Hello From Portland, OR area

VintageVera

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« 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.


« Last Edit: October 25, 2010, 12:43:00 PM by VintageVera »	Logged

cloud393

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Re: Hello From Portland, OR area

« Reply #1 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.


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May you live as long as you want and never want as long as you live.

peleroja

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Re: Hello From Portland, OR area

« Reply #2 on: October 25, 2010, 12:21:43 PM »

Welcome to the group. Lots of good information and friends here. Glad you joined!


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tyefly

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This will be me...... Next spring.... I earned it.

Re: Hello From Portland, OR area

« Reply #3 on: October 25, 2010, 12:25:49 PM »

Hello Back from Portland Oregon....... Gods country.... .nice to have someone from here too....

Welcome.....


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IgA Nephropathy April 2009
CKD May 2009
AV Fistula June 2009
In-Center Dialysis Sept 2009
Nxstage Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir

Babolat

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Re: Hello From Portland, OR area

« Reply #4 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.


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galvo

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Re: Hello From Portland, OR area

« Reply #5 on: October 25, 2010, 09:07:35 PM »

G'day VintageVera and


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Galvo

Bajanne

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Re: Hello From Portland, OR area

« Reply #6 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

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


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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"

I LOVE my IHD family!

Desert Dancer

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Re: Hello From Portland, OR area

« Reply #7 on: October 28, 2010, 07:33:00 AM »

Hi, VintageVera!

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?


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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.

VintageVera

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Re: Hello From Portland, OR area

« Reply #8 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