Was Diagnosed at age 20 with PKD I’m 53 now

[bonneville]

Hello members, my GFR is at 23

The cysts are going up my liver and Pancrease, it’s a hit and miss with pain, doctors don’t seem to get it what it’s like. I have few family members who are willing to donate kidney when time comes, problem is I’m 0 negative and doners are positive. I really don’t want to be on Dylisis that thought scares me. I feel like all others on this site, feel alone with this. Thanks for reading ❤️

[Mgt8]

Hi

You do have options if you have a donor of an incompatible type. Try this link..

kidney.org/transplantation/...

I hear, living donors are a better option if you want to avoid dialysis.

It's often difficult for others to understand exactly what someone else is going through. Lots of people on here are in a similar position and are going through similar things. So do share and do read past posts. It really helped me to deal with the symptoms.

Best wishes

Mgt

[bonneville in reply to Mgt8]

Thank you for the reply, yes just started reading all these posts, not so alone now, very helpful 😊

[JoanneManning]

Hi! I understand that feeling of being alone with this disease. I am the only one in my family with it....my son won't get tested ( not sure why?) I don't understand a lot of this but the only thing you can do is stay positive and get a GOOD NEPHROLOGIST!! I keep thinking they mixed up my MRI with someone else.....in 2016 I had an ultrasound with a report of no kidney cysts and now I am "loaded" ?? I am 59...as for the pain I don't have pain just low level discomfort that is with me all the time....please stay in contact and let us know how you are doing.

[bonneville in reply to JoanneManning]

Yes I too am the only one in family who has this, none of my siblings or parents have it, I have 3 children and my oldest has it 😢

[Mew79 in reply to bonneville]

I'm also the only one knowingly in my family that has this disease was diagnosed at 25 now I'm 57 starting to have alot of lower back pain. And I'm grateful that I found this site is very helpful..

[bonneville in reply to Mew79]

Yes I’m thankful for this site as well, I’ve learnt a lot

[scott123 in reply to JoanneManning]

One possible reason for not being tested is insurance, if you are diagnosed with it then it could be a factor

[PeterChao]

Hi Bonneville,

I’m 47 just received a kidney January of this year from my mom, who is 72.I was diagnosed around the age of 24, my transplant was preemptive, since there was a match. My GFR was around 16. My only symptoms were high blood pressure and high potassium.

We decided to go with the preemptive transplant to avoid dialysis and because my mom was in great condition. I am lucky we were both O positive. But I also had the option of being part of a donor exchange program. If you have a donor that is willing to transplant to someone else you could be added to an exchange program, here’s more info

uclahealth.org/transplants/...

You are not alone and your friends and family that are willing to donate are living angels, sounds like you have a great support system.

Don’t hesitate to reach out if you have more questions. Good luck.

Peter

[bonneville in reply to PeterChao]

That’s great to hear, and you and your mom came through great from transplant? Thanks for the assuring words 😊

[PeterChao in reply to bonneville]

Yes, my mom and I are doing well!

[bonneville in reply to PeterChao]

That’s great, glad to hear, PTL

[CA_Coast]

I hope life has improved for you. Just to know the positive/negative factor does not make a difference.

[bonneville in reply to CA_Coast]

My GFR is down to 14 now, still not on dialysis, feel crappy almost every day, just started the process of transplant now, still have to do tests etc, I do have almost 400 shares on my fb page for a donor, at least they who ever wants can start filling out the long question forms they send out, and fingers crossed that I’m even a candidate for transplant, don’t know that yet, here’s hoping all the tests will be good and I’m cleared 😳

[Wmspl]

I am also only one in the family who has PKD & out of 3 sons, the middle one has it.

I have cyst's in both kidney and liver

[CRbe]

I am also newly diagnosed and on an acceptance journey, just been rescanned to check the size of my cysts. I do agree it is a lonely disease

[bonneville in reply to CRbe]

sorry to hear this 😔 I wrote this 4 years ago, since then I was on dialysis for almost 2 years,, GFR was 6, my niece passed all tests to donate, but she wasn’t a match so we were entered in the paired exchange program in Feb 05 last year, they found us a match in 7 days, transplanted and double nephrectomy May 12 2022 😊💕 all the best to you xxx