Jump to content


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


Photo

Lungs and scleroderma


  • Please log in to reply
14 replies to this topic

#1 TT1

TT1

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 29 December 2011 - 08:47 PM

I've had scleroderma for about 5 years now ( well that's when I was finally diagnosed but had several symptoms before then) My gastro tract is being affected. I've got some fluid around my heart and suffer from an irregular heart beat and palpitations.

My lungs have a little fluid in them but the latest CT scan and PFT showed pretty good results. I suffer from severe shortness of breath and my lungs hurt all the time.....anyone know why I have these symptoms if "everything looks good"?

#2 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 29 December 2011 - 10:46 PM

Hi TT1,

Welcome to our Forums, but sorry you are here because you have Sclero. You will find a wealth of information here and hopefully somebody who has lung involvement will chime in soon.

From my point of view, and be aware that I am not a doctor and don't even have a First Aid Certificate, I would think that fluid on your lungs might well cause some discomfort. Should those 'pretty good results' be qualified by 'for somebody with Scleroderma'? It is all very well to compare our results with a perfectly healthy person's but I think we need to keep in mind that we do have something going on that other people don't.

I am inclined to respond that I am "pretty good thanks" when asked, but make me take a walk and try to keep up with others and I am obviously hopeless!!

Warm hugs and best wishes from the upside down side of the world
JudyT

#3 TT1

TT1

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 29 December 2011 - 11:09 PM

Judy T,
Thank you for the warm welcome...This disease is scary and frustrating most of the time. I've got an excellent heart doctor and an excellent Rheumatologist but yet I still always find myself confused.

I've read article after article and still don't understand a lot of it. I am about to go on disability with my job next week, as I'm on my feet 9 hours a day and just no longer can do it :( I'm constantly out of breath. My boss notices it , as do co workers and my own kids. I have always been very athletic and love it, so this is killing me!

I just want to be able to breathe and be active and live a semi normal life. The ct scan report showed " mild dependent Atelectasis" I googled this and it said something about the lungs collapsing but my lung doctor said it means fluid but its mild, so it would not be causing my severe shortness of breath. Now I'm very confused.

He is ordering a "6 minute walk" and some other test and will see me back in 6 weeks. In the meantime, I plan on trying to get in to see my Rheumotologist and see what he says. My quality of life is minimal and in the last 2-3 months, my lungs have gotten worse.

#4 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 30 December 2011 - 12:48 AM

Hello again,

Sometimes it doesn't help to read too much on the Internet, it can help if you find a good article but some of them are just plain scary. I read a fair bit when I was first diagnosed 8 years ago and gave myself a hard time thinking about what might happen. None of it has so far!!

There are a lot of articles on this site which are informative but not scary and you might be well advised to stick to reading some of them.

You don't say where you live but if at all possible you should try to be seen by a Scleroderma Expert to get the best advice.

Chin up - this disease is a funny beast and just sometimes it surprises you with what it decides NOT to do!!

More warm hugs

JudyT




#5 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 30 December 2011 - 08:31 AM

Hi TT1,

Welcome to these forums!

I'm sorry to hear that you've been diagnosed with Scleroderma for the past five years and are suffering worrying symptoms. I have lung involvement and like you have always been very active, so I can understand how worried and frustrated you feel. I also know the overwhelming desire to google all the bizarre symptoms and results associated with Scleroderma (none better! ;) ) but unfortunately there is a lot of unsound and downright scary information about this disease out there. I've therefore included links to our medical site to Lung involvement, Plural effusion,Cardiac involvement and also Gastrointestinal involvement which will give you accurate and up to date information without the sensationalism! I hope you will find these links helpful.

I'm pleased to hear that you have a good rheumatologist and heart doctor; we do recommend that if possible you consult a Scleroderma specialist as Judy has suggested as this is such a complex disease with many different aspects to it and unfortunately many rheumatologists do not have the expertise to deal with it. Hopefully when you see your heart specialist in six weeks he will be able to organise further tests for you and advise you further.

Do please keep posting and let us know how you get on.

:emoticons-group-hug:

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#6 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,893 posts

Posted 30 December 2011 - 11:36 AM

Hello TT1,

Welcome to our Scleroderma family. I'm so happy you've joined. I think you'll find this is just the place for great information, support, and friendship. It looks like Jo gave you a wealth of information, so I will just add a hug! :emoticon-hug:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 TT1

TT1

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 30 December 2011 - 09:37 PM

I'm loving the warm welcome I've gotten! Thank you guys! I live in Las Vegas and have thought about going to UCLA (wanted the Mayo Clinic but not on my insurance) but my Rheumatologist seems to be very knowledgeable in Scleroderma.

My lung doctor is the one who seems to be upseting me. He doesn't see any "clinical" problems with my lungs, and makes me feel like it's all in my head. He even asked me if Im anxious.

I know how I feel and I know I can't breathe good and my lungs hurt. I know that compared to 1 year ago, I'm A LOT worse and my activity level has decreased so much :( He plans on doing a 6 minute walk test but only after I pushed the fact of how bad I feel. Does anyone know why my lungs feel so bad but yet nothing shows up on tests?

