Tag Archive for breathing

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 Hypertension

I’m a weird case. Doctors have always had trouble trying to figure out exactly why I have trouble breathing. The allergies have always been quite obvious; both asthma and allergies are prevalent in my family. After years of moving around and trying to find doctors who believed me, they also discovered I have:

  • Hiatal Hernia (from a two-year chronic cough a doctor didn’t want to treat)
  • GERD (from the hiatal hernia)
  • Obstructive Sleep Apnea (from my tongue that covers half of my airway, the giant tonsils, and other weirdness in my airway)
  • Vocal Chord Dysfunction
  • Left Hemidiaphragm that doesn’t move
  • Anxiety because not being able to breathe well for 25 years makes you anxious

Last year restrictive lung disease started appearing on my breathing tests. Lately I’ve been short of breath often from walking up stairs, doing normal things like making the bed, and occasionally my oxygen drops into the 80s for a while.

While telling one of my lung docs about my symptoms, it was mentioned I should be assessed for pulmonary hypertension (PH) with a possible cardiac follow-up. So I’ve been reading up on this rare lung disease, and of course most of the symptoms seem to match up with what I’ve been experiencing. The only problem is those same symptoms can match up to a lot of conditions. I don’t want to have PH, but if that’s what ails me, it could be treated.

I’ve been in this situation before where a doctor thinks they may have it figured out. At one point everyone was certain I had allergic bronchopulmonary aspergillosis. I’m very allergic to aspergillus mold, and I had all the symptoms expect the one where you cough up oddly shaped chunks of phlegm. Over the years I’ve been told I might/probably have:

  • a fungal mass in my lungs
  • chronic bronchitis
  • COPD
  • right-heart failure

…to name a few. I’ve even been told I don’t have asthma and was taken off all maintenance medications only to go back on them 6 months later.

Last month my jaw started hurting, I talked to my dentist, and was referred to a TMJ specialist who told me my jaw is causing a lot of my breathing issues by sitting back too far and pinching my airway. I’m willing to look into this, but am not willing to pay the $2500 upfront. I’m currently in negotiations with my insurance company for a pre-certification to cover it.

So in the meantime I will not get my hopes up, I will not let the internet convince me of a diagnosis, and I will wait to hear from my doctors.

Tree pollen is kicking me in the lungs

It’s definitely that time of year again. The trees are twitterpated and spreading their pollen all over the place with little regard if people like me even want their powdery, yellow/green gift. My nose runs, I sneeze, my eyes burn and swell; I cough, my throat hurts, my skin turns red, and I wheeze; I get headaches and it’s hard to breathe.

In talking with my lung doc he’s fairly certain I’m getting mucus plugs in my airways as well as swelling and inflammation. They’re trying to keep me off prednisone so for the time being I’m taking vitamin C, vitamin D, and magnesium. The magnesium seems to really help with the wheezing. I also picked up a couple incentive spirometers which I use daily to help “pop my airways open.”

It’s kind of like breathing exercises and would benefit anyone. Many recognize these as “those things you breathe into at the hospital.” Right now I’m keeping one at work and another at home. It’s kind of like a reverse peak flow meter. It’s interesting to see on the days I feel really bad I’m only able to inhale 1500 to 2000 ml and on good days I’m able to do more around 3000 to 3250 ml.

My larger goal in all this is to stay out of the ER/hospital. There have already been times I probably would have gone in several years ago, but now with my added experience and know-how, I’ve learned how to deal with it at home. I think I’ve had six times so far in the past month where my allergies have become so bad to significantly affect my breathing. I’ve found the trick is to take lots of antihistamines, relax, and chill with my CPAP on for as long as possible. It has resulted in some pressure sores/lesions on my face, but I’ve figured out how to avoid those as well. How’s the allergy season going for you so far?