Re: Questions to ask at Dr. Visit

[Guest guest]

Hi, Sherry,

Thanks for the positive thoughts. I just need to be ready with the questions about my particular case. I know every case is so different, but maybe someone has some question in mind that I might need to ask.

If anybody knows, is it often that pulmonary hypertention is dx early on? Do the doctors always push for a biopsy right away, and is a biopsy absolutely necessary to confirm dx? Is there anything I need to be aware of with a biopsy that the doctor's didn't mention? When starting Cellcept or Imuran, I know many people are also on Prednisone at the same time. Since I am still on what is considered a high dose of 40mgs, I'm wondering if this is too much to start me on one of the other drugs,or if I'd have to taper some more. Knowing we have no doctors here, but wanting to know what your experience might have been, if you don't mind. I also have these huge sweats day and night. Does anyone else take female hormones (not you, Jack!) or have this problem on prednisone? It is one of the side effects of that drug. Has any doctor told any of you (women) that hormone replacement would interfere with other drug

therapy? I am also needing to gain weight.....don't get jealous or think I'm bragging! I am skin and bones and very unhealthy looking. Six months ago I was probably 20 pounds overweight. Any tips on gaining weight with healthy food would be appreciated. I have not gained weight on prednisone yet. Does that usually take place during a taper?? I have watched salt and sugar, so maybe I'm doing something right.

Hopefully, many of you are busy enjoying your weekend! I need to go have some fun now, but will be looking for a few answers here later.

Thanks!!

Subject: Re: Hello, all!To: Breathe-Support Date: Saturday, June 14, 2008, 7:53 AM

Hi ,Glad to hear from you again. I hope your appointment with Dr. Glazier at UTSW in Dallas on Tuesday goes well. He wasn't with that group when I was a patient between 1999 & Dec 2002. Hope you like him. I'll be thinking positive thoughts on Tuesday for you.Gwynne, sorry about spelling your name incorrectly - over and over and over. When will I ever learn?Sherry 64, NSIP Nov '98, Bronchiectasis, PBC, PAH, Oral licen planus> > From: Sherry sherryjohnson16@ ...> Subject: Gynne's Update> To: Breathe-Support@ yahoogroups. com> Date: Friday, June 13, 2008, 6:58 AM> > > > > > > > > Oh, how great to hear that Gynne is getting to travel! & nbsp; Nice to hear how she is doing also. & nbsp; I'm a person that may have to consider a transplant, and love to keep tract of her input. & nbsp; Again, Thanks, Gynne for being so loyal to the rest of us.> & nbsp;> You gave me a great idea about using thin gloves for driving. & nbsp; I've had a pre-cancerous spot removed from one of my hands already. & nbsp; I

try to use sunscreen, but I also use hand santizer all the time, so most of it gets removed. & nbsp; Gloves are a much better answer. & nbsp; Thanks! & nbsp; This is what we learn from each other on this board, how to LIVE with this terrible disease.> & nbsp;> I also like how you use one e-mail to respond to many people, Gynne. & nbsp; I seem to have many responses, but hate to do one-at-a time e-mails.> & nbsp;> Gynne, I am the person who e-mailed you who also had Dr. Rosenblatt as a doctor in the past. & nbsp; I hope that group is being good to you as you recover!!> & nbsp;> Sherry , Age 64> NSIP 11'98 via Open Lung Biopsy, Bronchiectasis, PBC (liver autoimmune disease), PAH 2008, Oral Lichen Planus>