Hello, this is my first post and Im just sharing my story... I have had severe breathing issues since Dec 15 2011 and have had every test known to man done with absolutely no results. Every test that I have done with exception to lung test has come back completely normal..... I am 35, 225lbs, very, very active in all sports no medical history, no family medical history....Here goes.
Dec 11, 2011 - I help a friend take down an interior wall of his 60 year old house. The wall is a plaster wall containing no insulation. We had dust masked on but they did nothing as the dust was so thick you couldn't see the other side of the 10x10 room. (please read on before thinking about asbestos)
Dec 15, 2011 - I start feeling backed up. I usually have a bowl movement twice a day and started getting constipated.
Dec 20, 2011 - Still no bowl movement or passing of gas... Nothing at all! My stomach is starting to become very large. I could put a pop can on it while standing up... Gross.
Dec 28, 2011 - Still no bowel movement or passing of gas. I went to Emerg and they gave me 3 enimas over 12 hours with no results. They sent me home with PEG to drink to get things moving. The next day I drank two liters of hell and still nothing...
Jan 2 2011 - I took some Pico-salex and finally gave birth to this blockage. What a relief!!! After almost 3 weeks with no passing of anything.
Jan 7 - I'm starting to feel shortness of breath. I'm playing hockey and can really feel that I can't breath when exerting myself. I went to Emerg after trying to play for the first time in about a month but they can't find anything wrong. Oxygen Saturation is 98% and X-rays come back normal. They send me home.
Jan 8 - The Emerg Dr calls my cell and says the radiologist noticed that there is some pleur effusion. He says to come back and get more tests done. I go back that day and they do more X-rays. Emerg Dr is sending me to a resporologist.
Jan 16 - I see the resporologist and she orders a few breathing tests that come back showing my FVC numbers are at 61%. After doing the test they give me an inhaler (ventolin) and do the test again to see the numbers but they are unchanged.
Feb 9 - Still can not breath. I can feel my lungs are not opening. I wake up at 3am and can't get a breath. My wife calls 911 as my skin colour is grey and I'm gasping for air. In Emerg they can't find anything wrong except the pleur effusion. They send me home 8 hours later.
March 16 - After seeing my family Dr and resporologist a few times and having dozens of blood tests done with no results I still can not breath. I'm at the point that I can not climb a flight of stairs with out being completely winded. My resporologist ordered a CAT scan with die to see what going on but everything looks normal. The pleur effusion is still there but getting smaller. She ordered a biopsy of the fluid.
April 10 - I go to the hospital to have a radiologist remove the fluid but the fluid is so small now that he cancels the procedure as its to risky even for him. He said he might poke my lung and deflate it if he tries. My breathing is still brutal. I have not done any exercises or even worked as I cant take a full breath.
May 23 - After seeing a second resporologist for a second opinion and still having no relief she orders a bronchoscope done to see what's going on inside. I had more X-rays and blood work done with everything being normal. They found that I have a small inflamation in my body but don't know why. I stated getting a "rub" in my lower chest that moves. Sometimes it's on the bottom right and sometimes it's on my lower back. This specialist thinks its something to do with my bowl obstruction.
June 11 - I have the bronchoscope done and everything looks great. No results. They send off cells for examination but they think they will come back normal and they did. My breathing is still the same. I have had more breathing tests done and my FVC numbers are at 71%. More blood work and everything is ok. The second resporologist orders a colonoscopy and endoscope done to make sure everything is ok. My bowl movement have been irregular but I am going 3-4 times a week.
July 19 - I have the colonoscopy and endoscope done but everything looks great. They send off a few biopsys to pathology but everything comes back normal. The gastro Dr says the blockage and breathing are separate things... I disagree.
Aug 9 - I see the first resporologist (who has been kept in the loop) and she wants an open lung biopsy done to check for fibrosis, sarcoidosis, and a bunch of other things. I have had more blood work and X-rays done. I had another CT scan done with everything looking fine except the pleur effusion and inflamation. I have had no symptoms during all of this except the breathing.
