Kidney Transplants

Join us if you had or are going through a kidney transplant.  This group is for us to share our ups and downs along the way.

Location: Transplant
Members: 418
Latest Activity: on Friday

Discussion Forum

Insomnia...I need to sleep.

Started by Deborah Boychuk. Last reply by Michelle Apr 1. 48 Replies

Prediabetic Donor

Started by sumi123 Mar 19. 0 Replies

A bump in the road???

Started by Amanda. Last reply by India Rose Mar 18. 2 Replies

I feel like I need to pee all the time!

Started by Jessica Dancy McCollough. Last reply by miocean Mar 16. 13 Replies

How long did you wait?

Started by Amanda. Last reply by Rita Mar 12. 34 Replies

Has anyone had PD catheter removal surgery?

Started by Jessica Dancy McCollough. Last reply by Greg Feb 26. 11 Replies

desensitization process

Started by Amy. Last reply by Noah Jan 30. 9 Replies

Calorie Intake and Excerise

Started by Herbert. Last reply by Amanda Jan 25. 13 Replies

Happy New years!

Started by Amanda. Last reply by miocean Dec 31, 2013. 3 Replies

So itchy!!!

Started by Nicole. Last reply by Amanda Dec 26, 2013. 18 Replies

Knee replacement surgery post tx

Started by Wendy. Last reply by Justin Oct 30, 2013. 18 Replies

Comment Wall


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Comment by Cindy on March 10, 2014 at 10:48am

Thank you so much for replying to my post. I'm wondering why you were advised to rest? I have felt fatigued since my tx, but especially so now. May I also ask you if the bk virus went away entirely, and never came back? Were your immune suppressant meds lowered permanently?

Comment by Lori on March 10, 2014 at 7:44am

Hi Cindy,

  I had BK and another virus which the name I can not remember?  My team was concerned but treated it as if it was routine. They lowered my  meds and told me to rest. I was virus free in about 3 months and I also  had labs weekly.

Eat well, get lots of rest ! I'll pray for a quick recovery!


Comment by walt on March 8, 2014 at 1:25pm

I will definitely bring this up with them. And I will check out the other posts.

Comment by India Rose on March 8, 2014 at 11:08am

Walt - there has been quite a lot of discussion about generic prograf under the Prograf group recently..  Check out the last few discussions there.  My team at Johns Hopkins told me that there has been a lot of variation in the generics so they prescribe a specific brand called Hecoria.  I suggest you let your Dr. know about the switch each time they send  you a letter.

Comment by Carolyn on March 8, 2014 at 10:19am

Walt -Did you ask your Pharmacy why they are more comfortable distributing generic Prograf from Accord than from the previous generic manufacturer?  I was quite surprised recently when my mail-order Pharmacy stuck with Prograf after I agreed to switch to generic. Over two years ago when I started on Prograf they gave me quite a hard time about staying on name-brand and wanted me to switch!  FDA is doing bioavailability testing on several classes of generic drugs. Immunosuppressant drugs are one category. Something must have concerned them.

Comment by walt on March 8, 2014 at 9:55am

I was just going to ask whether the folks suffering from fatigue had been tested for viruses. I've had sporadic episodes of Epstein-Barr myself. I had some numbness in the surgery area but it has since subsided. Transplant was in October, 2011. Question to the group: My pharmacy just sent me a letter saying that they were going to generic Prograf from a company named Accord? Anybody else been switched? Just last month I got a different letter warning about another generic version of the drug. Anything to save money I guess.

Comment by Cindy on March 7, 2014 at 7:31pm
Hi John & Lori

I had a simutainious kidney pancreas tx June 2012, at the Indiana University Ctr in Indy. When I complained of numbness in my lower torso, no one had heard of it. Likewise when I complained of fatigue. I'm sorry to hear you have some of this, but grateful to know I'm not the only one. I'm 54 and had chalked up some of these issues to middle age happening at the same moment of transplant ;) I do hope it will improve.
I was also recently diagnosed with the bk virus. My doc has reduced rapamune and prograf meds and I have labs drawn every week. Although I found some worrisome info on this, he doesn't seem concerned. Anyone have any experience with this?
Good luck, John.

Comment by Lori on March 7, 2014 at 5:21pm

Hi John,

  I had a kidney pancreas transplant Sept, 2010. The numbness has just started to get better. The tingling could be the nerve endings starting to heal, this is what my doctors explained to me.  Where you active before the transplant? I know it took a lot of work to get back to where I was before my transplant. I still have fatigue issues. I just try to do a little bit more each day.  Hope you find a answer!


Comment by John D. on March 7, 2014 at 4:12pm
Hi all. Kidney transplant Nov 2012..functioning fine..thank The Lord..but still having pain, tingling and numbness in lower abdomen area where transplant occurred. Had CT hernia..have been strengthening my core, no real improvement. Can ride stationary bike 30 min but cannot be on my feet for more than 20/30 min...anyone else have similar issues? Thx so much..take care all...John D.
Comment by William L. Bussear II on December 27, 2013 at 9:23pm

Hope everyone had a Magnificent Christmas and will have a Happy New Year!


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