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View Full Version : Wegeners sometimes opens doors



BookNut
07-15-2014, 11:09 AM
Some of you may know that I am planning to go to the Cleveland Clinic. My "asthma like" illness is getting steadily worse, and I feel i need to make one more attempt to get it under control. I asked you guys for some recommendations for a doctor and got several good suggestions.

What turned out to be interesting is this.... When I was referred to my current pulmy, I was told by his staff that he only takes very critical cases, and so they would schedule me with someone else. Since i had been diagnosed with Wegeners at the time, I simply said that I preferred staying with the doctor who had been recommended, and that he might be interested in my Wegeners daignosis. that did it. i was scheduled immediatly. Now he is stuck with me! Not that I am any better for it. Oh well.

So....I got pretty much the same same song and dance when I called David Culver's office. He only sees people with certain diseases. I told the scheduler that I really wanted to stick with the recommendation that came to me via the Wegener's Forum. I don't think the scheduler was pleased when I indicated that Wegeners had been ruled out...but he went ahead to get me an appointment anyway. He said i should hear in a day or two, but it looks like it will be mid August while we are visiting our daughter who lives an hour or so away from the clinic. Yay! And if this doctor should not work out for some reason, I still have one of two other names to try.

So...as always...thank you all SO much!! I'll bet you did not realize how influential the name of Wegeners or GPA is! :thumbsup:

annekat
07-15-2014, 12:34 PM
Docs who know Wegs should understand that having it ruled out isn't always conclusive. But more than that, a pulmy who knows you have something very troubling and mysterious, involving your ability to breathe, should see that as critical and needing some expertise to deal with. I guess Wegs is one of the diseases he sees, and I'm glad you mentioned it and can get in to see him.... who knows where it might lead.

Debbie C
07-15-2014, 02:16 PM
Good for you Jacquie on getting those appts. What kind of dr is David Culver ?? Are you planning on seeing an ent while you are there ? Where does your daughter live, because I live about an hr. away from the clinic ?

annekat
07-15-2014, 02:32 PM
I agree with Debra that seeing an ENT would be a good idea, too! Get a complete workup if you can! You've been dealing with this too long and need some more answers. Not to say your local docs aren't good, just some things take more experience, I guess.

So do I get it right that you'll be leaving very soon to Cleveland for the birth of your grandchild, and then will go back in August? I hope everything works out and that you get to meet Debra, too!

BookNut
07-15-2014, 02:33 PM
The doctor is a pulmonologist. Since my lungs are my biggest worry, it seemed the best way to get started. The clinic might be a little more or less than an hour, but he has hours once a week in Avon, which is a little closer. Kristin and her hubby live in Huron. She is due for her first baby this Thursday. We can't wait to go! Where do you live? It would be fun to meet somewhere if at all feasible.

I will probably just hear that I should go to an ENT. Everyone blames the lung issues on the sinus issues. But my ENT does not seem at all enthusiastic about doing surgery. He is just totally non-committal about it. I KNOW they can't make any guarantees - but he just does not project any hope that it might be efficacious. I will probably try that next though, rather than long term pred. All the pred I have been on has made me pre-diabetic now - in spite of my virtually sugar free existence.

But the shortness of breath is just limiting me so much - I am fed up with it. I just put a few dishes in the dish washer and wiped down the counter and stove tonight. Before I was done, I had to hold onto the counter to support myself, and then sit down and gasp for 5 minutes. This after three days on prednisone, which used to kick right in, and using my nebulizer with albuterol three times during the day. I used to be off the neb completely by the third day of a 40mg pred taper.

Oh well - hopefully this new guy will have some ideas for me. I think I need to have more breathing tests and scans. It has been over a year now since the last ones were done. I think my pulmonologist sees people much worse than I am. When I had the tests before, I did the lung capacity test first and then was taken for a walk around the hospital floor for five minutes and given the test again. My lung capacity was pretty good at that time. I'll bet it isn't now!

thanks for asking!

BookNut
07-15-2014, 02:43 PM
Hi Anne! Yes - the baby is due on Thursday...but you never know just exactly when of course. We are planning to take the trip as soon as we hear. We are thinking of a lot of different options. It will all depend on what Kristin and Mark need - and when I get the appt. Kristin has practically no experience with babies. I have made sure she knows that she can kick us out whenever. We plan to do the housework and let the new family bond. My husband will spend a good amount of time fishing. So this will be our vacation this year.

It sure would be great if Debra and I could get together. Though she will have to put up with my husband too - since I can't imagine him letting me drive in unfamiliar territory by myself!!

annekat
07-15-2014, 03:35 PM
I get you about the lungs vs. sinuses issues. Sometimes when coughing up mucus I sound so bad that people must think I have emphysema or terrible bronchitis or something. When it is probably all coming from my sinuses. But sometimes I wonder. It is all connected, and ENTs and pulmonologists should be working together and not just trying to pass people off on each other. Maybe an ENT at CC would have a different opinion about sinus surgery for you. If the surgery would help, that would sure be nice. As you say, it wouldn't be a guarantee, but you might reach the point of wanting to try it anyway. What you describe about getting around your kitchen sounds pretty miserable, and to me, scary. And the pred thing, with the pre-diabetes, yeah, you want to get off of that. Good luck with it all!