Open lung biopsy pre op is scheduled for Sept 4. My breathing has not changed. I can not take a full breath and the rubbing is brutal. My wife can hear it when she lays on my chest. It's horrible. I'm starting to get a little depressed with looking online at symptoms and every second day I'm diagnosing myself with something new.... I need to stop reading other ppls problems as I'm becoming a hypercondriac.
So I had some samples from my friends house taken to the local university for testing of asbestos and mold but even if it was asbestos I was breathing in back in Dec 2011 it would take years to show up..so the Dr's say. I am at a loss and am in contact with the Mayo Clinic. They want me to get the results from the open lung biopsy first to see the results as its already booked and I'm Canadian so it's free. If there's still nothing I will go the Mayo Clinic way... Money is not a concern at this point as I just want to get a direction to look in.... I think a diagnoses of a dieses would be better than nothing. At least I could start treatment.
I apologize for my verbal diarrhea but I guess im just venting as much as looking for answers. I may have left out a test or two that was done but everything has come back normal on every test... Sigh....
OMG...I can only relate to knowing how it would feel to not be able to get in a breath (asthma). I cannot even imagine how it would feel to not get any relief after having hope with each test.
Have you had any other tests such as a DNA spit test for even a hint of possibility.
Curious if you're on any supplements? Any OTC medications, etc?
Did you have allergy skin testing done?
Did you have environmental allergy testing done?
Did you have an MRI?
Where exactly is your bowel obstruction...small or colon?
Have you had a heart echo done?
Is your breathing worse when standing, sitting or laying down?
Sorry for all the questions...while there are many reasons for pleural effusion...you being as young as you are with it happening so quickly and for so long with no results, going to the Mayo Clinic would definitely be a choice I'd go for as well.
It's all a matter of perspective!
Hey Quincy... No I am not on any supplements, or medications. I was using Symbicort 200 but it wasnt doing anything.
I haven't done any skin allergy tests yet but I should look into it. I have never been allergic to anything but will look into it.
No I haven't had an MRI but if the CT scans and all the X-rays came up with nothing the Dr's said the MRI won't either. They tell me that the CT scan with the die injected in me is the tell all of tests... Which showed nothing both times.
I'm not sure where the obstruction was exactly. The X-rays showed an obscene amount of stool back at the first emerg visit. They still say the obstruction and breathing are not related... I still disagree.
I have had several tests on my heart. I did a stress test on the bike while having my heart tested back in March. I only lasted 8 min on the bike and could not reach my peak level as I could not breath. My heart looked great during all the tests though.
I did several of the spiromitory tests both standing and sitting. There was no change on numbers.
What I forgot to add in my original post was that in early June for 3 days I was back to my regular self. I could take a full breath without having any rub or feeling that I couldn't breath. I woke up on the fourth day and was right back to the same terrible thing. It was such a tease I was in tears... It was mentally devistated. The Dr's were puzzled and could not give any answers.
I will continue on my current path with the open lung biopsy and hope for something.... Anything.
I was checked for an upper hiatus hernia when the did the endoscope. I thought for a few weeks that I might have one and even had my family Dr prescribe Nexium just in case but the Endoscope showed no such thing.
I had two Echo's done on my heart and everything ok. I have had other tests done as well where they hooked me up with all these wires for 7 hours in the emerg and my heart was good.
No new bed or traveling of any kind...I have copies of every test and every X-ray and CT scan plus results on CD. These are being sent to the Mayo Clinic.
I have no other symptoms of any kind... No rashes, no caugh, no fevers, loss of hair... etc. The only symptoms I have is the Pleur Rub and not being able to breath.
I am involved in a lot sports from playing competitive men's league hockey to coaching my 7 year olds hockey and soccer. But unfortunitly I haven't done any of these since Dec 2011... That's the hardest part with all this when my son asked to go for a bike ride or go skating and I just physically can't do it... My quality of life is at 0... I've spent the past two days in bed as I feel I'm getting worse but have to wait until my appointments before telling a Dr... I've requested to be put into the hospital but they refuse as they don't think it's life threatening....
