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Crackling sound from the lungs

lungs crackling lung sounds pulmonary fibrosis

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#1 Ron

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Posted 10 April 2015 - 06:05 AM

Does anyone here suffer from crackling sounds from the lungs when breathing? I can hear it plain as day when I lay down. My scleroderma doctor can hear them, but my GP could not. I had a pulmonary function test and my lungs don't have the same capacity as they use to. Also on X-Ray, it shows up as fibrosis.

Last night the sound was very loud, I called Healthlink here in Alberta Canada, it’s a service where registered nurses take your symptoms and determine whether of not you should see a doctor. Today they just said monitor it. Last night it really scared me because the sound was really bad.

Any other people with these symptoms?



#2 Joelf

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Posted 10 April 2015 - 10:17 AM

Hi Ronald,

I have lung involvement and one of the first symptoms my general practitioner and later my local lung specialist could hear with the help of a stethoscope were basel crackles in the lower half of my lungs. At that stage it was inflammation, which had it not been treated successfully with Cyclophosphamide, would have developed into fibrosis, which would have scarred my lungs permanently. Thank goodness my general practitioner was on the ball and sent me very quickly for a chest xray, which showed ground glass about two thirds of the way up my lungs (it appears like candy floss in texture on the xray).

I've included a link to our medical page on Pulmonary Fibrosis to give you some more information. I presented all the classic symptoms of shortage of breath, dry cough etc.and subsequently was diagnosed with fibrosing organising non specific interstitial pneumonia (NSIP)(fibrosing alveoli) which actually, if one has to have it, is probably the best sort to have, as it can be reversable and thankfully was in my case.

I do think that if you're feeling worried about it, then a visit to your doctor to check it out, as mine was, should be your next step.

Kind regards,

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#3 Ron

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Posted 10 April 2015 - 11:00 AM


What symptoms do you get from Cyclophosphamide?



#4 Joelf

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Posted 10 April 2015 - 08:15 PM

Hi Ronald,

Cyclophosphamide is a treatment for Pulmonary Fibrosis; in my case, because the fibrosis was treated at the inflammation stage, it was very successful.

It is a powerful drug; to be treated with respect and not something that would be prescribed willy-nilly, as the side effects are sickness and it can cause inflammation of the bladder, so should always be accompanied by drinking copious amounts of water.

I was fortunate and in my case it was successful; however, I would emphasise that all drugs work differently for different people and because it was successful for me, doesn't necessarily mean that it has the same affect for everyone.

It's not something that can be bought over the counter!

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#5 Ron

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Posted 11 April 2015 - 02:34 PM


How long did you stay on this med?  How did they determine that is stopped lung damage?



#6 Kathy D

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Posted 11 April 2015 - 02:42 PM

Ronald, I hear those when I wake up while sleeping during the night.  Sometimes I cough and that fixes it, other times I turn over and that helps, and once in a while I fall asleep with them.

 

I have mentioned that to my doctors.  They say my lungs are clear.  Interesting things friend.


Diffuse Scleroderma Diagnosed March 2009

#7 Joelf

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Posted 11 April 2015 - 11:26 PM

Hi Ronald,

 

I'll give you a little background to my treatment with Cyclophosphamide.

 

I was very lucky to be referred by my local consultant to a top lung hospital. As they had encountered Scleroderma and the lung fibrosis caused by it many times they were able to diagnose and treat me very quickly, a fact for which I'm eternally grateful. I received six IV infusions of Cyclophosphamide, at four weekly intervals.  Prior to this treatment, amongst the other lung testing they did on me, I underwent Pulmonary Function tests (PFT) which determined exactly how badly my lungs were affected. At my worst my oxygen/carbon dioxide diffusion was 48%. After the first three infusions I was tested again and my oxygen/carbon dioxide diffusion had increased to 65% and after the complete treatment course, my PFT showed an increase to 73%. Since then (and this was five and a half years ago) I have regular PFT's every six months.

