I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Emerson Burick on July 18, 2010, 07:23:37 PM
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Hey, everyone. My name is Dan and I live in Boston. Occasional lurker, first-time poster. I don’t hate dialysis, but it sure is a pain in the ass.
Medullary Cystic Kidney Disease (MCKD) ran through my family tree like a squirrel on crack, but I’m the last. My grandfather died of it before dialysis was an option at age 42; my mom did CAPD and a transplant and died at age 59; my brother did CAPD, a transplant, and CAPD again before dying at age 42. I’m 43, which makes me the big brother now.
I was diagnosed with MCKD in 2000, lived the low-protein diet of the damned until my kidneys went rapidly downhill in 2004, and my wife and I did a kidney swap with another couple. I never even did dialysis. The new kidney defended itself for three years, and then humeral rejection did its damage. A session of Rituxan chemo seemed to slow the rejection for a year. A round of Velcade chemo held things in check for another year. And that was that.
I started CAPD in April. Aside from the usual bother that’s been well documented here, Heparin made half my hair fall out (“delayed transient alopecia”), which means that I have to shave all of my head every morning just so I can look like a tragically trendy middle-aged guy instead of a mutant werewolf boy. The latest indignity is that my catheter was linked inside me, so the cycler never worked properly. This week I had the old catheter removed and a new one installed on the other side. I’ve been promised that if I get one more stamp on my frequent surgery card I get a free drink and chips.
Despite the prodding of my nephrologist and transplant coordinator, I refuse to pester anyone for a new replacement part. Having blown through a perfectly good kidney in five and a half years, there’s no way that I would allow, let alone ask, any of my friends or family to donate for round two. (Talk about awkward if that doesn’t go well.) Nor, for that matter, will I place an ad on the most depressing website in all of creation, matchingdonors.com. As a result, I’m on the list, and waiting for someone’s YouTube stunt to go awry.
In the meanwhile, I work at a university. Between exchanges I play a mediocre game of squash.
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Hey! Well Met and :welcomesign; Dan!
I’ve been promised that if I get one more stamp on my frequent surgery card I get a free drink and chips
Had a chuckle at this idea. My husband Gregory is the renal person in our household, he also talks about his frequent surgery card. But instead of a free meal, he reckons it will get him a free surgery soon, he's been trying to decide what to get done. He reckons maybe hair plugs, but I berate him for that idea. I like him gloriously bald. He did exactly what you did, shaved the lot off, and lets it waver in length between a number 1 and a number 2. He calls it his Ed Harris from the Rock haircut.
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It's good to have you join our community!
:beer1;
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Hiya, Dan!
I enjoyed reading your intro - well-written and gave me a laugh. Not to sound too competitive, but I lost all of my hair in March when I had my second transplant, and even 4 months later I probably have only a centimeter grown back, and an alarmingly large portion of it is grey. Though I can appreciate a totally bald man, it is a rare female that pulls this look off, and I was not one of those elite few.
:welcomesign; to IHD! I look forward to getting to know you better.
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yeah, I was thinking that too. Females don't normally rock the bald look.
My hair started coming out in clumps just after I started HD, and we figured it was from the heparin and anesthetics from the amount of surgeries I'd had at the time. I had some pretty nasty looking bald spots for a while, and my hair is still really thin, when it used to be so thick, I was breaking hair clips. I'm hoping that now that everything is regulated, it'll start thickening up again
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Great intro and :welcomesign; to IHD!!!!
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Welcome to our community, Dan! That was a great IHD intro - the kind that Epoman would have loved. Delurkers are great people - you don't have to convince them that IHD is the best place for information and support. All I have to let you know is that you are now a part of the IHD family :grouphug; - a wonderful group of sharing and caring people. So just keep reading and above all, keep posting. I definitely want to hear more from you. I know nothing of PD since HD is the only type offered here (British Virgin Islands)
Bajanne, Moderator
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:welcomesign; I liked the humour in your intro and look forward to reading more of your posts.
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Welcome to the group, Dan. If your dialysis is a pain in the ass, I think they put the catheter in the wrong place! Just had to say that. Are you a part time writer, cuz your post was one of the most interesting (not to mention articulate) I've read on this site. Please, please, please, come back and post often. I'm looking forward to more of your posts. BTW, who is Emerson Burick?
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Hi Dan and :welcomesign; ... loved your introductory post ...
;D
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:welcomesign; Dan We live about 60 miles west of you in Gardner (G Vegas as it's known). Hope you post as your post are very fun to read.
fixed icon error, epofriend moderator
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Hey! Well Met and :welcomesign; Dan!
