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Author Topic: Mourning the Loss of Your Kidney Recipient  (Read 3977 times)

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Offline Monica__

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Mourning the Loss of Your Kidney Recipient
« on: September 13, 2020, 06:48:02 PM »
Hi all,

I donated my kidney to a very good friend of mine in 2009. At the time, i was 23 and she was 26. She had Lupus Nephiritis and I had seen her endure several hospital stays because of her disease for several years before the donation.

Her body had been starting to reject the kidney in 2013 because she accidentally got pregnant. Not only did she lose her baby then but her immune system shifted and rejection started earlier than anticipated. She and I hadn't stayed well in touch after that as I felt a little disappointed that she wasn't more careful about her health. She unexpectedly died earlier this year in April at the age of 37. she wasn't already admitted to the hospital for anything-- she was at home with her husband and all of sudden couldn't breathe and passed away in the ambulance.

I'm still struggling with this loss. Most people that I've talked to about kidney donation typically donates to an older family member, say a parent, or someone else who is perhaps 50+ years old. But has anyone else here donated to a friend, who was young, and who died young? 

And just wondering if anyone else has any insight into working through this mourning process. It's been 5 months now, but it still weighs heavily on me. I suppose I'm just looking for others who had a similar experience just to not feel so alone with all of it.

Offline Fr Pat

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Re: Mourning the Loss of Your Kidney Recipient
« Reply #1 on: September 14, 2020, 02:13:40 AM »
     I myself did not have such an experience, but it must be very difficult. And people who have not "been there" will find it hard to understand your feelings. In the card racks in the stores you cannot a find a card for "sympathy for the loss of your organ transplant recipient". It is a very new thing in all of human history. You might perhaps want to post this also at the FaceBook page of Living Donors on Line, and also the page of "Living Kidney Donors Support Group". Many more donors post there rather than here these days, and you are more likely there to hear from other donors who have suffered the loss of their recipients.

Offline PastorJeff

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Re: Mourning the Loss of Your Kidney Recipient
« Reply #2 on: October 04, 2020, 07:46:28 AM »
Monica, I just saw this. I too suffered the loss of my recipient last year.  He died after an excruciating progress of cancer.  Even though he was a stranger at one time, he became a very good friend and brother in Christ.  I became familiar with his family.  I can identify with some of your feelings.  It's hard to always know where they are coming from.  I certainly mourned for a man taken from his family and the loss they felt.  But when I visited just before his death I saw people who lived with hope in the midst of cancer's ugliness.  I suppose I also mourned for my donation which is kind of a selfish thing on my part.  i trust this will subside for you in time, but at least for me you never quite get over it all. And maybe that's a good thing.  I think the hurts in our lives help us to be more compassionate towards those who suffer.  At least that how it should be. 

Offline tjhurley

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Re: Mourning the Loss of Your Kidney Recipient
« Reply #3 on: October 12, 2020, 09:01:46 PM »
Hi Monica,

My recipient (my son)  is much younger than me and was diagnosed with colorectal cancer this year.

The feelings are really confusing for all of us as my son fully believes the immunosuppressives played a role in his getting cancer.  My donation also occurred in 2009.

The kidney has performed really well for him, so there is that. Take care

Offline Fr Pat

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Re: Mourning the Loss of Your Kidney Recipient
« Reply #4 on: October 13, 2020, 03:28:59 AM »
That's very hard for you all. The ant-rejection drugs do increase the risk of cancers. The drugs trick the body into not rejecting the "foreign" kidney, but that also makes it harder for the body to identify and attack infections and cancer cells.

Offline tjhurley

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Re: Mourning the Loss of Your Kidney Recipient
« Reply #5 on: October 14, 2020, 09:39:24 PM »
Yes, thanks, we are just trying to deal with it the best we can.

Offline PastorJeff

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Re: Mourning the Loss of Your Kidney Recipient
« Reply #6 on: January 26, 2021, 07:24:34 AM »
Please let us know how your son is doing. 

