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.
My allergies have been terrible, similar to everyone else around me, but thankfully my breathing hasn’t been extremely bad. I still have my ups and downs, but it’s not constant struggling to breathe like some summers have been. I saw my lung specialist in Pittsburgh last week and mentioned my periodic bouts with low blood-oxygen saturation so I get to do a cardiopulmonary test in November. That is basically riding a bike while they take blood from an artery (Arterial Blood Gas test or ABG) to see how much oxygen and carbon dioxide is in there. This is more accurate than a pulse oximeter which is placed on a finger. Sometimes ABGs make me a little anxious because the first 2 or 3 I had were a bit traumatic. Blood is generally taken from your wrist, and if you get an amateur phlebotomist doing it…your wrist is going to hurt like hell for a month or so. These days respiratory technicians do this type of procedure and tend to do an excellent job…I just always remember those first, bad experiences.
I’ve done a little research on the cardiopulmonary test, and have talked to a respiratory tech friend of mine about it. It’ll be good to have this done because if I have any problems during the test, they can pinpoint the reason whether it be heart, lungs, or I’m just out of shape. Back in 2011 and 2012 there were two times I was told I could be experiencing heart failure, pulmonary hypertension, or pulmonary arterial hypertension. It ended up being a combination of the right side of my heart enlarged a bit, poorly controlled obstructive sleep apnea, and poorly controlled asthma.
So with all this in mind, my short/long-term goal at the moment is to work on my general health.
Sleep regularly – I’m notorious for staying awake for days at a time or sleeping for hours and hours. Usually this involves bad asthma flares and high doses of prednisone. Other times I happen to be awake and need to watch just one more episode of the current show I’ve been binging. I’d probably do a little better if I had a more regular sleep schedule and got up at a regular time in the morning, whether or not I feel ok.
Drink less pop – Caffeine does wonders for me at times with the side effects of not breathing well and some of the medications I’m on. The problem is I don’t like coffee or tea, and pop/soda is full of sugar. Drinking water isn’t a problem for me, I just enjoy a Mt Dew or several when the mood strikes me. In the past few weeks I’ve been switching to diet Mt Dew and Dr Pepper or sticking to water. I don’t think I need to cut it out entirely, but I could do with more moderation in this area.
Exercise more – There have been times in my life where I probably exercised a bit too much coupled with active, manual labor. Nowadays I have a desk job, and sometimes I work at home which means even less walking. I do enjoy riding a stationary bike which allows me to exercise inside, avoiding outdoor allergens. For now I’d like to get back to riding 5 times a week.
Be mindful of what I’m eating – I’m not an advocate of “dieting.” My personal experience, and data from clinical research shows drastic dieting rarely results in long-term results. I need to be able to eat things I like while still making healthy choices. i got a free app on my phone called MyFitnessPal. I can scan bar codes or keyword search for food items, and the app tracks all the calories and nutritional information. You can track your weight, log workouts, set goals, and receive reminders. There are also periodic challenges if that helps motivate you. One feature I find particularly cool is data from Google Fit syncs with this app to add calories burned from exercise to the equation.
So with all of this, hopefully I’ll lose some of the weight I’ve put on in the past 3 years from prednisone, a hypothyroid, and sedentary life style. Anything I can do to improve my cardiovascular health is also a bonus for my breathing issues. After a couple weeks I’ve dropped a few pounds. If I can make this a habit and keep with it, I’m excited to see where I’ll be in six months.
Walking sure doesn’t seem like a big thing until you can’t do it. It’s also a low-stakes cardio activity many asthmatics like myself can do as an alternative to climbing mountains (aka stairs) and running marathons (aka jogging). My friend Stephen is a champion walker and he’s one of the most severe asthmatics I know. I considered myself a moderately serious weight lifter from the mid 90s through 2012 when I had to quit due to another bout of hemoptysis. Since then my activity level has slowly dropped and dropped, but I can still exercise with dumbbells at home and I can always walk.
I know none of these ideas are earth-shattering, but here are some ways I’ve found to walk more throughout my day.
Park farther away
Use the bathroom at the other end of the building at work
Go up and down every aisle at the grocery store whether or not I need something in that aisle
Take extra trips when carrying stuff in from the car
Find reasons to go from one end of the house to the other
Asthma creates this vicious cycle on our health. Besides making it hard to breathe, I have to take fistfuls of medication every day with annoying side effects which include water retention and weight gain. I’d love to always be active, but sometimes this will seriously flare up my asthma causing me to take even more of that medication with the side effects. Once I have been inactive for a while I’ve not only lost muscle tone but I’ve also packed on some water weight and my metabolism is all screwed up. My one friend in all of this is walking. If I’m having a good day I can walk farther and more quickly, and on bad days I can shorten distance and intensity.
No, I’m not lying, and yes this is kind of a big deal. Last time I didn’t puff an inhaler or take a neb treatment was April 30th. This has officially been the worst medical/health/breathing year of my life to date. Most years the fall is a little rough until the cold weather comes, the plants die, and the farmers quit working in their fields. That time of year has started and the cold temperatures have definitely brought some relief. My allergies have been going a little nuts being in some dusty rooms here and there at work, but other than that I’d say I’m not too bad.
My next goals are to continue to increase my physical activity without overdoing it, and to continue to taper off the prednisone. As much as I’d like to go running or lift some weights, appropriate levels of activity for me are things like walking, one flight of stairs at a time, using 25lb dumbbells at home, and slowly riding my bike. Hopefully I can continue feeling not so bad and get back to feeling normal throughout the winter.
At one point in my life I used to say I was an athlete. I started lifting when I began playing football and for 15 or 16 glorious years I spent a lot of time lifting heavy things and doing cardio. At my peak I was able to bench press 175% of my body weight and had serious trouble finding dress shirts our suit coats that fit. Eventually my asthma started becoming a real issue again, I had a bad case of pneumonia, and an even worse moldy apartment experience followed by a toxic work environment. Things never really got better for me and over the past eight years I’ve slowly been able to less and less physically. It’s really, really frustrating.
Last year my special lady friend bought me a bike for my birthday. It sits in my office and I watch TV episodes or movies while riding it. This tiny bit of exercise that would have seemed miniscule to my 25 year old self is probably one of several things keeping me out of the hospital these days. I can ride it whenever I want and as much as I want. It’s the perfect solution to my outdoor allergies and asthma flare-ups.
The bike isn’t fancy – there’s a seat, peddles and a heavy fly wheel. I never know how fast or far I’ve ridden, but I really don’t care. All I’m wanting to do is ride for X minutes. The heavy fly wheel ensures some momentum and the toe clips allow you to power the bike constantly. The seat may be adjusted both horizontally and vertically, and the handlebar height may be adjusted. It is important to properly adjust your bike for comfort and proper riding technique. At first the saddle, proper term for the seat, seemed quite uncomfortable and I was considering purchasing a more cushioned replacement. All I needed to do was break it in and occasionally use some chamois cream to prevent chafing.
This bike is better than anything I’ve ever ridden in a gym. I have averaged 30min or more, three times a week, for the past nine months and there are no signs of wear and tear. Spending more than $100 on an exercise bike might seem silly, but I can guarantee something cheap wouldn’t last long.
Exercise is important for everyone, but essential for those of us suffering from lung disease. I love Billy the Kid‘s dialog in Young Guns (1988) where he’s talking about have to challenge himself every day. You never really stay the same, you’re either getting better or worse. This can be directly applied to your lung function. Whether you walk, ride a bike, swim or find some other form of staying active – just do something. Your lung doctor and your health will thank you for it.