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Diagnosing Pulmonary Fibrosis


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#1 janey

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Posted 10 October 2007 - 04:32 AM

Diagnosing Pulmonary Fibrosis.

Pulmonary fibrosis is one of many interstitial lung diseases that scar lung tissue. Scarring and stiffening of the alveoli decrease transport of oxygen across the alveolar membrane. Advance News Magazine for Physician Assistants. (Also see: Pulmonary Fibrosis)

This item was posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


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#2 peanut

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Posted 10 October 2007 - 07:35 AM

It's interesting... before my diagnosis I went to the ER twice. Each time I had lung x-rays taken and the doctors said I appeared normal. A few months later I was diagnosed with ILD (pretty much the same as pulm. fibrosis) caused my scleroderma by x-ray, blood work and physical exam by a pulmonologist. She showed me the x-ray of my lungs. She said that if a regular doctor looked at my x-ray I appear normal, but because she's a specialist she knows what to look for. You could see my lungs looked like ground glass.

I'm not ungrateful, but it's incredible to think that if the ER doctors knew what to look for I would have been diagnosed sooner...

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my HMO makes me wear a helmet...

#3 janey

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Posted 10 October 2007 - 08:19 AM

Peanut,
It's scary that it takes a specialist to correctly diagnose. Not only do they know what to look for, they know what to listen for. Last January I had a horrible cough so I called my rheumatologist. He said it sounded like pneumonia (based on my symptoms) and sent me to the ER. He immediately called the doctor in ER and told him I needed an exam and x-ray. The ER admitting technician listened to my lungs and said they sounded clear, so after 4 hours I was still in the waiting room so I went home. Two days later, I had only gotten worse, so I went to my primary care physician. He listened to my lungs, said they sounded fine and sent me home to sleep it off. The very next day, the pneumonia broke from the lungs and I became sepsis. The x-ray I got that night showed two lungs full of fluid and surrounded by fluid. The respiratory technician said my lungs were crackling all over the place. So why couldn't the other two people hear it? It just didn't suddenly happen!

I guess this teaches us the importance of specialists. They other thing I've learn from my experiences with MCTD is that I know when I'm sick and I need to keep pushing the doctors until someone finally does something about it.

Big Hugs,
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#4 debonair susie

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Posted 10 October 2007 - 08:20 AM

peanut, it's disconcerting that the ER doctor didn't get a specialist's opinion... where the xray was concerned, in view of the fact you were having the trouble that you were :unsure: .
Thankfully, your ILD was at last diagnosed.

Hugs, Susie
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#5 Shelley Ensz

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Posted 10 October 2007 - 08:35 AM

I know it's a scary thought, but much of the clinical diagnosis is based on our doctor's power of observations and even on how keen their hearing and eyesight is.

I have a mild heart murmur that was diagnosed at a major medical center. My doctor said that at least 2 out of 3 doctors would not be able to detect the murmur, even if they knew it existed. So, as I made the round of their specialists, they had each one listen to see if they could hear the murmur. Most of them could not hear it.

But does that mean the murmur doesn't exist? No. Same as Janey's pneumonia didn't cease existing just because the doctor couldn't hear it...or whether Peanut's x-rays didn't reveal fibrosis to the untrained eye.

When you know in your gut that something is wrong, stick to your guns. An extra test or a second opinion isn't going to kill you, but being brushed off, with a wrong diagnosis, can.
Warm Hugs,

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#6 Angie

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Posted 10 October 2007 - 10:32 AM

Hi,

I think this is a very important discussion. And I think I would take it one step further and add that it be a specialist who has experience treating people with scleroderma.

I recently had a similiar situation. Earlier in the year I began having shortness of breath upon exertion (climbing stairs, golfing, fast walking). After a couple of visits with a pulmonary doctor (he mainly sat their studing my file) he gave me a couple of inhalers to try. Then my rheumatalogist asked me how old I was ... I told her 49 .. she said "dear, do you think this could be menopause symtoms??" Well, that's when I said I need to go see Dr. Connolly at UCSF!

In one appointment she shared with me that when her scleroderma patients tell her about shortness of breath similiar to mine, it usually is a sign of early PAH or ILD. She strongly suggested that I see one of the cardiologists at UCSF who specializes in this. I took her advice and scheduled an appointment; prior to that appointment I was to send copies of all my past echo, PFT's, CT's scans,etc. for her review. Based on all this informaton and her clinical exam, she determined that I have ILD - she said she could hear "crackles" in my lungs -- she knew what to look for.

Further, since they were not able to get a PA pressure during the echo, she recommended that I have a right heart cath with exercise. I had that yesterday at UCSF -- would you believe the supervising cardiologist and intern, plus all the nurses knew all about scleroderma and PAH and what meds are being used! Fortunately, I don't have PAH, but ILD is enough! I go back in a couple of weeks for the full results.

