Re: Stefani, Doctor's & Validation

[Guest guest]

-

Thanks for the input. I may ask you for that info... still working on other

options. I am down to just the glucophage to control the diabetes, hyzaar for

the blood pressure and simvastatin for the cholesterol. My blood tests came

back fairly normal this last time though there is some indication of liver

problems that may have been caused by the high dose of prednisone I was on (60

mg/day for 2 months). I had soooo much trouble with that stuff. They had me on

advair, albuterol and using a nebulizer too. I am on 2 liters of oxygen at

night and when I go on vacation at sea level, I do not take my machine as I

don't seem to need it. I can exercise with no problem at sea level. I

currently live here in Utah at about 3800 ft above sea level. We moved here

from Minnesota 10 years ago. I had a total knee replacement about 20 days

before I woke up with shortness of breath. When the shortness of breath did not

clear up I went in to see my doctor... about 2 weeks after waking up with the

shortness of breath. I am not convinced I have what they say I have. I have

had problems with fibroid tissue in my body all of my life. They told me the

fiboids I had in my uterus would not allow me to have children (have 2 healthy

children who are now in their mid-20s). I have had fibroid lumps removed from

my arms because they were itchy and bothered me constantly. I may have inactive

fibroid tissue in my lungs... I don't know. I am going to see if I have had an

HRCT as opposed to a plain CT. Thanks again for all of the info.

As Always,

Stefani

> >

> > -

> > Yeah, I have the ideopathic down. They have not been able to tell me

> what has caused it. My doctor (GP) said PF. The Pulmonologist said

> Ideopathic Interstitial Lung Disease (yeah, 150 different kinds). And

> the heart specialist got upset with me when I told him that being told

> you have Ideopathic ANYTHING is like saying to someone that yest they

> are sick, but not quite sure what they have. My heart function tests

> came back real good, or at least that is what my GP says. I get so

> frustrated because I am not getting consistent reports. I read the

> results from the heart doctor and took something completely different.

> My right ventrical is slightly enlarged (probably due to the sleep apnea

> that I know I have had most of my adult life, but never been tested

> for). Went for my first sleep apnea test last night... again, have to

> wait for results. I love this site because I get the impression that

> most everyone has been down this here has been down this lonely road.

> And yes, I have been googling my little heart out because NONE of my

> doctors so far have taken any time to explain anything to me. Didn't

> realize the gravity of the diagnoses until I started gooogling. My

> family (husband and two mid-20 children) thinks that the doctors are

> wrong and that it is " something else " . Another good reason to go to this

> support group. Thanks again for the input.

> >

> > Stefani

> >

>

[Guest guest]

-

Thanks for the input. I may ask you for that info... still working on other

options. I am down to just the glucophage to control the diabetes, hyzaar for

the blood pressure and simvastatin for the cholesterol. My blood tests came

back fairly normal this last time though there is some indication of liver

problems that may have been caused by the high dose of prednisone I was on (60

mg/day for 2 months). I had soooo much trouble with that stuff. They had me on

advair, albuterol and using a nebulizer too. I am on 2 liters of oxygen at

night and when I go on vacation at sea level, I do not take my machine as I

don't seem to need it. I can exercise with no problem at sea level. I

currently live here in Utah at about 3800 ft above sea level. We moved here

from Minnesota 10 years ago. I had a total knee replacement about 20 days

before I woke up with shortness of breath. When the shortness of breath did not

clear up I went in to see my doctor... about 2 weeks after waking up with the

shortness of breath. I am not convinced I have what they say I have. I have

had problems with fibroid tissue in my body all of my life. They told me the

fiboids I had in my uterus would not allow me to have children (have 2 healthy

children who are now in their mid-20s). I have had fibroid lumps removed from

my arms because they were itchy and bothered me constantly. I may have inactive

fibroid tissue in my lungs... I don't know. I am going to see if I have had an

HRCT as opposed to a plain CT. Thanks again for all of the info.

As Always,

Stefani

> >

> > -

> > Yeah, I have the ideopathic down. They have not been able to tell me

> what has caused it. My doctor (GP) said PF. The Pulmonologist said

> Ideopathic Interstitial Lung Disease (yeah, 150 different kinds). And

> the heart specialist got upset with me when I told him that being told

> you have Ideopathic ANYTHING is like saying to someone that yest they

> are sick, but not quite sure what they have. My heart function tests

> came back real good, or at least that is what my GP says. I get so

> frustrated because I am not getting consistent reports. I read the

> results from the heart doctor and took something completely different.

> My right ventrical is slightly enlarged (probably due to the sleep apnea

> that I know I have had most of my adult life, but never been tested

> for). Went for my first sleep apnea test last night... again, have to

> wait for results. I love this site because I get the impression that

> most everyone has been down this here has been down this lonely road.

> And yes, I have been googling my little heart out because NONE of my

> doctors so far have taken any time to explain anything to me. Didn't

> realize the gravity of the diagnoses until I started gooogling. My

> family (husband and two mid-20 children) thinks that the doctors are

> wrong and that it is " something else " . Another good reason to go to this

> support group. Thanks again for the input.

