What makes transplant kidney last long

[Kunalkath]

Can anyone above 10years + kidney transplant receipent kindly share their medicine protocol ...And food habits so that we could get some idea and learn from those experience .....

[March-31-09]

Hi there, My 12 year kidney anniversary was this year. Once a week I put my day meds & night meds into individual little containers. I take the day & night meds roughly 12 hours apart. It would be untrue to say I’m always right on with that.

In as much as I know that taking this medicine is keeping me healthy & extending the life of my transplant I’m diligent about taking it. Not that I’ve never missed a dose in 12 years, but there have been years I’ve never missed one. I feel very blessed that my friend Molly gave me her kidney. I think it would be hugely disrespectful to her to not take the best care of myself as possible.

I try to eat healthy, kidney friendly food. However, I probably eat too much salt (processed food). I’m pretty savvy about how food can effect my kidney labs. Too high of potassium means eating white rather than wheat bread, no avocado ( which I adore) no potatoes etc…..

I make an effort to always have water with me - I drink a ton.

I drink very little alcohol / love a Guinness every once in awhile. Haven’t smoked in 21 years.

I have a GREAT medical team, who have my back & are always willing to answer questions.

Take care & enjoy the summer

#MyKidneysMyLife

Shannon

[Okiksaints1955 in reply to March-31-09]

Great advice. And good life balance, still enjoying normalcy within the allowable boundaries. That is how I wanted to live my life also - the 80-20 rule. I am looking forward to the same outlook and longevity.Take care and be well.

[Hidden]

I had my second in 1982. The match was pretty decent and from a family member. I am currently on 5mg of prednisone and 500mg of cellcept twice a day. I am on other meds, but not for the kidney. I do not eat much protein, take the meds I agree to take on a regular basis, avoid pregnancy, drink a decent amount of water and attend every scheduled appointment with nephrology. I do not drink alcohol, smoke or use illegal drugs. Other than that I do not do anything out of the ordinary. Hope this helps.

[WYOAnne NKF Ambassador]

I will be 22 years post transplant this October 15th. - I take my meds roughly 12 hours apart. I am on Myfortic and Neoral.

- I have quarterly blood and urine labs done quarterly.

- I see my nephrologist about every 3-4 months.

- I report any issues or problems to my PCP or Nephrologist if appropriate. Last year I ran a fever for 4 months and wound up having my gallbladder removed. I also have had an incisional hernia in my transplant scar repaired twice.

- I drink water to stay hydrated. I find if I don't do this, I tend to not feel well.

- I pretty much eat what I want, trying to stay away from salt and eat heart healthy.

- I like a glass of wine once in awhile & did get the OK from my nephrologist.

- I always get the OK from my nephrologist if wanting to take any OTC meds. I also double check with him if a doctor prescribes an antibiotic. Not all are kidney friendly after a transplant

- NO NSAIDS

- I have a great medical team

- Most importantly - LIVE LIFE! Develop a "bucket list" and go out and do it. 8 months after my transplant I was hiking the Highline Trail in Glacier National Park.

Best of luck to you and ENJOY!

[WYOAnne NKF Ambassador]

One other thing I forgot to include - the longevity of your transplant also depends on your match. Transplant coordinators look to match as many antigens/tissue markers as possible for your new kidney. And did you have a living donor or a deceased donor kidney?For me, I have surpassed all of the statistics for a deceased donor transplant. I should have needed a 2nd transplant at the 12-15 year mark. But here I am almost 22 years later!

My kidney also matched 4/6 of those tissue markers.

Best of luck to you and hope you continue to do well!

[anne627]

I have my deceased donor transplant for 27 years. I take prednisone, Mycophenolate and Gengraf and meds for blood pressure, Type 2 diabetes, cholesterol and gout. I never missed medication doses, try to remember to drink enough and try to live a normal life. I have a great nephrologist in NY and live now in Florida and see him on telehealth. I will see him when the pandemic ends. I don’t do anything special. I had a 6 out of 6 antigen match and feel very lucky.

[LisaSnow in reply to anne627]

Indeed a rare incidence to have 6 out of 6 match to a deceased donor! Congratulations for your long term success. What dose of Prednisone are you on?

[anne627 in reply to LisaSnow]

Thanks so much, Lisa. I take 5 mg. of Prednisone every other day.

[Kid1985]

I'm 36 post kidney transplant and come from the the UK. I eat and drink what I like, in moderation of cause. Apart from having to take my medication every morning I lead and have had a normal life. You were given a 2nd chance go out and enjoy and love life. ♥️

[LisaSnow in reply to Kid1985]

After 36 years of success what medications do you take now?

[pops81]

Im pretty much right there with March-31-07 and Kid1985. Just passed 40 years last month but a better match helps..I had an entire family behind me offering a kidney..However I do favor IPA once in a while over a Guinness. Best of luck and stay strong.

[PostivelyJo in reply to pops81]

I’ve just discovered IPA. ! Delicious isn’t it

[klb36 in reply to pops81]

i love the extra iron i get from my Guinness and remember you do not buy a beer you rent it lol 37 years transplanted

[LisaSnow in reply to klb36]

😂

[Janet_wyatt]

Hello, I am a little over 11.5 years post transplant. I eat lots of fruits and veggies and exercise at 3-4 times per week. I drink at least 64 oz of water per day. I take Prograf and azathioprine twice a day.

[desperateboy]

It's just luck. I did not take the prednisone doctor gave me for nearly 1 year. I generally take medicines late. And I have not gone for regular check almost 2 years.I don't mind my eating habit ,fast food, salty etc. I think , what you don't want happens in life. It's been a terrible 10 years. Living with somebody's kidney is like a torture. The bad thing is that my donor has problems with its kidney. My donor may be in need for a kidney too in the future. I wish ,there were no one to give a kidney for me 10 years ago when I was a child...

[Hidden in reply to desperateboy]

I ran across your post and although entertained, it brought sadness to my cold black heart. I had some good times early on. The Last ten years have been rough. I feel bad for my husband, because he busts his butt around here and at work and I am stuck at home with some painful bloating issue we are trying to currently figure out. We still are happy. What's your deal? Why so glum?

[Speedyjohn]

Had my kidney transplant 44 years i dont drink or smoke the only tablet i take is 5mg prednisone

[ChristopherW]

i have had my kidney 41 years so i reward with good wine regularly! It’s the least i can do for it 😀