My husband and I talked about this afterward and from now on, UCSF is where I need to go. Shelly, you are absolutely correct when you say to stick to your guns ... we know when something is not right!

Thank goodness for this wonderful forum to share "pearl's of wisdom" with one another.

Take care,
Angie

#7 Patty

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Posted 10 October 2007 - 11:01 AM

I need to add my 2 cents to this. I do not know if I had said this in here or not but we need to remember that Dr's finish school, some in the top of the class, others in the bottom. We really do not know when we go to the ER where in the class the treating Dr finished. I do not know that about any of my Dr's to be honest. Maybe we need to start screening Dr's before we select. I know we screened Dr's before we let them treat Gia, If we do this for our kids, then we need to do it for ourselves. That being said I know that we can not do that for a ER Dr but maybe we can by checking out the hospitals website and reading about all the Dr's that we might come across. I know I spend many hours learning about Scleroderma so maybe I need to do the same for area Dr's. Knowledge is power!

ok so now I will step off my soap box and walk away. LOL
Hugs,
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Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#8 susie54

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Posted 11 October 2007 - 01:02 AM

I would like to ask you all if early in your disease you had a significant shortness of breath that would just come on and last for about a month or a couple of weeks. It is so bad that even at rest it bothers me. Normal xrays but a dropped DLCO this year and RVSP of 28 to 32, borderline pulmonary hypertension. But then it all goes away and now for the rest of the year I have had no shortness of breath except one week where I know it was ashtma related to ragweed here.
My pfts are good but this shortness of breath is so bad. Do any of you have it like this in the beginning?
Susie54

#9 LisaBulman

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Posted 11 October 2007 - 01:59 AM

I'll jump in here too! During my hospital stay last week I was in a teaching hospital. Every morning the dr looking after me, who happened to be the gastro I saw last year for my auto immune hepatitis and liver biopsy, was in charge of a new medical class. It was nice to hear him explain to them about scleroderma and ILD. He had them all listen to my lungs to hear the difference in crackling. He said, "If you notice it is a dry crackle with ILD and with pneumonia and other lung issues it sounds wet and full of mucous."
There was also a fellow that on my case. He was very nice and knowledgeable. While the rheumatologist was checking me over he was talking with another dr, a resident I think. He was trying to whisper but of course with my super sonic hearing I could hear him. He was pointing out my fingers and how they were disfigured and clubbing and explaining it is from the raynaud's. Atleast there is a new generation of dr.'s that are learning about sclero and it's related illnesses.

Susie,
That is exactly how my symptoms started. I thought I was going crazy at first..... Keep following up. With my body I always have symptoms before anything shows up in tests. My shortmess of breath was going on for a year or so before anything showed up on tests.

Hugs,
Lisa
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#10 Angie

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Posted 11 October 2007 - 04:53 AM

Susie, you bring up a good discussion point. In the first couple of years of my scleroderma I did have shortness of breath, but it was all attributed to being anemic and iron deficient due to GAVE syndrome ("watermelon stomach"). Just this year, my DLCO on my PFT was lower.

I'm also intrigued by Lisa's story about the difference in "crackle" sounds in ILD and pneumonia etc. None of my regular doctors have said anything about hearing crackles ... except when I went to UCSF and at the first listen the cardiologist told me she heard crackles.

I think the more we know about this disease the better to advocate for ourselves!
Thanks to everyone for sharing such good information.

Take care,
Angie

#11 summer

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Posted 12 October 2007 - 12:43 AM

Hi Susie,
I'll just add my two cents ... right from the beginning of my diagnosis in February this year I have suffered from SOB which has come and gone and has come again. It had gotten so bad with me that just getting up from the chair in the lounge room and walk approx 12 feet into the kitchen left me terribly fatigued and breathless. I now have continuous SOB on exertion, my Cardiologist has told me this week that I do not have PH. The only test I have had done is numerous Echos and more recently a stress / echo.

I also recently have had severe pain in the lungs which lasted nearly two months.
Strangely enough It seemed to worsen in the evening. To take a breath and try and speak a word was impossible it got so bad.

My rheumatologist put me on Prednisolone ( and yes I know the risks), and the pain has gone for now. All my chest x-rays are clear, my rheumatologist though has referred me to see a respiratory physician, which I see in 6 weeks time. I am hoping that they can shed more light to the situation.

So know that you are not alone in all of this, frustrating it is.

