Hey everyone! I know I posted about my case a few weeks ago, but I didn't get very many answers. I have a very confusing case. I show both severe COPD and also a severe restrictive lung dysfunction. Everything in my results points to stage 3 COPD except for my FEV1/FVC ratio. My FEV1/FVC ratio is 113 percent. My TLC is also 104 percent, which pretty much points away from a severe restrictive lung dysfunction. I don't know if gas trapping and hyperinflation of the lungs can mask a restrictive lung disease by making the lung capacity higher, but that could be the case. I also know that a restrictive lung disease would make the FEV1/FVC ratio higher than normal. It is just so weird my test results. I do notice that the Stiolto has been helping me breath much better. I do not feel like I'm choking at night when I use it. When I ran out, I noticed a big difference after not using it for a day. I don't know if this is just a placebo effect, or if it is real. I have had blood clots in my lungs; so I don't know if my lung function results are because of chronic clots, or if it is a mixture of chronic blood clots, COPD, and some sort of restrictive lung dysfunction. My peak flow graph is really weird. It doesn't match up with COPD or a restrictive lung disease. It is very strange. I also have chronic chest pain, sometimes so bad it hurts to breathe, and I go to bed clenching my chest. Heart attack and acute blood clots have been ruled out recently; so it has to be chronic clots, or just lung disease. What do you guys think? It is also possible that I had new blood clots at the time the lung function test was performed. I was having a bad month and choking a lot, especially at night. I was waking up choking with a fast heart beat. I'm having the same issues again this week; and it's because my blood is getting too thick (low INR) and the Warfarin is not working. I really don't know what to think anymore.
The ability to reply to this post has been turned off.
14 Replies
•
Good morning to you,
I only wish I had an answer for you, but I don't understand my own print out never mind anyone else's. I'm sure someone amongst these fine knowledgeable people on here will be along shortly with the right answers or suggestions for you. It's not nice to be frightened about what is happening to your lungs, and I do understand.
• in reply to
At first, I thought it was going to be Pulmonary Fibrosis, but my CT scan came back clear. I am just hoping maybe there is a mistake. Maybe I did the test wrong or something, but then my lungs get to hurting a lot. My grandmother died from COPD and she never smoked a day in here life. My aunt died at age 57 from COPD, but she smoked 2 packs of cigarettes a day. I am thinking maybe it is genetic. I heard that you have to have the genetic form of the disease to have such terrible spirometry results before the age of 40. They want to do a 6 minute walking test and repeat the lung function test again. I know that some days I can walk well, and today I was getting short of breath just walking through the store. I hadn't had my maintenance inhaler dose yet though, because I had to run out of the house today. Now my lungs hurt and feel like there are rocks in them. It's the only way I can describe the feeling. It's like I'm breathing in rocks or dirt. I have no cough, but I am on pain meds which suppress the cough reflex. I also had a 3 month long lung infection with coughing up green stuff back in 2009. I was coughing so hard I was getting dizzy and almost passed out a few times. I never went to the doctor and it eventually passed. I used to cough up a lot of green stuff when smoking, so maybe the test is accurate.
Hi again, I have just read your reply to Jennifer. Have you had a CT scan at all to see what's happening in your lungs.
You say that you have no cough, maybe due to its suppression by the pain meds....but can you hear any mucus wheezing in your cheat. If so I wonder if the ' huffing technique ' would help bring it up for a sputum test to see if you have any bugs lurking in your lungs.
I often wonder if there is a genetic element to my asthma /COPD as my grandmother, mother, I and my daughters all have or had breathing problems.
I am sorry but I can never understand Spirometry results....I have a blind spot when it comes to numbers I guess.
I had a CT scan that supposedly showed completely normal lungs. Maybe they missed something. I really don't know. I don't think a person can have 46 percent lung function and a normal CT scan. Every disease I have is not a typical presentation. I did have lots of chest infections when I was a smoker, but none since I stopped smoking in 2011. I can tell you this much, whatever I have going on in my lungs is so bad that if I even smoke one cigarette, I will be in bed all day sick. It's like the cigarette smoke stays in my lungs and makes me sick. It also looks like someone took my results down because I didn't scrub my personal information from the top of the page. I kind of figured that was going to happen. It's all good though. I'm just really stumped about all of this.
Hmmm.... I am very interested in your case. I think I may have replied to you before? The name is unforgettable.
My case was tricky and even now after six years it hasn't been fully diagnosed. It all started with PEs and it took ages for doctors to dx chronic thromboembolic disease (CTED). There were radiologists who could not see it on CT and ---- luckily ---- others that could. All confused by a long term history of asthma, and also a sudden on-set obstructive disease. Which has more or less been diagnosed as Obliterative Bronchiolitis (OB). So I have become somewhat sceptical about analysis of scans and test results.