I’ve been promised that if I get one more stamp on my frequent surgery card I get a free drink and chips
Had a chuckle at this idea. My husband Gregory is the renal person in our household, he also talks about his frequent surgery card. But instead of a free meal, he reckons it will get him a free surgery soon, he's been trying to decide what to get done. He reckons maybe hair plugs, but I berate him for that idea. I like him gloriously bald. He did exactly what you did, shaved the lot off, and lets it waver in length between a number 1 and a number 2. He calls it his Ed Harris from the Rock haircut.
Thank you for making the first introduction. I had read your introductory post and was interested by your research proposal. Do you have a reference chapter set up yet? I'd be curious to see it. (I'm a recovering academic.)
Anyhow, I've always hated my hair, so it gives me a certain grim satisfaction to lay waste to what's left of the miserable crop. I just wish it weren’t yet another dialysis thing sucking up my time. It's like being given a crap hobby that you don't like, but everyone keep buying you accessories for it. Unfortunately, between my dark hair and my pasty white scalp, the polka dot fallout pattern looks awful, perhaps the result of some sort of nasty parasite one might acquire from finger-painting with raw sewage. Not nearly as sexy as the image of Ed Harris in The Rock.
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It's good to have you join our community!
:beer1;
Thank you; it's grand to be here. That's a very impressive robot in your avatar picture.
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Hiya, Dan!
I enjoyed reading your intro - well-written and gave me a laugh. Not to sound too competitive, but I lost all of my hair in March when I had my second transplant, and even 4 months later I probably have only a centimeter grown back, and an alarmingly large portion of it is grey. Though I can appreciate a totally bald man, it is a rare female that pulls this look off, and I was not one of those elite few.
:welcomesign; to IHD! I look forward to getting to know you better.
Thanks for the kind words. If you want to be like that and get all competitive and stuff and about hair loss, mine fell out in two days, most of which was when I was attending a funeral for a work colleague. Imagine how I looked in my suit, being all somber and stuff, going down the reception line of mourning family, scrambling to come up with a nice anecdote to share with the widow and all the while, unbeknownst to me, I had thumbprint-sized polka dot chunks missing from my hair. I must have looked like an utter madman. And not one of my colleagues whispered a "Pssst. Dan--you're molting. What the hell?"
Months later it's still like that, growing perfectly except for half of my hair and half of my beard. I'd be happy to have a straightforward 1cm all over, regardless of grey racing stripes.
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yeah, I was thinking that too. Females don't normally rock the bald look.
My hair started coming out in clumps just after I started HD, and we figured it was from the heparin and anesthetics from the amount of surgeries I'd had at the time. I had some pretty nasty looking bald spots for a while, and my hair is still really thin, when it used to be so thick, I was breaking hair clips. I'm hoping that now that everything is regulated, it'll start thickening up again
Breaking hair clips sounds impressive. Could it rip phonebooks, too? Maybe when it starts thickening up it should start slow, like bench-pressing small appliances.
In the meanwhile, perhaps all of us could get together and act out Apple's 1984 commercial.
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Dan, you cracked me up! :rofl;
Good to laugh once in awhile at our situation. What else can we do! :waving;
Hope you stick around.
Rerun, Moderator :welcomesign;
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Great intro and :welcomesign; to IHD!!!!
Thank you. It's great to be in a place where you don't have to explain everything. ("Right, so my kidneys don't work, and--no, I can drink, you're thinking of the liver. Anyhow--no, I'm not gonna die next week, that's the liver. Would you just look this stuff up?")
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Welcome to our community, Dan! That was a great IHD intro - the kind that Epoman would have loved. Delurkers are great people - you don't have to convince them that IHD is the best place for information and support. All I have to let you know is that you are now a part of the IHD family :grouphug; - a wonderful group of sharing and caring people. So just keep reading and above all, keep posting. I definitely want to hear more from you. I know nothing of PD since HD is the only type offered here (British Virgin Islands)
Bajanne, Moderator
You know nothing about PD? Seriously? Okay, here’s some basics. “PD” is actually short for “Parisian Desserts.” That’s right, those bags are filled with tasty French goodness. I started with the lightest, 1.5%, which turned out to be soufflé. But the nurses quickly moved me over to 2.5%, crème brûlée. At first I thought it sounded great too, but it’s tough to go through 10 liters of the stuff a day. It’s gotten to the point that whenever I snap that caramelized sugar seal on the next bag I’m ready to hurl. They seem to be working pretty well at keeping my ankles from looking like Louis Armstrong’s cheeks, though, so I haven’t had to try the stronger bags filled with crepes and Langues de Chat, respectively.
