Transplantation

[LBatl]

Would like to connect with people who have had transplantation or who are waiting.

[WYOAnne NKF Ambassador]

I am 18 1/2 years post transplant. I take neoral and myfortic immunosuppressants. I had glomerulonephritis and caused my kidney failure. Are you waiting or did you have a transplant?

[LBatl in reply to WYOAnne]

I am still waiting....18 1/2 years, that's great. I hope you are doing well.

[WYOAnne NKF Ambassador in reply to LBatl]

Yes I am, thank you!! But every quarter when I have my renal labs done, I still HOLD my breathe. My creatinine, with a few glitches, has been constantly at 0.9. Have had a few issues with my meds, and have been battling an incisional hernia in my transplant incision. It is right at my waist that makes it a real challenge. BUT LIFE is wonderful!!!! My donor was a 16 year old that was killed in a auto accident. Am in contact with his parents and am so grateful!!

Best of luck to you! You will be in my thoughts and prayers!

[March-31-09]

Welcome LBacote, years ago I was involved in a kidney support group in my town.

I meet a very interesting woman at the Kidney Gala- she now runs the group & I’m planning to check out the May meeting.

You might want to see if there is a group near you. I also can’t say enough great things about the National Kidney Foundation . My transplant was 3/31/09 & they have been a great help.

Check out their peer mentoring.

All the best to you

Shannon

[LBatl in reply to March-31-09]

Thanks

[pgjohnson2012]

Welcome to the site. July 8, 2018 I will be celebrating my 3 years post transplant. I was on dialysis for 6.5 years and the transplant list 3.5. My Kidney came from a 20 year old man that was killed in an auto accident. I’m taking prograf, a steroid, and another medication since my husband and I are trying to have another baby. I was taking myfortic but it’s not safe for pregnancy. My creatinine is 0.8. Haven’t had any issues that God. Life has been really good. I will keep you in my prayers.

[March-31-09 in reply to pgjohnson2012]

Nice creatinine!!!

[pgjohnson2012 in reply to March-31-09]

Thank you

[Dotti55]

After 9 years I finally got a transplant this past September. It’s been a long recovery, I was surprised just how much time it takes you to get back to normal but it is much better these days. So feel free to contact me.

[kindralynn in reply to Dotti55]

I just had my transplant on 1/11/2018, I am not back to work yet, and expected a much faster recovery. What kind of issues are you experiencing, if you dont mind sharing?

[Dotti55 in reply to kindralynn]

No, I don’t mind sharing at all. Wow just January? You’ve got a while and congrats! My biggest problem has been the fatigue. This is a MAJOR SURGERY and your body has been thru do much already. It took quite a while for me to get up enough energy to be able to exercise to build up my stamina. XDD. I live in the third floor and when I had to leave for an appt it took me so long I brought a lunch to go down and up. XD Had a little trouble with soreness for a bit too.

[Clover55]

I had my transplant in 2011 I've gone through many complications my creatinine is 1.9 and sometimes it's 2.0 to 2.1 my immune suppressant drug is nulojix I have been on this med since 2014 I am doing well though

[metalminded]

I just had my 5 year anniversary of the transplant. I take prograf and prednisone for rejection, and a few other meds for various other more minor things.

I waited for just over 6 years. I was on dialysis for 4 of those years, both in center hemo and home PD.

Unfortunately for me, the BK virus was detected in my transplanted kidney after 6 months and severely damaged the organ. Though the kidney is still working, thank goodness, my creatinine has been at the lowest 1.9 and highest 3. Hanging in there though.

I can't say I feel great, but I'll take the lack of energy over dialysis any day.

I also developed, around the same time as the virus was detected and being treated, several skin conditions. One was almost like acne, but it was all over my face, chest, back, and genitals. I also developed hidradenitis suppurativa in my underarms and groin.

No clue what triggered it. I took accutane for a while, which almost completely cleared up my face. I still have some on my upper chest (not much), my back, and my genitals. What I mostly have are sebaceous cyts, which are the worst on my back.

No one can seem to figure out what caused any of this.

Just as an FYI, I'm male, 49 years old.

[cynlee01]

Hello, I've been on peritoneal dialysis since the end of July. Still need some tests to get on the transplant list at Wake Forest Baptist Transplant Center in Winston-Salem. Problems with low blood pressure & low hemoglobin. It will all work out! For you too!

[KelliC_NKF]

If you'd like to also talk with someone by phone who has had a kidney transplant, we would be happy to connect you through our NKF Peers program. You can learn more here: kidney.org/patients/peers or call 1-855-653-2273 to get started.