Introducing myself

[Kidme]

A quick introduction since I've recently joined this forum. I am about 6 years post-kidney transplant from a non-related living donor (most wonderful person ever). My family has a rare genetic kidney disease (uromodulin-associated kidney disease although it has quite a few names). I am in my 70s and am trying to stay as healthy as I can. Transplant life is mostly good but also challenging. The downside is I have this disease but the upside is many people get it when they are young but in my family it seems to wait until we're about 60. I hate seeing members of my family being diagnosed with CKD. Looking forward to exchanging info with other transplant recipients.

[Hidden]

Hi I received a transplant about a month ago, just currently doing regular blood work and doctor visits.

[WYOAnne NKF Ambassador]

Welcome to this wonderful community!

I had my transplant from a deceased donor 21+ years ago. I was diagnosed with FSGS, all related to a case of strep when I was 9 and 2-3 months later nephritis

I recently turned 70 and am living well, despite COVID. My creatinine has been stable at 0.8 - 1.0. I take Myfortic and Neoral for my transplant meds. How about you?

Were you on dialysis prior to your transplant?

Looking forward to "chatting" with you.

Take care.

[Lionkin]

Glad you joined this forum it is fairly informative, which often stimulates thinking.

I am curious how you determined "uromodulin" runs in the family, In my family kidney disease has surfaced in alternate generations ( I have had it from since early years, but had a transplant when nearing 70s. Thanks

[Kidme]

Thanks for the welcomes!

Cobrakai--only a month! That first year post transplant was pretty tough. I hope it goes well for you.

WYOAnne--You give me hope that you have had your transplant 21 years. I was so fortunate that I was able to have a pre-emptive transplant. I take Myfortic and Tacrolimus as my anti-rejection meds. I remind myself that transplantation is a treatment not a cure. I have days that I just don't feel that great. I've had 2 bad bouts of utis, the antibiotics just don't seem to work very well on them. The last uti I had lasted nearly a year!

Lionkin--Although we had no knowledge of kidney disease in our family until my mother was diagnosed, I connected fairly soon after my diagnosis (after my doctor did the genetic test) with a doctor at Wake Forest. His team runs a study and does the genetic testing for UMOD and several other CKD genetic mutations. That's how the other members of my family have been diagnosed. It seems so odd to me that we go from knowing no one in our family that has UMOD to now the second and third generations are being diagnosed. My known family was quite small so perhaps the people we didn't know had been sick. UMOD is a rare disease (but they suspect it might be more common than known) and they are working at trying to do family trees to trace the spread. They have made some great strides in a possible treatment and may be able to do a clinical trial in a couple years. Not for me, since transplantation means I don't have UMOD any more, but for the younger members of my family. A clinical trial for a treatment would be hopeful. I have learned there are other possibilities being worked on--the CRISPR technology and transplantation of pig kidneys, to name two.

Thanks for the replies!