I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: VintageVera on October 24, 2010, 03:09:08 PM

Title: Hello From Portland, OR area
Post by: VintageVera on October 24, 2010, 03:09:08 PM
I searched for a site to find others in my same situation and I'm happy to be here. Diagnosed with kidney failure in late March due to genetic disease that nobody seems to be able to diagnose so my 4 others cousins and I who have it call it our "family curse." Have been doing peritoneal dialysis at night on machine and that seems to be working pretty well for me as my tests all show quite well. Two of my cousins are 10-year transplant people and doing quite well so that is also my goal. Physically, I look great for my age of 53 but inside I don't feel well (on disability) and am fighting depression (even with medication). You guys here are my heroes and if you can get through this, then I can too.
Title: Re: Hello From Portland, OR area
Post by: cloud393 on October 25, 2010, 11:40:07 AM
Welcome to the site.  Portland is one place I've always wanted to visit!!  I'm sure you are suffering some depression, most of us are.  I take Zoloft and it does help most days.  Believe it or not, things will get better, just give it some more time.  I too have suffered from a genetic disease for 20 years (polycystec kidney disease) and just had a bi-lateral nephrectomy.  Now if I could just get that transplant.  I wish you well, and hope to hear more about you.   :flower;
Title: Re: Hello From Portland, OR area
Post by: peleroja on October 25, 2010, 12:21:43 PM
Welcome to the group.  Lots of good information and friends here.  Glad you joined!
Title: Re: Hello From Portland, OR area
Post by: tyefly on October 25, 2010, 12:25:49 PM
Hello  Back from Portland Oregon.......   Gods  country.... .nice to have someone from here too....
 
   Welcome.....   
Title: Re: Hello From Portland, OR area
Post by: Babolat on October 25, 2010, 01:36:18 PM
I'm in the Portland area also.  I'm sorry to hear that you were diagnosed so recently and you're already on dialysis.  I'm leaning toward PD and the cycler machine also.  I haven't started yet but it's probably coming soon, because my labs are getting worse every month.  Have you gone through the transplant evaluation at OHSU?  They seem to have a really good program there. The average wait time in the northwest seems to be shorter than in other parts of the country, so that's an advantage.

I hope you start to feel better and overcome your depression.  Please keep us posted on how you're doing.
Title: Re: Hello From Portland, OR area
Post by: galvo on October 25, 2010, 09:07:35 PM
G'day VintageVera and  :welcomesign;.
Title: Re: Hello From Portland, OR area
Post by: Bajanne on October 26, 2010, 08:26:00 PM
Welcome to our community, VintageVera!  So glad that you found us and joined us. This is the best place on the web for information, support and encouragement.  In fact, this is more than just a website - it is a genuine family  :grouphug; as you will soon find out.  You just have to keep reading and keep posting.  You can more than get through this - and we will be there with you for the long haul.



Bajanne, Moderator
Title: Re: Hello From Portland, OR area
Post by: Desert Dancer on October 28, 2010, 07:33:00 AM
Hi, VintageVera!   :welcomesign;

You're in the same spot I was in. My family has a rare inherited disease, too; nobody ever knew what to call it, so they just slapped the 'glomerulonephritis' label on it, which seems to be a catch-all diagnosis. I've got six generations of dead relatives behind me and ahead of me, and they only just discovered the disease in 2001: Familial Juvenile Hyperurecemic Nephropathy (FJHN). So I've gone from a general diagnosis to being enrolled in a genetic research study!

I'm really glad the PD is working well for you. Have you been evaluated for the transplant list yet?
Title: Re: Hello From Portland, OR area
Post by: VintageVera on November 03, 2010, 04:21:55 PM
DESERT DANCER: I'm currently chipping away at the requirements to go onto the list. Honestly, all the medical stuff I must do now is almost overwhelming. So I live moment by moment and try to count my blessings. Glad to be here! VERA 
Title: Re: Hello From Portland, OR area
Post by: Bruno on November 04, 2010, 01:42:59 AM
Best of good luck from Battling Bruno. (75 and still counting)
Welcome
Title: Re: Hello From Portland, OR area
Post by: Jean on November 05, 2010, 12:35:37 AM
Good to have you join us Vera and   :welcomesign;  to IHD.