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I Hate Dialysis Message Board
Dialysis Discussion
Dialysis: Transplant Discussion
donor question
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Topic: donor question (Read 2033 times)
bleija
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donor question
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on:
December 24, 2011, 03:58:52 PM »
My brother has offered to donate a kidney to me. i was working with the transplant center in orlando, and they told me that he was not eligable because of his asthma. However, when I started the work-up at Shands, the transplant surgeon told me that his asthma did not matter he could donate. His blood type is O neg, and I'm O pos. He is 11 months older than me. My nurse acts as if hes a perfect match. I do not want to get my hopes up, but I am curious though, what chances do I have. I know with siblings its 25% possibility of being a 6 of 6 match, but I also know that it doesnt have to be all 6. I just want to know what kind of chances do I have. I am done with all the testing for transplant, they just want me to have 3000 in an account set aside, so they know that i will be able to cover the drugs the first year. That is the only thing holding me back. I have done tons of fundraising, and have accumulated 1162 of that 3000. My husband took out a flexible spending account for 1000. so i only need another 838 before they will start any kind of work up for him. I am 21 and I do not have any other health issues other than the kidney failure, so they say Im the perfect candidate. i would prefer a living donor and to be able to schedule the surgery and everything on my terms, and the neph and nurse act liek it could be this summer, but i dnt want to get my hopes up...
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Chris
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Re: donor question
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Reply #1 on:
December 24, 2011, 04:27:16 PM »
1. Save more than $3000 for meds a year, it will be more than that. Most of that can be used in 1 month depending on dosage, other drugs prescribed, or over the counter meds.
2. From what I have read through the last 4 or 5 years here, it is possible to have a transplant by summer. Most recently KarenWA story comes to mind with her living donor.
Just try to be balanced with optimism and cautiousness to not worry as much if something arises and plans need to be rescheduled. Just tr to stay in the loop of things with the transplant clinic.
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Diabetes - age 7
Neuropathy in legs age 10
Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
-glaucoma and surgery for that
-cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
- vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection
Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000
Kidney and Pancreas Transplant - December 3, 2000
Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures - Priceless
No two day's are the same, are they?
KarenInWA
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Re: donor question
«
Reply #2 on:
December 24, 2011, 11:07:37 PM »
My donor, Lynn, contacted me back in May about wanting to donate her kidney to me. She went through all the testing, which was finally complete in the 2nd half of October (that was the transplant clinic's fault, they fell through on heart stress test for her). We then scheduled our surgery to be ASAP, which ended up being Nov 23rd. We wanted the 16th, but that was already taken. I am now 1 month post-op and doing great!
As for the meds, Medicare should help pay for your anti-rejection meds. Are you on Medicare? Do you or your husband have prescription coverage? My co-pays range from $4 to $65, and that $65 isn't even for an anti-rejection med, it's for clotrimazole! (to help prevent thrush). The good news is, a lot of these drugs you're only on for 3 to 6 months. Valcyte, which is horribly expensive, is one of them. That's an anti-viral med. Clotrimazole I believe I'm on for only 6 months, I need to clarify that at my next clinic visit. Other meds I am on are ranitidine (for heartburn) which is cheap, generic Bactrim (also cheap), prednisone (anti-rejection, and insanely cheap), a pre-natal vitamin (Rx, not OTC), and 81mg of aspirin (OTC, and cheap if you buy generic). I am not currently on Tums or calcitriol. I was, but my #'s for those are high, so they took me off of them. I am also off any BP meds. I understand that none of this is permanent, it all depends on my labs, and BP readings. But, I am okay with that, because I already have these meds in my possession, should I need to use them again.
I am also very lucky because I have a good union job with excellent benefits. I use Medicare as secondary. My co-pays are manageable. My current union contract lasts until 2013, so things may change after that. I will cross that bridge when I get there.
KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011 - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
kellyt
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Re: donor question
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Reply #3 on:
December 25, 2011, 01:00:12 AM »
It's very possible that asthma could be a problem at one clinic/hospital and not another. I found they have different levels of standards. The clinic/hospital I went through was very strict. I had both my brothers test for me and although they were both a match, neither was a 6/6. They were both 3/3/, however, my oldest brother's test came back stating some antigens were "missing", so it's possible he was more than a 3/3. My husband was a 4/6. All three of them were decllined for one reason or another. My sis-in-law, who actually donated to me, was a 3/3. I'm just over 3 years post transplant.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!
bleija
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Re: donor question
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Reply #4 on:
December 25, 2011, 08:14:05 AM »
thats some awesome insight. As of right now, I only have Medicare. I had insurance through my job, but there was 3 months where i was on probation<1st 90 days> after my 18th birthday when i had no insurance. I had Medicaid growing up. So the compny's insurance decided that i became sick in that 3 month span, and called it preexisting and refused to cover anything that had to do with it, so i dropped them. Did not see any reason to pay for something that was doing absolutely nothing for me.
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