Friday, October 11, 2013


Every now and then I'll think about which organ hasn't been affected by this illness. The only organ that hasn't been affect are/were my lungs.

When first ill I had air hunger. Because I'd been staying up in Guerneville during the week while doing my post-doc at Kaiser, and had an unusual bug bite, my M.E. doctor at the time treated me for lyme and Babesia. The air hunger went away after a long course of Mepron.

In 2004-2005 I had a series of illnesses including pneumonia, bronchitis twice, strep throat, and the stomach flu. Kaiser took chest x-rays which showed pneumonia and then took another set of chest x-rays 6 months later when I had another bout with bronchitis.

At the time I was working 3/4 time at an outpatient crises clinic doing psychiatric evaluations (and writing my dissertation) to determine appropriate level of care. It was in a small building with water leaks. We had to put buckets around for the water to drip into. Everyone who worked there was getting sick with bronchitis and lung infections. Because the company wouldn't do a thing about it one of the staff made an anonymous call to OSHA who came out for an inspection and ended up fining the company for inadequate ventilation among other things. Clearly there was a mold issue.

In December 2005 I received a letter from my doctor stating I had COPD. I was alarmed, did research and ended up calling an organization to ask some questions. The woman who I spoke to was quite helpful and informative. She told me based on what I was telling her that I could expect to start having symptoms in about 8-10 years.

I've had bouts of waking up feeling congested in my chest (I'm prone to lung infections and bronchitis) but this week the symptoms increased. I brushed it off until yesterday when I was clearly having difficulty breathing. I could feel a rattle in what felt like the lower lobes of my lungs. There was a sensation of having congestion but I couldn't bring it up. I was coughing a lot but couldn't get a good breath of air. I started feeling light headed and was quite fatigued, much more so than normal. I couldn't help but notice that I was at the 8 year mark so my mind went back to the conversation I'd had 8 years prior.

I decided to email my M.E. doctor before contacting a local doctor. I told him I'd been diagnosed with COPD and that one spirometry test was normal in 2006 but the second one in 2009 showed mild abnormalities that the technician brushed off (which was fine with me).

One thing I like about having an M.E. doctor is that he can differentiate between what are normal M.E. symptoms vs what needs further investigation. He decided this required further investigation and wrote an order for testing including the following:

     Pulmonary Function Test Before and After with Bronchodilator

     CO2 Diffusion Capacity

He said to take it to the local hospital to get the tests done. I called the hospital's pulmonary testing unit after 5 on Thursday and left a message similar to the one I left for my M.E. doctor. They called back first thing this morning. The woman said that my doctor would need to send a referral. I explained he was a couple hours away and that he'd written an order. She said that it sounded like I needed to be seen the earlier the better so she asked for my doctor's phone number. After speaking to my doctor's assistant she left me a message stating they are going to "expedite this".

The troubling thing about my this symptom is that its worse upon waking then I spend the next couple hours coughing before it finally eases up. I'm also getting hoarse at times but I think its from being exhausted after a busy week socializing.

I've also been having chest pain and heart palpitations. The heart palps have been so frequent and persistent this week that its exhausting. I'm not sure why.

I would skip this testing because of money but given there's a chance it could be COPD getting it diagnosed and then starting treatment is important so as to slow down the progression. COPD is the third leading cause of death in the US and can develop as a result of smoking or pollutants.

The pulmonary doctor that I saw in 2009 said I was too young to be diagnosed with COPD. I agreed.

I'm a bit concerned but am also so exhausted I don't have the energy to worry.

I looked up "air hunger" in Erica Verillos excellent book on M.E. It can be common with M.E. but the pattern described is different than what I'm experiencing.

It's probably nothing but just in case...

Will post when results are in.  


Lee Lee said...

It's never ending ... it seems like just when you already have every bloody thing possible something else comes along to surprise you. I guess our bodies are so damaged that its no surprise really that we are very susceptible to every kind of illness. Hopefully it is just an ME thing. I know lots of us do get air hunger and coughing etc so fingers crossed its just that (as if that wasnt enough anyway!) xo

me/cfs warrior said...

I know what you mean Lee Lee. I'm sort of used to it. This whole lung thing predates my illness. I'm hoping its an M.E. thing. That would be the best outcome. If its not I'll deal with it. I'm stronger now thanks to you guys.

I agree about our damaged bodies. Our immune systems are so messed up lots of things happen.

I think the hoarseness is due to overuse, lol. I've been socializing and going to support groups this week and haven't talked that much in ages.

Lee Lee said...

Yes I really notice it too if I have a week where I am talking more than usual. Maybe a small price to pay for having some fun and being social :) x