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Message
re: Kidney Transplants, Anyone?
Posted on 5/13/25 at 3:49 pm to artisticsavant
Posted on 5/13/25 at 3:49 pm to artisticsavant
A bump for the thread-following folks. Not much new since previously updated. I've made a connection with the mentor I sought. Nice to be able to directly speak to someone who's been there. I forget who asked about emailing, my contact info is somewhere in this thread, I'm still interested.
No movement on status of donor. Some conflicts with brother lately that have made him look like an a-hole. Guy's been lying to our mother about stuff and she believes everything. But 95% of the talk she has with people revolves around anything he would go through for surgery, recovery, and telling people I'm doing great (I'm not). The issue with him is he knows my condition isn't well, and a transplant would be a huge boost to change things, but he went as far as to tell me I'm our mother's caretaker, like he has no interest to be here. In my condition, I have to save energy to take care of myself.
So she's telling everybody that my brother is my donor, it's set, but that the hospital hasn't called yet and she doesn't know why (he hasn't gotten x-rays or colonoscopy required as a donor...) He's had all the excuses that I've basically reopened any attempts to gain support and get new people to participate as volunteers. When I began, I wondered if people volunteered if they would follow through, and if they didn't, how would that affect me. I'm starting to find out now.
No movement on status of donor. Some conflicts with brother lately that have made him look like an a-hole. Guy's been lying to our mother about stuff and she believes everything. But 95% of the talk she has with people revolves around anything he would go through for surgery, recovery, and telling people I'm doing great (I'm not). The issue with him is he knows my condition isn't well, and a transplant would be a huge boost to change things, but he went as far as to tell me I'm our mother's caretaker, like he has no interest to be here. In my condition, I have to save energy to take care of myself.
So she's telling everybody that my brother is my donor, it's set, but that the hospital hasn't called yet and she doesn't know why (he hasn't gotten x-rays or colonoscopy required as a donor...) He's had all the excuses that I've basically reopened any attempts to gain support and get new people to participate as volunteers. When I began, I wondered if people volunteered if they would follow through, and if they didn't, how would that affect me. I'm starting to find out now.
3
Posted on 5/13/25 at 6:58 pm to artisticsavant
quote:
So she's telling everybody that my brother is my donor, it's set, but that the hospital hasn't called yet and she doesn't know why (he hasn't gotten x-rays or colonoscopy required as a donor...) He's had all the excuses that I've basically reopened any attempts to gain support and get new people to participate as volunteers. When I began, I wondered if people volunteered if they would follow through, and if they didn't, how would that affect me. I'm starting to find out now.
Until he’s been fully examined and tested, and the committee has approved of him as a donor, then he can’t be called “your donor”. Your mom’s exuberance is pre-mature, and it’s causing confusion.
Any donor candidates that you can get should all go simultaneously if possible to get tested. Them agreeing to get tested is not the same as actually being the donor.
Furthermore, they may have second thoughts and decide not to go through with it.
The mental and spiritual place for you to seek for yourself is to be appreciative and thankful for anyone willing to consider it. Unite your powerlessness and suffering to the suffering of Christ.
This is a spiritual journey as well as a physical one. You are not only facing your mortality, you are facing physical and emotional suffering, AND the uniqueness of being a transplant recipient candidate is that you are DEPENDENT on others.
That is VERY difficult for most people, especially men who are used to being the provider, the giver, the fixer. Learning dependence and powerlessness can bring you so much closer to Father, the provider of all things.
Posted on 5/13/25 at 8:39 pm to AUCE05
My wife gave a kidney 10 years ago. She did very well almost immediately. The guy who got it also did well, although they both were sore for a while. He is in his 50s, back to work and down to just a few anti-rejection drugs. If you didn't know, you never would.
Posted on 5/13/25 at 10:06 pm to artisticsavant
quote:
So she's telling everybody that my brother is my donor, it's set, but that the hospital hasn't called yet and she doesn't know why (he hasn't gotten x-rays or colonoscopy required as a donor...) He's had all the excuses that I've basically reopened any attempts to gain support and get new people to participate as volunteers. When I began, I wondered if people volunteered if they would follow through, and if they didn't, how would that affect me. I'm starting to find out now.
