My only son Died from WG

[Sangye]

Sue--At first I stayed with local docs because they were convenient. Over time I realized they didn't have the skill to treat the Wegs, much less all the complications I had. I started going to Mayo clinic, which was 3 hours one way. Well worth it. Now I'm in Maryland, and I go to Johns Hopkins, 1-1.5 hours away.

I really recommend going to a better facility that knows Wegs even if it means more driving. You'll get more answers (which lowers your frustration) and may avoid complications.

You just can't compare the experience and comfort level of a doctor who's only treated Wegs a few times, versus one who's seen Wegs patients day after day for years. A lot of the complications I had totally stumped my local docs. If Jack says the QE in Birmingham is good, he would know.

[crackers]

Sangye,thanks this is certainly something worth discussing with John
Sue

[Sangye]

I hope you find excellent care wherever it is.

[berylj]

im new to this site, i found this page while navigating my way round it!& just had to say how sorry i am about jbearcats story, i was lucky to have my local hosp. in cambridge where there is a vasculitis clinic,& some of the best docs in uk,so i had the best treatment available,it seems to be a case of luck in where you live,but research is ongoing & treatment will improve in time,there are scary stories about the nhs but i
have to say ive had excellent treatment under dr jayne & his team, beryj

[Sangye]

Nice to meet you! I'm glad you've had such excellent care. When/ if you want, we'd love to hear your Wegs story!

And I'm willing to bet that whatever your worst NHS story is, we in the US could top it. At least the British aren't arguing about taking care of each other!

[Doug]

berlj- Nice to have you on the forum. Yes, we'd be happy to read you story. As you note, luck of the draw, medically, seems to be the pattern we all have faced. You at Cambridge, Bruce not only in Rochester, Minnesota, but as an employee of the Mayo Clinic! You two won the lottery, in a sense. How those stories come out are of interest, too!

[Jack]

it seems to be a case of luck in where you live

Very true!
I have two major hospitals within easy reach of my home, one of which runs a center for vasculitis research. Before being diagnosed, I had the misfortune to be attending the one that does not. Instead, I went to the hospital with the larger ENT unit. I wonder how things might have turned out had I chosen differently.

[Doug]

Very true!
I have two major hospitals within easy reach of my home, one of which runs a center for vasculitis research. Before being diagnosed, I had the misfortune to be attending the one that does not. Instead, I went to the hospital with the larger ENT unit. I wonder how things might have turned out had I chosen differently.

It's an interesting "what if", isn't it? On the other hand, it gives weight to your remarks to new weggies about the importance of actively seeking out specialists with expertise. It's a hard call.

When I tell people I feel I was very lucky when I came down with WG, because of the doctors and nurses involved in my care, I often get a "But you almost died!" response, with a shock-filled tinge of horror in their voices that I'd characterize myself as fortunate, lucky. "But I lived, didn't I!" Not all people regard that as a positive, but they are wussies who've never experienced a threat to life! Ha!

[Sangye]

I agree with you, Doug. We already had Wegs, so at least we were lucky to have it diagnosed properly.

I just had a major stroke of luck last night that most people wouldn't understand. The past few days my lungs started feeling congested, getting harder to breathe, and I began coughing up small but bright red blood. My spine was also really out of whack. So yesterday morning I took 5 mg pred and went to my chiropractor to get adjusted. In working on me, he corrected some breathing issues so I was breathing much better by the time I left. My plan was to go to the ER in the afternoon if the blood continued. It stopped. Then late last night, I took a bad fall on my kitchen floor and landed straight on my already severely damaged knee. It's excruciating, and the only thing keeping it from being worse is that 5 mg pred I took! Today I'll be at JHU anyway, so can go to the ER for lungs, knee or whatever else, if I need to. No coughing or blood at all today. Cool huh?

[Jack]

Oh the joys of Wegener's!

Hope your run of bad luck ends soon Sangye.