Tag Archive for pulmonary hypertension

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.

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.

I have some hope

A lot has happened since I last wrote something. After many medical tests and 4 or 5 trips to the University of Pittsburgh Medical Center (UPMC), it has been determined:

  • I don’t need to drag an oxygen tank around even though my blood-oxygen saturation drops with physical activity. I’m right on the edge, but on the good side.
  • I’ve been suffering from a bit of pulmonary hypertension (PH).

After several discussions with my local pulmonologist and my UPMC pulmonologist, I was referred to a PH specialist with an appointment the following week. It’s  weird to think I have three lung doctors now in addition to the asthma/allergy doctor, two ENT doctors, and a primary care physician. Anyways, the PH doctor is great. She is very smart, appropriately aggressive, and a very good listener. For at least a couple years I’ve had different symptoms no one has seemed too concerned about until now. This doctor seemed to think they were significant. Blood work, another sleep study, right heart catheterization, and a stress test with nuclear imaging were ordered with a follow up in a couple months.

  • The stress test sucked. You know those funny Youtube videos where some unlucky soul is recorded falling off the back of a treadmill? Well that almost happened to me. They hooked me up with an EKG and pulse oximeter, then put me on a treadmill. Both the speed and incline were increased at regular intervals with blood pressure readings. What’s that? No one has ever taken your blood pressure while running from zombie’s in a forest? Well if you can imagine it, that is how it felt. At some point I was to tell them when I was about done, and then they start a 30 second timer. I couldn’t just stop, I had to finish out the 30 seconds. During that time I hit the “asthma wall” and almost fell off the back, but two doctors shoved me forward at the last second to avoid treadmill-road-rash.
  • The right heart catheterization (RHC) was the following day. I was a bit worried they would shave half my beard, but they were able to work around it. I’ve had more uncomfortable medical procedures, but the RHC wasn’t too bad. There is a 60-90 minute recovery time to make sure the puncture site on your neck doesn’t open up. I felt absolutely fine and didn’t quite understand why I couldn’t drive myself home until Liz picked me up and I passed out 30 min later. I later found out they give you a sedative to make sure you don’t move around too much afterward. This helps prevent your wound from opening.
  • I was glad to do another sleep test because I’d been feeling like the CPAP wasn’t doing its job even though the stats on my CPAP machine said otherwise. Turns out I was correct. Results showed I was waking up too often and my oxygen levels were dropping during sleep.

I had that follow up with my PH doctor last week and was surprised at what she had to say. She started me on Lasix (furosemide), also known as pee pills, after the first visit. They help to remove excess fluid in your body and I felt like they were doing some good. I was expecting to hear something like, “You’re fine, no PH, we don’t know what’s wrong with you, and stop taking the Lasix.” It turns out the RHC did come back normal, but my doctor was quick to point out I had been on Lasix for a week. I hadn’t told her, but I peed out 15lbs worth of water before the test. Her summation was my poorly controlled obstructive sleep apnea (OSA) was causing increased hypertension and diastolic heart failure. Those two things had caused me to develop pulmonary hypertension. This is why I have been constantly out of breath, exhausted, and low on oxygen.

So the plan from here is to continue the Lasix, and take care of the OSA in hopes that will take enough stress off my heart and let things calm down to “normal.” Unfortunately my insurance has been fighting the BiPAP order for a few weeks now which is quite frustrating. I just want to sleep and not feel like crap all the time. It is pretty cool to think they may have finally figured out what’s wrong with me though. Always be willing to ask questions of your doctors and do your own research if possible to help inform yourself.

If you feel like interacting with me or want to ask asthma, etc. questions, feel free to find me on Instagram – @asthmageek. In the past few months I’ve found new friends from the UK, Brazil, Canada, and all over the U.S. I’m always willing to chat as I seem to often be awake in the middle of the night.

I also need to give a big shoutout to BreathinStephen for hooking me up with Dr W at UPMC 3 or 4 years ago. I don’t know where I’d be without them.

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.