Man, I think you need to quit worrying about the soap opera family shite. Either someone is a donor or they are not a donor. Worrying about who said what is just noise that you don’t need.
Posted on 5/13/25 at 10:15 pm to artisticsavant
Are you currently listed at a transplant center for a deceased donor kidney? There are many contributing factors as to how long your wait would be (avg ~4-5 years in Louisiana) but time on the waiting list is one of the most important variables.
Posted on 5/13/25 at 10:15 pm to artisticsavant
I worked for an OPO and have some interesting stories in the procurement rooms.
Posted on 5/14/25 at 10:53 am to dstone12
quote:
I worked for an OPO and have some interesting stories in the procurement rooms.
Procurement rooms? Sounds like a “by-the-hour” motel in Tijuana.
But seriously, give us a story! Dont be a tease!
Posted on 5/14/25 at 11:09 am to Jimbeaux
quote:
But seriously, give us a story! Dont be a tease!
I met a semi cute procurement professional while she was harvesting.
I am not a doctor, but was in full ppe when I started talking to her.
While we were about ten min in, the cadaver started getting an erection. T happened pretty quick and I was behind a mask, like, whoa, is this normal?
She said she had heard of it before but never saw it happen.
She and I hung out for for a few months. Thst subject came up a few times.
Posted on 5/14/25 at 11:21 am to Bamafig
quote:
The nurses tell me that the average “lifespan” of a donated kidney is less than five years
The average lifespan for a kidney from a living donor is around 20 years, the lifespan from a deceased donor is around 10-12 years.
I'm sure the nurses have seen some difficult cases and good habits are necessary for long term success, but their assessment of lifespan isn't accurate.
Posted on 5/14/25 at 11:23 am to artisticsavant
I'll likely be joining that list in a few years - I'm down to one as well. Docs at Tulane are monitoring my crentonin and blood pressure right now, everything seems okay.
Posted on 5/14/25 at 5:22 pm to Horsemeat
Thank you all for responses since I last posted. Very helpful for different reasons and different ways but all taken as positives. I'm keeping crazy busy with stuff this month when it's not appointments. New exercise routine, working on writing a book (not about my kidney adventures), just anything positive and healthy that keeps the mind active and moving, except the challenge of trying to shut it off when I need sleep. 
My longwinded writing style would turn this into an Oscar acceptance speech, but all support, experiences shared, everything told to me has provided a positive boost.
Horsemeat, if you want to reach out to me to talk about your situation, my email is 3100Travels@gmail.com - I'm open to sharing my experiences, as time goes on, what I went through, and being that you're a one kidney adventurer, hopefully I can be a positive contact.
Rey.... Tiger - My listed status is official, but it seems to be only for living donors with the idea being a currently-performing/active kidney providing a longer lifespan than from the deceased. I was told that if I can't find a donor myself, that the wait list time would be 2 to 4 years most likely.
dstone - bring the stories, I'm interested.
My longwinded writing style would turn this into an Oscar acceptance speech, but all support, experiences shared, everything told to me has provided a positive boost. Horsemeat, if you want to reach out to me to talk about your situation, my email is 3100Travels@gmail.com - I'm open to sharing my experiences, as time goes on, what I went through, and being that you're a one kidney adventurer, hopefully I can be a positive contact.
Rey.... Tiger - My listed status is official, but it seems to be only for living donors with the idea being a currently-performing/active kidney providing a longer lifespan than from the deceased. I was told that if I can't find a donor myself, that the wait list time would be 2 to 4 years most likely.
dstone - bring the stories, I'm interested.
Posted on 6/15/25 at 11:34 pm to artisticsavant
Able to reflect on the past month since my last update on things. I've spoken to my brother about why I haven't heard any news on his progress as a donor. Turns out the clinic has noted he has high blood pressure and high cholesterol as well - hereditary, but still. Nothing he ever brought up with me at all, seems kind of important that it shouldn't be kept from me how things were going, but what do I know?
