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Offline Duke12

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Potential donor
« on: January 05, 2018, 12:14:17 AM »
My brother (the youngest of 7)  asked me and my 5 siblings if we could get tested to donate him a kidney. He has been on dialysis for 2.5 years with some complications due to his illness. I was the only one to go through the process, and was a match. Everything went well except my blood pressure was extremely high (167/110) the nephrologist stated he would deny me if my blood pressure remained elevated. He said I'm too young, but if I was 50 and up I would be a good candidate. He had me sit for 30 mins before he had the nurse recheck my B/P, and my numbers remained high ( 172/112)
So he advised me to keep a diary of my blood pressure for a week. I was approved after monitoring my B/P for 1 week. I still had high numbers so they had 2 specialists review my case. I had my physical with my primary doctor, my B/P was elevated at that time as well.. We discussed me being approved to donate a kidney. She advised me against the surgery due to my B/P and recommended medication at that time. She told me the risk and I may eventually need a kidney myself because of my age . I decided to ask questions from the Kidney Center. I was told that they had the same concerns so they postponed the surgery. I advised my brother of this and I was just beat down with cruel words from his wife and other members making me feel guilty about something that's out of my hands. "Remind you" I'm the only person out of 6 to even start the process.

Offline Fr Pat

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Re: Potential donor
« Reply #1 on: January 05, 2018, 06:36:17 AM »
That's rotten. They should THANK you for even getting tested.
     We kidney donors do have a tendency to develop high blood pressure in the years AFTER kidney donation, probably because the remaining kidney has to "hyper-filtrate" to take up the slack from the removed kidney. So it is VERY important that the potential donor's blood pressure is VERY good from the start. No sense donating a kidney and then needed to get one later.
     By the way, did the wife and the relatives who gave you a hard time get tested themselves? And have they all signed their drivers licenses to become after-death organ donors? If not, they have absolutely NO reason to be harsh to YOU. Be proud of yourself for having offered.
    You might like to post also at the FaceBook page of Living Donors on Line as well, as these days many more people check in there rather than here.
           be at peace,
                Fr. Pat (donor, '02)

Offline sherri

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Re: Potential donor
« Reply #2 on: January 05, 2018, 11:18:06 AM »
I am so sorry to hear of your brother's illness and his and his wife's reaction to your kindness. One of the many lessons I learned during the family donation process (and in particular with siblings) is the  raw emotional family baggage that is associated when it comes to transplant. Very often it is not about the kidney. We share (for good and bad) history with our siblings. So i am not sure if this was in character for these family members ,or if there are other issues going on and this is just a continuation of that. Even so, it was very unkind for your family to react that way. And I am glad that the physicians who are responsible to evaluate your health have recommended against donation. You are at increased risk should you lose one of your functioning kidneys. This is a wonderful opportunity for you to take control of your health and manage your blood pressure so you do not become a kidney patient. you can thank your brother  ::) (wink, wink)
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Had you been an unrelated donor (like Fr. Pat who was kind enough to respond so appropriately) you may have gotten accolades and thank yous just for stepping up to test. An unrelated donor, sometimes referred by the transplant team as altruistic donors, have a "choice" to step forward. For related donors, and siblings in particular, there is an underlying assumption (very often from the transplant team) that a kidney patient with a matched or compatible sibling has a willing and able donor - no questions asked. As a sibling donor, I felt a big obligation, duty, responsibility, guilt and also love to donate. But it was a hard decision. There certainly was a sense of entitlement. You know the joke, be kind to your siblings,  you may need them for spare parts!

Another lesson I learned during the process... when people become sick with a serious illness and often a chronic illness they become very inwardly focused. Maybe it is self preservation, fear, desperation and whole list of other emotions. They have a hard time focusing on the other. I know when my brother asked me for a kidney he said "my doctor told me I should ask my siblings to donate a kidney to me cause I am in kidney failure". No prep talk, no I know this is a very difficult decision and if you say no, I completely understand. No chance to volunteer but rather he just asked. on the contrary, he said if I didn't pan out, could my 18 and 19 year old daughters test. I was shocked. And I know his transplant surgeon probably did ask him, do you have any siblings and if so just tell them to come in and test. The surgery is minimally invasive, doesn't cost anything to the donor, they stay in the hospital for a day or two and go back to work two weeks later. people can live with one kidney, no big deal, its a "spare". (and this surgeon probably has two kidneys). So this is down played to the recipient so it is no wonder that your brother and his wife had this reaction. Maybe they heard that donation is no big deal, living donation is better than deceased so you "need" to have a living donor. There is hyper focus on getting a living donor and soon cause otherwise you go on dialysis. no excuse for poor behavior but I think I understand it better now.

As to what to do now, you can contact the social worker or living donor advocate and ask them to help you and explain the situation to your brother and his wife if you think that will help. you can give your permission for them to discuss your health evaluation with him and they should explain that it would be negligent and malpractice for them to take a kidney from a patient they feel may be at increased risk. The entire transplant programs all over the country would be at risk if centers were not responsible in their evaluations. They can also educate them on paired exchange so if your sister in law wants to test she can donate for your brother even if she is not compatible.

Sorry you are going through this. Glad you have uncovered a health issue that is treatable. focus on your future health. Wishing you a happy and healthy 2018.

Sherri
Sherri
Living Kidney Donor 11/12/07

Offline Apharris54

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Re: Potential donor
« Reply #3 on: March 27, 2018, 09:46:02 AM »
Good Morning,  I was a liver donor for my brother in 1999.  I remember the doctors telling me that if I changed my mind, they would tell everyone that I was not a perfect match.  Even, at the last minute, they asked again as they were wheeling me into surgery.  They volunteered to assume the responsibility so no one would blame me.  I think your doctor should have done the same thing. 

Offline elephant

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Re: Potential donor
« Reply #4 on: March 28, 2018, 09:19:28 AM »
Dear Apharris,

Sorry to hear you are suffering with this issue.  Please try to recognize your sister in law's anxiety as the source of her unfortunate behavior and try to forgive for the sake of your own emotional health.

The transplant team could have informed the donor that you were not an acceptable match without you needing to discuss your own health issues.  But that horse has left the barn...

My blood pressure was low normal prior to donation.  It did increase but not out of the "normal" range.  Although I was not "officially" overweight, I've  since dropped to a lower weight and my blood pressure reduced as well. 

You need to get to a good cardiologist now and get this situation under control.  Please pay attention to advice about diet and exercise as well as just taking medication.  A low sodium diet and plenty of exercise, plus maintaining a lower weight are great ideas whether they avoid medications or not. 

You can tell the family that you will be working on your own health and may reconsider testing in the future. 


 

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