NFR The Big Ask - The Big Give - Kidney

runningfish

Active Member
Hello everyone,
My name is Burhan Ge but I always go by Hans. I haven't been active lately on the forum since I sold my last switch rod man moons ago. I wanted to share my recent life story to you guys.

I was diagnosed with Secondary FSGS and it is in the final stage. My kidney function is currently at 17% and I am in critical need of a kidney transplants before I am forced into dialysis. I have only been sharing this with my inner circle but now I am trying to reach out to more people to help me since it is not realistic to fight this alone. When I was very young; I remembered that I wanted to donate my kidney to someone in need but never thought that I would be the one who is needing it. Every night before bed, I listen to my 6 years old son’s prayer to God to heal my kidney disease. He and his sister are my reasons to fight this condition

I am searching for a living donor as it significantly improves my survival rate and to let me have a better quality of life, expand my life with my wife, be able to see my 10 and 6 years old kids growing up, getting married, have grandchildren, and of course to fly fish and eat a good steak again amongst other things.

A kidney is one of those miraculous organs that you can live a long life just having one of. A donor can go back to his/her daily life is very short time. A woman actually joined the Army after she donated her kidney to her step brother. The benefit of getting a kidney from a living donor is the kidney will last longer; Up to 20 years and more when compared to a kidney from a decease donor.

I am also on a kidney transplant waiting list from decease donors, but the waiting is long and while waiting I have to be on dialysis with a lot of risks like infection and complication that I’d rather not think of and definitely scarier than them spiders!

My blood type is O+ but a donor doesn’t need to be an O to donate since we have this life saving Paired Exchange program that can save more than 1 life. It will match a donor with a different blood type to another recipient and the program will circle back to me with a matching donor, thus they named it Paired Exchange. It creates a chain of life saving transplants to multiple recipients. Follow this link to learn more https://mayocl.in/3xpdSIg

It is not my place to outwardly ask for someone’s kidney. That is a very powerful act of selflessness and personal gesture. However, I would truly grateful for a such selfless gesture.

You can help me to fight this in several ways.
  • Spread the word to your family and friends who might know someone who is willing to be a donor. You can start by sharing this message on Facebook, Instagram, Twitter or others social media platform.
  • Prayers and positive support for me and my family are always welcomed
Health Condition: Potential kidney donors need to be generally in good health, there is a procedure to determine whether or not one can be a donor. Let the experts tell you if can or cannot donate.

Medical Expenses: All medical costs incurred by the donor will be covered the recipient’s insurance. I will personally pay for your plane ticket(s) as well.

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.

Last but not least, feel free to contact me directly if you have any questions at [email protected]

I am planning to do the transplant either at Mayo Clinic in Rochester, MN or at Loma Linda University Hospital, Loma Linda, CA

Thank you very much for reading my story and please help by sharing my story to others and to create awareness that can help not only me but many others.

God speed!!!

Hans
 
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wetline dave

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
 

mcswny

Active Member
Before I start, let's be clear, diaylsis itself has an abundance of downsides as well. The information coming out of Fresenius and DaVita is crooked as well. So everyone, please do your own research, there's a lot of information out there and it's easy to get your hands on it.

But with that being said. I am in fact a living donor. I donated to my big brother figure/mentor and from day 1 his lifestyle improvements are astronomical. Short of becoming a father, it was the single most consequential thing I've done in my life. If anyone has any questions on the process before surgery and life after, I'm here and available.

tim
 
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bhudda

heffe'
Hans, I’m heart broken to hear about your plight and the wishful words of your little ones. I don’t even know what to say … I’m really sorry you are faced with this. I pray you can receive whatever you need to turn this around. A big internet bear hug from me to you and everyone fighting for you.
-Jeffreylee
 

wetline dave

Active Member
Just to clear something up. I am not against transplants. For some people it is a good option, just not for me.

I have dealt with 2 different dialysis providers and neither was "crooked" about any information supplied. In fact very straight forward, and Davita is one of the providers.

