After looking for pulmonary hypertention (PH) since 2010, the last echo showed a significant increase in pressure. My doctor didn’t specifically say I have PH, but he added it to my list of conditions. It also appeared on the list of “what ails me” when I was in the hospital. Since March or May the following symptoms have become more frequent:
Short of breath
Low oxygen saturation
Dizzy or lightheaded
Heart racing or pounding
Swelling in extremities / retaining water
This doesn’t feel like asthma. I talked to my doctor about it today and he suggested pulmonary rehabilitation. I think that’s a great idea, but am not confident it’ll fix everything. I have had a long string of exacerbations, infection, exacerbations, hospitalized, more infections, etc. So yes, I have had problem after problem this year. What’s been most concerning is how everything wears me out and leaves me panting. Yesterday I put my pulse oximeter on and went outside to get the mail. My oxygen saturation went from 95% to 89%. I repeated it today and went from 95% to 87%. We’re not talking about a hike or any sort of elevation here. I’m just walking at a normal pace to the end of my driveway and back.
The only thing that seems to really help is my CPAP. If I’m struggling to breathe and feeling a lot of chest pressure/pain, an hour or so on CPAP will give me some relief. The past seven days I’ve spent an average of 12hrs a day on CPAP. I don’t know what I’d do without that machine.
I talked to my doctor at UPMC and they want me to see someone at the Pulmonary Hypertension Center there. Unfortunately I probably can’t get it paired with my appointment next week, but I think it’s a good idea to see a specialist. I just need to be able to function without feeling like I’m gonna keel over. In the meantime I’ve been doing a lot of reading and making some new online friends.
For as much as I love hanging out, watching movies and studying the finer points of The Big Lebowski, you’d think I’d have no problem with “taking it easy.” I’ve been sick solid since mid-May this year. I’ve been to the hospital four times, made way too many calls to my doctors’ offices, taken five courses of anti-biotics and if all the steroids I’ve been taking were metabolic I’d look like Schwarzenegger from Terminator 2. You’d think this cycle of almost getting better and then trying to get back into what I shouldn’t be doing too early would have stopped by now, but I’m a bit of an idiot at times.
A few days ago I decided to just stay home from work next week.
It was about the time I thought I was doing ok and then no matter what I did my lung function kept dropping below 40% landing me back at the hospital on Thursday. It was interesting to see how seriously the hospital staff took me showing up again. While they were obviously trying to make sure I didn’t become worse, I’m sure others were trying to make sure they hadn’t released me too soon. I ended up bouncing back fairly quickly and got some of the advice I get every time:
Don’t forget to take your medicine – taking medicine is like a part-time job for me
Don’t be afraid to come back if you need to – that’s happened twice this summer
Try to avoid your triggers – this is my other part-time job
Try to take it easy – sure, that can’t be hard to do
Yeah…taking it easy. When I feel super awful I never leave my bed. When I feel just slightly less awful I make an attempt to get out of bed and live on the couch. While limiting my activity might sound like exactly what I’m doing, little things like getting more water, swapping a dvd, getting up to use the restroom, answering the door – these can all be way too much. One thing I do pride myself on is pushing myself a little every day no matter what my current breathing condition is. Some days that’s picking up the living room or doing laundry. Other days it’s me walking to the mailbox and back. On really good days it’s parking a half mile from my office and riding my bike after work.
Tonight a friend of ours came over to watch The Newsroom and I had been on the couch for hours. Even after seven breathing treatments today I start feeling bad out of no where. With all my “taking it easy” I’m now sweating, PF has dropped by 100 and my O2 saturation is down 5%. So I take another treatment and ride it out. An hour later my body has mostly chilled out. The coughing started and I decided to just take some cough syrup instead of letting it get bad. Now I’m back on the couch watching Anchorman (thinking about what a Newsroom/Anchorman mashup would look like) and wondering how late I’ll be awake tonight. I’m wheezing out of nowhere, more awake with the medicine I’ve taken and the only real reason I have for all this is nocturnal asthma. It’s just one of those things I deal with on a regular basis.
To be fair this is probably the best I’ve been in a while, even though I don’t feel good at all. It’s weird how “normal” changes over time when you never feel quite up to par. Once you get a little better you may think you’re a million bucks only to be reminded three months ago you would have been seriously concerned with this million dollar feeling.
A couple years ago I had to stay home from work for three weeks – doctor’s orders. My lung function improved 300% over that time period and I actually felt “great” for most of that hiatus. I’m not planning to stay home for almost another month, but this next week will be a great start in the right direction. At least I’ve been able to buzz through some HBO series and really beef up my Netflix ratings. That has to be worth something, right?