Re: Re: Hello, group!

[Guest guest]

anything cold sends me into a fit. Sometimes people are just stupid and "There's no cure for stupid"....... Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Too funny Peggy! My favorite tech ever always offers cold water. Cold water doesn't do spit for it. I'll have to suggest the warm water. God knows we PFer's can use any break we can get from coughing. As for that mean tech lady I had I might have to cough at her just to get on her nerves I ammuse easily:) FL IPF dx 1/06 > > > > 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 > > > > >

[Guest guest]

thanks peggy

wiill try to remember warm water

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Hello, group!To: Breathe-Support Date: Wednesday, July 29, 2009, 5:18 PM

Elisa and , I just read your posts about coughing and PFT's and remembered one that I had while I had a coughing marathon

going on. The tech ask if I had tried really warm water... Do you know I was able to finnish my PFT's.. odd huh? Might try it.

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

Elisa, I'm sorry you are having a hard time with your doctor. Our disease can be quite frustrating for everyone involved. You are doing a great job at being your own advocate. Keep pushing until you get answers. Be prepared though, the answers we get are not always the answers we want. I cough through out all of my PFT's. Always have, always will. There's not a darn thing we can do to stop it. It's all part of the disease. I once had a Tech tell me if I was coughing during the test then I wasn't doing the test right and said she didn't have time to keep redoing it. I told her if she thought I was able to control my coughing she should read more about the disease and quit complaining.When you have increased coughing episodes like you described it's important to tell the doc just like you did. Just as important, the doctor should take action to find out the cause. His questioning what you thought brought on the coughing fits was a

good start. Not following through from there is certainly unacceptable. When you speak with him on Friday I hope he's able to answer your questions.Something to consider is asking your Pulmonologist and Rhuemy to communicate with one another regarding your Prednisone and Imuran dosing. These medicines relate to disease both doctors are treating you for and therfore should both be involved. I know they can have nasty side effects. I've used them but they don't work for me (it made me worse.) But, if your docs say that it's helping you and you are improving on it then it's probably best not to come off it. I hate that you've had to go through this bout of progression. It's a scary stage of the disease to go through but we are all here to get each other through it. 34 FLIPF dx 1/06>> 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> >

[Guest guest]

You know, , my two main doctors do actually copy each other information. I think Pulmo dr. just wanted to take charge, sensing that rhuematologist had let something slip through the cracks. I am visiting rheumatologist for the last time tomorrow. I should have quit her during the swine flu epidemic when she closely held a mask to her face and would not get near me. When I had bloodwork that day, the lab lady told me they had one confirmed case that day as well as another strain of flu. I'm the one with the compromised immune system, and they should have called me to cancel the appt!! Thank you for letting me vent! It's ridiculous how many times all of us have to get new doctors.

Subject: Re: Hello, group!To: Breathe-Support Date: Wednesday, July 29, 2009, 4:46 PM

Too funny Peggy! My favorite tech ever always offers cold water. Cold water doesn't do spit for it. I'll have to suggest the warm water. God knows we PFer's can use any break we can get from coughing. As for that mean tech lady I had I might have to cough at her just to get on her nerves I ammuse easily:) FLIPF dx 1/06> >> > 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> >> >>