I have been very close to kidney failure issues for over 20 years. I was diagnosed 25 years ago of failure at some point and a sister and brother who opted for transplants.

I am not here to argue a position, simply pointing out a few things to consider and suggesting some deep research before making a choice.

Dave
 

runningfish

Active Member
Hi Dave, Tim, and Jeffrey.
Thank you for your insights, comments, prayers and supports. I understand there are ups and downs of each method. For me and my family it is very clear that we want to go with the transplant and we are pursuing it. We understand that transplant is a not cure but just a treatment and I might need to do this again in the future, but I'll worry about it later.

I was first told of Proteinuria (leaking of protein) in 2005 and the FSGS in 2009 a couple of months before my wedding. It progressed slowly but it is "swinging down river"on a floating line. LOL!!!

Tim,
thank you for your offer, much appreciated it! I will contact you when I have any questions.

Please share my story.

Hans
 

runningfish

Active Member
Before I start, let's be clear, diaylsis itself has an abundance of downsides as well. The information coming out of Fresenius and DaVita is crooked as well. So everyone, please do your own research, there's a lot of information out there and it's easy to get your hands on it.

But with that being said. I am in fact a living donor. I donated to my big brother figure/mentor and from day 1 his lifestyle improvements are astronomical. Short of becoming a father, it was the single most consequential thing I've done in my life. If anyone has any questions on the process before surgery and life after, I'm here and available.

tim
Hi Tim,

I have a question for you. You see, I had a couple people who contacted me and told me that they would donate. However, after some conversations and emailing they were never to be heard again.
I understand that they changed their minds for a various reasons but I don't want to force upon anybody either.

I just wanted to know what made you went through the whole process without the change of heart and mind?

Thanks
Hans
 

wetline dave

Active Member
Runningfish,
I certainly hope you have scheduled for a fistula. That is far and away the best means for dialysis and infection and other issues are greatly reduced. A catheter is not a great alternative in my opinion.

The odds are you will have to go through dialysis before a kidney becomes available. It takes awhile for a fistula to develop so plan ahead and avoid a temporary catheter.

Dave
 

mcswny

Active Member
Hi Tim,

I have a question for you. You see, I had a couple people who contacted me and told me that they would donate. However, after some conversations and emailing they were never to be heard again.
I understand that they changed their minds for a various reasons but I don't want to force upon anybody either.

I just wanted to know what made you went through the whole process without the change of heart and mind?

Thanks
Hans
Hey Hans,

I could go on for a long time about this, and happy to.

To be honest. It was a pretty simple decision. He had been hiding his disease for 7 years, and by the time I found out, his kidneys were about 5%. He was avoiding diaylsis because he knew A. it was going to affect his way of life and B. once on dialysis, it reduces the chance of a transplant taking. I found out in August, applied that night. Basically had drs appts and tests once a week for about 3 months (getting 10-15 vials of blood drawn each time). and then mid december we had the transplant. From what I understand, its not usually that fast. But it needed to be done.

Back to your original question. What made me do it? I didn't want to see my friend, big brother figure, a good person go through that kind of pain. He drew the short end of the stick, no fault of his own and I'm sitting here with your perfectly good organs and only need one. Sure, my remaining may fail down the line (they run tests to find the likelihood of that happening, but its still a risk) and sure, life insurance premiums are more. But short of a really painful 3 months (I had to have an open surgery, and they had to remove part of a rib. My scar is front to back covering my entire side). There's a lot of reasons NOT to do it. But for me, it felt selfish. Why watch a good person needlessly suffer when I can help fix it (temporarily, I understand that). But the fact of the matter is, he's was 46 at the time and I was 31, so he got a younger healthier kidney, and if it gives him 20 years of a healthy life I can feel proud. We were always close. He's been a part of my life for over half of it ( and I dont have a lot of friends I can say that of). But now, we are closer in a way I can't describe and frankly most people will never understand.

I'm sorry if this comes across as rambling. I get a bit emotional talking about it and sometimes cant formulate correct sentences.

