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Offline ajdooley32

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New Here
« on: July 03, 2018, 07:46:29 PM »
Hey Everyone,

I have been seeing this forum come up for pretty much everything questioned I have googled throughout my donor process, I figured it was time to join. I just recently donated (I am only 5 days post surgery) and so far my progress is going quite well. I am up and walking around finally. as opposed to staggering from my bed to the couch, and then back to my bed at the end of the night. My pain is relatively controlled, not much pain unless I clench my abs or cough sneeze etc.

I donated to someone I knew. It was the older brother of one of my good friends. I hod known the family for years, though the brother hadn't lived at home for a while so he was more of an acquaintance. we are both the same age, I'm 27 and he's 28. our process has been 2.5 years in the making. His story is that of misfortune it seams more than anything else. He was diagnosed with Meningitis a few years back and began treatment for it. one day he just suddenly collapsed, they performed a spinal tap and found signs of the infection in his spinal fluid. the resulting medications and treatments left him with non-functioning kidneys. resulting in dialysis 3 times a week. It took a little over 2 years for him to get a clean bill of health from his team to get placed on the transplant list for our surgery to take place.

We went in on a Thursday morning. My surgery started at 7:30am. I was out of the OR and into a room by 12pm. My recipient didn't make it to a room until closer to 5, though we were all told that was because of no rooms available. (or his hadn't been cleaned yet) everything went great, I was discharged Friday afternoon, which looking back i should have stayed the extra day, the 2 hour car ride home left me pretty sore an almost unable to move due to stiffness and pain. though I am eating, bladder function is good, and i'm feeling better and better every day.

Unfortunately it doesn't look like the same can be said for the recipient. Immediately following the surgery both my doctor and the recipients doctor stopped by my room and commented on how strong and how good the kidney looked/was functioning in the recipient. he was outputting upwards of a liter of urine an hour, which we were told is a good sign that it starting working strong, and immediately.  Sunday morning the Dr's noticed that the recipients creatinine levels had gone up from 4.5 to 5.5 over night. I found out today, that on Sunday they also did a biopsy of the Kidney (sounds like they saw something they didn't like and had been watching it) they were supposed to get results today, and they might have, but I haven't heard yet and I am trying not to bother the family too much. In talking to the recipient earlier today it sounds like the Kidney is now essentially not functioning at all. It is still getting good blood flow, but its holding liquid and the creatinine levels keep rising (not sure how fast or where they are now)

I knew the risks going into the surgery, all the odds. I've done all kinds of Googling which does nothing other than take you to worst case scenarios. I just feel so..hurt? for him and his family. to go through everything he has. dialysis 3 times a week for 2 years. find out you are getting a kidney, get the surgery and go through the stresses all of that entails and all of it could be for naught.

I'm not sure what I intended to write or ask, I kind of just started typing. But does anyone have any experience either as the donor or the recipient in something like this? can the kidney come on strong, kind of quiet up for a few days and come back and function as is? is that not possible? 

Thanks for reading through my jumbled thought train. and I appreciate any stories anyone has to share. this really seems like a supportive community from the few threads I have read.

Offline Fr Pat

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Re: New Here
« Reply #1 on: July 04, 2018, 08:34:50 PM »
You might want to also post this at the FaceBook page of Living Donors on Line, as these days many more donors check in there rather than here. I donated to an unknown recipient, so don't have mush experience to share with you on this situation.
   best wishes,
    Fr. Pat

Offline elephant

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Re: New Here
« Reply #2 on: July 05, 2018, 08:09:43 AM »
Dear ajdooley,

First of all, you have done an amazing thing by donating.  I am glad to hear your recovery is going well.  I stayed 2 nights in the hospital after donation, and wished I had stayed one more too.  Get outside and start walking as much as you can, it is very helpful with recovery. 

I do so hope your recipients kidney function improves again.  I can completely understand your concerns at this point!  You gave so much of yourself, so are naturally highly invested in the outcome. 

When I donated I shared a room with a woman who had a transplant with delayed graft function.  She was getting various treatments (I recall  several long noisy ones in the middle of the night!) to try to help.  So delayed graft function does occur, and sometimes there is still a good outcome after weeks of continued dialysis. 

The biopsy would have been looking to see if the kidney was being rejected, which unfortunately could require removing it. 

Please let us know what you find out, and how you are handling your recovery. 

Love, elephant
« Last Edit: July 05, 2018, 08:12:53 AM by elephant »

Offline sherri

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Re: New Here
« Reply #3 on: July 05, 2018, 07:27:15 PM »

Glad to hear that your surgery went well and you are on the mend.

donation surgery is a very unique situation. Many donors are drawn into the process for months or years in your case and expect a working kidney. I kind of think of it the way, a couple may go into pregnancy and find out that there is a problem with the baby at birth. while we all know there are risks to transplant, i don't think anyone thinks it will happen to them.

The positive side is that anti rejection medications and treatments have come a long way. So even if your recipient is experiencing rejection at this time so close to surgery, the team may be able to help him. Most centers doing transplants are large teaching hospitals and have an experience inter disciplinary team so that all available resources can be used to save this precious gift.

The other important aspect is to remember that this unfortunate bump in the road (and will call it that until proven otherwise) has nothing to do with your donation. on the contrary, you have given your recipient a second chance and life off dialysis. If need be, he may need to do dialysis again but hopefully not.

It is really important that you take care of yourself, heal from your surgery (you are also a patient) and try not to let this define your donation experience.

Welcome to the club you did a wonderful thing!

keep us posted.

Living Kidney Donor 11/12/07


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