Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Worried about pulmonary fibrosis


  • Please log in to reply
7 replies to this topic

#1 Millefleur

Millefleur

    Newbie

  • Members
  • Pip
  • 9 posts

Posted 14 June 2009 - 01:24 PM

Hi,
I am worried I might be developing pulmonary fibrosis. I had one slightly abnormal PFT, then a normal one, and a CT lung scan which showed some fibrosis, which a pulmonologist says "everyone has." (He knows nothing about scleroderma). I also am not diagnosed with scleroderma - just early connective tissue disease. My mother died of PF and Pulmonary Hypertension from scleroderma. I have intermittent breathing problems which became quite noticeable last spring. In late winter they seemed improved. I began an exercise and diet program in March, thinking perhaps I was just unfit, and am now close to a normal weight and much more fit. The breathing difficulties upon exertion are back and I get winded in my exercise class. I get very out of breath when I exert myself past a certain point. I notice it also when I bend down and stand up. Did anyone with pulmonary issues experienced changes in their symptoms in the early stages - worse some days or months, and other times not so noticeable? Thank you, and my hat is off to all of you struggling with this difficult disease.

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 15 June 2009 - 06:42 AM

Hi Millefleur,

I'm sorry to hear of your breathing problems. Have you been seen by a scleroderma expert yet?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 16 June 2009 - 05:31 AM

I just dealt with this issue in that I had "ground glass" form in my lungs in a large quantity in a very short amount of time. I thought for sure it was the start of pulmunary fibrosis. When I met with my pulmonologist she said that ground glass has to start to from at the bottom of the lungs and then continues to fill up. My ground glass was at the top of my lung indicating I had a lung infection of some sort, which can be very dangerous too she said. So when you have CT's it will show if you have the start of fibrosis. I have lung involvement with my sclero but not to the point of fibrosis thankfully. I wish you good luck in finding exactly what you are dealing with. Don't give up until you get your answers as no one but you will care in finding out what's going on as you know what you are dealing with and how you feel.

Warm hugs,

Peggy

#4 Millefleur

Millefleur

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 9 posts

Posted 17 June 2009 - 07:25 PM

I have seen a scleroderma specialist. I do not test positive for SCL and have no outward symptoms and she diagnosed me with primary Raynaud's. She said it is rare for a mother and daughter to both have scleroderma, but something is wrong with me and I think it is more than primary Raynaud's. My mother had sine scleroderma for years without knowing it because she had no outward symptoms. She kept getting more and more out of breath and no one could figure out why. Eventually she developed pulmonary fibrosis, pulmonary hypertension, and cardiomyopathy. She was diagnosed one week before she died when someone finally tested her for autoimmune diseases. I got Raynaud's about 20 years ago. Seven years ago I got severe achy joints and shooting pains and lots of fatigues. This lasted four to five months than went away. My ANA tested positive. Then I got occasional "flares" of these symptoms until last year when I developed a noticeable shortness of breath upon exertion, and reflux. Currently I feel fatigued all day, even when I wake up. When exercising I rest between each weight machine because I run out of breath. Can anyone recommend a specialist in the Sacramento CA area? I am hesitant to return to the specialist I saw because I didn't feel that she took my symptoms too seriously. Also, is it possible to have these breathing issues wax and wane? My shortness of breath has gotten worse in the last month, but it did this last year than slowly seemed to somewhat improve.

#5 Millefleur

Millefleur

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 9 posts

Posted 17 June 2009 - 07:26 PM

Thank you, Peggy, and I hope your infection cleared up.

#6 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 18 June 2009 - 05:04 AM

Millefleur,
I'm not sure if I've welcome you already, but just in case - WELCOME! I'm sorry you are having symptoms related to scleroderma and having problems getting any kind of diagnosis. Breathing problems can be caused by so many things that it's hard to pin down the cause. I would think since yours comes and goes, that makes it even more hard. Mine has come and gone over the past 7 years but each time we were able to determine the cause. It's been everything from weak chest muscles to heart problems to lung problems. So it's definitely something I wouldn't ignore even if it does go away for a while.

You asked about scleroderma specialists in Sacramento. I'm providing you with two links that I got off the ISN Scleroderma Specialists page:

Scleroderma Clinical Trial Consortium Centers in California

Rheumatologists that are members of the American Society of Rheumatology in Sacramento.

I hope you find someone that can help you. Please keep us informed.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#7 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 18 June 2009 - 05:48 AM

Hi Millefleur and welcome!

I can imagine how you must feel and the concern with the symptoms you have been having.

Shelley, Janey and Peggy are with you on this, as am I... It is important to get to the bottom of this.

I have GERD, which has caused Asthma to rear its head. I don't have a severe case of it, but upon activity, it lets me know it's there.

My husband has Asthma and takes a medication to deal with the allergies of spring.

Having seen your mom deal with the health issues she had, I'm sure you WOULD like to find out the likelihood.

I will keep you in my thoughts, in the meantime. Please keep us posted?
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#8 Millefleur

Millefleur

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 9 posts

Posted 29 July 2009 - 05:43 PM

Thank you all for your suggestions. I just completed another pulmonary function test and am pursuing answers.