscopy at 10:30am tomorrow. we're going to get to the, uh, bottom of this, dammit.
from an email I almost sent, just now: "... sorry I didn't reply sooner, but due to recent GI problems, I've been behind."
I crack me up. well ok, not really.
I can only feed my face until midnight, and then must fast until the endoscopy, so it's time to go eat some stuff.
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August 18th, 2005
12:21 pm - tthis was posted to a dialysis support mailing list I read
Not sure whether to be amused, horrified, happy, or what (this entry is crossposted to my personal journal)
NEW YORK (AP) -- Steven Cojocaru is looking for another kidney
transplant after the first donated kidney had to be removed due to
infection.
Cojocaru, a correspondent for syndicated TV shows "Entertainment
Tonight" and "The Insider," received a kidney from a friend in January.
That kidney was removed in June after it became infected with a virus
that can afflict transplant recipients and lead to eventual loss of the
organ.
The red carpet mainstay says the virus is now gone, leaving him in
proper shape for a new transplant. He is seeking the right donor match.
"Now I feel 100 percent," Cojocaru tells Us Weekly in an interview. "I'm
alive and kicking and concentrating on buying my fall wardrobe!"
The 40-something fashion commentator suffers from polycystic kidney
disease, a hereditary disorder that causes the growth of cysts on the
kidney.
After going though "drama detox," Cojocaru says he's now ready to return
to work. He plans to be back on the red carpet for the MTV Video Music
Awards in Miami on August 28.
Cojocaru says he's "determined" to get another kidney and is trying to
"help make donating kidneys the new, trendy, hot thing to do. Hotter
than buying a house in Malibu."
"Kidneys are the new black!" he joked.
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April 22nd, 2005
11:52 pm
I've been meaning to write a post here for a few weeks now, but it seemed like every time I almost got the chance to do so, real life interfered.
finally, here I am, and here's the post.
the catheter, etc.
roughly 2.5 weeks ago (April 4, I believe) I went in early in the morning to have a tunneled catheter put in. I'd been worried that sedation would not be available and that the local anesthetic wouldn't be sufficient to keep me from yelling my head off (which has happened before) but fortunately my fears were unfounded.
nobody told me to come in fasting, but fortunately I realized this was a good idea.
the doctor in charge of the procedure, Dr. Nadal (not sure of the spelling?), spoke with me before we began, answering my questions, checking out my fistula, and explaning that sometimes a catheter can cause a fistula to stop working -- I should be sure to keep exercising as much as possible in order to get my fistula working ASAP, so that the catheter could come OUT.
sounded good to me!
he also wanted to know if I had any other questions, and really seemed to want to take the time to answer them (I didn't have many -- a few minor ones I can't recall now). then he mentioned that he'd only use sedation (Versed) during the "uncomfortable" part of the procedure. sometimes I get uncomfortable when a lot of other people don't, so I was still a bit worried, and told him so.
so he responded by reassuring me that he would be paying attention and watching for any discomfort. indeed, when he began and I felt some uncomfortable sensations on my neck (just the needle for the local!) I told him I was feeling panicked; he responded by reassuring me briefly, then giving a play-by-play throughout the rest of the procedure in addition to Versed at the proper time. very perceptive of him to realize that getting more information would actually help in my case!
wow. like, bedside manner.
after the procedure I went over to the dialysis unit and we used the catheter for a 3-hour session, without incident. later my dad toko me home and I spent the rest of the day pretty normally, driving out to get groceries and spending some time online. (I only realized after going out that perhaps driving so soon after sedation wasn't the wisest thing to do -- but I felt really clearheaded, which makes me think that the dose of Versed must have been extremely light)
later that evening I looked down and realized that not only my dressing, but the entire right side of the front of my shirt was soaked with blood. after phoning the dialysis nurse on call and the ER, I went in to have them clean it up. getting a new dressing from the dispensary took a long tim, but that probably wasn't a bad thing, as it gave the wound extra time to clot before I began moving around much again.
