Re: Bruce, regarding doctors

[Guest guest]

Bruce, is this your first visit with the PH specialist? Is that a new diagnosis for you?

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Hello, group!To: Breathe-Support@ yahoogroups. comDate: Wednesday, July 29, 2009, 4:56 PM

ElisaThe issues with information and conflicting doctors is horrible. I cansee UTSW being very difficult to use as a primary pulmonologist. Justgetting through their tangled switchboard to the right persons andfinding the right persons is hard. I'm going there tomorrow to their PHspecialist. I personally like having a local pulmonologist plus gettingdiagnosis from a teaching hospital but part of that is I've found goodlocal pulmonologists and rheumatologists. Of course, several arerecently moved from UTSW to private.I would tell them I wasn't happy and wanted an appointment soon forfurther 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>

[Guest guest]

Elisa

I don't know of a way outside of calling. Now, I know I hesitated

calling too and, yet, you wouldn't hesitate to ask a mechanic if he

could work on your brand of car. Any doctor who has a problem being

asked how many patients he's had with PF I wouldn't want anyway. I

remember before my VATS, I asked the surgeon specifically how many VATS

he had performed and how many problems. I didn't care about all his

heart surgery or anything else. He told me. He had performed over 100

and he had one with serious complications and that patient died. That

was a few years earlier and he realized now that she wasn't someone it

should have been performed on and today he wouldn't.

> >

> > 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]

Elisa

Not really a diagnosis or new. Sort of a situation where my pulmonary

pressure on my echo was somewhat high and noted as mild pulmonary

hypertension. Now, understand, those reading echos are going to not

every possibility. So, talking to my pulmonologist we talked about maybe

getting a cardiologist and getting a right heart catheter. But if

anything showed, I'd then have to go to UTSW to Dr. as no doctor

in Plano is qualified. My rheumatologist meanwhile recommended I go see

Dr. . Meanwhile I called Dr. ' office to find out their

preferred protocol, to test first and come or come first. They had me

fax some records and scheduled an HRCT there (#17 in 2 years), an echo

there and a VQ there. I had those last Friday and see Dr.

tomorrow. He'll probably also do a Cardiac MRI. I guess he'll decide

based on those or otherwise whether more is called for, including a

right heart catheter. I'm just taking precaution against PH plus

establishing baselines and getting set up with the expert in the area.

Who better to tell me whether to be concerned or what to do. I delivered

the most relevant parts of my records from the last two years (about

half of all the records) which totalled over 200 pages of copies. His

office was shocked to see the stack, especially when I told them it was

just part of two years.

> >

> > 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]

I'm still reeling from the comment about 17 HRCT scans in two years!! That is one reason I hesitate to change pulmonologists. Every new doctor wants their own version. I've have four in the past year on my chest and one on my sinuses. Before diagnosis last year, I had at least 12 X-rays. When I went to dentist recently, they wanted to do the full panoramic x-ray, but I said no. I am probably getting another bone density test today after a year on prednisone, but that is really low radiation.

Please let me know how you like Dr. and how your appt. goes. I'm sorry that you're facing even the possibility of this issue, but know it's best to err on the side of caution.

Subject: Re: Bruce, regarding doctorsTo: Breathe-Support Date: Wednesday, July 29, 2009, 10:09 PM

ElisaNot really a diagnosis or new. Sort of a situation where my pulmonarypressure on my echo was somewhat high and noted as mild pulmonaryhypertension. Now, understand, those reading echos are going to notevery possibility. So, talking to my pulmonologist we talked about maybegetting a cardiologist and getting a right heart catheter. But ifanything showed, I'd then have to go to UTSW to Dr. as no doctorin Plano is qualified. My rheumatologist meanwhile recommended I go seeDr. . Meanwhile I called Dr. ' office to find out theirpreferred protocol, to test first and come or come first. They had mefax some records and scheduled an HRCT there (#17 in 2 years), an echothere and a VQ there. I had those last Friday and see Dr. tomorrow. He'll probably also do a Cardiac MRI. I guess he'll decidebased on those or otherwise whether more is called for, including aright heart

catheter. I'm just taking precaution against PH plusestablishing baselines and getting set up with the expert in the area.Who better to tell me whether to be concerned or what to do. I deliveredthe most relevant parts of my records from the last two years (abouthalf of all the records) which totalled over 200 pages of copies. Hisoffice was shocked to see the stack, especially when I told them it wasjust part of two years.> >> > 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 problemis> > 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 oneverything!> > 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]

ElisaWell all the CT scans started with esophagus issues, exploded when swollen lymph nodes were found and expanded with PF. Now, don't have plans for another for a year. Although, you mentioned sinuses and I probably do need one there. Doctor and his resident assisting him were great. I really feel like I'm in good hands for the evaluation of PH. He sat down and talked for a long time. Basically my CT revealed nothing new or of interest, my VQ indicated no embolisms or anything to worry about there. With the Echo he was most concerned that is showed the right ventrical to be severely dilated. (This was not the case in my echo six months ago in Plano). They also did a six minute walk and took 14 tubes of blood today to do pulmonary hypertension and heart and blood specific testing. They are suppose to call me with the schedule for PFT's, a Cardiac MRI and the Right Heart Catheter. I don't know if I would have chosen to do it or not but almost got in a trial on my heart catheter. The trial is:Effects of Inhaled Treprostinil Sodium for the Treatment of Pulmonary Hypertension Associated With Idiopathic Pulmonary FibrosisThe drug is Remodulin but doing it in this fashion by inhaling is new. It's just a Phase II trial.It would have been just doing the catheter then inhaling the drug and staying overnight. Just a one shot deal with few risks of side effects and just something interesting to explore. However, the nearest they could slot me for that was two months and he didn't want to delay the catheter that long.> > >> > > 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> > >> >>