I hope this post isn't too long, and that someone can help me either come to terms with my diagnosis and next steps or possibly provide some other helpful information I might be able to use as I figure out what to do next. If nothing else, maybe someone else has been through something similar and might benefit from my story.
I am 52 years old. My most recent breathing test % Predicted -- taken last week at my Asthma doctor's office in the midst of either an extended exacerbation or (possibly) a virus or infection -- were:
FVC: 60%
FEV1: 42%
FEV1/FVC: 70%
FEF 25-75: 17%
PEF: 64%
My asthma doctor said, "Well, you are in a spiral that ends in death, and it is irreversible. Nothing we've tried has worked, and you have now stopped responding to bronchodilators. I'm referring you to a pulmonologist who saved my mother's life. I don't know what else he can do for you, but maybe he knows of something surgical that might help you. Meanwhile, here's a prescription for another antibiotic and another 10 day burst of Prednisone. I'll see you in a month."
The pulmonologist he referred me to has yet to call me back, fyi. I plan to call tomorrow to see if they can confirm they received his referral and find out if perhaps they're simply not taking new patients right now.
Meanwhile, I have taken the rest of the year off work with my boss's blessing (using all my available sick leave plus vacation to do so) in order to try to make changes and decrease stress as I try to improve. I'm feeling much, much better than I was a week ago even though I decided not to take the antibiotic or Prednisone burst (3rd antibiotic in 6 weeks and 4 Prednisone burst -- I needed to give my mind and body a rest).
Some history: I started smoking when I was 10 years old, and I still smoke. I have tried to quit countless times and I always, always fail (greatest success lasted just under 5 days with patches + gum). I smoke about a pack and a half a day, always under the vent hood in my kitchen with the vent on full blast -- I work from home, so some days I smoke more than others.
In 2010 I came down with your basic, run of the mill upper respiratory infection. I was sick for about 5 days, then recovered easily -- but became sick again about 2 weeks later with the same thing. This continued for about a year and a half. During that period, the following also happened:
1) I awakened one day to find both feet swollen to twice their normal size, along with pain and weakness in both legs. My PCP referred me to both a rheumatologist and an oncologist for work ups, but my only unusual test result was an elevated white cell count. Ultimately, the only diagnosis I received was that I needed to do a better job of managing my anxiety.
2) Around the time the swelling and leg pain/weakness went away (though it still comes and goes) I started getting terrible muscle cramps in my hands and feet -- cramps of a type I've never had before (they really twisted me up). These progressed to the same types of cramps in my back and diaphragm. Again, my doctor found no cause. I've continued to get these off and on since. Also odd was mouth sores and general extreme dryness - dry mouth, dry eyes, dry nose - that always seemed to herald the return of the leg pain.
3) Also during this time, as my more or less constant chest infections got worse and worse, I asked my doctor for a CT scan. It was clear except for a small amount of peripheral emphysema. My doctor did a breathing test in her office, but did not give me the results (so I assumed they were normal).
4) A few months later I was hospitalized 3 different times for what ER docs thought was a heart attack -- but which testing in the hospital showed was nothing. A follow up with a cardiologist resulted in a hearth Cath that showed I had an inflammatory blockage in an artery leading to the front of my heart. No treatment was given aside from a prescription for a daily aspirin, and I was told it would either heal closed or heal open, but that the surrounding blood vessels would compensate for the blockage.
5) In 2012 my doctor called in a panic because she realized nobody had ever called me with my lung function test results which, she said, showed both obstruction and restriction. She referred me to a Pulmonologist as an urgent case, and told me the results were life threatening.
6) The Pulmonologist did a CT scan. He told me the CT scan he took showed I had "smoker's lung", and moderately severe COPD. He spent the rest of the office visit berating me for smoking, telling me I was "playing some kind of game", and that I was killing myself. He sent me home with no treatment plan.
7) A few months later I checked in to National Jewish (in Denver) for a week's worth of medical tests. Their tests showed I had diffuse nodules dispersed all over my lungs ranging in size from 2mm to 4mm. I was told they were from smoking and would only go away if I quit smoking. The COPD diagnosis was confirmed and I came back home.
8) 6 months later, in mid 2014, I was too sick to work. Thinking I was dying and that there was no treatment available, I quit my job. A week later I burst most of the blood vessels on the surface of and around my eyes during a coughing fit. A chest X-ray taken at the time showed I also had 5 non-healing rib fractures and a fractured facet join in my spine -- all from coughing so much over the previous several months.
At this point, I was desperate and turned to my asthma doctor (who I had not seen in a few years) for help. I explained that I no longer believed I was capable of quitting smoking and that I understood I was probably going to die. I asked him if he could prescribe anything to give any kind of symptom relief. He sent me home with Hydrocodone cough syrup, oxycodone for the pain I was in from all the rib/back fractures, 2 antibiotics, a nebulizer with DuoNeb, high dose Prednisone, Symbicort, and another inhaled steroid I've forgotten the name of.
Within 6 weeks I was well. Within a year my breathing tests were almost normal. A follow up heart Cath showed the inflammation had cleared with no blockage or plaque build up of any kind. A follow up CT scan was 100% normal with no trace of either the emphysema or nodules multiple previous CT scans had shown. Within another year I had ceased taking the inhaled steroids and used the DuoNeb and rescue inhaler only, sometimes not even using the full prescription every month.
But then I went back to work and everything started going downhill again. And now I seem to be back at square one. Per my asthma doctor, my breathing tests are still better than they were in 2014 -- and a recent CT scan remains normal -- but my stamina is gone. I get out of breath going to the grocery store, doing housework, walking any distance or carrying any weight.
Despite all this history -- and, seemingly, reason to hope my lung function will improve again -- last week was, indeed, the first time I did not respond to a nebulizer treatment in my asthma doctor's office. I felt that it does still help me at home, but it certainly did absolutely nothing to change my breathing tests. Also, though I do feel much better, I still sound terrible and am continuing to have "asthma attacks" (for lack of a better understanding of what's going on) off and on throughout the day and night.
I understand that because of my smoking history and breathing tests this is probably COPD -- and I also know I'm going to have to quit smoking if I want to live (and possibly even to get adequate medical care). But what if this is something else? Autoimmune disease runs in my family, and despite two different comprehensive workups in the past that came back negative, I still worry that we're missing something.
Is this in any way a normal way for COPD to progress -- in other words, is there such a thing as COPD remission (Is that what happened a couple of years ago? Can it happen again?)? Or did those years weaken my lungs even further -- did my ridiculous inability to quit smoking or follow up with a different Pulmonologist lead to this now, despite a chance to change the outcome, being severe, irreversible COPD? And are the other symptoms -- the swelling, leg pain, muscle cramps, tendency to break bones (I've broken both a shoulder and a foot after simply tripping and falling at home in the past couple of years) -- are they from COPD?
I don't recognize this body anymore and I feel that it's become my enemy. I am pretty down right now, still 100% sure I'm incapable of quitting smoking but still trying (and failing -- today, so far) to quit. I never thought my life would boil down to something so small and restricted as it is right now and I hate this. I have to believe it gets better than this, but I am really worried about finding a healthcare provider that will work with me (and really dreading yet another lecture about my smoking -- as if I even need one!).
Any information, and certainly and support, would be most welcome.