> >

> > Stefani

> >

>

[Guest guest]

,

If you remember our beloved Joyce Dalton used to approach any dealings with this disease at all as though she were going to war. She fought every battle and won for many years because she was exceptionally determined and prepared. I think of her whenever I get tired, frustrated or inclined to just throw in the towel.

I'm so happy that you found a good credible resource that validated your instincts about how to move forward for you. It does sound like you've got some really good information there to pass on to your rehab nurse and ultimately to your doctor. Keep on goin!!!!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, April 17, 2009 9:58:47 PMSubject: Stefani, Doctor's & Validation

Oh Stefani, I can so relate to what you're describing.. .I find it so frustrating & confusing when a Doctor doesn't talk fully & frankly with me... many Folk on this Board have fabulous Medicos who really do know how to communicate with them... but I don't & it sounds as though you don't either.

No wonder we turn to the Web to gain a semblance of understanding about what is happening to us! I use only recognised sites like proper Medical Journals BMJ, Thorax, Mayo Clinic etc... there is an awful lot of misinformed, extreme rubbish out there to be beware of.

Just yesterday I PAID, for the first time ever, the 2008 British/Irish/ Australian/ New Zealand Thoracic Society (60 page) Guidelines for Interstitial Lung Disease. It is the most comprehensice & helpful material I've yet come across on the Web.

I can't forward it to anyone 'cos I had to sign a Declaration to only use for myself & not e-mail it around cyberspace (I guess they want folks to buy it for themselves!)

After reading it carefully & because I've done a TON of research reading prior to this Arcticle I feel I have a pretty good handle on what the current state of opinion is with regard to the Diagnosis, Treatment & Management of ILD.

One thing I now know for sure is that my own VATS Biopsy/ Histology Report isn't worth the paper it's written on... it was a BOTCHED job...it doesn't meet ANY of the best practice guidelines. Clearly, Country General Surgeons should NOT be doing ILD VATS (even if they do have a most charming bedside manner!) They ARE fantastic at saving the lives of MVA victims & other emergency events...... BUT!

I'll be giving a hard copy, on loan, to my Pulmonary Rehab Nurse & suggest she may like to loan it on to my Pulmo Dude... maybe THEN he'll realise that he should STOP referring his patients onto the Charming General Surgeon if he really wants his patients to get a CREDIBLE Diagnosis! He SHOULD be referring them to a Specialist Thoracic Surgeon in the CITY!

I've also found ample support for my current refusal to start Steroid/Immunosuppr essant Drug Treatment. I am NOT a Nutter nor am I Paranoid about likely Side Effects... my most likely diagnosis is still IPF:UIP (based on a clear HRCT scan indicating this) & Not IPF:Fibrotic NSIP ( as mooted by a single, thin, compromised, poorly sited Vats Biopsy sample).

I would succumb to these treatment options only if & when there was a CLEAR diagnosis of an underlying Autoimmune Disease process or I found I had Hypersensitivity Pneumonitis or COP (Cryptogenic Organising Pneumonia). The last two are 99.9 % ruled out & the Autoimmune Profile is yet to be clear apart from the suspicions caused by my having Raynaud's Phenomenon & Ro52 Antibodies. Besides each type of Autoimmune Disease has very different guidlines for Treatment. It is NOT a one size fits all scenario!

I found the 'Options for Treatment' Guidleines very revealing & most helpful... if anyone wants this Section & it's accompanying Table I could probably scan just this section & email to you... send you request to me privately.

Now I feel armed & ready to face my Pulmo to do Battle yet again at my Annual Review!

Isn't it shocking that I have to feel like I'm preparing for WAR! Albeit conducted in a perfectly civilised, jocular, there- there don't worry YOUR little head about these things deary.... that's what I'm here for Manner!

Grrrrrrrrrrrrrrrrrr rrrrrrrrrrrrrrrr rrrrrrrrrrrrrrr. ....

in Oz

IPF: Fibrotic NSIP/UIP???? ????????

Raynaud's

May 2007

Ro52

May 2008

>> -> Yeah, I have the ideopathic down. They have not been able to tell me what has caused it. My doctor (GP) said PF. The Pulmonologist said Ideopathic Interstitial Lung Disease (yeah, 150 different kinds). And the heart specialist got upset with me when I told him that being told you have Ideopathic ANYTHING is like saying to someone that yest they are sick, but not quite sure what they have. My heart function tests came back real good, or at least that is what my GP says. I get so frustrated because I am not getting consistent reports. I read the results from the heart doctor and took something completely different. My right ventrical is slightly enlarged (probably due to the sleep apnea that I know I have had most of my adult life, but never been tested for). Went for my first sleep apnea

test last night... again, have to wait for results. I love this site because I get the impression that most everyone has been down this here has been down this lonely road. And yes, I have been googling my little heart out because NONE of my doctors so far have taken any time to explain anything to me. Didn't realize the gravity of the diagnoses until I started gooogling. My family (husband and two mid-20 children) thinks that the doctors are wrong and that it is "something else". Another good reason to go to this support group. Thanks again for the input.> > Stefani>