I actually got back before my parents went to bed!
since then we've been using the catheter for dialysis -- at times it's itched a little (solution: Benadryl) and been inconvient from a personal hygiene standpioint (solution: Saran Wrap with Tegaderm to seal the edges, because there is no way in hell I'm not going to take showers).
we tried using my fistula again on 4/21, mostly with success although with a reduced flow. we'll leave the catheter in for a bit longer to make sure, removing it as soon as is wise (yay!)
food
I've been eating a LOT in the past few weeks, enough that I think I've gained a little weight (which is fine), and think I may even need to start thinking about a little portion control. I'm trying to indulge any cravings for potassium-rich foods since I know my ability to eat them may not last much longer.
for instance, pork chili, yum. not that I usually eat meat much, but I realized it sounded appetizing, and I do need to get down a pretty large amount of protein compared to what I'd prefer to be eating, so indulgence would be a positive thing right now.
dry weightt
we're tstill p[laying with this. we originally thought it was 55.0 kg with my clothing and boots, but upped the target to 56.0 because I was feeling dry after treatments... and may increase it a bit more officially.
the reason? probably a little genuine weight gain, but also the fact that I think fluid restriction is affecting the um, speed of my digestive system. yeah, yuckissimo.
on Tuesday it took 45 minutes, two cups of chicken broth, and one cup of water for me to be able to leave the dialysis unit wth a semi-safe blood pressure. not something I want to repeat.
so, on Thursday we aimed for 57.0 kg with 56.8 actually in mind, and I was 56.8 after treatment and in much less distress. perhaps we shouild continue thus.
paperwork
I'm getting pretty tired -- ironically in large part because of the paperwork. let's just say that things are very complicated wrt Medicare, disability, medical assistance, Geisinger, and all of the providers I saw in 2004. for starters.
perhaps I'll elaborate one of these days when I finally under stand it all. i.e. don't hold your breath.
writing here
most of you already know this, but I also keep a personal journal (sebab) on the livejournal site, one that has been in existence since 2000. I tend to be slightly less formal there, as well as updating that journal more frequently. sebab tends to write a lot less about dialysis and transplant-related things -- I've been thinkng of that journal as "me" and this one as the person going through all of the medical crap.
lately, though, I've been thinking that perhaps I should copy more of the content there to THIS journal; I haven't decided yet, and would find your thoughts on the subject interesting.
and speaking of "you", I've been getting a great deal of support lately; thank-you, it continues to mean a lot to me.
time to wind down and sleep; dialysis in the morning.
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March 31st, 2005
09:24 pm
remember my poor, bruised arm -- how the vein infiltrated near the end of dialysis?
the pain got worse, the fistula "blew". apparently the way I was screaming in pain was unprecedented from what my nurse has seen (I seem to be unusually responsive to pain, as has come up all too many times in the past year)
with Tylenol in me I can bear it, but it still hurts something awful. I think I'll be able to avoid dipping into my leftover prescription painkillers, but I was considering it for a while this afternoon.
guess who's getting a tunneled catheter for a while (maybe 6 weeks)? no details yet, but I am going to beg to be sedated for the procedure. after all, I had only a local when they put the central line in, and I ended up screaming. when they've put in PICC lines recently, using only a local, I ended up screaming.
I detect a pattern here... honestly I'm pretty worried about this.
right now I'm feeling pretty drained from doing lots of real life complicated stuff as well as from the morning's events. I'll finally catch up on email tomorrow if all goes well.
just so you know, I probably sound like my spirits are in the toilet, but it's more the exhaustion and pain talkung than anything else. another bag of ice and some sleep will probably improve the situation immensely.
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March 30th, 2005
02:39 am - first day
so, it wasn't a bad day overall. weird but not in the ways you might expect.
( incredibly long entry, packed with info... also posted to my personal journal )
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