Lung sclerosis

My husband was diagagnosed with scleroderma about 11 years ago. It hit mainly in his lungs but hands and face too. He developed PH last year and went down hill fast. He was put onFlolan it it stopped the deterioration but recently he has started to be more short of breath (he is on o2). Could his lungs be starting to get worse now? They have been stable for a long time. Could this be the beginning of the end? Has anyone else gone thru this? I am worried that we have been living on borrowed time and it is now starting to catch up.

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Hi, I also been diagnosed with scleroderma for about 16 yrs. I have a chronic cough. I am short of breath mainly when I do stairs or walk a long distance.The scleroderma has affected both my lungs at a slow pace. My doctor put me on tracleer which I have been taking for 5 months and also azathioprine which I have been on for a year. I still cough, but I feel a lot better. I do have good days and bad ones. I wish you both the best, may God bless You and keep you both strong.

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Hi, I've had scleroderma for 9 years and pulmonary fibrosis and pulmonary hypertension for 7 years. I'm on tracleer, adcirca and sleep with oxygen. I suggest that you take your husband to see his pulmonologist as soon as possible. Meds may need to be adjusted.

Be well!

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Thank God, that gives me hope!
My doctor told me I would not live more than 4 years with Scleroderma, and I am on oxygen now.
I am on 4 lts. 24/7 I have pulmonary fibrosis and they will test me next month for PH.
If your husband is short of breath more than usual it is time to see the pulmonologist, he may need to increase the oxygen or maybe a transplant.
I am a candidate for a transplant, but my doctor says I am still too healthy.
Thanks be to God.

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@Veracruz is your doctor a scleroderma specialist? If not, you need to see one right away.

I find it complete bullcrap that a doctor would tell a scleroderma patient what their life expectancy is. My girlfriend has had PH from scleroderma for over 12 years.

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Hi. I've heard of people being ravaged by scleroderma and not lasting 6 months, and others who are living with the disease into their 90s. This challenging disease presents itself differently in all of us who have it. I'm thankful for every year I've lived and each birthday I celebrate I try not worry too much about what may never happen.

Your doctor was out of line to suggest a four year life! Have not seen any statistics (nor do I want to!!) to back this up.

Be well!

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Thanks to everyone with your comments. It really helps to know that you are not alone. And veracruz, push to get on the list, we were in the process of getting on the list when there was an insurance mixup. By the time we got that straightened out, he was too sick to get on the list ( before he was too healthy!) our pulmonist has said that scleroderma patients arent good transplant canidates but you push! I dont think it is the scleroderma that gets you... It is what it causes and where it hits.

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The only way you're going to know is have the lung tests (pulmonary function test and scan of some sort) repeated. Guessing won't do it.

Then if they tell you that you need a lung transplant, but can't have one due to gastric reflux, it might be time to consider a fundiplication surgery to control the reflux. That could then get you approved for lung transplant.

You see there are ways around these problems. But you won't know until you get the testing.

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being newly diagnosed it is great to hear that someof us can expect a very long life with tis disease. that is a question that has been playing on my mind since i was diagnosed hope you are doing better god bless

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Fundoplication is not the answer for ‘everyone’ who has GERD and needs a lung transplant. I have gastric reflux and severe pulmonary fibrosis that requires me to be on 12-15 liters of O2 24/7. I was told that the only way I would be put on a list for a lung transplant is if I had a feeding tube inserted and never eat or drink again. This all due to my GERD - doctors do not want to risk aspiration into the new lungs. I asked my doctor about Fundoplication surgery and she told me that I was too high risk for this procedure (due to O2 levels) and that she did perform it on another person who has Scleroderma (with fibrosis) and they ended up on a feeding tube anyway. The procedure did not go well. So, this is not the answer to everyone’s problems who has reflux. Every case is different.

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i am to own 02 i gat tired alot i sleep with it please subgest so things that i can do to help

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My wife battled scleroderma for 19 years and battled ph for several years before succumbing to this awful disease. Once the pulmonary aspect of the illness took effect it progressed very quickly. I strongly advise you to go to a ph specfic cardiologist soon. Good luck to you.

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My wife just received a double lung transplant at UPMC (Pittsburgh). I believe that they have transplanted more scleroderma patients that all other transplants centers combined. My wife has GERD as well. As a result, she is on a feeding tube until she receives a 270 fundoplication, which should stop further esophageal damage, and, more importantly, prevent aspiration into the lungs. After this next surgery, she will be able to begin eating.

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