Possible Restrictive Lungs Disease.

Hello everyone. I'm writing this post because I am deeply concerned about failing a pulmonary function test. A bit of history on my situation is as follows. I have had chest pain for many years, I just pretty much ignored it. That was until 2012 when I had a work related accident that caused me to have a massive DVT and a Large Saddle Pulmonary Embolism. It seems like after this incident, my health has been on a steady decline. I have been complaining about mostly left-sided and some right sided chest pain for the past three years. My doctor continued to tell me that lungs don't feel pain and that I should not be having these types of problems 3 years out from my blood clots. I did have substantial shortness of breath for the first two years following the lung clots, but this was due to the recovery process. I have been back to the ER a few times complaining of chest pain and nothing has been found.

Well, after complaining to my doc again, he sent me for a sleep study. The sleep doctor decided to send me for a Pulmonary Function test based on my complaints and medical history. As it turns out I have severe restrictive lung function. They said it is not COPD, but severe restrictive lung function.  They also tested me again today in the office with that tree program. The one where you blow until all of the leaves on the tree disappear. I failed that one as well. Can these tests be wrong? I tried to inhale and exhale a huge amount of air several times at home, and I can't seem to do any better here than I did during the test. I actually get dizzy when I breathe in deep and then breathe out rapidly.

I have had two CT scans in the past four years and I'm scared to death to do another one for fear of cancer. The first CT scan showed the large blood clots, and the second one showed a mild dependent bibasilar something and 1 non-specific hilar lymph node. The mild whatever thingy is a tiny collapsed lung, and the other thing is just a 1.1 CM lymph node. Can a CT scan change that much in the past two years? Did they miss things because they were only looking for another blood clot? Both CT scans were in the ER to rule out blood clots, so maybe they were not looking in the right places? I happen to think this is CTEPH. which is a form of Pulmonary Hypertension that is caused by blood clots in the lungs. If this is the case, they need to do a VQ scan, because CT scans are not good at finding chronic non-occlusive blood clots in the lungs.

Any how, what do you guys think? Is it serious? Should I get the third CT scan? Should I just ignore this? I really don't know what to do. I already have several diseases that are jacking me up. I also have mild to moderate sleep apnea where my oxygen levels stay between 81 and 89 for 91 percent of the time that I am asleep. Is it possible to blow such terrible numbers two times and it be a fluke? I do get shortness of breath and dizziness; but my lungs sound clear the doc said, and I do not have any crackling, or any other signs of lung problems. I also do not have any type of cough. The truth be told, I feel like a 91 year old man on most days, so it is hard to say what is causing what when it comes to symptoms. All of your advice is greatly appreciated.

[stone-UK]

Hi

It seems further testing is required.

Some light reading, there are four pages.

webmd.com/lung/obstructive-...

[Hidden in reply to stone-UK]

Thanks for the link Stone. I really appreciate it.

[Toci]

I am wondering if the pain is related to the collapsed lung? I know from experience how painful that can be.  I certainly think they need to investigate and find the cause rather than anyone guessing. Good luck.

[Caspiana]

Hello. I'd say get further testing. I know it's scary. I am always scared of what else they are going to find and it took a long time for them to diagnose my condition. I really hope things get better. Please don't give up. Sending many happy, warm thoughts. 

Cas xx

[Martymack69]

For the life of me, I don't understand why some doctors insist that the lung feels no pain. There are times when I cough that the pain sends me reeling. I don't have any answers but just wanted to say good luck going forward with high hopes that you will find answers and relief. 

Big hugs,

Martypants

[bayleyray-uk]

My advice would be get further tests done, don't ignore symptoms better to give a big sigh of relief if everything turns out ok (and I hope they do) than possibly allow things to deteriorate.

Hope things sort themselves out soon.

Sue

[Aurorastar_]

Good morning, I just came across your post after searching "restrictive lung", as myself am waiting for a final answer to be told if this is what has been causing my shortness of breath the last few months. I have spent countless hours researching, until finally I decided I am going to continue pushing the doctors for answers (nobody knows your body better than you) and I know this is hard to do, (I am still struggling with it) but try to not let this disease consume all of you.. All of your thoughts.. Get out and still enjoy the days you have! Don't beat yourself up about the failed PF test. (I failed too) get the mindset that you've already made it past a ton of other stuff, and you're going to continue to fight for the best life possible! I do wish you the best, please keep us posted! 

May God bless you! 

[Hidden in reply to Aurorastar_]

I am not too shocked. I already have a severe blood clotting disease and had large blood clots in my lungs four years ago. I am used to being the sick person. I have diabetes and some other health issues. I am however not happy with the prognosis for restrictive lung disease. Also, steroids will make my blood sugar even higher and mess with my Warfarin therapy. It's going to be a huge juggling act if I end up needing Prednisone treatment. I am kind of happy that it is serious. I have chronic pain from a DVT that never goes away. I can't really see living another 40 years battling with doctors and pharmacists over being on pain medication. They already look at me like I am a liar about the pain. I want to be out of pain and out of this non-functioning body. If I can get 8-10 more years, I will be content with that and live my life as best as I can. If it is not as serious, I might spend the rest of my life helping people or animals. I will make the rest of my life count for something. Any how, I hope you keep your spirits up. Some things we have no control over like our own bodies, but we do have control over how we respond to these things. Thank you all for the support!

J