Tag Archive for oxygen

Almost 36

I just saw Logan Lucky (2017), grabbed some Taco Bell on the way home, and am now watching some Ozark (2017) with my awesome wife. Birthdays seem less and less important each year. I think that’s one of those “getting older” things. It also seems like a lot has happened this past year regarding my health.

I ended up in the hospital, again, with breathing issues. Official diagnosis was acute asthma exacerbation and acute respiratory failure. I continued to have trouble with oxygen levels dropping with activity and started seeing a pulmonologist specializing in pulmonary hypertension. I was immediately put on lasix, that drug which makes you pee a lot, to get fluid out of my system and started the tests. I’ve had echoes, stress tests, stress echoes, right heart cath, and will soon have a stress right heart cath. The doctor is pretty sure I have exercise induced pulmonary hypertension.

I have also complained for a couple years about my oxygen dipping below 90% for a while. This has always been attributed to the obstructive sleep apnea, but I was finally able to have it tested. An exercise desaturation test had me right at 89% which is just above the magic line for needing supplemental oxygen. A few months later I had a walk test, which is a much more simpler version of the previous one, and my oxygen dropped down to 81% while simply walking down a hallway. That earned me the label of chronic hypoxemic respiratory failure and I’m now on oxygen 24/7.

With all the breathing and oxygen problems it has been hard for me to do what I’d like. It’s difficult to watch myself slowly become less and less able to do what should be normal. I’d love to go to work everyday. I wish I could walk around the zoo all day with my kids. It would be nice to go outside and not have to worry about pollen counts, people burning stuff, or exhaust clouds from the mini-racetrack three miles down the road. I wish the cold air didn’t make my breath catch in my throat, and it’d be awesome if anything over 75F didn’t make me sweat profusely. Oh yeah, and don’t get me started on humidity. The oxygen has definitely helped. I can go see a movie and not feel sick by the end. I can ride in the car for a while and not feel exhausted and out of breath. I don’t have that starving for air feeling like I used to constantly have.

I feel the worst for my kids. I’m not a deadbeat like my father was, but it’s not like I’m able to do what I need to do with them and for them. To them I am seem normal though. They haven’t known me to be anything else but chronically ill. They aren’t confused as to why I don’t always go places. They know I can’t go to grandma’s house because she has cats. They don’t expect me to stay outside with them for long periods of time. They don’t ask me to play outside with them. Instead they go with me to doctor visits. They sometimes accompany me to the hospital for my injections. They know not to touch my drawers of medicine or play with any of my durable medical equipment. My three year old always apologizes if he steps on my oxygen tubing because he knows that might make it hard for me to breathe. I feel blessed with their patience and kindness towards me.

Oh, and I got a state issued handicap placard today for my car. I am now officially disabled in the eyes of the government. I used to have an issue with that label, but I got over it. I even got over myself enough to attend a convention with the family and allow my wife to push me around in a wheelchair the entire time. There is no way I could have been there without the oxygen and the wheelchair. My doctor is very against me having the handicap placard because he is certain I will cease all exercise. He says having a placard does something to you brain that makes you think you are disabled. The only reason I pushed for it was because the parking services people where I work are so difficult about allowing me to park in a semi-close location. I either pay the standard parking fee and walk half a mile, pay an extra $400 and walk about a block, or get some sort of handicap access. I have an ADA accommodation to be able to use handicap spots on campus, but the parking people still make it very difficult to receive the handicap sticker each year.

Well, I’ve most definitely complained enough for now. My life isn’t all that bad. I have a lot to be thankful for. You should also go see Logan Lucky if at all possible. It’s pretty awesome. Halfway through the movie I had already decided I’m buying it when it’s available.

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.

Now I’m on oxygen

me with my new nasal cannula

Things have been a bit up and down this year. I’ve had bronchitis three times, and a bad sinus infection. Of course they all make it harder to breathe. The shortness of breath has become a big issue with almost any amount of physical activity. This past week I’ve noticed my lips turning purple or blue with some regularity.

I’ve been complaining about shortness of breath and low blood-oxygen saturation for at least a year. I have felt like medical professionals haven’t been taking me seriously because my o2 sats tend to be ok while at rest. I did end up doing an exercise desaturation test back in November where I immediately dropped to 89% and stayed there for the remainder of the test. Just one percent lower, and they would have pulled out an oxygen tank.

That did prompt some more investigative work which later resulted in the discovery of diastolic heart failure and secondary pulmonary hypertension. It was assumed I would see great improvement after 4-6 months on bipap, to address the underlying severe obstructive sleep apnea, but that hasn’t been the case.

This past two weeks have been fairly bad as I am sick again. I saw my local lung doctor’s nurse practitioner who prescribed a round of doxycycline and a short prednisone burst. My other lung doctor pushed for breathing tests and a walking test, and luckily I was able to have those done the next day.

I’m not sure what the PFT results were, but they seemed pretty surprised when my oxygen levels dropped after walking down the back hallway for less than a minute. I eventually left the doctor’s office around 3pm and had an oxygen concentrator at my house by 5:30pm.

The supplemental oxygen has seemingly made a huge difference in the past 36 hours. I’m not constantly panting, I don’t feel absolutely horrible, my brain isn’t foggy, I can hold a conversation, my voice has more strength behind it, I sat outside for an hour, I’ve left the house twice on short errands, I’ve been able to do some things with my kids, etc.

I am very interested to see if they can discover the root cause for my oxygen troubles. Usually this would be associated with fibrosis or severe obstruction in the lungs. It could be heart related, and it wouldn’t surprise me if the pulmonary hypertension is involved. For now I am thankful to be breathing more easily, and am hoping to get a piece of my life back.

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.

Wear your CPAP

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:

20150301_124101

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.

More prednisone

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.

Balancing asthma and life

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.

Calling in re-inforcements

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.