NFR The Big Ask - The Big Give - Kidney

mcswny

Active Member
I'm grateful - just terribly afraid of negatively affecting their lives. I'm 72; they're both under 40 and have most of their lives ahead of them.
Pasting what I edited above.

But quickly will say, the doctors will not let your boys donate unless there is very little statistical chance of them developing something in the future (this is based on science, not opinion). When I donated, I went through 6 months of tests. They basically drew 15 vials of blood once a week for 6 months. By they end, they new my health condition for top to bottom. I repeat, they do not let people donate if they are not an extremely healthy individual. So, with that being said, if your sons want to help save their pops life (I understand its not permanent), why stop them?

I wanted to give my friend a better quality of life, fully knowing it may come to bite me in the ass in the future. I was willing to take that risk with the reassurance of the medical community (I understand scientists arent perfect--please dont make this political). But what I couldnt live with was the fact that I was sitting there, healthy with 2 things of which I only needed one. And my friend/mentorr/big brother figure was slowly dying.

I'm 2.5 years out from the operation and other than a kick ass scar (i had an open surgery so i goes from my mid back to belly button), a little numbness in my belly, and call it 6 oz lighter I have almost zero issues.

If asked and able to do it again, the answer would be yes, a million times over. I was 31 at the time of surgery with an 18 month. I had a lot to lose, trust me. I understood it.
You're doctors wont allow anything to happen that puts anyone at risk.
In fact, you have 2 very separate teams that dont communicate for the very reason that the donors doctors ONLY advocate for the donor.
-Tim

Sorry for the shitty spelling and grammar, i went to art school ;)
 
Last edited:

Flyfishnick

Member
First off I pray your phone rings for the donor (living or deceased) soon.
I have been through it all with my wife from kidney failure, dialysis, then over to peritneal dialysis (which is the best for healthy individuals and can go for many, many years if needed and done at home) to finally a transplant. She endured peritneal dialysis for about 4 years, some complications but overall it was a healthy decision for us over standard dialysis while we waited for the phone to ring. Her transplant, about 10 years ago, outlasted her. She passed away suddenly last July from heart congestion or a blood clot and the kidney was amazingly in great shape from her last checkup. Upon her transplant 10 years ago, her surgeon walked in to the recovery room and always claimed that the donor kidney (from a young, deceased male) would out last her if she took care of it. She/We did take care of it and were very happy to the end.
I wish I could help you out. I was a perfect match (tissue and blood which are incredible odds of matching) for my wife but I could not donate because of my blood pressure. Even though it was under control, the UW hospital wouldn't let me.
 

mcswny

Active Member
First off I pray your phone rings for the donor (living or deceased) soon.
I have been through it all with my wife from kidney failure, dialysis, then over to peritneal dialysis (which is the best for healthy individuals and can go for many, many years if needed and done at home) to finally a transplant. She endured peritneal dialysis for about 4 years, some complications but overall it was a healthy decision for us over standard dialysis while we waited for the phone to ring. Her transplant, about 10 years ago, outlasted her. She passed away suddenly last July from heart congestion or a blood clot and the kidney was amazingly in great shape from her last checkup. Upon her transplant 10 years ago, her surgeon walked in to the recovery room and always claimed that the donor kidney (from a young, deceased male) would out last her if she took care of it. She/We did take care of it and were very happy to the end.
I wish I could help you out. I was a perfect match (tissue and blood which are incredible odds of matching) for my wife but I could not donate because of my blood pressure. Even though it was under control, the UW hospital wouldn't let me.
I’m sorry you had to go through that with your wife at such a young age nick. I wish the best for you going forward.
 

nwbobber

Active Member
Hans,

I know exactly where you are at having been on dialysis for 8 1/2 years. A transplant has a lot of down sides so look beyond to get answers. There is always a chance of rejection. Cancer risk is greatly increased. Loss of your immune system. Some insurance providers stop paying for meds after 3 years, that is 1000 per month. Complications from the initial surgery do occur at later dates. You will still have dietary restrictions but not as many. A transplant has limited duration, My sisters lasted 17 years and that is longer than average. There are other down sides.

A transplant is NOt a cure, it is a treatment. Do some serious research.

Transplant teams paint this rosey picture. Face it transplants are big dollar surgeries for the surgeons and hospitals so they will be very biased.