A few Dr's along this journey have asked if I'm depressed or get anxiety because they can't get results and think that's why I can't breath but after getting the speromitry results and seeing the numbers they know it's a physical issue.... Just to cross off the notion that it's stressed related I saw a physiatrist a few times and her reccomendations to my specialist is that it's not a "mental" issue.
I continue to see the physiatrist about dealing with a long term health issue that has helped a bit. I suggest anyone dealing with long term issues seek professional help in dealing with the day to day. It does help. I just cried for the first 20min of our first session as a release.... May sound stupid but it helped.
I've come to terms with my condition and will try to stay positive as I have a young family and can't afford to only think of myself.
Hi....I will certainly admit that your perspective is one I would have difficulty maintaining. I can relate to the support and process of therapy, and I think it's necessary to have a safe place where you can let emotions out and regroup your thinking. Not stupid at all...ever.
And your situation certainly isn't stress related.
Regarding asking to go into the hospital...rethink the necessity unless you need to be there. There are risks of what you can get over and above what you're dealing with. I think the Mayo is the best goal.
When's your next doctor's appointment and what doc exactly will you be seeing? When will you be having the lung biopsy done?
Please let me know how you're doing and what other tests you'll be having done. Don't leave any stone unturned regardless...
It's all a matter of perspective!
Have you checked Lab Tests Online? Do a search on there for pleural fluid analysis and check to see what's missing in your testing process so far. Since you'll be seeing the gastro doc and the thoracic surgeon in the near future...you might have something more to offer regarding possibilities.
One of the possibilities is autoimmune if nothing comes back obvious with any of the tests.
Just checking one thing...the pleural effusion didn't show up on the x-rays?
It's all a matter of perspective!
The resporologist have mentioned autoimmune... But still suggest I have the biopsy as it will tell a lot.
Yes the X-rays showed the pleaurl effusion. They saw it back in Dec in my first X-ray. They didn't biopsy it as it had shrunk and was nearly gone by the time I saw the resporologist. They were going to biopsy it with a radiologist but he canceled it because it was too risky for the small amount that was there.
They have tossed around Idiopathic Pulmanry Fibroses... Medical term for "I haven't got a clue"
I still think its something to do with the blockage back in Dec, and my inconsistent bowl movement... I am going to push the Gastro Dr to do more tests on Tues when I see her.
It's a shame it takes a serious hit to your health to realize what you take for granted and truly understand that without your health you have nothing.
Do make sure you have a good list of info regarding tests, hence the suggestion in my previous post.
I can see that possibly a blockage cause could put pressure on the diaphragm and then maybe the lungs, but a continuing pleural effusion seems out of the ordinary unless there's continuing pressure. The reason for the blockage and where is what you need to find out. But the c-scope and upper scope would have shown the blockage.
But, it could have triggered an autoimmune reaction in the lung if there was pressure in that area...causing a continued reaction.
I hope the biopsy will show results...definitive is easier than guessing.
Maybe rather than not taking our health/bodies for granted, we're appreciating what it can do when it works well. We just realise that fact more blatently when it's not. We're born of our family's/ancestors' genes...who know's what's in there once we're living, functioning and exposed to life's environment?
Thank you for sharing your situation, it's heartbreaking there's no solution as of yet. You being proactive in seeking information and support is a good thing.
Yeah, that perspective thing is frustrating...it's hard to see them all, or even want to venture into the process to do so.
It's all a matter of perspective!
Hey, I'm writing this as i sit in the surgeon office just finished our meeting. In the past 5 days my lungs and symptoms have all disappeared... It's very strange. I started taking some Health store Omega 3 fish oil once a day and started taking Zyflamed. It's an anti inflammatory that helps the natural cycle of inflammation.
I'm not sure if it's a coincidence or if it's these pills but I feel like I'm back to 90-95%! They are canceling the open lung biopsy as I'm feeling and looking much much better... I could not be happier. I spent all day yesterday riding my bike with my kids, went swimming for a few hours and went in a date with my wife for a long overdue dinner.
I will continue to see my resporologist with follow ups but I think I've kicked this... Still no answeres as to why it happened or if it will return but if I continue to feel like this...... "Jimmy crack corn and I don't care"
Thx again for your concern and if things change I will post something.