Since then I've made progress in other ways. I've reached out to a friend of a cousin's who had a transplant herself and came away with momentum and good ideas. I'm designing a flyer to distribute locally and beyond, in my search for donors. My local connection for a potential match didn't come through and that was disappointing, but I'm being realistic that this is a big thing to ask of someone. For me, a transplant is really the only option. Sure, dialysis is possible but that's the short-term solution.
I've reached out to different local groups about being able to promote or allow me to post a flyer at their locations in hopes of picking up new volunteers. Some good feedback, some without responses. Feeling pretty good about the new ideas and things I can do. Waiting for this month's blood work to come up to find out where my GFR is at (late April is was a 9). Did a short trip away to clear my head and it helped even if I felt like shite at times, it was a good change of pace from feeling run down by constant doctor's appointments.
Since then I've made progress in other ways. I've reached out to a friend of a cousin's who had a transplant herself and came away with momentum and good ideas. I'm designing a flyer to distribute locally and beyond, in my search for donors. My local connection for a potential match didn't come through and that was disappointing, but I'm being realistic that this is a big thing to ask of someone. For me, a transplant is really the only option. Sure, dialysis is possible but that's the short-term solution.
I've reached out to different local groups about being able to promote or allow me to post a flyer at their locations in hopes of picking up new volunteers. Some good feedback, some without responses. Feeling pretty good about the new ideas and things I can do. Waiting for this month's blood work to come up to find out where my GFR is at (late April is was a 9). Did a short trip away to clear my head and it helped even if I felt like shite at times, it was a good change of pace from feeling run down by constant doctor's appointments.
Posted on 6/16/25 at 2:16 am to artisticsavant
Best of luck to you, man. Many people need kidney transplants and many more need one but they don’t know it.
Posted on 6/16/25 at 8:02 am to artisticsavant
My kidneys failed last year. After a trip to Colombia i got very very sick. I just thought it was from all the street food i ate and didn't worry much.
After recovering i started gaining weight fast. Even though i was starving myself. Then my legs and stomach started swelling. My legs got to where stairs hurt. I still didn't go to the doctor because i hate doctors.
It wasn't until i almost cut my toe off that i went to a doctor. Routine tests showed 8% kidney function. They sent me to ER. I stayed in the hospital 18 days. I did 10 hemo dialysis sessions and lost 70 pounds of water weight in that time.
Had tubes in my chest for dialsys which wasn't that bad. I'm on PD now which is easier but i have an almost two foot long silicone pipe coming from my stomach. I wasnt really self concious about the chest cath. But the PD cath i feel is crazy. Yeah i know it keeps me alive but it also just sucks to have.
. I have two donors lined up but my stupid clinic social worker screwed me over with horrible insurance advice. And i don't have enough insurance for transplant. (I only have an 80% plan. They want 100% covered). So i need to wait until October when i can get new obamacare because self employed pre existing condition insurance is insane.
I'm outside the country now on a trip. My first since this all happened. I know it's dumb but I'm taking a break from dialysis too.
I've already decided if PD fails. I'm not going to hemo. I'm just going to do hospice. Hopefully i get transplanted before then.
What sucks is my life was on this post divorce freedom high. Having the best life then this happened.
Kidney failure destroys your drive to do anything.
If you can get transplanted or do anything to avoid dialysis. Do it.
After recovering i started gaining weight fast. Even though i was starving myself. Then my legs and stomach started swelling. My legs got to where stairs hurt. I still didn't go to the doctor because i hate doctors.
It wasn't until i almost cut my toe off that i went to a doctor. Routine tests showed 8% kidney function. They sent me to ER. I stayed in the hospital 18 days. I did 10 hemo dialysis sessions and lost 70 pounds of water weight in that time.
Had tubes in my chest for dialsys which wasn't that bad. I'm on PD now which is easier but i have an almost two foot long silicone pipe coming from my stomach. I wasnt really self concious about the chest cath. But the PD cath i feel is crazy. Yeah i know it keeps me alive but it also just sucks to have.
