2 non-living long term kidney transplants

[Kidneytx2]

My first kidney tx was in 1978-2000 then 2nd kidney tx 2001 to present!

[Mary928]

What’s your secret

[Balap]

congrats..... Keep rocking

[Yankcg70]

Awesome!!! I had my non living donor transplant in 1989 and have been going great since then and am now to the point of not needing immunosuppresants either. It gives great hope that cadaveric transplant can last far past the normal "estimated" life span. Keep up the awesome work.

[Texasgirl44 in reply to Yankcg70]

Question: you don't take any medication or do you take steroids only? I'm my first transplant almost a yr in December and Im trying to learn what habits will make my kidney last. It also a cadaver donor.

[Yankcg70 in reply to Texasgirl44]

No nothing. The prednisone was stopped after about 13 years then we stopped the rest about 5 years ago. It took time and one at a time. But it has been successful. Know your body, be aware and dont be afraid to ask questions. Watch your diet and take care of yourself.

[Texasgirl44 in reply to Yankcg70]

What type of diet do you follow? What do you normally try to stay away from? Thank you so much for the insight.

[Kidneytx2 in reply to Texasgirl44]

Very interesting and jealous! However the UCSF transplant team absolutely refused to take me off any of my immunosuppressive. I have been on 5 mg like over 18 years + during my 2nd tx 1978 until 2000. I had a big scare about 4 years ago but the kidney kept going and I survived that scare. Every team out there looks at this differently is what i have heard.

[jennifer24 in reply to Kidneytx2]

Wow God Bless I been 18 years with mine it was from my father recently drop to 1.5 but I'm hoping it was because I was dehydrated when I when to the E.R for something not related to my kidney but creatine been 1.2 1.3 I been lucky too and take care of my self. I drink lots of water and try my best now to eat healthier because of my function being lower now . Anywayz I hope and wish my kidney last as long as urs . Once again God bless u and ur kidney 👍👍👍

[Kidneytx2 in reply to jennifer24]

Yes! The key for me is staying hydrated. In all this time i really havent followed the suggested water intake which for my size in about 56 ounces! I thought that waa A LOT OF WATER! But. I was desperate and i tell you everything changed woth me my kidney function is stable and good range around 1.2. My complextion is amazing!

[jennifer24 in reply to Kidneytx2]

Yess u look really healthy and happy water is always the secret for long kidney transplant function . Thanks for sharing your story it really inspires me to dont give up even when I get results that i I really dont like .

[Kidneytx2 in reply to Texasgirl44]

Yes I have to take my immunosuppression for the rest of my life! At UCSF they told me I will continue taking prednisone despite it's side effects. I've been on it since 1978. My other meds include blood pressure, cholesterol, trazadone for sleep only, aspirin...I started taking more meds as I got older

[LisaSnow in reply to Kidneytx2]

You look very young!

[Kidneytx2 in reply to Texasgirl44]

I will take immunosuppression meds for the rest of my life unless there is some break through which there could be!

[Hidden]

This is awesome, and you look terrific! What is your secret to keeping it so long?

[Kidneytx2 in reply to Hidden]

I've been learning every year. In the beginning in 1978 I picked up some very important thing s from my grandmother who did a lot of research and questioning. I was only 13 and she was my primary care taker. She gave me lots of yogurt, beef liver pre and post. We watched the salt as closely as someone on weight watchers watch their points. I remember everything had a score and that bacon had a very very high score of salt. As well as ketchup. I never ever use regular table salt just the saltless kind which I think is very good! There are many precautions I took. The only thing really that I lack right now is exercise...very bad I need to lose about 10 pounds which exercise would do for me. There is so much more. The most important albeit subtle is my all knowing that there is a God out there, an all knowing and loving. It is vmeery personal to me and spiritual.

[Hidden in reply to Kidneytx2]

So happy for you. I (unlike some transplant patients) am the opposite. My blood pressure is too low, and they keep telling me to eat more salt. It is crazy. The yogurt is not good for me, because my meds seem to make the potassium go up to high, so I have to watch certain things. And yes...there is a God, I agree. Keep doing what you are doing, you look great! God bless!

[Tahmed251]

The average is 10 to 12 years and your well over that. I hope mine last's that long, God willing. I am very happy for you, hope the kidney last's forever. Good luck.

[JEanes55 in reply to Tahmed251]

My kidney has lasted for 13 years and I am beginning to not drink as much water as I should. I just don’t feel thirsty. How do you keep drinking the water when you don’t feel thirsty?

[redpanda67 in reply to JEanes55]

I literally put a timer on that goes off 4 times a day and just chug a huge glass of water. Some days are easier than others. I have also learned different water is easier to drink. I live in Pittsburgh and the filtered tap water is terrible. I buy the 4-gallon bottles with the ultra-filtered reverse osmosis water that I think tastes better.

[WYOAnne NKF Ambassador]

I had a deceased donor kidney transplant in 1999. I am also doing great!

Congratulations on your success!

[Kidneytx2 in reply to WYOAnne]

Fabulous to hear!

[Kidneytx2]

Wow thanks for all the comments! Its so nice to hear from other transplanted people.

[anne627]

I have a deceased donor transplant 25 1/2years. I feel very lucky to have my kidney this long.

[JEanes55]

How do you drink water and plenty of it when you aren’t thirsty ?

[redpanda67]

I am so happy to see so many people who have had their transplants for decades. I was on dialysis for more than 9 years before receiving a deceased donor. I was hoping mine would last for at least 10 years so I could get through graduate school. I am now at year 17 without any issues. I have also been told I will never go off prednisone (still 5mg). But my Rapamune is down to 1mg a day and my Cellcept has been at 250 2x daily for about 10 years. I've also had more drugs added as I get older including blood pressure, statin, and lasix.