Offline tjhurley

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Re: Mourning the Loss of Your Kidney Recipient
« Reply #7 on: March 15, 2021, 12:34:38 PM »
Hi Fr Pat and Pastor Jeff,

My son wanted oncologists that would work closely with his nephrologist. The first colorectal doctor and surgeon who discovered his cancer after an emergency room visit were pretty nonchalant in regards to his transplant concerns.   We got some great recommendations from his original transplant center. The oncology team chosen included his nephrologist in every decision and update.  As you all know, the transplanted kidneys are placed quite low in the abdomen. They recommended he have proton radiation on his tumor in order to protect the graft from radiation.  Proton radiation is quite a bit more "pinpoint" than typical radiation. He was fortunate and the tumor shrunk enough for him to have a robotic assisted LAR surgery.  After he recovered from the surgery he did 12 rounds of chemo. His scans are clear now and we can hope it stays that way on future scans.  Sadly, the prognosis for kidney transplant patients with rectal cancer isn't as wonderful as you could hope, the research is a bit a of a dark read. I can see why they refer to cancer with words like "warriors, fighters, battle" its a long hard war with an enemy that may return.

We should all push our younger family members with transplants to have colonscopies long before they reach 50. No one expects younger people to have colorectal cancer and the early symptoms were ignored when he reported them to his primary physician.  His symptoms, first reported 3 years post transplant were diagnosed as hemorrhoids. 11 years post transplant his cancer was discovered at stage 3C. Some of you may remember that we have two sons with transplants, our older son did have a colonoscopy after his brother's cancer was discovered. All was well with him. Anecdotally speaking, as we all know the level of immunosuppressives needed on a daily basis can vary widely from person to person. The son who developed cancer requires much higher doses than his brother to maintain the proper levels in his bloodstream.

Thanks for asking PastorJeff, it means a lot.

Offline sherri

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Re: Mourning the Loss of Your Kidney Recipient
« Reply #8 on: March 18, 2021, 09:31:44 PM »
Hello TJ,

so sorry to hear about the cancer diagnosis for your son. I donated a kidney to my brother in 2007, changed careers and became a registered nurse in 2013. I work as a research nurse coordinator in Blood and Marrow Transplant patients (leukemia, lymphoma, myeloma patients).  Sometimes clinical trials are a good option for particular diagnoses but not every patient is eligible. But new medications and treatments are constantly being developed. Sounds like you have found a team who is willing to work with both the oncology and nephrology aspects. Wishing you and your family the strength to meet each new challenge with faith, hope and grace.

Will keep you in my thoughts and prayers.

Sherri
Sherri
Living Kidney Donor 11/12/07

Offline tjhurley

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Re: Mourning the Loss of Your Kidney Recipient
« Reply #9 on: April 04, 2021, 06:53:48 PM »
Thanks so much for the kind thoughts Sherri, I remember your donation was between my husband’s donation to our older son and my donation to our younger son.

We have been lucky that things have gone well and both kidneys continue to work well for both of our sons.   Living donation is a wonderful gift.  Best to you!

Offline PastorJeff

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Re: Mourning the Loss of Your Kidney Recipient
« Reply #10 on: April 05, 2021, 08:04:05 AM »
I haven't commented lately but haven't gone off the grid.  Just watching for recent developments- and praying.  Living donation is a wonderful thing that blesses the recipient but also surprisingly the donor. 

Offline tjhurley

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Re: Mourning the Loss of Your Kidney Recipient
« Reply #11 on: August 18, 2021, 04:01:54 PM »
What have we learned so far? This medical summary statement says it best.
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The poor survival outcomes in these patients is a cause for great concern since they are getting a transplant as curative-intent and then to be dying from a secondary cancer, which can be potentially prevented or screened for is worrisome.
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One of the problems is that preventative screening for colorectal cancer usually doesn't happen until age 50. Even in the non-transplant younger population, by the time colorectal cancer is discovered it is usually in later stages.

In most medical studies, the history of kidney transplant patients whose colorectal cancer is discovered later stage is 0% survival at the 5 year mark.  Stranger yet, the younger the patient, the harsher the survival rates.

Despite 12 rounds of chemo last year, his cancer has spread which moves it to stage 4.

 

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