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Helping The Lungs


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#1 Sharonvandee

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Posted 08 July 2007 - 11:37 AM

Hey all

Recently I have had problems with being breathless after 12 mths of a wheeze in the left lung that wasn't relieved by the usual puffers. I was sent for a chest XRAY 4 mths ago which showed little. After the problem slowly worsening and a cough but no infection the other day the DR odered repeat chest XRAY and lung function test which shows FVC of 212 so we will work on that.

I go to see the DR today as she says she needs to discuss the XRAY results. I have already looked at the Xray and there are differences that are obvious so at least I know why I am feeling dizzy and tired and very breathless.

As my general practitioner the only one that knows of this condition in the local area left on Saturday and is gone for 5 mths who knows what today will bring but I have to take pamplet again about the condtion for her and hope that she will listen and not tell me that it is anxiety again grrrrrrrr.

If there is no help today at least I know that my visit to the scleroderma clinic is only 8 days away and we have our hope pinned on getting some decent answers and treatment happening before this worsens any more.

Does anyone have any suggestion on helping my lungs along a little to improve their capacity?

Are they any question I should remember to ask when I go to the clinic next week?

Thanks for the love and support.
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#2 Clementine

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Posted 08 July 2007 - 02:53 PM

Shaz,
I am sorry you are having to deal with this. It is really hard to handle in the beginning...I remember when I was first diagnosed and the meds had not started working on my lungs and I was so scared. It will get better once you get on the proper treatment.

To help with your shortness of breath right now, try pursed lip breathing. In the long term, cardio is the best thing to do to increase lung capacity. I have learned to move very slowly. Please be really careful and don't do anything too physical between now and the next 8 days at least. I remember when I first drove myself to ER for my shortness of breath (before I knew what I had)and I passed out in the hall on my way to counter because I had to walk up a little incline. Just that small little hill was too much for me to take. So be careful!!!

I am at a loss for things you should ask your Dr. I'm having a blonde moment.

Thanks for all of YOUR love and support. You are such a sweetheart.

Jen

#3 peanut

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Posted 08 July 2007 - 04:02 PM

Hi Sharon,
I'm sorry about your shortness of breath & lung issues. I also have lung issues and developed a wheeze, but I have interstitial lung disease (ILD). My lung doctor says the wheeze is part of the ILD. Initially she told me that in looking at my lung x-ray my x-rays "appear" normal but because she's a specialist she knows what to look for... and she saw that they're not normal. I hope you're seeing a good doctor who knows what to look for: honeycombing or glassiness, etc.

Have they tried other inhalers? I think I'm finally on the right combo: Spiriva, Symbicort & Xopenex Nebulizer.

best of luck,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 janey

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Posted 09 July 2007 - 03:44 PM

Sharon,
Sorry you're feeling breathless lately. I'm glad you're pursuing this with your current doctor and have had the chest x-ray. Will you be taking the x-ray with you to the sclero clinic? The clinic will probably do a high resolution cat scan and pulmonary function test. Both are excellent tests for evaluating the condition of the lungs.

Since I developed lung problems I find that I breathe very shallow. I've started breathing exercises one of which forces air into the lower lobs (that's where my fibrosis is located at this time and holding). Yes, it causes me to cough most of the time, but I feel it's necessary and I do think it has helped.

I look forward to hearing how your appointment goes at the clinic. I'm thrilled you're seeing a specialist!

Big Hugs
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)