Jack - Rembered

[annekat]

RIP dear Heather...
Anyone know what happened to her ?

Her daughter on Facebook said they think it was her heart. She had mentioned her heart problems to me. It didn't sound too good. She had other issues, too, besides Wegeners. I think these included lupus, respiratory issues, and I don't remember what else. But she was on a lot of pain killers and on oxygen the last time I saw her. Her Wegs may have been somewhat in remission, but I'm not sure about that. It's hard to say, maybe we will find out more later.

[Alysia]

Some friends on facebook wrote that she had Bechet and not Wg.
I remember the lovely photos of you and her, Anne....
Heart breaking....

[annekat]

Some friends on facebook wrote that she had Bechet and not Wg.
I remember the lovely photos of you and her, Anne....
Heart breaking....

I saw that, too, but know from talking to her in person that she had WG. She had more than one thing, and Bechet's could have been in there, too, though I only remember her mentioning lupus and her heart problems in addition to WG. She also had some kind of severe pain in her legs that may not have been WG related.... my memory on that is foggy. I think the WG was a little more controlled currently than some of the other things, but she definitely had it. We talked about the fact that asthma inhalers didn't help her breathing because she had WG and not asthma. She even gave me an inhaler she didn't use, and was planning on giving me another one. (I'm OK on inhalers at present.)

[annekat]

I have been thinking about Heather a lot and here is the link to all of her posts. They are in reverse chronological order, so you need to scroll down to see the first one. Then you need to go to page 1 to see the rest of them. http://www.wegeners-granulomatosis.c...776&pp=&page=2 .

I have seen references on Facebook to the fact that she also had Bechet's. That is not mentioned in these posts, that I saw, but I'm having a hazy memory of her mentioning at some point that it had been added to her list of diagnoses. In fact, it may be the one that killed her, because of the heart issues... though that is only what I'm getting from posts on FB. We know that WG can involve the heart, too, but Bechet's may be a more likely culprit. I just don't know that much about it and will try to find out more.

So, here's the list of things that Heather had, that I know of: WG, lupus, RA, and Bechet's, plus maybe an existing heart condition that was aggravated by those....maybe I'm forgetting something. How unfair that such a wonderful person, or anyone, would be hit with all of those. We will never understand, but it does seem that if one is pre-disposed to autoimmune diseases, they may end up with more than one. We have seen that on here.

Just wanted to share, because Heather eventually became more involved with FB and stopped posting on the forum. The whole time she's been active on FB, she's been in and out of the hospital pretty much non-stop, and when home, has been on oxygen and strong pain killers. May her soul now fly free, with all the pain and suffering a thing of the past.

[annekat]

Thanks vdub, for putting Heather's candle up. And I'm sorry to hear what you have been going through. I'm glad you are upbeat, optimistic, and not worrying about the small spot of cancer that they probably got all of. Glad you are back on track with MTX, too, and it gives me insight as to what would likely happen if I were to go off it myself.

[mishb]

Heathers daughter said that she had Wegeners and Bechets

[annekat]

Heathers daughter said that she had Wegeners and Bechets

Here is the link to Heather's introductory thread. http://www.wegeners-granulomatosis.c...-meet-you.html
For some reason the one I posted above has stopped working, if it ever did. At the time she joined the forum, it seemed that the Wegener's dx was bothering her the most. She said her kidneys were operating at 50%, but she was put on MTX, which seems wrong to me. It should have been something stronger like CTX or RTX. She mentions an RA doc, and I don't know if that means a rheumatologist or that she had rheumatoid arthritis. In any case, she already had lupus when dx'ed with WG, and she didn't mention Behcet's, making me think that dx was added later. Her daughter also mentioned that she had fibromyalgia and several people mentioned heart problems that were aggravated by her autoimmune diseases, including Behcet's. I don't know that we will ever know the answers, but it looks to me like she needed better care all along.