 

Since then I no longer take Cyclophosphamide, but instead take an immune suppressant (Azathioprine; I'm temporarily off this medication due to my recent total hip replacement ) and also a few other drugs, to keep my lungs and Scleroderma stable.

 

As stated before, this medication is quite powerful and I was prescribed all these by my consultant.


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#8 Ron

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Posted 12 April 2015 - 04:50 AM

Hi Kathy,

 

I have a chronic cough, about 10 years. I was speaking to a nurse on the phone, a service we have in Alberta Canada, that you can call and get advice from a registered nurse, they will not diagnose. I told her my cough was from acid reflux, but she didn't think so. She felt it was from the lungs. I have the crackling sound all the time. My family doc doesn't seem to think it’s a problem. But he's not an expert on Scleroderma.



#9 Amanda Thorpe

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Posted 12 April 2015 - 12:38 PM

Hello Ronald

 

I just wanted to welcome to the forums! I find that there's nothing like asking the people who know this disease and all its intricacies, not because we're medically trained but because we  live the disease.

 

Take care and keep posting.


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#10 Ron

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Posted 17 April 2015 - 08:27 AM

At the doctor's yesterday. When I was there I asked him to listen to my lungs, as I was concerned about all the crackling sounds. He could hear abnormalities in both lungs. So I am going for a chest XRay to have that checked out. My dad who was 54 when he died of lung cancer from smoking, worries me that it could be cancer, as Scleroderma patients are at higher risk of lung cancer. I don't smoke. Will let you know the outcome.

Ron



#11 Joelf

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Posted 17 April 2015 - 10:27 AM

Hi Ronald,

I'm sorry to hear that your doctor was concerned about your lungs, but I'm glad that you're going to have a xray, to help determine the extent of any damage to them.

I do hope that the result will not show any cancerous changes; please do update us as soon as you have any news.

Kind regards,

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#12 Shelley Ensz

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Posted 23 April 2015 - 07:38 AM

Ronald, how did your chest x-ray turn out? I'm thinking of you and sending good thoughts your way.

 

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Warm Hugs,

Shelley Ensz
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#13 Ron

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Posted 25 April 2015 - 07:16 AM

Hi Shelley,

I go to the doc Monday the 27th, for test results. Will let the board know results.

Ron

#14 Ron

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Posted 27 April 2015 - 02:06 PM

I got the results back from the chest x-ray.

Findings:

This patient appears to be developing progressive lung fibrosis.

There is more to the findings, not good, recommends a CT scan.  I am being booked for one. Could be months, long wait times here for doctors and tests.



#15 Joelf

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Posted 27 April 2015 - 07:55 PM

Hi Ronald,

I'm really sorry to hear the results of your xray.

A CT scan will show more details of the ground glass (inflammation/fibrosis) on your lungs and you should have more tests to find out the extent of it. I've included a link to our medical page on Pulmonary Fibrosis Diagnosis to give you an idea of the tests which can be done.

Obviously, it's not great that you have inflammation/fibrosis on your lungs, but just to give you a little encouragement, I had inflammation on my lungs, which was treated successfully, so it can be dealt with. Time is of the essence, though; my treatment was successful because the inflammation was treated early, before it had developed into scar tissue.

Please do keep us updated on your treatment.

Kind regards,

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#16 Ron

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Posted 28 April 2015 - 03:23 AM

Thanks for the reply. I was diagnosed with Scleroderma back in 1987. Had a brief 30 day stay in the hospital when my kidneys went haywire, they thought it was related to Scleroderma. After a biopsy it was not related. They gave me another diagnosis of Scleroderma. I remember some nurse that came into my room for counseling and thought I was upset at the findings. I wasn’t. Even in 1992 when I was diagnosed with Diffuse Scleroderma, it didn't bother me.

It was not until I saw the 3rd x-ray results I saw yesterday seeing the progression over 3 years that has me worried and depressed. I think I am finally coming to terms with having Scleroderma. I recall seeing something that in most cases the cause of death is from the lung involvement. Many years ago it was kidneys.

