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 :thumbup:

Fran

[drz]

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

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.

[annekat]

Sorry I can't help, Don, but best wishes to your friend in determining the right course of action, and for his recovery from whatever is done. And Fran, you are in my thoughts, too.... your attitude sounds like what we should all aspire to.

[Dirty Don]

Well, all your nice responses made me even more curious: turns out that the 'eye' doc specializes in uveitis and is also a rheumy. Doesn't make it a 'team', but sounds like he's in better hands than originally related to me.

[Barry]

Don't know if this will help but, I had a triple bypass and a diagnosis later for WG. Truth be told if my wegs flare had been diagnosed first and treated I probably would not have needed the bypass. i am sure this is the rheumy's perpective. However, we all know remission takes time and his heart condition may be serious enough that the cardiologist doesn't want to risk it because if the heart is damaged more now remission might be a moot point. Getting these doc's to communicate and come to a concensus sometimes is a miracle in and of itself. Good luck.

[Tom]

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...Im not able to advise but last year I had a complete heart exam, the whole she-bang! I was told befoe the angogram that if he found a blockage that he may not be able to stent it unless it is a small blockage. Any larger blockages or more than one small blockage ,he would have to consult with the rest of my wegs team. He did say that he didnt feel that because of my copd that I would not be a candidate for open heart surgey if needed, much less a heart transplant. He referenced the wegeners but he is working with the Pulmo. nephro and Reumy. Fortuanately he found only a weak left ventrical and believes the wegs has caused that. That said, I wonder if its possible the Dr wants to avoid infections or time to make preparations for a less infectious enviroment. Just a thought.

[Debbie C]

The pharmacist I go to said if you have to rely on any dr. let it be the kidney dr. because they seem to know more.Heck,I trust my pharmacist over some of my drs. But my kidney dr. is great he told me I didn't need some of the meds the Cleveland Clininc was putting me on,and thank God ..I haven't needed them. I mentioned on another thread I was seeing a general surgeon about having my hiatal hernia taken out. And he was drawing me all kinds of pictures and telling me how easy it would be and it would be an out-patient surgery and the he was going to laser part of my esphogus where I have a little of Barrett's (which he said I didn't have until I showed him my report and pictures !!..but something just wasn't right to me about him so I went to get a second opion and this surgeon said it is not like any hernia surgery,it is very tricky and he would not do it and would not recommend any dr. in these city do it ! He also said he wouldn't go to the Dr. I first saw or send any of his relatives there. That I should go to UPMC hosital and I would probably be in for at least 2 days !!! Glad I got a second opinion. Sorry to ramble again but as far as the fellow u know I'd be worried about having another heart attack ESPESCIALLY being on all this crap.And again have him ask his kidney dr....may sound silly but they have to know the whole body !!

[Tom]

Not sure about the rule of thumb on who makes all the decisions. But I too have my nephroligist/internist making the calls for my team of Drs. I was asked last year by my cardioligist who ,besides him would I trust to administer, meds or info to me, if I could just pick one. Wasnt sure what he wanted me to say as I trust them all. He told me that with all the meds I take and the Drs I see, that its best that I could pick one to over see all of it while conferring with the others as one. I picked the kidney Dr. and he said that would be his choice. So she is the one that calls the shots or will help the others in deciding a plan of treatment or change if needed.

[Sangye]

Don, assuming he's not well enough to travel to a major center one of his docs can consult with a VF Wegs doc (for free).

[Dirty Don]

Don, assuming he's not well enough to travel to a major center one of his docs can consult with a VF Wegs doc (for free).

OHSU is a good hospital/school/research center, but WG is not one of their specialties. At this point, I don't know how much or even if any consultations may have occurred. It just so happened that his opthamologist has seen WG in his eye treatments before and set him on the right path. As it is, the docs did go ahead with the heart surgery despite the rtx & pred doses...I heard it's been a rough go for him as they also found alveolar hemmoraghing...he's in trouble and he's a person who doesn't get it...guess he's still immortal. I wish the best for him, but we've got to learn to help ourselves...some people don't get that or want someone else to do it...sheesh. Thanks to all who have contributed to this thread...I do pass the info along to his lady friend...she doesn't get it either...looks around...OMG, some people...anyway...thanks to all!

[Sangye]

Oh man, heart surgery with hemorrhaging lungs. Very, very bad. I hope he defies the odds and does well.