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Crackling sound from the lungs

lungs crackling lung sounds pulmonary fibrosis

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#21 Shelley Ensz

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Posted 15 May 2015 - 06:56 AM

Hi Ronald,

 

I'm sorry you had an episode of shortness of breath. I hope you get some more answers soon.

 

Please keep in mind that I'm not a doctor, and have no medical training at all. It's my understanding that rescue inhalers can work near-miracles for the most common causes of shortness of breath (dyspnea), such as most lung problems including asthma, allergies, COPD, and inflammation.

 

However, they won't resolve an episode of shortness of breath if it is caused by other things, such as a pneumothorax (collapsed lung), or issues outside of the lungs such as pulmonary hypertension, heart failure or heart attack,

 

Since so far you've had an isolated event, and it was perhaps mostly inspired by the infection or a clogging of the airways due to phlegm, you might only need the inhaler temporarily.

 

You might want to consider some self-monitoring while things are getting sorted out. They recommend that all people with systemic scleroderma take their own blood pressure daily, to detect and alert for the initial signs of sudden kidney failure or other complications. Simply taking and charting your blood pressure and pulse once a day would establish your baselines (if you aren't already doing this.)

 

Then, since you have lung concerns now, you might really like to have a little device for measuring your oxygen saturation. An oximeter is just a tiny (and rather inexpensive) device you clip onto your finger whenever you want. Normal sats for entirely healthy people are probably about 96 to 100%.

 

Your lung doctor can advise you as to what they consider a reasonable cut-off point for you, but the general guideline for oxygen supplementation to be covered by insurance companies is that sats regularly fall below 88%, on testing in the doctor's office, either at rest or with a medically supervised six-minute walk.

 

Those technical details aside, you can buy a pulse oximeter online, or at a drug store. They are often used by athletes. The peace of mind they can deliver for someone with lung problems is amazing!  You can know whether or not you are over-exerting, or if your shortness of breath is caused by an actual lack of oxygen -- or something else.

 

Tracking readings once a day for years can establish a pattern, and you can know very quickly whether you are improving or worsening with medication or exercise. It's something to consider, at least, if you don't already have and use one.

 

: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.

#22 Amanda Thorpe

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Posted 16 May 2015 - 10:37 AM

"It's normal to encounter more challenges at the ten or twenty year mark, with or without treatment of any sort."

Shelley, I had no idea and am two years short of my own ten year anniversary as it happens.

Interestingly, when I first saw my scleroderma expert and asked what my life expectancy was, at least 10 years was the reply I was given. At that point I had no internal organ involvement and found the reply interesting. Normally you hear the reply to life expectancy in terms of no more than, not at least!

This would make sense as the doctor would have known that things can change at the 10 year mark.

Well, I shall have to wait and see what happens two years from now. It's been am interesting journey thus far and at least I know that will continue!

Of course nothing could change and I could plod along very much as before, awaiting the 20 year mark etc. Scleroderma is nothing if not unpredictable and we all have our own experience of it so let's see what happens next!

Take care.
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#23 judyt

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Posted 20 May 2015 - 12:06 AM

Hi Amanda,

 

As you well know I passed the 10 year mark in the 1970's and am now approaching 50 years at least.   OK so now the wheels are falling off and I am only 12 years past diagnosis but I don't count that as valid because I remember the first Gastro attack in 1950's so I think I have done pretty well.   It seems that the later one gets the first indcations then the gentler the onset might be.   However, I guess there are others here who can go back further than me.

 

Judyt



#24 Ron

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Posted 21 May 2015 - 06:38 AM

I had another episode of shortness of breath after a trip for groceries.  I used my rescue inhaler and it didn't do any thing but gave me heart palpations about every 4 beats.  Went to the doctor, they sent me for an ECG immediately and waiting for results.  Had tightness in the chest, so they gave me a prescription for nitroglycerin spray.
            
I am reluctant taking it, because they don't know the whole picture about Scleroderma.



#25 judyt

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Posted 21 May 2015 - 11:24 AM

Hi Ronald,

 

I would agree with you about being very cautious taking new drugs when the original cause has not been found.   The sad fact is that very few people you come across will actually know anything much about Sclero and how to treat us.

 

I am often breathless, and I have had Pulmonary Hypertension but that has been put down to the Mitral Valve damage which I have had repaired.   At this point I don't notice any improvement but I am still recovering from the Pneumonia I contracted at the time.