I'm here for more questions if need be.
tim

EDIT: I still dont know if I answered your question. There was never a doubt. Never a hesitation in changing my mind. And frankly, the only time I even got nervous or scared was the night before the surgery. I was putting my daughter to bed (at the time 18 months), in tears, scared that I may never see her again if something happened (even though I fully understood the likelihood of that happening were in the fractions of percentages).
 
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runningfish

Active Member
Runningfish,
I certainly hope you have scheduled for a fistula. That is far and away the best means for dialysis and infection and other issues are greatly reduced. A catheter is not a great alternative in my opinion.

The odds are you will have to go through dialysis before a kidney becomes available. It takes awhile for a fistula to develop so plan ahead and avoid a temporary catheter.

Dave
Hi Dave, if I had to go on dialysis; I am going to do the PD method. We have discussed the other methods and I think the PD is suitable.
How are you feeling now Dave?
Thank you for your recommendation.
 

runningfish

Active Member
Hey Hans,

I could go on for a long time about this, and happy to.

To be honest. It was a pretty simple decision. He had been hiding his disease for 7 years, and by the time I found out, his kidneys were about 5%. He was avoiding diaylsis because he knew A. it was going to affect his way of life and B. once on dialysis, it reduces the chance of a transplant taking. I found out in August, applied that night. Basically had drs appts and tests once a week for about 3 months (getting 10-15 vials of blood drawn each time). and then mid december we had the transplant. From what I understand, its not usually that fast. But it needed to be done.

Back to your original question. What made me do it? I didn't want to see my friend, big brother figure, a good person go through that kind of pain. He drew the short end of the stick, no fault of his own and I'm sitting here with your perfectly good organs and only need one. Sure, my remaining may fail down the line (they run tests to find the likelihood of that happening, but its still a risk) and sure, life insurance premiums are more. But short of a really painful 3 months (I had to have an open surgery, and they had to remove part of a rib. My scar is front to back covering my entire side). There's a lot of reasons NOT to do it. But for me, it felt selfish. Why watch a good person needlessly suffer when I can help fix it (temporarily, I understand that). But the fact of the matter is, he's was 46 at the time and I was 31, so he got a younger healthier kidney, and if it gives him 20 years of a healthy life I can feel proud. We were always close. He's been a part of my life for over half of it ( and I dont have a lot of friends I can say that of). But now, we are closer in a way I can't describe and frankly most people will never understand.

I'm sorry if this comes across as rambling. I get a bit emotional talking about it and sometimes cant formulate correct sentences.

I'm here for more questions if need be.
tim

EDIT: I still dont know if I answered your question. There was never a doubt. Never a hesitation in changing my mind. And frankly, the only time I even got nervous or scared was the night before the surgery. I was putting my daughter to bed (at the time 18 months), in tears, scared that I may never see her again if something happened (even though I fully understood the likelihood of that happening were in the fractions of percentages).
Thank you Tim for sharing your story and your unwavering commitment, you are a blessing to your friend. BTW, I am 47 years old. I actually had a young lady from Minnesota who emailed me the day before father's day who saw one of the car magnets that I sent all over the US to friends and family.


car magnet.jpeg

I could tell that she was very young, probably in college age and never replied back after a couple of emails either. It is pretty disheartening and kinda given me a false hope, but I guessed these people got carried away or just curious. I tried to reply very careful so not to sound begging or demanding. Nevertheless, I am convinced that one of these days, my efforts and my family and friends efforts will come to fruition.

Thank you Tim and God Bless.
Hans
 
My GFR is down to 10. Both my sons have offered a kidney but I'm reluctant, even though research shows that donors suffer no long term consequences. Am I crazy? Too emotional? I'm very interested in feedback.
Thanks,
Rick
 

mcswny

Active Member
My GFR is down to 10. Both my sons have offered a kidney but I'm reluctant, even though research shows that donors suffer no long term consequences. Am I crazy? Too emotional? I'm very interested in feedback.
Thanks,
Rick

Rick, I'm happy to talk if you want.
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.
-Tim
 
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