Hio I'm Sam. I'm the guy with the sign trying to get a kidney. A.M.A.
Hi I’m Sam. The info on the card is the Piedmont donor testing line. I’ll include at the bottom. I have
IgA nephropathy (nuh-FROP-uh-thee), also known as Berger's disease, is a kidney disease that occurs when an antibody called immunoglobulin A (IgA) lodges in your kidneys.
I was diagnosed in my 20s. I kept my kidneys functioning for almost 30 years through diet, exercise and huge doses of prednisone. For this commenting on my weight. I’m carrying about 3.5 liters of dialysis fluid in my Peritoneal cavity. The solution is basically a sugar water solution. It adds a huge number of calories to my daily intake. I am a vegetarian and I exercise daily. I only strength train 3 days a week now because my recovery times are longer. My BMI is well within the range for surgery.I walk 2 miles daily. I have 2 rescues ( hence the daily walks). I also care for my mother. She has Alzheimer’s And cannot manage her medications. I do not smoke. I don’t really drink. I did try marijuana (withDr approval) for restless leg. I did not like it so I discontinued it. I have been on dialysis for almost 6 years. The wait times keep going up and my health is declining. I have applied at multiple transplant programs. At least I think I have, the process is definitely not transparent. It all has to be done by your Dr.s office and no one will tell you anything. Even the information I have on the wait times is from a third party. The medical community is very close mouthed about all of. I do not know where I am on the list I do not know how long my wait will be. I went to stand on the road because I’m desperate. I do not want to die while waiting on this list. It was the only thing I could think to do.i did not go out there with the intention of gaining notoriety. I’m actually a very quiet very private person. I do not want to be famous I just want to live. Someone sent me a message about doing an AMA. I will try to figure it out tonight. I’d like to thank you all for your support. It means everything to me. ( to the guy that said I just wanted a human kidney, you made me giggle.) Thank you all Sam
Piedmont donor testing number
I also have an account with the Georgia Transplant foundation. Proceeds may only be used for transplant expenses any unused funds will go to help other Georgia transplant recipients.
thank you. I'm A- and I can also receive an o, but thats not as big of a deal anymore because they do daisy chain transplants now. Say you match suzy and her donor matches me they will swap us all out at once.
I am also A- Where are you located?
I'm in Georgia 20 minutes north of Atlanta.
A negative here as well, and pre-service teacher. You might end up with like 8 kidneys from Reddit alone.
Maybe we could share. Lots of people in need. :)
I'm going to have to go to bed now. I will check back tomorrow after work. Thanks everyone! Have a great evening.
Huh.. I'm a 21 year old that got diagnosed with IgA Nephropathy last year, had symptoms for quite a few years before hand. Any tips you could lend me about diet, exercise, etc? I am currently trying to find my own nephrologist because past being diagnosed I haven't heard anything and cannot reach the guy.
I kept my weight down despite all the prednisone through exercise. They had me on a low protein diet for years. I consumed about 3.5 grams of protein a day. You really need to find a nephrologist. They should refer you to a dietician. If not ask to be referred. All of this stuff is very specific to the patient. If you are having problems contacting the doctor find another one. If communication is bad now it would probably continue to be so. Start calling other doctors find one you like.
I am 27 yo that got diagnosed with IGA nephropathy roughly 5 years ago while on active duty in the US military. Thank you for shining light on this disease. I was on an extremely high dose of prednisone and immunosuppressants for a year and a half. I gained alot of weight and it is hard for me to lose it, even now. Any tips!?
Exercise. Its hard at first but it gets easier. I actually enjoy it now and feel weird if I skip a day. It happened over time.
I’m new to all this, so sorry if this is a dumb question. Does this mean you will also need a transplant? If so, what is your blood type? Where can someone be tested to see if they can match you? I don’t match op, but maybe I’ll match you.
I do need a transplant. My blood type is A- but nowadays thats not as important. They will now do 2 and threeway swaps.
You could call the piedmont donor testing number to find out more
Thank you so much!
What are your opinions on opt out organ donation? Would it increase your chances of finding a match?
I think it would be a great Idea. as long as People can opt out if desired.
OP, what state do you reside? Please PM me if you're not comfortable with publicised.
How much does it cost to donate a kidney? I’m assuming insurance wouldn’t cover me if i wanted to donate privately.
Actually from what I understand, My insurance pays your transplant associated costs.
What is your blood type?
A- but I believe I can accept an o also. Thats not as big of a concern as they can do daisy chain transplants. Where if my donor matched suzy and her donor matched me they would just do us all at once. :)
Can you explain a little more how daisy chain surgeries work?