Dave
My son in law needed a kidney 16 years ago, five of us offered, and my wife was the lucky winner. For the recipient, I would argue there is no downside. It saved his life. I sat with him while he was doing dialysis, and I know that is no picnic. He lives a fairly normal life today, his nephrologist says the kidney is still working like a champ.
Now my son in law is pretty special in that he does EVERYTHING in his power to take excellent care of that kidney. He is religious about the timing of his medications, he stays well hydrated, he doesn't overindulge in anything. That said, we're at 16 years, and the way things are going this could last another 16, according to his doctor.
My wife has had some downsides... She developed surgical adhesions, which seem to be scar tissue that attaches to the bowel and cause it to kink a bit under certain circumstances. This has resulted in three hospital stays, that possibly could have been paid for by the transplant program, but not without considerable effort on our part. We have excellent insurance, and let them take care of it.
Would she do it again? Absolutely. It is something she feels very good about. And every time we see our grandchildren with their Dad, it is just the best.
We had the surgeries at OHSU, which has an excellent renal transplant program, or at least did at the time. All the time we spent there, I never got the feeling from anyone that all they saw was dollar signs. These are caring people who dedicate their lives to helping people. Money grubbers exist in the health care community, but in my limited experience, they are the exception. When I run into one though, I have no problem walking out the door to find someone with their heart in the right place.
 

runningfish

Active Member
First off I pray your phone rings for the donor (living or deceased) soon.
I have been through it all with my wife from kidney failure, dialysis, then over to peritneal dialysis (which is the best for healthy individuals and can go for many, many years if needed and done at home) to finally a transplant. She endured peritneal dialysis for about 4 years, some complications but overall it was a healthy decision for us over standard dialysis while we waited for the phone to ring. Her transplant, about 10 years ago, outlasted her. She passed away suddenly last July from heart congestion or a blood clot and the kidney was amazingly in great shape from her last checkup. Upon her transplant 10 years ago, her surgeon walked in to the recovery room and always claimed that the donor kidney (from a young, deceased male) would out last her if she took care of it. She/We did take care of it and were very happy to the end.
I wish I could help you out. I was a perfect match (tissue and blood which are incredible odds of matching) for my wife but I could not donate because of my blood pressure. Even though it was under control, the UW hospital wouldn't let me.
Hi flyfishnick,
I am sorry to hear about your wife, but she fought a good battle and won the war.

I am pretty happy that my thread has gotten a lot of attention and the replies are very supportive and the experiences shared are very encouraging for me to continue this fight.

I wanted to give an update of what's going on so far. First thing first, my eGFR is now just dropped from 17% to 14% and although I am not showing the kidney failure signs yet, I am pretty sure my Nephrologist will order me to be prepared for PD dialysis. Although overall I am feeling well, I do feel sluggish at time and my body's battery won't charge until full anymore. And as if my plate is not already full. I was just recently diagnosed with Latent TB (Tuberculosis), I am not contagious but I have to take 4 months long treatment because I am a transplant patient. This basically push any potential transplant 4 months back and I don't know if my current kidney function can keep up.

I've got 14 people contacted me. 7 of them never to be heard, another 6 didn't pass the questionnaire test, and 1 is in the next process. Hopefully she is a match. If she does, we are looking at December or January 2021 Minnesota winter's transplant. It is that difficult to find the right donor who is healthy enough. But I know that Mayo Clinic is very strict to protect not only the recipient but also the donor and I won't expect anything less than that. I am amazed with such supports from strangers in Southern California, Minnesota and Wisconsin who completed the questionnaire for me. Their backgrounds are an former US Army Captain, a retired school painter, a Chopper motor cycle rider, 2 house moms, and a wife who is taking care of her sick husband and at the same time rescuing German Sheppard.

I am going to make more of the car magnets 11"x17" and I can send them to anyone who wants to help me with this. Please PM me if you are interested to help with the car magnets or have questions for the donation.

If you are interest in donating please follow this link and my full name Burhan Ge.
On your computer please visit mayoclinic.org/livingdonor to get started. Once you have completed your information will be reviewed by living donor RN Care Coordinator and you will be contacted by email or phone. You can contact [email protected] or call 866-227-1569.

Thank you for your supports and I'll keep on casting and swinging for my kidney.

God Bless,
Burhan "Hans" Ge
 

Flyfishnick

Member
Hang in there bruddah! PD is a life saver and you will notice a good difference when you are ready. Just follow the strict guidelines of hygene when doing it and all will be good in the world. PD will also buy you lots of time to get the right donor :)
My wife even did manual exchanges while on road trips in my truck and the dog. We took the machine with us on a cruise and enjoyed vacations that way. It's all very 'do-able' and doesn't detract from your daily life much!
 

Support WFF | Remove the Ads

Support WFF by upgrading your account. Site supporters benefits include no ads and access to some additional features, few now, more in the works. Info

Latest posts

Top