. I have two donors lined up but my stupid clinic social worker screwed me over with horrible insurance advice. And i don't have enough insurance for transplant. (I only have an 80% plan. They want 100% covered). So i need to wait until October when i can get new obamacare because self employed pre existing condition insurance is insane.
I'm outside the country now on a trip. My first since this all happened. I know it's dumb but I'm taking a break from dialysis too.
I've already decided if PD fails. I'm not going to hemo. I'm just going to do hospice. Hopefully i get transplanted before then.
What sucks is my life was on this post divorce freedom high. Having the best life then this happened.
Kidney failure destroys your drive to do anything.
If you can get transplanted or do anything to avoid dialysis. Do it.
Posted on 6/16/25 at 8:04 am to artisticsavant
It sucks in the US you can't pay for donors. I'm sure plenty of people would sell a kidney for $100k+
. Which i know seems high but the surgery is $450,000
So what's another 100k?
I see signs all over the city "my dad needs a kidney" and i know random donations are a thing. . I'm one year into dialysis and not even on the list yet.
. Which i know seems high but the surgery is $450,000
So what's another 100k?
I see signs all over the city "my dad needs a kidney" and i know random donations are a thing. . I'm one year into dialysis and not even on the list yet.
Posted on 6/16/25 at 8:07 am to Napoleon
quote:
I'm one year into dialysis and not even on the list yet.
Why aren’t you on the list yet, Nap? Whats going on?
Posted on 6/16/25 at 8:22 am to artisticsavant
Look into chain donation groups. There are a couple out there.
Basically, they line up a series of patients who all need a kidney type that another donor has, and that donor is not a match for their own recipient preference.
So each donor ends up sending their kidney to an unknown person and each donor gets a kidney for the patient they are trying to help.
It’s pretty awesome.
Basically, they line up a series of patients who all need a kidney type that another donor has, and that donor is not a match for their own recipient preference.
So each donor ends up sending their kidney to an unknown person and each donor gets a kidney for the patient they are trying to help.
It’s pretty awesome.
Posted on 6/16/25 at 1:14 pm to Napoleon
Curious but has the topic of being listed not come up when meeting with your doctor? For me the process was going through the transplant clinic meet and greets, doing all the testing necessary, getting the first of the monthly blood (an ongoing thing until surgery or beyond) and then being approved for being listed.
Look into it, be aggressive and follow up to assure that you at least have that. I know the process can be exhausting but getting listed at least resolves part of it. I've been working my arse off brainstorming where to post flyers, who can help expand the reach, and so on. It hasn't netted any new results or anything but it's a starting point.
If you have any questions and I fall asleep about the posts here, say hello at 3100Travels@gmail.com - it's my real-fake travel company email.
Look into it, be aggressive and follow up to assure that you at least have that. I know the process can be exhausting but getting listed at least resolves part of it. I've been working my arse off brainstorming where to post flyers, who can help expand the reach, and so on. It hasn't netted any new results or anything but it's a starting point.
If you have any questions and I fall asleep about the posts here, say hello at 3100Travels@gmail.com - it's my real-fake travel company email.
Posted on 6/16/25 at 1:16 pm to Meauxjeaux
Very helpful of you mentioning this. I couldn't think of the name of the program itself or the concept and was just drawing a blank, but believed there had to be something in existence that worked like this.
There's a couple Facebook groups I found (and one I joined that was mentioned here previously) that I'm not sure how it differs being listed versus how going through my transplant clinic and being listed works. NKF is one and then there's another like "Find-A-Kidney" or something and I don't know if it's mutually exclusive, working independently or along the guidelines of the registry I'm in.
There's a couple Facebook groups I found (and one I joined that was mentioned here previously) that I'm not sure how it differs being listed versus how going through my transplant clinic and being listed works. NKF is one and then there's another like "Find-A-Kidney" or something and I don't know if it's mutually exclusive, working independently or along the guidelines of the registry I'm in.
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