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.
If you suffer from sleep apnea or a similar conditions which requires you to wear a CPAP/BiPAP/APAP, it is very important you do. It always shocks me when I talk with friends who are supposed to be wearing their mask at night but instead choose to put it in the closet, etc., because they don’t like it. Personally, I’d rather not sleep than sleep without my CPAP and last week unfortunately proved that for me.
It was Saturday morning/afternoon and I was out in the living room watching TV. The next thing I know, Liz is yelling and yelling at me to wake up. I had unintentionally fallen asleep for 90 min or so on the couch. Little cat naps aren’t supposed to be a big deal, but they are for me. I felt awful and was having trouble functioning. I made it to my room and got my mask on. Later that evening I walked to the kitchen to get some water and my O2 sat was down to 81%. I then spent three of the next four days like this:
In addition to getting nothing done and missing some work, I also now have a sore on my face from where my mask rests. I’ve gotten red marks before from having my humidity turned up too high, but this is worse. I’m sure the best thing for it would be sunshine and open air, but I have to put my mask back on every night. My CPAP cleaner does a good job of sanitizing everything, but I’m not sure what to do about the sores on my face. I am thankful my oxygen levels are back to normal and I’m not constantly short of breath.
Things were starting to get better for me the past few weeks as I saw my daily prednisone intake once again drop to 20mg and then 10mg. I tried not to think too hard about getting off this love/hate drug as this whole summer I would get off this steroid only to get back on it or need to up my dose when it became too low. Things almost seemed different this time and I thought I might actually get better before “Fall” hit. I was wrong.
The weather started turning, mold counts were becoming ridiculously high and then the dreaded combining/harvesting began. Living in the Midwest means you’re probably close to some form of agriculture, but I’ve always lived in sight, if not immediately next to fields. When the harvesting begins there is a thick cloud of debris and dust that fills the air almost looking like smoke or dense fog. All this stuff doesn’t really help anyone breathe, let alone someone like myself with respiratory issues.
I watched my peakflow averages drop 20-30% and my oxygen levels were consistently getting lower. It wasn’t really until this past week when I passed out from my oxygen becoming too low that I realized I couldn’t keep ignoring this. Liz really wanted me to go to the hospital, but I somehow convinced her not to take me. I instead opted to get a hold of my PCP the next morning who got me a Kenalog shot and upped my prednisone taper from 5mg/day to a 40mg taper. I think I’m experiencing side-effects of Cushing’s syndrome, but it’s nothing I haven’t been able to deal with so far. The worst for me is lack of sleep and inability to think clearly most of the time. I’d really love to stay home from work and rest, but I can’t afford not to work and the FMLA stuff is a much bigger pain for me than it’s ever been in the past. Liz stopped by with Chuck the other day at work and took a picture of us. I was a little shocked to see how awful I looked and that was me attempting to be cheerful. As much as I try to hide how bad I feel, it’s obvious I’m not doing great. I just keep checking my O2 and peakflow numbers when I feel worse because the last thing I need at work is to fall down, pass out or go into a full on attack. It would really freak some people out.
My local pulmonologist has been saying I could be on a maintenance dose of prednisone for a long time. I was really hoping that wouldn’t happen, but it’s starting to look more like a reality. I emailed my new lung doctor to update on what’s been happening and she apologized for suggesting I taper as quickly as I did, which my local doc agreed to. It’s not like it’s her fault and this occurred over the course of a month, not a week or days. I’m heading back to Pittsburgh in a few days. While I’m still on the dreaded drug, it is less than I was last visit. Hopefully I can get some suggestions on treatment or ideas as to anything else that could be ailing me.
Most of the time I feel like I’m able to balance my breathing with general living. I may have to avoid going places or participating in certain things, but with the exception of flare ups, I like to think I do an ok job. This summer has been the exception. I was doing pretty well this past winter and spring until May. Since then everything has been a bit of a blur. I haven’t been to work in weeks and I’m also taking an online class at the moment.
