Wednesday, November 29, 2017

My Journey with Sleep Apnea Related Pulmonary Hypertension

I've always been a medical weirdo. 

Allergic to my own body, always heavy,  sinus tachycardia, with a left kidney that forgot it was a kidney, I was still relatively okay or could pretend that I was. 

But nearly four years ago, my heart jumpstarted itself to over 200bpm. 

I was heavily pregnant with my rainbow baby and alone in my house with just my preschool-aged son. 

I can still vividly remember that feeling-that I was going to lose this child, too, that I was going to die in the house and leave my preschooler without a way to get help, that this. was. it. 

I grabbed my son, I grabbed the phone, and I ran outside to my neighbor while I called for help. Having had more episodes like that and knowing how debilitating they can be, I look back on that like a real act of strength and determination, but it wasn't enough. 

My body continued to deteriorate throughout pregnancy, and I stopped breathing during labor and so did my baby, who was born at 35 weeks with only a nurse attending the lightning-fast delivery, and the cord was around my newborn's neck. She was born sick and with torticollis and severe reflux and needed all the help we could get her; including a physical therapist and occupational therapist. And my body was on a slow descent, too. 

I kept trying to ignore it. That had worked with my other medical problems which eventually seemed to take care of themselves. 

I went back to university while taking care of my family and new, sick baby. And on the weekend I had finally graduated, had the biggest tachycardia episode since my dangerous pregnancy. 

A beta blocker for irregular rhythm helped and I thought that was all I needed, but the episodes kept coming and my cardiologist just shrugged it off. I switched MDs after my friend told me about a local cardiologist that specialized in arrhythmias and after rounds of testing that I needed, we found it.

High lung pressure. 

When I heard that it wasn't my heart, I thought that was great news. "No, actually, this is very bad," My doctor said, his normally smiling face was somber. I'd never even heard of pulmonary hypertension. I didn't know it was a thing, or that it had a relationship to the tachycardia episodes I'd been plagued with. 

We hoped it was sleep-related, and the signs seemed to fit. Sleep apnea-related pulmonary hypertension is the easiest form to deal with, but my test came back negative.

My local care providers wanted to do a heart catheter to measure the pressure in my lungs seen on echocardiograms, but after a failed attempt at surgery, I transferred to my PH center of excellence in my city.

It was harder to get to, required my dad's and my husband's help to even get to appointments, and took forever thanks to the devastating flood, but there I was told that this was not the worst, angriest, form of PH they thought it was. It had to be sleep-related, having ruled out blood-clot related forms. And the damage was mild to my lungs.  

The alarm never went off for my lack of breathing during my next test, but it did record what happened.

A type of sleep breathing disorder was found in my second overnight sleep apnea test. 

I can't even describe how thankful I am about that, which sounds stupid but finally knowing that we have a definitive diagnosis that is treatable is a victory beyond belief for me. 

I've gone from being told I would be dead in 1.8 years to having a chance to live without being overly plagued by episodes in which my heart cannot beat correctly and I can not breathe. It's still a little scary. This has been going on for a long, long time. I wonder what it has taken from me and what I will get back with the right treatment. With SVT I guess I won't be off of my beta blocker anytime in the near future, but I have heard people say treating this helps everything, so maybe at least it will improve.

The CPAP machine won't be enough, as diet and exercise play a role, too. I can't wait to be able to actually move around more, I do okay right now but there is a huge difference in what I can do versus who I was athletically before this started. 

This is the finish line in a long, hard race in which I was only one step ahead of a monster. 

I can't wait for it to be over with and to start a new chapter. 





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