Happy Awareness Month! Week 1 November 7, 2018

Here we are, the first full week of Awareness Month 2018!

I do hope everyone is having a wonderful Wednesday & Fabulous November!

I wanted to talk a little bit about my journey today and what it took for me to get to this 20^th year of being diagnosed with PH.

First off let me say that it was not an easy ride, at first. And I know all of our stories and journeys will be different. Pulmonary Hypertension is such an individual disease, we are all affected differently, we all have different pressures in our pulmonary artery, and we don’t all have the same symptoms let alone side effects to our medications. I also know that not every medication will work as well as it has for me, and some that didn’t work for me, has done amazing things for you. And that’s wonderful. I think it’s amazing and a true miracle that we have so many different treatments with so many different pathways. The researchers, scientists and doctors have found different ways to attack pulmonary hypertension, and they are looking into more different and unique ways. You know how PH hits mostly women in their childbearing years? Well, they are looking into a pathway that deals with the female body, compared to the male body.

And you know how the endothelin in our pulmonary arteries grow without reason, thicken and create grooves and valleys? They are looking into a pathway for cancer, since cancer also runs rampant without cause or reason. Plus many other ways to attack pulmonary hypertension. I wonder, personally, how our body is basically attacking itself, why don’t they look into an autoimmune type pathway?

Anyways. As many of you know, I was diagnosed in 1998. My journey begins like most others. I started getting symptoms, shortness of breath and exhaustion, go to the doctors, get misdiagnosed for several years, until the symptoms worsen and I started passing out. That was finally when I was diagnosed. I started getting symptoms in 1996. I had just delivered my third and last daughter, woman, in her childbearing years.

I was put on Flolan right away, it was the only FDA approved treatment for pulmonary hypertension at the time. Remodulin was in clinical trials, and my specialist didn’t want me to be put on placebo. My pressures were at 115, which I thought was really quite high, but I found later, a young woman with pressures at 160. I think those are the highest pulmonary arterial pressures I have ever heard about. And this young woman was walking around on Flolan.

Anyways, being sick with Pulmonary hypertension, as you know, is no a fun thing. It affected not only my life but those closest to me. My children, my x husband, my mother even moved from California to be with me and help with the children. To this day, my mother is still my caregiver, and now it’s my granddaughter she is helping me with!

My girls felt so alone when I got sick. I found out years later that they felt I had abandoned them since I was pretty much asleep or in bed for their early childhoods. My oldest daughter blames me for growing up too quickly, having to care for her sisters while I was sick in bed. She was 6 years old, and my youngest was 2 when I was diagnosed. My middle daughter was 5 at the time and she was a high needs child. But I really couldn’t do much of anything to care for these girls. Exhaustion plagued my every waking moment. And regardless how much I slept I would still wake tired.

Fast forward to Tracleer (Bosentan). What a day it was when I was taken off Flolan and put on Tracleer. It was amazing! And then a few weeks later, they removed the Hickman catheter I was on.  I was leery about having them take out the catheter since all I had read about online, people were saying Tracleer wasn’t working for them and they had to go back on Flolan or Remodulin. But I did it and it was amazing! I was on Tracleer for 11 years, until one day they found that I developed pulmonary venous hypertension, a type of pulmonary hypertension, which is caused by systemic high blood pressure, sleep apnea, and other controllable things. This was caused by diseases of the left side of the heart. But I don’t have high blood pressure, and my apnea is being controlled for over ten years now, and my cholesterol is being controlled very well with pills and diet, and more.  All of this to say, that they switched me from Tracleer to the generic of Revatio, Sildenafil.

This is my pulmonary hypertension story up until now. I hope to post and go live, (on Facebook), every Wednesday in awareness month. I hope that you will join me!