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:welcomesign; I liked the humour in your intro and look forward to reading more of your posts.
Thank you. I'd say something more humorous, but I've been blinded by all of the blinking, flashing animation options listed above this text field. I'm typing this with my elbows because the palms of my hands are pressed against my empty, dripping eye sockets.
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Welcome to the group, Dan. If your dialysis is a pain in the ass, I think they put the catheter in the wrong place! Just had to say that. Are you a part time writer, cuz your post was one of the most interesting (not to mention articulate) I've read on this site. Please, please, please, come back and post often. I'm looking forward to more of your posts. BTW, who is Emerson Burick?
The catheter does seem to be placed correctly. A great pity. Just think of all of the close-the-window, mask-on, wash hands, mask-off nonsense that could be avoided if things were merely shoved up one’s behind. Not so sure I would want to walk around with a 2.5 liter enema, but hey, it’s got to get better than hemodialysis, right?
Thank you for the partly-kind words (part-time?), but no. I don’t write much anymore. A long time ago I had some academic stuff published, but it would make you yawn so wide your jaw would unhinge like a snake.
Emerson Burick is a random username I selected from username-generator.com. When I was asked to supply a username here it seemed like too much work to actually invent one of the usual twee monikers like “DextroseDan” or “PrednisonePee.”
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Hi Dan and :welcomesign; ... loved your introductory post ...
;D
Thanks, shy one!
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:welcomesign; Dan We live about 60 miles west of you in Gardner (G Vegas as it's known). Hope you post as your post are very fun to read.
fixed icon error, epofriend moderator
People actually live west of I-95? I thought it was all cowboy hats, spurs, and "there be dragons" out that far. Wow. Well, thanks. Thank you very much.
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Dan, you cracked me up! :rofl;
Good to laugh once in awhile at our situation. What else can we do! :waving;
Hope you stick around.
Rerun, Moderator :welcomesign;
Thanks. I suppose we could laugh at ourselves, but wouldn't it be more satisfying to plot our revenge? So far my nephrologist has refused to remove my transplanted kidney just so I could have the pleasure of throwing it against the wall a few times, but I'll wear her down eventually. I'll be seeing her for a looooong time.
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Dan, you cracked me up! :rofl;
Good to laugh once in awhile at our situation. What else can we do! :waving;
Hope you stick around.
Rerun, Moderator :welcomesign;
Thanks. I suppose we could laugh at ourselves, but wouldn't it be more satisfying to plot our revenge? So far my nephrologist has refused to remove my transplanted kidney just so I could have the pleasure of throwing it against the wall a few times, but I'll wear her down eventually. I'll be seeing her for a looooong time.
Hmm.. I've never thought of throwing a transplanted kidney against the wall. I think I'd probably just throw it on the floor and stomp on it, yelling, "why didn't you work, dammit?"
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Hello and welcome (note no flashing or moving icons) trying to give your eye sockets a rest... You have given me a good giggle this morning. Good luck with everything and hope to see your post more often
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G'day, Dan, and :welcomesign;.
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If you want to be like that and get all competitive and stuff and about hair loss, mine fell out in two days, most of which was when I was attending a funeral for a work colleague. Imagine how I looked in my suit, being all somber and stuff, going down the reception line of mourning family, scrambling to come up with a nice anecdote to share with the widow and all the while, unbeknownst to me, I had thumbprint-sized polka dot chunks missing from my hair. I must have looked like an utter madman. And not one of my colleagues whispered a "Pssst. Dan--you're molting. What the hell?"
Months later it's still like that, growing perfectly except for half of my hair and half of my beard. I'd be happy to have a straightforward 1cm all over, regardless of grey racing stripes.
All right, you've won this particular battle, but stick around. I'm not done with you yet. (*sinister laugh*)
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I had read your introductory post and was interested by your research proposal. Do you have a reference chapter set up yet? I'd be curious to see it. (I'm a recovering academic.)
Hmm mm yeah there's an old literature review, but I'm reworking it. I have a huge collection of papers, and a big fat Endnote library, which I'm refining into a collection of "renal experience" literature (the experiences of people who receive renal medicine)... there's also a lot of other literature about general patient experience (not necessarily renal patients) and also lots of great stuff from internet ethnography or about discussion boards. So really I stand at the messy end of a recent literature explosion, and haven't incorporated the really useful stuff into summaries yet. But I have to this month, because I'm writing up something for a conference in September. So can I get back to you? I have been thinking about putting stuff (i.e. some kind of overview of the renal experience literature) into the "news / articles" section soon anyway... when i get something shipshape written... or (depending on how masochistic your curiosity is) I could send you an annotated bibliography :thumbup; :angel;