Life With Pkd1

I am currently 28years old. I was diagnosed by ultrasound when i was 17 due to a bad UTI. I have not had one since thank goodness and have not had a lot of issues yet. My father had PKD1 as well and just passed away in January this year due to heart complications stemming from PKD, and our health facility here is sioux falls SD not keeping his blood pressue controled while on dyalisis. I have since found out about the Trolvaptin study going on at Mayo Clinic in Rochester MN and have just started my first day of the Trial drug today. They are the #1 kidney care facility in the USA. Dr. Torres the head doc of the departmnt and this study in the US is based there and i have learned soooo much from him. Before i didnt even know there was a PKD1 and PKD2. For others that done know PKD1 is worse then PKD2. If you have PKD1 kidney failure usually happens in your 50s where PKD2 failure usually happens in your 70s and sometimes not at all. Trolvaptin has been very sucsessful so far with trials over that past 6yrs and they are just finishing a large study of around 180 people by the end of this month to submit to the FDA for approval for a 1time release dose from what i have learned. The information i have learned is that is is slowing down the growth of the cysts and in a lot of cases stopping the growth meaning hopefully a lot longer with out kidney failure if they fail at all!!! Lets hope for the best!!! if any of you have a facility that is participating in this i suggest you get to it! i have read my reviews form those who have been on it and its all possitive! I hope all of you the best. My father went through more then anyone should ever have to. 2 staph infections, 2 fistulas, and due to the staph infections the antibodies in his blood were so high it took him almost 6years on dyalisis to get a transplant. then a year and a half later the kidney died from a bad bactiria infection he got again then the heart issues, liver issues and the list just goes on and on and on. Needless to say my doctor tells me he had a very sever case and thats not how it normally goes but of course i still worry since i lived through watching it all happen. Its a scary thing to have but its managable so try to keep your heads up and stay healthy!!
smvanam smvanam
2 Responses Apr 3, 2012

I am sorry for your loss, smvanam.

I lost my father to ADPKD six years ago, he was 43. I am 28 as well, and have known that I had PKD since I was 22. Although, I do not know whether I have PKD1 or PKD2... considering only a few effected members of my family survive past their 50's, it is probably the first one. I have heard about the Trolvaptin study, and if it gets approved I may see if my doc will place me on it. Right now aside from flank pain, heart flutters now and then and some headaches I think that I am doing fairly well.

I wish you the best!

sorry about your father's story! It is fact that control of the renal cysts will lead PKD people live a normal life. Dialysis and kidney transplant can not change renal cysts