I haven’t “been to school” for almost 10 years so while it’s a little bit of a culture shock getting back into the groove of things, it’s also not too bad because I don’t have to physically show up to class somewhere. Most of the time this entails logging into the course management system at the beginning of the week to find out what discussion questions I want to answer, and then coming back later in the week to respond to my classmates. Now that we’re into the semester there are more substantial assignments due, like the paper I’m getting close to being a week late on turning in. I didn’t actually get a late start on the thing, I had my topic and key points figured out and found 20 peer-reviewed academic articles to use as sources when I was only required to have 5. I of course had grandiose plans to knock it out on the way to Pittsburgh and while I was there, but that obviously didn’t happen.
I think one of the reasons I’ve been having trouble making significant progress is the discussion questions don’t take a whole lot of brain power for me to answer. I read the chapter(s) from the required textbooks, check out the question, think about it, re-skim a section or two of the text and type away. Writing this paper is requiring some higher-level brain function which doesn’t play well with my short attention span due to:
Constantly wishing I was lying down instead of sitting up
My oxygen saturation levels dropping whenever I’m up and moving around
Watching the clock to make sure I don’t wait too long before taking my next dose of meds
Is this a…what day is this?
Trying to work on the paper in Pittsburgh was almost laughable because all day every day my body was being stressed out doing what I like to call respiratory acrobatics. Even if someone didn’t have trouble breathing, I think a normal person would be worn out from all the huffing/puffing, inhaling/exhaling, breath-holding and what have you. To top it all off, I had to refrain from taking most of the maintenance medications that keep me going day after day. Then every time they degraded my breathing to the pre-established stopping point, I’d be pumped full of rescue medication that gets me back to an acceptable level but also comes with a list of side effects that aren’t conducive to critical thinking. I was telling my friend Steve I was in a constant state of sweaty or extra sweaty the whole time. Even after we were finished at the hospital for the day I continued feeling like I was still in a constant state of “cool down” into the evening.
The good news is I’m still slowly getting better. I was given the option to start tapering my prednisone early but decided to finish out my current dose before dropping down. It was a good decision because just going to the grocery store with Liz yesterday and walking up and down a few isles left me sweaty, worn out, and having some serious trouble getting to sleep last night. Even now, I’ve been lying down for the past 20min, my resting heart rate is over 100 and my O2 is 93-95% which is better than sitting up or moving around. I’m about halfway done with this paper and am hoping to wrap it up tonight or tomorrow. I’m guessing I should probably get my in-house composition expert to check it out before I turn it in.
After my 3rd PCP visit and kenalog shot, I got a call in to my pulmonologist’s office about an acute visit. Unfortunately my rock-star lung doc is on some much needed vacation and fortunately I was able to see one of the NPs this morning. They aren’t sure exactly what’s going on, but I’m at least being taken seriously. After I finish the ER Z-pack, I’m starting 10 days of Levaquin, and my prednisone taper is being extended and lowered by smaller increments. Next week they’re going to monitor my oxygen saturation at night to make sure the CPAP is working properly. I think I have enough prednisone now to start my own pharmacy. I’m just hoping I can continue to get at least a tiny amount of sleep.
On my outing today:
Had to stand in line for check-in at lung doc while the receptionist gossiped on the phone and kept another old woman with oxygen tank waiting
Another old woman, with oxygen tank, cut in line while I was waiting to check in
Some maniac in a Cadillac slammed into a Suburban while crossing 2 lanes coming within feet of my car and hitting another car in the hospital parking lot
I got lots of stares at Taco Bell while getting some tacos for lunch
I had to stand in line at CVS for about 20 min
A woman cut in front of me to buy M&Ms cause they’re more important than my prednisone
Some other dude tried to cut in front of me just because
I thought I wasn’t going to be able to walk out of CVS without sitting down for five minutes
I’ve had a rough morning and I still hate The Eagles. Four puffs of maxair, a double abuterol nebulizer and an hour of sitting have helped a lot. I think it’s time to start a movie.