Cindy...it all sounds great!!! I am glad you had some fun as well as productive doctor visits. No longer have a WG diagnosis? Don't despair. These guys will support your medical journey no matter what!! So glad to hear the news!!
Cindy...it all sounds great!!! I am glad you had some fun as well as productive doctor visits. No longer have a WG diagnosis? Don't despair. These guys will support your medical journey no matter what!! So glad to hear the news!!
Jacquie (aka Lifelong Booknut)
Updated status: "Honorary Weggie"
US News and World report ranked the Pulmonary department in Rochester Mayo as number one in the nation. I am guessing your Dr. Peirkert was the one in this department too. They ranked number one in nation in about half of their specialties for adult care and number two in three other areas with number 7 being their lowest ranking.
I don't know how much weight one should give to such rankings though. I feel i got some very poor service though from one of their departments ranked number one in nation. These ranking might also be like rankings for sports teams or cars where there might be little difference in the top candidates but one should generally expect you would get excellent care there which is why people do come there from all over the world.
Knowledge is power! Wisdom is using it to make good decisions!
In this case Mayo, Rochester has the surgeons experienced in this disease and I doubt they have operated on all that many. From what I understand the calcification's are literally "like a rock" and very difficult to hack through. In addition, they are impossible to "detach" from blood vessels ,which are very thin walled, and other soft tissue. collateral veins are also created in places they don't expect them to be which creates copious amounts of blood. With all that stuff going on in the chest, surgery for this disease is usually contraindicated for good reason.
As with any other organization, however, it's only as good as the people in it. I've had bad experiences at places rated excellent too and wondered how did that happen. But it happens as people do have off days, they're inexperienced and they don't want to appear to have less knowledge than you (my personal fav), or they are just decided to be pompous asses for the day. I have no option so will go there if it is warranted. Right now I'm just happy to finally have a firm diagnosis, crappy as it is. I'm also happy to be feeling half way decent even with the O2 in tow.
Things will never be normal again as with Wegs, I still have to watch my spoons. I'm very grateful that this disease waited 40 years to get worse and didn't screw up my partying days. One has to have priorities you know. Oh yeah and I'm down to 4 mg of prednisone. Whoo Hoo!!!
Cindy
Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers
Looking so forward to meeting you! I will never forget and will forever be grateful for your immediate warmth and support and opening up to me about the possible FM diagnosis when I was going through similar. While I wish you did not have this strange disease, I'm glad you have some more definite answers and that it will hopefully NOT progress more or if it does, it will be at a glacial pace so it doesn't cause any more problems than you're already dealing with. Don't give up hope that it can get better/shrink/go away! Stranger things have happened...
Just when the caterpillar thought the world was over, she became a butterfly.
- English proverb.
Me, too, on looking forward to meeting you, possibly next Saturday at the Olympia Farmers Market? I will PM you to clarify, since I screwed up the original communication we had, thinking you were talking about August when it was September.
Anne, dx'ed April 2011
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