Tag Archive for pulmonary hypertension

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.