Long shot.... but does anyone here have a Kidney disease?

[starryfish]

I usually post on MM and used to on HF and SO but I thought I would get a bigger audience here.

I was just diagnosed with a rare kidney disease and was wondering if anyone else had one too? You can PM me if you are more comfortable (will probably DD this thread later for privacy reasons).

[Pom]

I am so sorry, Starry. Are there support groups or resources your doctors might suggest?

A quick google, turned up a Davita one. I recognized the name since this is a local dialysis company to us.

www.davita.com/kidney-disease/overview/living-with-ckd/support-groups-for-people-living-with-kidney-disease/e/4926

I'll be thinking of you.

[starryfish]

Thanks. I got the results over the phone Monday and have my appointment tomorrow to learn more. It is a pretty rare disease (and not common in females), so not sure how many people here have it in the area. Luckily I am not at the dialysis phase yet.

I am just too young for this :-(

[Pom]

Jul 29, 2015 10:54:12 GMT -5 starryfish said:

Thanks. I got the results over the phone Monday and have my appointment tomorrow to learn more. It is a pretty rare disease (and not common in females), so not sure how many people here have it in the area. Luckily I am not at the dialysis phase yet.

I am just too young for this

(hug) (hug2)

[littlesthobo]

I have polycystic kidney disease.
I'm sorry. I remember how awful it was when I was diagnosed. Like my own body had betrayed me .
Feel free to pm if you'd like.

[starryfish]

I am not familiar with that one.

I will PM you thanks

[liverandonions]

I am so sorry and hope you find a good resource/support group. I have liver disease and found that having information was the best thing for me.

[starryfish]

Jul 29, 2015 11:12:16 GMT -5 mofongo said:

Jul 29, 2015 11:02:27 GMT -5 starryfish said:

I am not familiar with that one.

I will PM you thanks

I don't have kidney disease, but I work with patients who do. What do you have? There are generally a lot of treatment options.

IGA nephropathy or Berger's Disease.

[ECB]

Jul 29, 2015 11:00:56 GMT -5 littlesthobo said:

I have polycystic kidney disease.

DH has this too, which he got from his mom.

OP- while it's not me directly, if I can help you out at all, please let me know.

[starryfish]

Jul 29, 2015 11:21:20 GMT -5 mofongo said:

Jul 29, 2015 11:13:54 GMT -5 starryfish said:

IGA nephropathy or Berger's Disease.

I'm sorry:( The good thing is the doctors can follow you very closely and hopefully keep everything stabilized. I hope you have a good appointment tomorrow:)

Thanks. I know there is no cure and the treatments don't have a lot of data. I know I have a more severe case but I find out how severe tomorrow.

I already have a second opinion scheduled as well by another doctor to make sure they agree on treatment

[starryfish]

Bumping this up :-)

[kimibrighteyes]

I'm sorry you are going through this. Hopefully yours will not progress quickly. It is actually not rare though - you may be able to find a support group if you are interested. Good luck

[Vespasia]

I don't have kidney disease myself but I work in a related field. Take a look at Nephcure. They're a patient advocacy and fundraising group for nephrotic syndrome (which i believe you fall under) that also links to research studies. Nephcure also does regional lunch and learns, and support group/meet ups.

[starryfish]

Jul 29, 2015 13:38:23 GMT -5 kimibrighteyes said:

I'm sorry you are going through this. Hopefully yours will not progress quickly. It is actually not rare though - you may be able to find a support group if you are interested. Good luck

I know it can affect more people, but they are different sub types and mine is more severe. I find out tomorrow how severe it is.

Thanks