New diagnosis

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New diagnosis

Postby sailagrl » Sat May 05, 2018 12:11 am

Hi all,

I am 28, and just diagnosed with PKD about one month ago. I have TSC, which has caused PKD. My family and I always knew cysts were a possible complication, but now they've happened, and I'm scared. I feel fine, no side effects or anything. I'm just truckin' along like normal, but I feel like my life is upside down now.

I'm on my second opinion, and the doc has prescribed 3 litres of fluid/day and no caffeine (that'll be an issue, lol). Today, my labs came back normal, and the nephrologist told me to see him in one year.

Sidenote, the first doc said I was due for a kidney transplant ASAP. That doesn't fly with me. Not yet.

I want to know what's going to happen, because this is all new to me, and reading materials are scarce/easy to get through/without in depth advice. And, my boyfriend is freaking out, he's not used to medical issues. I want to be strong for him, but how can I, when I'm terrified too?

Anyhow, an overall synopsis of what's waiting for me would be nice.

Thank you so very much,


Re: New diagnosis

Postby Mark » Sat May 05, 2018 7:35 am

Your boyfriend needs to be strong for you. Tell him to man up. You're the one with the challenge.

An overall synopsis for you is tricky because this is an ADPKD forum as opposed to a TSC forum. I've just done some reading on TSC and I see that around 2% of people with this disease can have ADPKD (thanks Wikipedia). I am really not sure why though. When I first saw my nephrologist I got the distinct impression that I knew more about some of the characteristics of ADPKD than he did, and I think thats only because he doesn't see it nearly as often as he sees other kidney issues, let alone in combination with something else, like TSC.

So the first thing is, how do you know that you have ADPKD specifically as opposed to cysts on the kidneys due to the TSC? i didnt think that someone other than a PKD gene mutation could cause PKD, so this is new territory for me :P Anyway, with ADPKD you usually have kidney cysts as well as enlarged kidneys. Are your kidneys enlarged? I think that you need to be 100% certain on the difference between TSC alone and TSC with ADPKD.

Drinking liquid is supposed to keep you hydrated, and suppress a chemical called vasopressin, which is released by your body as an antidiuretic when you are not hydrayted. Caffeine in itself doesnt have enough evidence to support the theory that it makes ADPKD worse / cysts grow, however, coffee is a diuretic, which could stimulate the production of vasopressin if you are dehydrated. I'm not a Doctor but this is how I understand it - someone please jump in here if I'm wrong. So for me, I decreased my coffee intake somewhat, and I have decaf, but I still have a couple cups of the good stuff in the morning, in conjunction with ensuring that I stay hydrated and drink water. I haven't managed to hit 3l a day - I do about 1l of pure water throughout the day, in conjunction with all the other intakes I have - tea, juice, decaf etc.

I cant understand why people would be motivating for a kidney transplant for you if your labs are normal. That seems very premature and if things are going normally for you, at least with PKD, you shouldnt need to worry about ESRD for a while to come. It's dissapointing but my experience has been that some Doctors are really hit and miss. You have to find someone who you are comfortable with and who you can trust to have your best interests at heart!! Hope this helps!

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