Doubting my diagnosis of COPD.

[blizzard2014]

I failed a lung function test two years ago and I have since received a bunch of conflicting information. According to the test I have low FEV1 and FVC with Over average TLC and 80 percent FEV1/FVC ratio with low DLCO. I have had a chest X-ray and one HRCT scan that revealed no abnormalities, and did not mention gas trapping like the doc suspects I have. I did have an echocardiogram that shows a moderately enlarged right ventricle but with normal ejection fraction and only borderline pulmonary hypertension with a PAP of 21.

I do have shortness of breath, but it is hard to gage because due to a chronic leg injury I cannot move fast enough to become short winded. I do occasionally catch my oxygen levels dropping when I am walking around. Sometimes to 88, 90, sometimes they will stay at 94-95 for a few minutes, then back to 98-99 when I sit back down. I had a six minute walking test and my oxygen level dropped to 91 on the doc's meter. It only stayed there for a few seconds and returned to normal after I stopped walking for a few seconds. I feel light headed and dizzy a lot.

I was discovered to have extremely elevated blood pressure a few months after the lung function tests, but only when standing. It is a weird issue. If I take Lisinopril and my Clonidine, my BP will be almost normal when standing, but only for 8 hours. Then my BP will shoot back up to 130/100 within a second of standing, and remain high for as long as I am walking around. But will go back to normal when sitting. I do not dose with Clonidine again because then it will go too low when sitting.

Perhaps the higher heart rates when standing and higher BP is what is needed to force oxygenated bloods into my organs. All I know if I feel tired all of the time and out of it. Recently I have decided to stop seeing these docs as the scans are normal. I don't understand how the lung function test can label me as stage 2-3 COPD, but my lungs look completely normal on HRCT scans. I did have a lot of recurrent chest infections when I was a smoker. I had at least one a year with the last major one being in 2009. I was hacking up yellow stuff for 8 weeks straight, but no more hacking up since quitting smoking 6 years ago. I get deathly ill from just one cigarette these days. The last time I smoked a cigarette, I was sick on the couch all day. So maybe there is gas trapping since I can no longer tolerate cigs.

I just don't see the point in seeing docs with normal looking lungs. Too much confusion and all of the radiation from CT scans is just too much. I had two other scans for blood clots and it's too much. Is there any scenario where you can have a severe lung disease and normal CT scan? Maybe I have a weird issue they can't see. They have me listed as a combination of restrictive and obstructive disease, perhaps one disease is blurring the lines of the other.

[Schmicter]

I suppose you can call it whatever you want. The medical field/industry calls it COPD. It is an Umbrella term and many symptoms fall into it, there isn't any one symptom...like air trapping... that always defines COPD. Except maybe SOB and/or low O2. For sure your O2 gets low, possibly the DLCO and pulmonary hypertension or some combination lung/breathing issues. Treatment from the medical field/industry actually might offer some relief of the symptoms, regardless of what you want to call it.

[Feelingblessed2013]

If it were me, I wouldn't stop seeing doctors. Something is causing your SOB, it could be the HBP. My best advice is; don't ignore the symptoms, find a doctor who can figure out what is causing all your symptoms.

[blizzard2014 in reply to Feelingblessed2013]

I know something is causing this. I'm going to get a new pulse ox meter just to make sure mines is correct. I was going into the 90's last night a few times and hovering around 94 for a while. I think I have lung damage from blood clots in the lungs, but again nothing shows up. It could even be exercise induced pulmonary hypertension since all of m symptoms are present mostly upon physical exertion. Just wish I knew for sure what it was.

[Feelingblessed2013]

Don't stop looking for the answers. Please let me know how you are doing.

[blizzard2014 in reply to Feelingblessed2013]

I'm not stopping. Just going to wait until things get worse. I have a whole laundry list of other illness that pretty much dominate the COPD issues. I have blood clotting disorders, chronic pain in one leg due to blocked veins and circulation issues. The autonomic dysregulation of high heart rate and extremely high BP when standing. Then there is the diabetes and having to use insulin every time I eat a meal that isn't meat and veggies. That's why I want to put some of this to rest for a while and try and focus on other things. The low oxygen is still happening when walking, but if it is not affecting me too much, I don't think there is a real reason to continue to check it all of the time.

My grandmother died of COPD and she never smoked in her life, so did my aunt who smoked 3 packs a day. She died in her fifties. I also have moderate sleep apnea but unable to tolerate the BIPAP treatment. So, many things are gunning for me. I almost had a nervous breakdown when I found out about the enlarged heard and the heart doc would not tell me how it got that way. I will ignore that too since my heart function is still good, but if I start to gain fluid in the legs and other issues, at least I know where to look for the cause.

All of this not having control of what's happening makes it hard to deal with some of this stuff. When I get my exercise bike I will see how low my oxygen goes when exercising if I can get going fast enough. My bad leg gets really aggravated with just walking, so hard to see how bad my low oxygen will go. Sorry for the rant. Sometimes I want to flush all of my meds and burn my medical records and go back to life when life was much simpler. So many people don't know how lucky they are to have their health. They never know until something happens to them.

[Feelingblessed2013 in reply to blizzard2014]

You're right, most people take health for granted until something happens.

I am seer sorry that you are having to deal with all this stuff. As far as the enlarged heart, hubby and I were told that mildly enlarged is a normal part of aging for some and as long as heart is healthy, it is nothing to worry about.

For the sleep apnea, have you tried the cpap machine? Up until this last lung surgery I used it every night. I am going to start using it again once I heal a bit and can actually sleep in my bed.

As for the possible copd, you know your body better than anyone.

[blizzard2014 in reply to Feelingblessed2013]

I have a moderately enlarged heart. From what I read, when the right ventricle becomes the same size of the left, they call it moderately enlarged. So the last step is severely enlarged. But doc said it is pumping strong so not to worry but I do.

[blizzard2014 in reply to Feelingblessed2013]

I tried the BIPAP. I have it here with high pressure setting of 20. That is what it takes to raise my oxygen levels above 88. I have an AHI of 19, with most events happening during REM sleep. On the sleep study, I get only 3-6 minutes of REM sleep per night. Also, my oxygen level remains under 90 percent all night, with a mean level of 88 and a overall low of 84. I hate the mask breathing for me. The one I have actually forces you to breaths when you do not breathe as I do have some central apneas lasting 30 minutes. So, if I do not breathe, the machine is set to a respiration rate of 11 breaths per minute or something like that. I will try again, but I am wired up all night especially after the pressure ramps up to 20. I can handle lower pressures, like 15, but that is not enough to help my apneas. It does nothing. I need the high pressure of 20 to remove all of the apneas and to get my oxygen up to a 92. I can deal with a lot of stuff, but not mechanical breathing devices.

[Feelingblessed2013 in reply to blizzard2014]

I am sorry you are going through all this.

[Singhawk]

I have been searching for answers to my breathing problems for nearly 20 years. All I get is conflicting answers and no help. Of course the breathing gets worse, so bad now I can barely walk a few feet. Never smoked! I am sick of all the tests, seeing different doctors, more tests, the same tests over and over, and not one thing has helped. I hear you! Good Luck!

[Dgtheel]

Do you see a cardiology dr? The enlarged ventricle could be causing shortness of breathe and high blood pressure. The heart has to work harder with those issues.

[blizzard2014 in reply to Dgtheel]

Dg, I quit seeing the heart doc because he herds patients in and out. He dismissed everything because my heart is pumping very strong. I think the heart is maybe not doing as well when standing. I know my lungs got messed up from the large clots. I just wish I knew what was wrong and not have to get all of those CT cancer causing scans.