So ask for second opinions, luckily my Lovely Lung Consultant was only too happy to go down that route. OB in my case, I am convinced, was caused by the blood clots in the tiny blood vessels damaging the small airways. So my ears pricked up, big time, when I read about your case. One of the problems was that no one ---- NO ONE ---- had ever come across a case of PEs causing OB. So I am always on the look out for similar patterns and stories. Occasionally lung diseases present as both restrictive AND obstructive. And this can happen with OB. My symptoms are atypical of most lung diseases, especially obstructive ones: there is no congestion, wheezing, mucus production, coughing or infections. What I do have is severe breathlessness, chest pain, and exercise intolerance that I have never been able exercise myself out of. Pulmonary Rehab was a disaster, it just seemed to make everything worse.
In my case I think that the two conditions: CTED and OB, mask each other, and make it difficult to understand.
Please let me know more of your story. I am genuinely interested.
They did not find chronic clots on my last lung scan. The CTPA, but it was in the emergency room, and they were trying to exclude acute blood clots at the time. I might have to send my CTPA to a specialist who can spot subtle changes to the arteries in the lungs, because there are no large chronic clots visible. It could be more of a distal problem, which can also cause lung issues. I just know that I had some trouble sleeping again last night. I also have mild to moderate seep apnea and it tends to act up more on some nights than on others. Any how, I will continue to fight for a diagnosis. Thanks for the support.
The radiologists at the Tertiary Pulmonary Vascular Disease Units, (six in the UK: two in London, Papworth, Sheffield, Newcastle, and Glasgow) offer, as a service, interpretation of CTPA scans and it was the Sheffield team that found my CTED when the radiologists at St James's in Leeds didn't. Your consultant could send the scan to your nearest one if s/he could be persuaded. It is a matter of a click of mouse now, of course.
Ah! Just spotted the give-away term 'Emergency Room'. Are you in the States? I can tell you the top — seriously top — centre for CTED, and CTEPH in the world is the University of California San Diego Hospital.
In my case there was evidence of some arterial blockage low in my right lung, But like you I think the worse damage is in the microvasculature, which cannot be seen on scan. I had extensive multiple, bilateral clots, i.e. as well as some bigger ones there was, according to a haematologist, a "shower" of clots that resulted in all my small blood vessels being "pruned".
Can't wait to get the next instalment of your tale.
I didn't have health insurance when I had my clots and no one explained anything to me. I had a large saddle PE extending into both upper and lower lobes of the lungs. I don't think I had a shower of clots like you did. My clots were one solid clot; straddling both lungs, and extending into both upper and lower lobes of the pulmonary arteries. That is all that my scan says. Large Saddle PE; and it says no pulmonary infarcts, which is a good thing from what I've read.
Well, continue to push for answers. I think CTED and CTEPH are under diagnosed. A normal CTPA scan does not rule those conditions out. That is information straight Dr Nick Kimm from the aforementioned team at UCSD. Did you have an echocardiogram at the time of the acute PEs? If so have you got any evidence of pressures in the right heart? If the numbers are high (mPAP over 25 mmhg) then that can indicate the likelihood of developing CTEPH. Sorry, it sounds as though I want you to have CTEPH!
I didn't have health insurance when I was in the hospital. so they did the bare minimum for me. They didn't run an echo because my EKG was normal. Usually an enlarged heart will show up on an EKG. My clots were stable, as I did not have rapid heart beat, or low blood pressure. I was stable for the most part, so they just patched me up and sent me on my way. I'm scheduled for a VQ scan, but the insurance has not approved it yet. So here I sit waiting for the approval. I hear that a VQ scan will show all clots; both old and new, and even clots in the smaller vessels. I'm hoping that will give me some answers.
I might have told you this, but I had a whole bunch of these tests including the VQ test. The one test that was positive was the six minute walking test. I have been having SOB for maybe two years (nothing like you have). Since I have been anticoagulation, my breathing has improved quite a bit. My rheumy puts it down to "micro clots" that are not seen on the scans.
Although, the VQ test wasn't completely normal. There were no clots, but some evidence of obstruction. I'm just happy the anticoagulation has helped my breathing.
Most of the time I can't even walk fast enough to get out of breath, but lately my heart has been racing just from walking up the stairs. I also had the shortness of breath yesterday at the store. It's weird, kind of like I was having sleep apnea while walking.
The ability to reply to this post has been turned off.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Low lung capacity/FVC 61%
Spirometry
