New from Oregon

[darl-p]

I am happy to have found this site. It is good to hear from others that are experiencing similar situations to mine. It appears that there is more good information available from the postings here than some of the medical professionals have.


I was diagnosed in June 2008. This diagnosis came after I had bugged my primary doc that something was going on with my body. Her response was “you need to remember that you are almost 70 yrs old”. I pushed for some blood tests and then things started happening once a nephrologists got the results. The damage had been done to the kidneys but they were able to control and then reverse the situation.

It has been a long road and I find that most of the progress has been due to my urging. The bottom line is that we need to be very vigilant and become our own best advocate.

[annekat]

Welcome, darl-p! I am in Olympia, WA and lived in Portland for 8 years as a kid, from about 1961-1969. I know exactly what you mean about getting more knowledge from this site than from any medical professionals. Even the really good ones will only be seeing you for a limited amount of time, while this forum is here 24/7 and full of information in the current posts as well as in the archives.

You may have a good doctor, or team of doctors, in Portland. I hope so. You may know about the new vasculitis center that is opening, or has opened, at OHSU. That will be the first one in the Pacific Northwest, although there are some good rheumatologists available in Seattle and vicinity, I've heard. I'm getting by with someone who is not a WG or vasculitis specialist. Anyway, I recently heard about this new center, and started a thread on it entitled "New vasculitis center in Pacific Northwest" or something like that. It shouldn't be hard to find, as it was within the last week or so.

If you have any info on or experience with this new vasculitis center in Portland, we would be glad to hear about it! If you do, you could add to the existing thread that I just mentioned.

Other than that, I hope we continue to hear from you in general and that you will join in the discussions. And thanks for the important reminder that we need to be our own best advocate. I'm glad your kidney issues were reversed.

[renidrag]

Welcome dari-p, you are absolutely correct when you say there is more knowledge here than anywhere else. My pcp also told me "we'll you've never been fifty before". Seven years later I was diagnosed. Lots of good people here, hope to hear the long version of your story. Fired pcp by the way small letters intentional.
Dale

[windchime]

Welcome to the site as you have found there is a wealth of information available here. There are also warm and supportive people here from around the world. Sorry you had to find us, but glad you did. Feel free to ask questions, share info, vent or comment. We're happy to have you here.

[darl-p]

Annakat,

Thanks for the info on OHSU. I am a Kaiser subscriber and they are very responsive to my needs. My PCP spends so much time with me when I go to her that her nurse wants to know what we have going. Since OHSU and Kaiser work together I will check on an opportunity to visit their Vasculitus clinic. Thanks for the heads-up.

[Alysia]

welcome Darl-p,
I am about the same "wg-age" as you, my acute onset was in sep 2008. but wg was smoldering for years before. what meds are you taking ? what are you suffering from now ?

[Dirty Don]

Welcome Dari-p, seems we are gathering a lot of NW peeps on here...I knew it was the darn rain!! LMAO! Sorry, class clown here...anyway, I am from Portland also, grew up in St. Johns...don't say it! LOL! Please ask any and all questions you may have on here. I know Kaiser is great in Portland, and they do consult with others well when they have to do so. Be careful tho as Kaiser is a 'closed' system like many of the other hospital systems, but they are better about reaching out (one thing Mayo is a pain about is communicating with docs outside their own system), just make sure they do communicate with those whom you want them to know. Continue to be vigilant and demanding as your journey continues. Best to you.

[mishb]

Hi darl and welcome. We are glad you have finally found us .......what took you so long

Happy to hear that the kidneys are doing well - I look forward to hearing about any other WG symptoms that lead you to tell your doctor that you believed something was going on.
It is so true, that we know what is going on inside our bodies.....and you can feel it.

I have days where I don't take my bp tablets because I feel my bp is too low. I then take a reading and it is too low.
My doctor doesn't believe that I can feel what my actual bp is on any given day........but I know

[ingemlb]

Welcome Dari-p. Must have been hard doing it solo for so long. I am glad I found this forum almost the day I was diagnosed as I think I would have gone totally nuts without the support here

[darl-p]

Michelle,
I may have overstated my kidney situation. They are not doing well, only better. At the onset my GFR was 24. The normal for my age is 60 and dialysis starts at 15. Currently it is 45 and has been up as high as 55.
A recent symptom that had me in discussion with my PCP was due to an intermittent pain in my right chest. It appeared to not be muscular but rather internal. She ordered an x-ray which did not show anything significant. I was sent to a pulmonologist who ordered a CT scan and also a pulmonology function test. The CT revealed the start of pulmonary fibrosis with a small nodule. Both of these can be caused by Wegener’s. The pulmonologist then referred me to a gastroenologist who thought the symptom might be from a small stomach ulcer caused by years of prednisone.

Since I have a high tolerance for pain, the original pain would not have been a concern if not for the Wegener’s. The lungs had been a concern since the beginning of this journey but the kidneys took over as a priority concern. I am sure that none of these recent finding would have surfaced on their own until it was a major problem. And I am not a hypochondriac but I do stay tuned to my body's signals. "If something seems wrong, it probably is".