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Skye
Member
Username: Skye4296

Post Number: 1
Registered: 04-2014
Posted on Wednesday, April 30, 2014 - 01:54 am:   Edit Post Delete Post Print Post

Bit of a veteran (14yr k/p transplant) and have had to miss my medications several times - the longest was 3 days worth. I've asked my doctor to tell me what the percentage match was between myself and my donor but he just dodges answering me "oh goodness that's buried in the records somewhere" etc. While I was on dialysis, several patients had said they only missed one dose and they lost the transplant.
Does this mean I'm probably a close match? Is there a data base that I can access to find out how close a match my donor (cadaver) and I were?}
bill s
Member
Username: Bill_s

Post Number: 158
Registered: 08-2011
Posted on Sunday, May 04, 2014 - 03:54 pm:   Edit Post Delete Post Print Post

This is an exciting question. If you think about it, they would definitely have told you if you were an exact match - thus, you are not. Exact matches are moved up the transplant list. No matter how close you were after that still meant you had to take the immunosuppressants as directed. Our bodies continue to support the new kidneys by feeding them, protecting them from various diseases, etc., and thus the kidneys, or parts of them, become parts of our bodies although I have no idea of the interaction of our two DNAs. Some TX Centers now eliminate prednisone early in the transplant process. So, you could be one of those lucky persons who could stop taking your meds - but, are you willing to risk it? Also, in joining this site, I notice that people who have adhered to their immunosuppressive regime have lost their kidneys after many years. This is probably some function of why they lost their birth kidneys in the first place. My loss is related to my DNA as all 3 of my boys have the initial stages of kidney disease. When I asked my docs how long it will last, they say be happy, you're doing well.
Good luck!
Rita
Forum Leader
Username: Rita

Post Number: 949
Registered: 06-2003
Posted on Sunday, May 04, 2014 - 09:46 pm:   Edit Post Delete Post Print Post

Hi Skye, I am veteran like, I am a bit ocd about my meds. Take them at the same time and never missed a day. Although it was many years ago I do recall dialysis and if I have any control over I dont want to be back there, hence I take my meds. I was told when I got the kidney that people get kind of relaxed about taking meds after having a kidney and feeling normal... they said this was the number one reason for lost of transplanted kidney. I know I was not 100% match, but I do know that not taking meds will increase my chances of loosing the kidney. I think even being 100% match you can still reject and because it is not your natural kidney. Please dont be one of those people that the doctors told me about when I first got my kidney.
Rita
Kidney Transplant 9/95
New York Hospital, NY
Dr. Wang

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Lessons of Hope, Love and Kindness blog
Sara
Member
Username: Tropezando

Post Number: 1
Registered: 05-2014
Posted on Wednesday, May 07, 2014 - 05:16 am:   Edit Post Delete Post Print Post

I'm not a vet (transplant was Jan 13 2014), but my dad has has his kidney transplant since 2003. He received it from my brother, his son, so it was a great match. The doctors called it a "super kidney" and my dad's labs rival those of a person with two very healthy kidneys.

Unfortunately, he was never great an taking his medicine at consistent times, and he would occasionally forget doses, but never had any symptoms from it. However, when I went in for my transplant earlier this year, the change in routine confused him and he missed several doses -- usually one a day, or would forget to take his medicine until hours later. He had his annual evaluation shortly after I arrived home and was told there was rejection, which we never would have found out if not for a routine biopsy being done. His lab levels were all great, no indication of anything amiss, but biopsies don't lie. Even my brother's "super kidney" can only take so much neglect. He's doing well now, had some intense prednisone infusions, upped his prograf and took bactrim for a bit. He's lucky. Some people aren't as lucky.

I wouldn't think one missed dose would be the end of the world... but it isn't really a risk worth taking.
Hostess Risé
Board Administrator
Username: Rise

Post Number: 18048
Registered: 05-2003


Posted on Wednesday, May 07, 2014 - 10:02 am:   Edit Post Delete Post Print Post

Thank you Sara for sharing your story and for reminding us to be compliant. So important! I am glad to hear he is doing well.
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CF- dx at 2yrs. 2nd double lung tx-05 JMH
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Gene
Member
Username: Gene2x

Post Number: 57
Registered: 11-2011
Posted on Tuesday, May 27, 2014 - 10:07 pm:   Edit Post Delete Post Print Post

Thought I'd throw in my two cents. I'm a 1/6 match with my live donor and almost 3 years out from my transplant. I'm on a steroid free regimen (Univ. of Pittsburgh Med. Center protocol). I try to make a point of taking my meds at the same time each day. But sometimes life gets in the way and I forget. I've set alarms on my cell phone for 9am, 4pm and 9pm. Usually the 9am meds are the casualty when I leave the house before it's time to take them and I forget to take them with me. To solve that problem I now carry a spare set of meds in the glove box of my car and two sets in the backpack I carry a lot of places. I've gone as long a 4 or 5 hours past 9am on a couple of occasions. When I do that I usually just take about half the dose of Prograf and Rapamune to tide me over until the night time meds. I don't feel that there's any point in stressing over a late or missed dose. Same with the 1/6 match. I do the best I can and it either works or it doesn't.

I have to believe that if someone lost a kidney after missing one dose that there was some other underlying problem that hadn't been diagnosed. The only time I've had a scare with my kidney was a bout with the BK virus. It started sometime around half way between my monthly blood work and got a head start because it took a couple weeks to catch it.

I can only hope that I can write a post 11 years from now and say I'm 14 years post transplant with the same kidney. Good luck.
Kidney Tx - Aug 4, 2011
VA Pittsburgh Health Care Center
Follow UPMC non-steroidal protocol
Live donor was my radio operator in Vietnam
1/6 match

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