#8 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 30 December 2011 - 10:43 PM

Hi again TT1,

Well, yes you may well be anxious - not being able to breathe properly would make anybody anxious!! The 6 minute walk test should clear up that question, surely. At least he has agreed to do that for you.

Just make sure that it doesn't disappear into the wide blue yonder, be your own advocate and if an appointment doesn't turn up soon, start chasing it.

Best wishes and warm hugs
JudyT

#9 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 31 December 2011 - 03:26 PM

Hello TT1

Something has cause the fluid on your lungs, do your doctors have any suggestions? As far as I am aware it's not normal to have fluid on your lungs, well as a layperson I have never heard of it being normal? I take Judy's point, you aren't normal (sorry!) you have scleroderma that can cause many heart/lung manifestations (pulmonary hypertension, pulmonary fibrosis, heart failure to name a few) so I don't think the matter should just be left and would be interested to know how your 6 minute walk test goes.

I have myocardial fibrosis that lead to heart failure and my only symptom was shortness of breath (SOB), an ECHO showed the problem and after implantation of a pacemaker/defibrillator the shortness of breath improved. My point is my SOB was caused by something and in my case it was something serious, I was in class 3 (out of 5) heart failure with an ejection fraction of 32% (normal is 55-60%).

Of course I have no idea why you are out of breath and it may be nothing serious but it's a good idea to find out why yu are just in case.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#10 susieq40

susieq40

    Silver Member

  • Members
  • PipPipPipPip
  • 129 posts
  • Location:Montana, USA

Posted 01 January 2012 - 09:07 PM

A definate second opinion would be on my agenda! I have gotten really lucky with my lung doctor; she's the one that found the Scleroderma, but only because I had Interstitial Lung Disease. Which is fibrosis-scaring in the lungs. I had pain in my chest 3 years before and my regular doctor and RA didn't think anything of it, other than stress.....just put me on xanax and called it good. But that wasn't good...but I took their word for it....and well, now I'm on oxygen 24/7. If I'd just seen the lung doctor I may not have as bad of lungs now that I do. Maybe. Anyway, It's always good to be your best advocate. If something don't sound right or feel right, keep pressing onward! You know your body! Good luck and keep us posted!!! I'm in Montana, How long have you lived in Las Vegas?
And Welcome to our familly!! HUGS HUGS HUGS!!! :emoticons-group-hug:

#11 mews

mews

    Bronze Member

  • Members
  • PipPip
  • 15 posts

Posted 02 January 2012 - 01:28 PM

TT1 I have also had a CT lung scan and was told I had Atelectasis in the lung bases. Dependent atelectasis, the Cardiologist told me I should see a Pulmonologist and then the Rhume said I should wait... I never really found out what it meant. I did read that it was a partial lung collapse of both lungs. I am not waiting I am going to see a new cardiologist and then a Pulmonologist. This all happens in the next two weeks. I will let you know what happens.

#12 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 02 January 2012 - 02:29 PM

On that same theme as mews has started, it was discovered a couple of years ago that I had Pulmonary Hypertension. This discovery was relayed to me by the Gastroenterologist who initiated the investigations. We had been talking about dealing with my bowel issues, but once he found the PH he more or less told me to go home and accept my fate, that there is nothing to be done for PH. That in itself is not true - there is good treatment available for PH.

As it turned out, because I didn't do as he suggested, the PH was from Mitral Stenosis. I have Rheumatic Heart disease, and lickety split the Cardiologist referred me on to a Cardio Thoracic Surgeon, and as of now I have no discernable PH.

The point of this story is to remind you that although we have Scleroderma we are not immune to anything else that others get. We are susceptible to anything from Bunions to a Brain Tumour just like anybody else, and we are not the only ones who forget that. If you are not happy with the opinion from somebody - follow it up and ask for another opinion.

Best wishes to all of you out there who have an unsolved puzzle which is worrying you.

Warm Hugs

JudyT

#13 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 02 January 2012 - 02:37 PM

Welcome TT1

I'm sorry to hear you are having more difficulty lately but if there's one thing I do know, it is that you would be the first to know if you feel different than last year. If it were me, I would strongly push for another lung doctor/pulmonist appointment for a second opinion as well. I hope you keep us updated and let us know what you decide / how this works out for you.
Sending good wishes your way!

#14 mews

mews

    Bronze Member

  • Members
  • PipPip
  • 15 posts

Posted 02 January 2012 - 03:03 PM

Well said judyt...much better than I could have said it, and I really did want to say all that but my lap top was dying LOL. We have to be our own best advocates, no one will look after me better than me!

Stay well my Friends Mary

#15 TT1

TT1

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 03 January 2012 - 11:47 AM

Thank you all SO much for all of the advice and well wishes!! I'm going to drop off the paper work with my Rheumatologist today, to go onto disability. :( Not what I want to do but the fatigue and breathing and lungs hurting, is all way too much for me to be working 45 hours a week. and I'm on my feet the whole 9 hour shift, daily. I do get discouraged but will not give up...Thank you all so much for sharing your stories with me!