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Shortness Of Breath

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Does anyone else have shortness of breath? Bird Man can't get a deep breath, is this normal? Dr. S doubled his Nexium, he said it might be reflux. Just wondering if others have this problem.

Bird Mans Wife


Hugs for All,

 

Julie (Bird Lady)

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Hello Birdman's Wife

 

Unfortunately SOB is a common symptom of Scleroderma. This is because Scleroderma can unfortunately affect the lungs. However, I have experienced SOB unrelated to lung involvement. My SOB comes after coughing fits I experience in the middle of the night resulting from reflux, also an unfortunate symptom of Scleroderma. Of course, what is causing Birdman's SOB is a question more properly put to this dr's. Perhaps he may need a CT scan of the chest and a PFT test. I would definately discuss the issue with his dr. I know that SOB can be very scary, not to mention extremely uncomfortable. Good luck with it and give Birdman my best.

 

Dave in Florida

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Morning Bird Mans Wife!

 

His shortness of breath concerns me seeing that I suffer with this as well. When I used to see my former doctors, they would always run PFT's (Pulmonary Function Tests) to make sure my lungs are functioning normally. I had to go into the oxygen chamber twice because my PFt's showed some abnormalities. Ask his doctor to check his PFTs again because something else maybe going on. This is a serious problem.

 

Keep us posted.


Michelle C. Hunter

ISN Book P.R. Coordinator for the U.S.

International Scleroderma Network

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Dear Wife,

As Beanpole and Dave both mentioned, SOB definitely needs to be discussed with Birdman's doctor and the cause needs to be determined. I don't remember if he has a myositis along with his sclero, but when my polymyositis was highly active in the beginning, SOB and difficulty in taking a deep breath were big symptoms. In a prone position, gravity added so much weight that I could hardly breathe. As my rheumatologist explained, this was due to the weak muscles in the chest and they couldn't assist the lungs in breathing. Once the poly was treated, these symptoms went away until recently when I developed lung problems due to the sclero. Now the SOB is back. I can take a deep breath, but that usually results in a coughing fit. So please get the hubby's lungs tested. A high resolution CT and a PFT are the normal tests. At this point he needs a baseline anyway, so ask the doctor about them.

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)

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Thank you all very much for responding, Bird Man did have PFT in August. He goes back to Duke in December. I emailed his doctor about his breathing, but he didn't seem to want to see him any sooner. I am very concerned I can hear his voice changing, (more struggle to talk). Bird Man said he hasn't had a deep breath in weeks, now I worry about fluid collecting. We really like his doctor but should I try to encourage the doctor to see him sooner than Dec. 4th?

Thanks and Bless you All

Bird Mans Wife


Hugs for All,

 

Julie (Bird Lady)

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Hello Birdman's Wife,

 

I have had shortness of breath that stems from problems in my upper bronchials. It is awful.

 

As others have said, your husband should see the doctor. I hope you are successful at determining the cause.

 

In my case it has been a real struggle. Although the respiratory technologist had said that she noticed problems in the upper airways, the doctor had dismissed it.

 

I know that people can have so many problems in getting the proper help they need. Often doctors don't know and just make guesses as to what they think it could be.

Your husband should see a specialist if it continues. I know that it is not easy for you watching your husband suffer. Our hearts are with you.

 

Blessings,

 

Hailee

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Hi,

 

Yes, I think you should let the doctor know it is worsening and the struggles you are seeing. If the rheumatologist can not see you before December, you may want to have his general practitioner start the process of looking into what is causing the SOB. If nothing else, the general practitioner could order a CT scan of his lungs and you could have that ready for the rheumatologist visit in December. Just a thought...

 

Warm wishes,

Heidi

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By all means Wife, please try to get an earlier appointment. On one occasion, I had to email the chief resident my concern and he in turn made a call to have me come in three days later, after speaking with him. You have to take initiative. Too many doctors play around with a patient's life, not wanting to "Deal" with our concerns or ailments we face each day. Don't give up on this. And don't wait until December. One month can make a huge difference. Like Heidi mentioned before, Bird Man can see his general practitioner to start the process rolling.

 

Keep us posted.


Michelle C. Hunter

ISN Book P.R. Coordinator for the U.S.

International Scleroderma Network

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Hello,

I had shortness of breath for ablout a week and I finally called my dr. They fit me in with the urgent care dr for the day, he took an xray and said I was fine but to see a pulmonary dr for precautionary measures. I saw the pulomonary dr and was diagnosed with Interstitial Lung Disease. Please call the dr and try to get in earlier.

 

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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