What Is Going On?

May 12, 2024

I thought I'd get on here and tell y'all what's been going on and explain why I haven't been posting lately. I promise I'm going to finish my travels I did last summer/fall but I got waylaid by a serious health condition.

Ever heard of Pulmonary Arterial Hypertension (PAH)? Yeah, me neither until it stopped me in its tracks. It's a rare, complicated disease that has no cure and is progressive and life threatening. Apparently, I've had it for at least two years but was not diagnosed until now.

What is PAH? In short, it's high blood pressure in your pulmonary (lung) arteries. Pulmonary arteries carry blood from the right side of your heart to your lungs, enabling your entire body to receive oxygen. The high pressure from the heart to the lungs causes narrowing in your pulmonary arteries, restricting blood flow. This results in the heart having to pump harder so that the lungs receive blood, causing the heart to thicken and weaken, permanently damaging it. Unfortunately, the end result is usually heart failure. As I said before, there is no cure, but there are drug and oxygen treatments to relieve symptoms and slow progression of the disease.

This is my journey so far...

Approximately two years ago I noticed I was getting out of breath quickly when hiking. When I got to my "home base" of Livingston TX in March 2022, I went to a cardiologist (we'll call him Dr M.) who did a complete workup. Stress test, echocardiogram, the whole thing. Well, he told me everything was normal. Boy was that a lie.

A year goes by and I'm getting worse so while I'm Georgia for a few months, I see a pulmonologist who diagnosed me with COPD. I spent the last year using inhalers which didn't really help much at all. In January 2024 I started really struggling to catch my breath when walking and by February, I could barely walk 100 feet without stopping.

In February I returned to Livingston and three days later was in the emergency room with chest pain/pressure, arm and hands going numb, and not able to catch my breath. They did a chest CT and said I was in heart failure and needed to see a cardiologist. I got an appointment with Dr M and he scheduled me for another echocardiogram and referred me to a pulmonologist for a second opinion on the COPD. I thought it was strange but needed to establish a pulmonologist here so I didn't question it.

This is when I found out how incompetent Dr M is. Dr Najjar (pulmonologist) looked at the echo Dr M did two years ago and immediately said "I don't think you have COPD, you have pulmonary hypertension". He showed me the echo results which showed my right ventricle pressure at 28. Between 10-20 is normal. I was stunned! All the man had to do was say, "hey this is a little high and we need to keep an eye on it" and I would've been aware of what to look for. But instead, I did everything I wasn't supposed to do (heavy physical exertion, not watching my sodium intake, etc). which sped the progression right along. Now I'm in stage 3 (of 4), unable to walk from my trailer to my truck without gasping for air and my RV travels are most likely over. Needless to say, I found a new cardiologist.

For the past two months I've had EKGs, ultrasounds, echocardiogram, stress tests and a right heart cath. I feel like a walking pin cushion but was finally officially diagnosed with PAH. I bought a scooter so I can walk Sage and get to/from appointments/stores since I can't walk far at all. I finally got my disabled license plate which has helped when out and about. I have really been struggling the last two months with depression, my symptoms, and my new reality. It progressed so quickly and really caught me off guard. I went from hiking Rocky Mountain National Park last October to not being able to walk 20 feet. I've been through all the "why me" and "why did God allow this to happen" and pity parties I can stand. I've come to terms with it (although honestly I cry just about every day) but I still struggle with forgiving the doctor that could've prevented it from progressing so quickly. It's not just the breathing issues I deal with. It affects so much of the body. Nothing is the same. I have to closely watch my salt intake. My legs and ankles swell and are painful. I don't have much of an appetite. I can only eat a few bites at a time and then I feel full. Feeling full makes me nauseous and gives me heartburn. The fatigue and brain fog-it's hard work trying to breathe. I have to regulate how much water I drink. Too much causes the heart to work harder to get rid of it (I'm on a diuretic to help that). I can't sleep laying flat, I have to use at least 2-3 pillows. I panic when I have heart palpitations and think "Is this it? Am I about to have a heart attack?" (The internet is a blessing and a curse. You can find great information that can help and you can also find information that makes you believe you will die in the next six months.) I have to research nutrition info before I go to a restaurant. You wouldn't believe how much sodium is in everything! I read every label at the grocery store. Convenient prepared foods are a no-go. So. Much. Sodium! Our food supply is crap! I could go on and on.

I have an appointment with a specialist later this month but in the meantime my regular pulmonologist has started me on a vasodilator. If you don't know what that is, think viagra or cialis. Yep, I'm on an erectile dysfunction drug! I lost it laughing when he told me what he was prescribing. I've only been on it a few days but actually felt a little better. (Insert jokes here). Today has been a really good day. I washed all my dishes, vacuumed the trailer cooked dinner and even made my bed! That may not sound like much to you but it's more than I've been able to accomplish in one day in months.

Me, Dan and Jenny (friends of mine) went on excursions yesterday and the day before. I was exhausted when we got back to the park but I got out of the house and had a great time. I'm so thankful to have friends around to hangout with and encourage me.

I'll be staying here in Livingston for the foreseeable future while Dr Akannti (the specialist) figures out what drugs will work and get everything dialed in. I've been told it can be a long process as what works for one person doesn't work for another. I'm thankful Houston has some of the best doctors in the country and a PAH clinic with specialists.

I miss my old carefree life and am slowly adjusting to my new one. I have no idea what the future holds but I know Who holds my future. If you're a Christian, I covet your prayers. I'm not angry with God. He has never let me down. I don't know why He allowed this to happen and probably won't until I see him face to face but He's always provided everything I need. I know He'll be there for me as I walk this new road. Well, in my case, scoot along on my scooter 😂.

If you've made it this far, thank you for reading this. Don't take your health for granted and be thankful for the things you can do. I try not to dwell on the past but I've been looking through old pictures of different trips I've been on and the incredible experiences I've had. From feeding a jaguar in Belize to cage diving with great white sharks off the coast of Mexico to whitewater rafting and rappeling in Costa Rica and ziplining on the Big Island of Hawaii. I've had a full life. If my adventures now are tame by comparison, that's okay. I'll still be out there. I'll be moving slower (unless I'm on my scooter) but I'm not giving up.

Till next time...