As I understand it if you have a donor that does not match you they compare that donor to others on the list. If my donor matched Suzy and her donor matched George and George's friend matched me they would put us all in one hospital and perform all the surgeries at once by putting the appropriate organ in each patient.
Is there an upper limit for age of donor?
think 65 but I'm not sure. I can call and ask tomorrow.
TL:DR... you still need it? How can I be tested for a match? If you can use it, take it.
LOL. Call this number they prompt you through everything (404) 605-4128
Question. Are diabetics able to do kidney transplants?
Diabetics cannot donate. They can receive transplants but as I understand it they have to wait for a deceased donor as they will also need a pancreas. I am not a diabetic so I dont that much about their treatment options. Hope this was at least a little helpful.
Dang sorry sir, was hoping I could be an option. I hope you can find a compatible donor sir! Stay safe sir
Well thanks for thinking of me. Take care of your diet or you will be me one day.
No you do not need to wait for a deceased donor as a diabetic. A lot of time they (doctors) choose Not to allow the pancreas even if it is available because "you can live without it" and because the warning signs for rejection are not as easy to see. You are absolutely correct about the lack of transparency though. I frankly feel it is bull people not already on dialysis get the organs first sometimes. Just getting on the fabled list is damn near impossible for some of us, even with donors.
~pissed about all this stuff because it's happening to me as well
Sorry about the mis information. I have not read much about diabetes.
Have you seen the John Oliver bit on dialysis on his show Last Week Tonight? If so, do you think he did an accurate job depicting the state of the dialysis industry in America?
That was excellent! I was not informed that I could cross list at different centers I found it on line about a month ago. The emphasis of the training was different dialysis modalities.
Hi there! I worked in k/p transplant for a while and if there’s any way to list in region 1, I might suggest it. They have historically low waiting times. Shortest in the country. It’s in the northeast, Maine mostly.
I'm trying to list in several regions currently. I dont think thats an option as the travel time would be too long. Thanks Though!
I have not seen it. I will look for it. I don't have a lot of time for TV. I did manage to get through 13 reasons. It was very tough but it seemed so important. I'm trying to watch Pose but is harder than 13 reasons. So while I take a break from that I'll look for the John Oliver piece. Thanks
That was Excellent!
The clip is on YouTube if you're interested. That way you won't have to pay for HBO.
Thank you, I found it. It was excellent!
Have you explored IVIg? I have a disease caused by immunoglobulin G deposits in organ tissue. I was offered IVIg (off label use) and it changed my life.
I'll ask about it . Thanks.
Hey man, what's your blood type?
I'm A- and I can also receive an o, but thats not as big of a deal anymore because they do daisy chain transplants now. Say you match suzy and her donor matches me they will swap us all out at once.
Did the added weight from the dialysis fluid throw your balance off or make you feel top heavy after it was put in you?
Do they have to add more or exchange the fluid after a period of time?
What's the difference in need between someone who regularly needs to go into the hospital for dialysis and the fluid in your peritoneal cavity? Is it the new & easier treatment, or will the first come eventually for someone with the latter?
I did have some problems a t first but Ive become accustomed to it.
I connect to a machine at night that does 6 fluid exchanges over 10 hours. The last function it performs is filling me with 3.5 liters of fluid I carry through the day.
The peritoneal dialysis is available in most clinics. It requires you to be able to connect the machine, to store and manage a large amount of dialysis supples and to be able to lift the boxes of fluid. I'm not sure why people choose the other options.(they let you choose your treatment option) I do have to have a catheter protruding from my lower abdomen (about 2 inches to the left of my navel.) I've talked to people that had body image issues with that and the expanded abdomen. The nurse told me some people will skip the daytime portion of the treatment to shrink their waistline. The really stressed how dangerous that was. I do drain the fluid to go to the gym but I refill asap afterwards. My draining for exercise was at the Doctors direction. The fluid makes me prone to hernias.
People skipping their daytime treatment sounds rather dangerous/unethical to their kidneys if they're failing, but who am I to judge.
They apparently do it to look better in their clothes. They tell me it is very dangerous.
Prednisone for thirty years?! I’m 16 and was diagnosed earlier this summer with AIH (Autoimmune Hepatitis) and have only been taking prednisone for a few months while we try to avoid a liver transplant and it’s completely wrecked me! I know you mentioned vegetarianism and overall better diet and exercise but how else have you combated the effects of prednisone?
We'll I've been on and off. I work at trying to keep the weight off while on it and really work at losing when off. I had problems with clots while on so watch for that. My leg has never been right since the clot.
Hey! I’m 24 and was diagnosed with Berger’s disease. How much of your kidney was damaged from it when you were first diagnosed? I am in remission from it right now, but it’s just always in the back of my mind.
