Adpkd

[Juliaeve]

Hey everyone, I'm looking for a little support. I was diagnosed with ADPKD which eventually leads to kidney failure, for those of you that dont know what it is, its Autosomal Dominant Polycystic Kidney Disease. It's really upseting and has made me anxious alot. My question was about the actual disease. Is it possible for there to be a
''different strain" of this disease to which certain people develop cysts quicker than others? Especially in one set of genes. Can my mom and grandma develop cycsts slower than I do? Is there a chance that my case is different and my cysts develop abnormally fast even tho its not recessive? Thank you for any of your input, and God Bless.

[I Am Blessed]

Re: Adpkd

Hi! My father had what you have--the dominant gene. He had hundreds and hundreds of cysts. I have the recessive for PKD, which means the small "x," where I have only one, two or three cysts at a time. My nephrologist really does not classify my diagnosis as PKD, but rather CKD because he feels my damage has come from uncontrolled high blood pressure. Dad was around 46 when he was diagnosed with PKD dominant. He changed his diet drastically and lived until the age of 79. He probably would have lived longer had he not gotten bitten by his cat. He treated the wound himself, and months later it was determined that a parasite from the cat bite bore into the bone in his ankle. He was around 11 percent function (17% at the time of kidney disease diagnosis at age 46) at the time of the cat bite, and at the time the infection set up in his system he had gone down to around 8%. It was at that time a fistula was grafted, and 18 months later he actually started dialysis nearing 3-5% function.

As far as how fast you can develop the cysts, I guess I do not know the correct answer for that. I think those cysts are forming all the time. Forming and then bursting causing scar tissue.

[Juliaeve]

Re: Adpkd

I'm sorry about your father, that's very unfortunate, but I thank you very much for what you've said. It actually helps alot to hear from a non family member who has gone through similar experiences. The only information I know about my about my actual kindeys is that they are 18cm, and my kidney function is 100%. I'm still yoing so I would hope that it would stay that way for a while. I'm just praying that they won't grow too fast considering their size right now. Thank you for your input.

[lcavender]

Re: Adpkd

I'm mainly a lurker (shame on me I know- but I'm lazy), but had to reply to your post. I was diagnosed with ADPKD in 1992. I had no problems at all except for high blood pressure and occasional flank pain. Three years ago my kidney function began to deteriorate. In Dec. 2009 I was officially put on "the list" for a donor and about a year ago I started dialysis (PD).

It's been an interesting journey. I honestly didn't think I'd go on dialysis until my 60's (I'm 49 now). My mom has the same disease but she didn't go on dialysis until she was well into her 60's. She got a transplant about 13 years ago.

This disease is so unpredictable. Your kidneys might never shut down - and then again, they can go within the next year. It's kind of hit or miss. The only advice I have is don't let the disease become you. You are not PKD, you are someone who happens to have PKD.

Even though I'm on dialysis, I'm still able to work full time and do almost all the things I used to. A new social worker at my dialysis center seemed shocked that I was still working. She said I didn't look "sick." What's "sick" supposed to look like anyway? I had to laugh. She was very young and green.

Anyway, just wanted you to know that having PKD isn't the end of the world. It stinks, for sure, but you just make adjustments and go on with it. You probably have a good many years before you'll start pushing up daisies. LOL (Gotta keep your sense of humor) Let me know if you have any questions about anything.

Hang in there.
--Lisa

[Juliaeve]

Re: Adpkd

Thank you very much Lisa. I appreciate it. I do think that this disease is unpredictable and that's what scary. I found out when I was only 15, two years later and its 100%, and I would hope it stays that way for a while. lol My mother is currently on a "clinical study" for a possible treatment of the growth of cysts. The drug is on the market, just not for kidney patients. It'a for heart disease, if I'm not mistaken.

There is another compound they recently found that could possibly cure it too. They said that it was able to treat both TORC1 and TORC2, whatever that means.

Hopefully, they can treat it soon. Because since I hate, hate, hate, needles, I don't know how I'd do with dyalysis.

[jeffmoore]

Re: Adpkd

Thank you very much Lisa. I appreciate it. I do think that this disease is unpredictable and that's what scary. I found out when I was only 15, two years later and its 100%, and I would hope it stays that way for a while. lol My mother is currently on a "clinical study" for a possible treatment of the growth of cysts. The drug is on the market, just not for kidney patients. It'a for heart disease, if I'm not mistaken.

There is another compound they recently found that could possibly cure it too. They said that it was able to treat both TORC1 and TORC2, whatever that means.

Hopefully, they can treat it soon. Because since I hate, hate, hate, needles, I don't know how I'd do with dyalysis.

hi juliaeve, i sent you a private message, if you are not familiar with this feature of davita, just look under your user name and it will indicate if you have any private or visitor messages pending. i hope to hear from you real soon. I have PKD, and have lived on dialysis for over two decades now, and do i have quite a story to share with you.
Glo