back on dialysis again

transplant1982

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« on: January 16, 2007, 04:15:06 PM »

"never say never"...i can't remember what movie that line is from but it fits my situation. i swore i was never going to go on hemo again no matter what happened and now here i am with a temporary subclavial catheter and back to the grind, but i have to admit i'm amazed at how things have changed in the past 25 years

i was diagnosed with kidney disease in 1973 at age 18 .kidneys were too shriveled up to biopsy so never figured how it happened..no family history etc

had a pre-emptive live related transplant in june of 1978, but my white count went very low. today they would just give you shots of neulasta. but it didn't exist back then so the only way to deal with it was to stop all immunosupression drugs until white count went back up. unfortunately that triggered a major rejection of the kidney and the transplant was lost after only 1 month

started hemo in november of 1978. the best way to describe dialysis back then was "i existed". first of all everyone back then started at 6 hour runs, and gradually whittled down to 4 hours . they used an acetate bath (today it's sodium bicarb). usually within 1 hour after starting and anywhere from 8-12 hours after i got off i was vomiting. they did CAT scans prior to and after dialysis and said i was having cerebral edema and papiledema from the treatments. the other major difference back then was no epo/procrit you got blood transfusions. since they didn't like to give you too many of those i wouldn't get typed and crossed until my hemoglobin hit 7 (crit of about 21) i ended up getting 2 units of packed red cells every 5-6 weeks. the upshot of that was of course it made it more difficult to match me for a transplant and i also contracted hep c (i'm actually very lucky i didn't get aids))

forget about cell phones, they didn't even have beepers back then when you were on the list. if you weren't home and they called with a kidney...out of luck..unless it was a perfect match. i went away with my landlord and her husband to their cottage in april 1982. we usually came back sunday night around 5pm, for some reason we came back at 1 pm that day and my phone was literally ringing as i walked in my apartment. it was a kidney, it was a perfect match kidney and they had been calling for 5 hours to try and get me. needless to say i said i'd get there as soon as possible. when they said my white count was low and they needed to take out my spleen if i wanted the kidney i told them to take out anything they wanted just get me off hemo. the kidney was from an unidentified accident victim so i named it "generic".

generic had his ups and downs (parathyroid surgery, cancer, shingles) but lasted for 24 years until this past summer. i told the doctor don't even mention the word hemo to me because there's no way i'm ever going back on it. had peritoneal catheter put in july and started CAPD in august. i wanted peritoneal to work so badly. i thought -i could do it at home, no needles, easier to travel and less diet restrictions.

the reality was that for me peritoneal was not a good fit right from the first day. i had trouble breathing when i had any extra fluid on at all and i had this incredible back pain from the pressure of the fluid. absolutely no apopetite at all (hard to want to eat with the pressure of the fluid) the exchanges of 4 times a day got really old really fast..it seems some days that's all i did was change the blasted fluid. i had abdominal cramping when i finished draining and for the first few minutes of refill. the biggest problem with peritoneal was it raised my triglyceride levels to over 700 which triggered 2 attacks of pancreatitis since the end of november. i probably would have tried to stick it out but i just never felt good and when i went to my monthly appointment a week ago monday they said my clearances were not good, i wasn't getting enough dialysis and my choice was either to add another exchange with a cycler at night (in addition to the 4 changes a day) or try hemo.

we decided on a 2 week trial of hemo with a subclavian catheter because my fistula had clotted off in 1983. i started last thursday quite apprehensive. and was amazed that when i got off i hadn't gotten sick once, hadn't crashed, had no horrible headache, hadn't cramped....they weren't lying.....hemo has definitely changed. of course i'd rather have a transplant and not have to deal with dialysis at all, but compared to what i went through 25 years ago on hemo this time around i think i'll be able to do more than just "exist" and as the wait in new york is 6-7 years for a kidney and i just went on the list in august i have a quite a lot of "existing" to do before i get the magic phone call.


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