Ron

#17 Amanda Thorpe

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Posted 30 April 2015 - 02:57 AM

Hello Ronald,

 

Over the years the main cause of death in scleroderma has changed, it was from kidney involvement and is now, I believe, lung involvement. However, this is not because lung involvement has become worse or ever was worse but because survival of a renal crisis has improved. Doctors are now aware of renal crises in scleroderma, I have a friend who had a renal crisis some 20+ years ago and nearly died before they tied it to the scleroderma, today they would be more on the ball and as we know, prompt diagnosis also enables prompt treatment.

 

Now lung involvement, including pulmonary fibrosis and pulmonary hypertension, is the most critical symptom. Well that's what it says "on paper" but of course the most critical symptom is the one that affects the individual the worst. I have a friend with complete gastric failure, the doctors pronounced her terminal but she's still alive and has even gained weight albeit through TPN (total parenteral nutrition). She was advised that gastrointestinal involvement was the biggest killer and I have also read that somewhere myself. I myself have myocardial fibrosis and had a 2 year life expectancy back in 2010 but thanks to a biventricular ICD I'm still here!

 

I am sure that statistically something or another is more likely to kill in systemic scleroderma but then how accurate are the stats and what about individual circumstances? Firstly stats, there must be as many undiagnosed and misdiagnosed people with scleroderma as there are those diagnosed with it and I wonder what they die of and whether that would shift the focus from lung back to kidney or to the heart or remain on the lung? Of course personal circumstances are also a big player, someone with systemic scleroderma living in the US who has say moderate to severe pulmonary hypertension may well live longer than someone living in India with say complete gastric failure. Someone with pulmonary fibrosis living in the UK, diagnosed and treated immediately may well live longer that someone with kidney involvement, misdiagnosed and then given high dose steroids. It's swings and roundabouts for sure!

 

For you the priorities are diagnosis of the systemic involvement, which you now have, then treatment which you will soon have hopefully and support which will be ongoing if you stick around...I means as in if you choose to keep posting!

 

I am still amazed at how people buck the trend and continue to live for years when they should in fact have kicked the bucket or passed over or whatever euphemism is preferred. Remember that you have lived for nearly 30 years with this disease so you have had a good long run and it's perfectly possible that you will continue to do so! Clearly you're doing many things right!

 

Take care. 


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#18 Ron

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Posted 03 May 2015 - 08:22 AM

Hi Amanda,

 

I have not been doing things right.  I went for many years, about 15 years, where I didn't do anything about scleroderma.  I just wanted to forget about it and not worry.  My course of the disease has been very slow, but the last 3 years its been getting worse faster than all the other years.  I am in for a round of tests and specialists. We will see what the future has in store for me once I get all my tests done.



#19 Shelley Ensz

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Posted 05 May 2015 - 07:54 AM

Hi Ronald,

 

I'm very sorry you've found out that your lung problems are due to scleroderma. Unfortunately it's normal to encounter more challenges at the ten or twenty year mark, with or without treatment of any sort. 

 

It sounds like at least you are not guilty of taking too many medications. Therefore, you probably haven't worn out your liver or kidneys yet, which would mean you'll be in much better shape to undertake any necessary treatment now.

 

Please keep us posted on how your tests are going. I know its a slog and a waiting game.  I'm thinking of you and sending good thoughts your way.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#20 Ron

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Posted 15 May 2015 - 05:03 AM

Well I had my first short of breath incident with Scleroderma on Wednesday, May 13, 2015.  I went to the grocery store on a short errand run and while doing my weekly walk through the store, by the end I was out of breath, like I walked 10 miles. Never happened before.  I am also just getting over the flu, had it since May 3rd.  Still coughing up phlegm from the lungs.        

I went to the doctor the next day and she gave me a rescue inhaler.  She said use this next time I experience shortness of breath, or go to the emergency department at the hospital.

Does this thing work?  Anyone else here use them?  I am set up for a bunch of tests, I am interested in finding my pulmonary function test and compare it with the one I had done 2.5 years ago.