I had about 40 percent function when I was diagnosed. They found trace amounts of blood in my urine and did a biopsy. I'm prone to auto-immune problems hence all the prednisone. Just keep an eye on it get a nephrologist and a dietician and follow their directions. The food thing can be difficult. As a vegetarian i really struggle to keep my protein levels up. Finding a good doctor and a dietitian that you can work with would be my number 1 priority if I were you. Good luck and follow your plan.
I still have 90% function, I was actually getting checked for something else and they found trace amounts in my urine too. I currently see my nephrologist and rheumatologist once a year. Just never seen or met anyone else with this. Good luck to you and all your future endeavors! And I actually do dialysis as a job. I’m a technician. If you have any questions please feel free to message me. :)
Thanks! Good luck to you.
This November will be 10 years since I've had my own kidney transplant. If I had one to give, I'd be all over it. Hoping you find a donor soon and you get to start your new life!
I only ever did hemodialysis in a clinic. I see you do the one at home. Have you ever done hemodialysis? If one day I end up back on dialysis I am interested in doing it at home. Do you have more freedom this way? Pros or cons to doing it at home vs in clinic that you can share?
I have never done hemo. I think PD has allowed me to keep working and I've even traveled some. Mostly to friends and relatives. I did go to Chicago for work My friend came along to help me with all the stuff. I'm not sure I could have done it alone.
How tall are you?
A friend recently told me that if a law was changed that automatically made every single person with a drivers license an organ donor, with an option to refuse to be a donor, rather than the option to choose to be a donor, that it would make it a non issue to get a kidney if needed. Is this the case and what do you think of the idea?
I think it would be very good as long as there was the option to not be a donor.
Woah dude. That's a scary thing knowing you need something that, ultimately, not a lot of people have access to. So seriously, have you ever tried the black market for a kidney? Does that kind of thing actually exist? I mean I feel like there's a market for anything, but is that something you'd even be open to considering all options?
While I have pretty good insurance, I do not have that kind of money. Besides I'd have no Idea where to look for something like that. :)
Sorry you have to go through this OP, hope you get a donor.
My question is, when did you realize there was something wrong? What were the signs and symptoms that made you go see a doctor?
I really didn't have related symptoms. I came down with shingles during finals week in undergrad. It presented on my lower back. I had sever lower back pain and they thought it was kidney stones initially. when a nurse spotted the shingles rash they started wondering about the trace amounts of blood in my urine. Thats how I found out. Just a fluke really.
Hey, I'm 18 and I was diagnosed with IgA when I was three of four (no memory of it). It's sad to see how far this disease can go and I wish you all the support you can get!
Your post here really gives me energy to start keeping better care of my self not only for the sake of this disease but also for general well being and health. My symptoms are realtively mild compared to yours so I have not really taken this that seriously which now makes me feel like a total idiot... Again: I wish you all the best and good luck!
Oh yeah and the question: What do you want to say as an encouragement to all young people with IgA nephropathy (such as myself)?
Shit... Gotta go running!
Take it seriously. Put together a good medical team and follow their advise. Live as healthy as you can. I know its difficult but it becomes easier with time. Take joy in small everyday things. I think being happy helps a lot.Good luck and stay well
I'm not sure of the ethics or legality of this, but can we start a crowdsource campaign and raise enough money to, uh, 'convince' someone to donate one and give the rest to OP for the hospital bills?
Question for OP: Is there a limit on how long dialysis is viable, or is it more a matter of how long you can afford the treatment? I (loosely) knew someone on dialysis and I know it was very hard on them. Hope you are doing well, all things considered.
Thank you, but I'm pretty sure thats illegal. I also do not like the idea of purchasing a kidney. There is all kind of wrong in that. I do have an account with the Georgia Transplant Foundation
If you would like to contact the Georgia Transplant Foundation, please use the email form below, call us at 770-457-3796, or contact us by regular mail at the following address:
Georgia Transplant Foundation
2201 Macy Drive
Roswell, GA 30076
My Name is my account number
Ive been on dialysis for 6 years. My health is beginning to decline. I'm worried that in 4 more years I will be physically unable to have the surgery. The chance of mortality goes up exponentially every year.
You can buy my kidney! Is selling your own organs even legal?
I'm pretty sure that it is not legal. I'm a teacher I have good insurance but not much money.
What’s your blood type? I may have a gift for you
Edit: Thanks for the gold kind stranger!
Edit #2: I’m still waiting on u/sam-worley ‘s call!
Edit #3: Just spoke to Sam! He’s a super nice guy, and I’ll say, he deserves this kidney. I’m also waiting on a call back from Piedmont Hospital to get the process started!
Edit #4: The hospital got back to me and the process has started!
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