 

Different doctors have different opinions about why I am breathless and in the meantime I just jog along puffing as I go.

 

Judyt



#26 quiltfairy

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Posted 22 May 2015 - 09:02 AM

I have to ask, are you a smoker? I had crackling in my lungs and got short of breath easily, but since I quit smoking 5 months ago the crackling is gone and I can go a little farther without getting short of breath.

 

My sclero doctor says my lungs sound much better and my next pulmonary function test will probably be better.



#27 Amanda Thorpe

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Posted 24 May 2015 - 03:15 AM

Quiltfairy! Had it been 5 months since you gave up smoking? May I say that's amazing and well done and keep on keeping on! It CAN be done!

Take care.
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#28 Joelf

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Posted 24 May 2015 - 04:49 AM

How fantastic and good for you, Quiltfairy! :congratulations:

 

5 months without smoking........you must feel so much better for it and that's not counting the effect it will have had on your lungs!

 

I'm sending you some balloons and doing a Sclero Happy Dance for you to celebrate!!

 

:balloons: :happy-dance-line: :balloons:


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#29 quiltfairy

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Posted 24 May 2015 - 01:04 PM

Thank you.



#30 Ron

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Posted 26 May 2015 - 06:31 AM

Does anyone else with pulmonary fibrosis notice they breathe more than the normal rate per minute?

I am about 32 breaths per minute.    
 



#31 Joelf

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Posted 26 May 2015 - 06:53 AM

Hi Ronald,

 

I must admit that I haven't noticed my breathing to be any faster (in the beginning I had a shortage of breath.)

 

I was able to go for a slightly more strenuous walk uphill today (hips are improving) and although I'm not nearly as fit as I once was, I didn't feel that my breathing was any more laboured than before my operation, despite my having to cease the immunosuppressants for a period of about six weeks.

 

Kind regards,


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#32 Ron

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Posted 27 May 2015 - 06:16 AM

Does anyone one here experience shortness of breath with their lung involvement?  Mine just started about 2 weeks ago.  It started after a nasty flu bug, once the flu was gone, I ended up with shortage of breath. 



#33 Shelley Ensz

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Posted 27 May 2015 - 01:10 PM

Hi Ronald,

 

I've had shortness of breath on exertion for over 20 years now. By the time my lung involvement was caught, I already had fibrosis on the bases of both lungs. Since the damage was already done, and the inflammation over with, I didn't need any treatment for it.

 

My lung function is still very good, as in, I certainly don't need oxygen. However I also get short of breath very easily, usually even walking at a normal pace on flat ground for a bit. The solution, in my case, is to just move slower and to stop and catch my breath as needed. Which is miles above needing to use oxygen, or being incapacitated.

 

It can take awhile to really recuperate from any lung infection, so you can probably expect a little more improvement as you regain your endurance. Sometimes its not the lungs alone, but the heart and lungs working together, and being out of shape (which occurs very quickly, within a week or two of not exercising) exacerbates it. 

 

If your doctor allows it, try to do just a tiny bit more every day. Like, moseying for one minute more on each walk. Try to keep a steady pace that doesn't leave you gasping for air, which is likely a lot slower than you are used to. What I like about this plan for improving endurance is that it leaves me feeling a sense of accomplishment, but also doesn't exhaust me or land me back in bed. And it is amazing how fast those tiny little minutes can add up, over the course of a month.  Gradually, you might notice a bit of improvement because your heart and lungs and muscles are starting to coordinate their efforts better, as you recover.

 

You won't "recover" from scleroderma, of course, but you likely have a ways to go before you are really recovered from the flu. It can knock the socks of folks, and it can even take healthy people a long time before their functioning is really back to normal.  So please have patience with your recovery.

 

Basically, you are not alone, even though each and every one of us has a different path and experience with this highly individualized disease.

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
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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.

#34 Ron

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Posted 27 May 2015 - 03:10 PM

Hi Shelley,

I went out and bought one of those meters for O2. But this thing is screwed up. Its giving me readings like O2 81% and pulse rate of 205. I continue and it still spits out strange numbers. I paid 80 dollars for it and I am going to return it. Every time I have been in the hospital or ambulance, they have always had a hard time getting readings from my fingers, most likely due to the poor circulation. They have sometimes used my ear lobe for readings.