A WG decision...

[Dirty Don]

A while back I spoke of an acquaintanceship has been diagnosed with WG. It appears, at 72 years old, his eyes, lungs, & kidneys have all been involved to varying degrees. He is noe on rtx infusions, high pred, as well as the usual complement of 'balancing' drugs. As of last nite he was also informed that he has had 2 mild heart attacks, and double blockages of at least 70 percent. Seems bad enough, right? Well, here's the deal: WG doc wants to apply blood thinners and put off the heart surgery (no stents) for 2 months. the heart surgeon says NEXT week for heart surgery.

I probably won't be speaking with him, but do have access thru a friend. Any commentary, advice? I mean I'd do the heart thing and restart the rtx treatments in my own mind, but I know very little about this kind of involvement...

[pberggren1]

Does he have a true Wegs doc or Wegs team?

[me2]

The heart guy may not have a great idea of the risks involved with someone so ill. How many wg patient heart surgeries has he done? It sounds like quite a complicated situation. In my experience when in doubt I rely on my Rheumy to guide the team.

[Col 23]

A third opinion required maybe, but given the overall situation I'm with Phil on this one. This should be guided by his Rheumy and a team discussion. I usually find that the Rheumy refers to other specialist and is guided by their advice so this is a difficult decision and I see the dilemma. I suggest he should organize a meeting with both specialists together and get the pros and cons. Huge decision. Wishing him all the best.
Col 23

[Fran]

Hi DD

I have not posted here since last July when I had a heart problem. The Cardiologist wanted to do a bypass but my Rheumy argued I was not up to it, with having WG for 15 years and being of a similar age to the gentleman you mentioned, and similar organs affected. It was decided that the Cardio would attempt to use stents on the diseased arteries, as the choice was, either go for that, or put up with the pain and wait for the heart attack !
I am now doing quite well and attending Cardiac Rehabilitation - I am not so breathless as before ( I didn't really believe him when he said I would breath better) but fatigue is still my enduring complaint ( like everyone with WG !!).
Hope this is of some help - please pm me if I can give any further info.

Fran

[mishb]

Wow Fran,

I'm glad the stents were done.......sure beats the alternative.

Does this now mean the arteries are okay, or will you still need a bypass done the track?

[Fran]

Thanks Michelle, Just keeping my fingers crossed and enjoying each day - not over-thinking too much

Fran

[drz]

Thanks Michelle, Just keeping my fingers crossed and enjoying each day - not over-thinking too much

Fran

Good plan for all of us, if we keep dwelling on the negative possibilities we don't enjoy whatever time we do have left which is unknown for everyone

[Dirty Don]

Does he have a true Wegs doc or Wegs team?

A 'team' as far as I know...OHSU specializes in hearts & kids, but has a great general rep. His 'eye' doc who discovered the WG seems to be in charge.

[Dirty Don]

The heart guy may not have a great idea of the risks involved with someone so ill. How many wg patient heart surgeries has he done? It sounds like quite a complicated situation. In my experience when in doubt I rely on my Rheumy to guide the team.

Makes sense, but he has no rheumy to guide an organized team...the eye doc from Casey Eye Institute at OHSU seems to be running the WG show.