New here

[JenR]

This is my first visit to the forum. I've been reading up on being a kidney donor because my Mom has stage for Polycystic Kidney Disease. This week she was told they will be putting in the line so she can start dialysis in May. She is at 17% function....so in reality I guess she really is in end stage. She is 65 years old and will eventually need a kidney. I know that there is a 50% chance that I could carry the gene to eventually develop this disease. I'm scared to donate but if I am a match for her and I don't have the gene I will do it. I've had my blood typed and am O+ just like she is. I know this is only the first of many steps but I guess it is a start. I came here for support, stories, guidance. I'm wondering if...when the time comes that she needs a transplant, do I do all the typing tests first or do I get genetic testing done first? Obviously if I have the gene I can't give up a kidney....but I don't particularly want to live my life in fear of this disease (meaning getting the testing done) if I am not a match. I'd rather not know about it for the next 30 some years.
Thank you for taking the time to read this. I'm really conflicted and stressed. Mom was at 24% function in December and down to 19% by the end of January....now down to 17%. I lost my Dad when he was 61 to Melanoma....I don't want to lost her so soon.

[Fr Pat]

Dear Jen,
     Hi. You might find it helpful to get and read the book "The Reluctant Donor" by Suzanne F. Ruff. She describes very honestly her struggles about whether or not to donate a kidney to her sister, in the context of a family with hereditary kidney disease. Included is the aspect about getting genetic testing. As it is a full-length book she is able to go into things (both medical and personal) at much more length than would be possible in a posting here.
Any book store could get it for you, or you can find it on line at amazon.com , barnesandnoble.com etc.
     Fr. Pat

[Clark]

Dear Jen,

  Best wishes! I recommend you see your primary care physician and ask for a referral for a genetic counselor. This discipline of therapists is new, but rapidly spreading as so many people, like you, are faced with the dilemma of the array of tests now available, with varying reliability, power of prediction, and consequences. While it is unlikely that such a person is also well versed in transplantation, weighing the options is in the nature of what they are trained to help with. My recipient also had/has PKD. Her children were minors when we had our surgeries, and she grappled with the testing decision for both of them. The recent insurance changes in the US change some of the dynamics of this, and it's been more than 10 years, so they're both adults now. They came down on the side of informed relationship and financial planning for testing, an issue for their eldest as she got engaged. Again, best wishes as you decide for yourself what's best for you.

[Stpfan44]

Hi Jen. Welcome to the forum, I wish the best for you and your mom.

[elephant]

Dear Jen,

I am sorry to hear about your Mom's illness.  She's fortunate to have a loving child who wants to help.  Keep us updated about your testing decisions.

Love, elephant