Beth

[Guest guest]

Hi Missy, Do you have any Idea when yo will head south? Leanne gets into Orlando Friday night about 7: something. So I am just wondering when you'll be here.. You can come a couple days before and stay as long as you can stand us and the tv,, lol.  I am getting excited and am going to get menus together this week.. OH COME ON DOWN.. soon as you want! :] Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Sher,I'm so glad your appointment went well and you're happy with the doctor!  It sounds like she was very thorough and that's what we all need.  Also glad you're going back on the O2, it will help!  I'm so happy you're being taken care of the way you deserve!!!Hugs and love, Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love."    Pulmonologist the way they should beI had my second appointment with my new pulmonologist today but first one that he's had all my medical records. Also, I'd gone through them in detail making a list of questions and things that had never been mentioned to me. I said to him that I knew we probably wouldn't get through it all today, but we did. We covered five pages I'd typed up of issues, questions, information. I was with him over an hour talking (I believe about an hour and 15 minutes). Now, I have no open questions, no items in my charts I don't understand. I know what I need to do about various issues and other doctors I need to see, particularly if I'm going to pursue a transplant. Also, he's making that referral today. It was amazing to leave there feeling educated. Now, I do have to go for another echo, see an ENT, see my Gastroenterologist and get another upper endoscopy, see an Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist but nothing of issue at this point there. But he listened and understood that all the things I had written about, all the previous out of range findings and CT findings that hadn't been addressed were important. So, he could tell me which ones didn't matter and which ones did. Nothing about it changes my condition nor the steadily declining PFT's, but it sure is nice to not be sitting wondering about so many things and to now be fully informed about all the previous tests done. Its sad that so many things in them had never been brought to my attention and only came up when I got copies of all my charts. Areminder to everyone. Get a copy of all reports, tests, everything. He also agreed that the sleep study I had, a split night study, was a bunch of garbage, that in no way did it show the need for a CPAP. Basically it shows nothing of any real value. It contradicted itself many times, saying they switched me from CPAP to BIPAP because CPAP didn't work for me and then recommending putting me on CPAP. They were also dumb enough to say that my oxygen prior to anything dropped to 52%. Obviously, I hit or knocked the oximeter off or something. At 52% I would have been gasping desparately for air and headed next door to ER. Only were able to do part of the PFT's but FVC went from 44% in August to 37% in October to 30% now and FEV1 went from 55% in August to 49% in October to 37% now. Nice little pattern there. Thats whatis so strange about this disease is I feel fine, still on moderate levels of oxygen, but FVC is dropping steadily and almost to transplant eligible stage. Based on trend it would be below the magic 25% next time. Although obviously I am nowhere close to the point I would want a transplant. Remaining pain in chest he says is external to lung and probably from VATS, so nothing really to do but wait. Oh well, enough medical crap for the day. Now back to fun and games. I just feel good about seeing someone who took the time to cover everything.