Tag Archive for exercise

Life on oxygen

I’ve been on supplemental oxygen for over a month now and love it. Yes, it’s a bit of a pain to drag the stuff around with me, or be tethered by a tube in the house, but it has allowed to reclaim a part of my life. In this time I have:

  • Gone to a multi-day family function/reunion
  • Went to a triple-feature Planet of the Apes feature at my local theater
  • Gone grocery shopping several times walking up and down all the aisles while pushing the cart
  • Cleaned the house
  • Gone into work for more than a couple hours
  • Walked around Oakland in Pittsburgh
  • Done yard-work outside the house
  • Carried 50-lb bags of chicken feed

I’m sure I’m forgetting things, but I think you get the point. I’ve gone from someone who was functionally home-bound to more of what I look like – an able-bodied adult.

Like most people on oxygen, I was started off with a home oxygen concentrator and a couple small tanks. The concentrator had a refiller attachment that allowed me to refill the tanks I was given. This was quite handy as I didn’t have to pick up or wait on delivery for tanks on a regular basis. The downside was the concentrator/refiller made a lot of noise and heat. It made so much heat it was confusing the thermostat in the house drastically affecting the temperature of our air conditioning. The tanks I had also contained only 90 min of air each preventing me from going too far outside the house.

After a couple weeks I was given a pulse regulator for my tanks. Continuous regulators just release oxygen as soon as they are opened, whether you are actually breathing it in or not. The pulse regulator released oxygen only when I inhaled. This effectively extended the life on my tanks by almost fourfold. The one downside with this new setup was I used the oxygen up as quickly as I breathed it. If I was sitting down or being relatively inactive my oxygen seemingly lasted forever, but if I was walking around or carrying things it was a different story.

Another couple weeks later I called my oxygen provider to inquire about arrangements for flying on a plane. I should preface this by saying my original oxygen provider was bought out a week or so into my use, and the new provider wasn’t too keen on customer service. The representative I spoke with on the phone insisted they would do nothing to provide oxygen for me on the plane. This is a bit of a problem because oxygen tanks are not allowed on commercial flights, and airlines do not allow you to connect to their emergency oxygen system anymore due to “security risks” after September 11, 2001. My provider should have either loaned or rented a personal oxygen concentrator (POC) with batteries provided 150% the time of my flight as required per airlines regulations. I complained to my pulmonologist who agreed this was ridiculous (this wasn’t my first complaint with the oxygen provider), and suggested I switch to Inogen.

Inogen is a manufacturer of oxygen equipment, provides its equipment directly to consumers (like me), and happen to have the most universally accepted POC for commercial flights. Last week I spoke with the local Inogen representative on the phone and two days later they were at my home with all new equipment. My new home conentrator is 1/3 the size, puts off virtually no heat, and makes much less noise. The Inogen One G3 personal oxygen concentrator allows me to walk around the house easily, go outside, go shopping, go to the movie theater, travel in my car, etc. with much ease and convenience. It weighs less than 5 pounds, has 8-9 hours of battery life, and I can get more batteries if needed.

I feel like things are looking up. I still feel worn out constantly, but I am much more physically active than I have been the past 12 months. People are also nice to you when they see you have breathing problems. That’s the problem with invisible illness, you’re sometimes treated poorly because strangers think you’re being lazy or demanding. People want to hold doors for me, carry things to my car, I’ve even received discounts at gas stations when buying a fountain drink or snacks. I’m hoping to continue increasing my physical activity to strengthen my respiratory system.

Pulmonary Hypertention Part 2

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
  • Coughing
  • Headaches
  • Dizzy or lightheaded
  • Chest pressure
  • Chest pain
  • Wheezing
  • Heart racing or pounding
  • Exercise intolerance
  • 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.

Trying to become more healthy

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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

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 albuterol yesterday

This may not sound like a big deal…

I didn’t take any albuterol yesterday.

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.

My Bike

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.

Sunny SF-B901

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.