Take care
Celia :blink:

#12 susie54

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Posted 12 October 2007 - 12:58 AM

Thanks for responding. Angie did your shortness of breath come and go or did it just come on and never leave. Lisa, do you continue to have crackles all the time or was this for just a period of time? I remember being in the emergency room last holiday and they were listening for crackles and heard nothing. I had PVC's at the time. Susie54

#13 LisaBulman

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Posted 12 October 2007 - 02:24 AM

Hi Susie,
My crackles are all of time because of the fibrosis. My fibrosis is mostly at the bottom of both of my lungs and is slowly spreading upward. When they listen they can hear the crackles more at the bottom and not so much at the top. Have you had a cat scan with contrast? This is what I had last week and they compared it to the one I had last October and unfortunately there were changes. :(

Hugs,
Lisa
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#14 Gizelle

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Posted 12 October 2007 - 03:52 AM

WOW! Theres been a lot of miss diagnosis. Been there too. I had a lung scan done, a while back, I was told I have Pulmonary Fibrosis. I was absolutly devistated. I saw a lung doctor immediately, my lungs sounded fine, he said I was in early stages. A month later the scan was repeated, exactly the same way and the result was NEGATIVE, I was so glad but what if I were devisated enough the first time and decided to end my life, it would had been for nothing. My general practitioner's answere to the second diagnosis was, all technicians read these things differently, thats the stupidest thing I ever heard. I deceide to take matters into my own hands and contact my lung doctor myself. I insisted he read both lung scans and he determined that I do indeed have extremely mild Fibrosis. What -- who do you trust? Not any of them, I say. Gizelle

#15 susie54

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Posted 12 October 2007 - 06:39 AM

I am amazed how many of you suffer without getting answers ALSO. Ced, you have really gone through alot and like you I had normal PFTs but with a dropped DLCO this year. I am glad you got relief of your pain in your lungs. I know when I AM short of breath, it really is intense and it always last a certain amount of time and then it goes
away for a long time and I am always thankful of it leaving.
I had a scan done two years ago for fibrosis and they were normal but hey I wonder when I read Gizelle's diagnosis and flip flop.
Lisa, thanks, I Know this is a hard subject for many but sometimes I think it is better to know what can happen and how hard it is to get properly diagnosed. THankyou for sharing your experiences.
I am sure I will get another round of Pfts and lung scan this year after January. Right now I am enjoying breathing easy. I have learned SO to appreciate these times.
For all of you struggling with shortness of breath my heart goes out to you because when you cannot breath, nothing else seems to matter. Susie54

#16 MicheleM

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Posted 12 October 2007 - 11:35 AM

I just have to "chime in" on this one. I have been having a terrible time with SOB (I just loved it when I heard it referred to like that!) I went to my reg doctor & he said I was experiencing hyperventilating and wanted me to use an inhaler, but my lungs sounded clear to him. I told him it wasn't that I was holding my breath but that I couldn't get air in, then chest pressure & then the rest of me felt like I wasn't getting air throughout the body. He told me I was hyperventilating & to relax & it would go away. I said could it be the PAH? because it was while exerting myself and not getting any better as the days went on. He didn't think so. I waited a day or two & then called the Pulmo spec. at Emory Atlanta whom I've seen before. My PAH was at 38, considered mild. PFT two years ago (I don't like doctors so I've waited :( !) I know it was stupid but I keep going into DENIAL! Anyway, got an appt for 10/24. Then last week it got progressively worse & this week about the same as last until today at work. Just couldn't breathe! So I'm not really sure what is causing this, but this posting was very timely and I'm glad to read (actually sorry to read) that I'm not alone (we never are I know) but it's been really difficult. Hopefully I'll get the tests re started in a couple of weeks & get the answers. Thanks again for letting me vent & for being here for me! Michele
Soft hugs your way,

Michele

#17 Angie

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Posted 12 October 2007 - 12:20 PM

Susie,
My shortness of breath has been pretty consistent ...worse when I have a cold or when I overextend myself.

I am also taking in all the informaiton on how doctors go back and forth with whether or not people have pulmonary fibrosis. The first time I saw the cardiologist at UCSF, she told me that I had Interstitial Lung Disease (ILD)-- that she heard crackles, not bad, but still there; this was the first time I had a doctor tell me this. I even asked my husband (who was with me) if I had heard correctly.

On a visit to our primary care physician (who is also my GI doctor), my husband sharedthe information from my UCSF appointment. My primary care physician told my husband that I was borderline ILD -- he never told me that. Furthermore, my rheumatologist has never said anything about ILD or hearing crackles.

I'm just so sorry to hear when people suffer -- instead of doctors swallowing their pride and referring out to doctor's with scleroderma expertise, they make up diagnoses.

Take care everyone!
Angie

#18 susie54

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Posted 13 October 2007 - 02:17 AM

Michele,

I will respond to your note by saying < YES, I think there is a common ground here of having extreme problems of shortness of breath in scleroderma, lupus and MCTD that doctors just don't comprehend. They always want to see numbers on paper that correspond to the symptoms.
I know for a fact that some of my worse symptoms came in the first two years of my MCTD but the ANA didn't show up until four years later with the high RNP.
In all my shortness of breath, just the DLCO has dropped this year, yet I feel like I am struggling as if it were my last breath even at rest. THat's all.
On the upside, it is a beautiful fall weekend here and I hope I can get out and enjoy it. and I hope you all can too. I love the weather this time of year. Susie54