Re: Hello, group!

[Guest guest]

Elisa

The issues with information and conflicting doctors is horrible. I can

see UTSW being very difficult to use as a primary pulmonologist. Just

getting through their tangled switchboard to the right persons and

finding the right persons is hard. I'm going there tomorrow to their PH

specialist. I personally like having a local pulmonologist plus getting

diagnosis from a teaching hospital but part of that is I've found good

local pulmonologists and rheumatologists. Of course, several are

recently moved from UTSW to private.

I would tell them I wasn't happy and wanted an appointment soon for

further face to face discussion on top of the phone call if it comes.

>

> I have not been posting regularly for many months, but read mail

> daily. I know most everyone's story and am a regular on Facebook,

> where I talk with many here regularly. I was diagnosed with multi-

> connected tissue disorder and Sjogren's in April of 2008. I was also

> told I had pulmonary fibrosis. My story has the same kind of issues

> many of the newbies have experienced; bad doctors, incorrect

> diagnoses, high doses of prednisone, and raw fear!! Fortunately, I

> was able to work last year as a teacher, and had a great year,

> missing only three days with illness.

>

> I have been going to UT Southwestern in Dallas since last July.

> Having fired the first pulmodude, I blindly called and got an appt.

> with a doctor who specialized in PF. This has worked out pretty

> good. He kind of scoffed at my use of a pulse oximeter, and told me

> they had a new procedure called a six-minute walk several months

> ago! He does spend huge amounts of time with me, will give me

> antibiotics over the phone at the first hint of an infection, and

> covers the CT scans slide by slide to explain what he sees. In Nov.

> '08, he told me I had improved with the prednisone and Imuran and

> said I had LIP, which carries a little better outlook. The problem is

> that lately, over the past four months, I have been coughing....a

> lot. Seeing my rheumatologist in the spring, she said to keep

> tapering on the prednisone even though I was coughing. I'm beginning

> to think she is worthless. I got down to 2 mgs and called the pulmo.

> He upped me to 5mgs. I initially started out on 150 mgs of Imuran

> last year, but got a stomach problem, so was dropped to 100 mgs. I

> have remained there I made an appointment two weeks ago with pulmo

> to have something done NOW! The PFTs were a joke because I couldn't

> quit coughing. He put me on Nexium and told me to use a sinus rinse,

> thoroughly questioned me about when I coughed and what triggered a

> spell. I rarely have been SOB and sats are always in 90s, even

> during 6-minute walk. He once again upped my dosages of Imuran to

> 150mgs and Prednisone to 10mgs. He did a HRCT two weeks ago. When I

> was going through airport security in Florida last Friday, his nurse

> called to tell me I had progressed in the disease. She said that it

> was now considered Pulmonary fibrosis (?), to keep taking my meds,

> and they would see me in three months at my regular appt!!!! I told

> her that wasn't going to cut it and I needed specifics on everything!

> She said to call back Monday. In the meantime, my precious litle pet

> died in my bed early Saturday morning. The weekend was hell. So, I

> called to find out what the specifics were on Monday. I had my list

> of questions ready. At 3:30, a nurse with another doctor called to

> tell me some info, but she didn't know squat! She said my doctor and

> his nurse was unavailable. I told her I was very upset with this and

> needed to hear from the doctor. Yesterday, at 5:00, she called

> again! She said that I would be getting the report in the mail (my

> request), and that I could call with " specific questions " on Friday

> to ask the doctor!! This is just not right! So, I know that I have

> " definitely " progressed, but WHY and HOW, and WHERE are unknowns.

> I'm thinking the rheumy dropped the ball by not keeping up the

> prednisone, but then I was begging her to get off it at the same

> time. Should she have put me back on the target dose of Imuran again

> way before now? UTSW is a teaching hospital with specialists in PF,

> but this seems so totally unprofessional how this recent episode has

> been handled. I also go to the rheumy tomorrow, feeling that it's

> probably just a waste of time except for the bloodwork.

>

> Does anyone have any sage advice or wisdom to offer? I am

> emotionally drained and trying to just take care of myself. I had a

> great time in Florida with my friends last week and loved meeting

> Peggy!! The humidity did get to me and I had some SOB episodes.

> Sweet Peggy brought me some O2 that I used while there. I'll put the

> picture of us in another post.

>

> Elisa Cole

> age 53 dx Sjogren " s, Raynaud's, (NSIP, LIP, PF) Apr. '08

> Mansfield, Texas

>