 Patient Diary -- Michelle Goodridge
Tuesday, November 26 2002
Dear Abby,
Gosh it sounds as if I'm about to ask someone for advice! Maybe I'll just ask you to listen. I've considered writing down my "health" history for a long time. I've considered keeping a diary. I've considered keeping a running written dialogue for my daughter, Abigail, so that she has a better understanding of all that her mom is going through. This will most likely be a little of all of it.
So, Abby, this is mainly for you. I have Secondary Pulmonary Hypertension. It is secondary after Scoliosis, Restrictive Lung Disease, Chronic Heart Failure, and a chest wall deformity. I am prone to retaining high levels of carbon dioxide (co2). Everything is related. It's a vicious cycle. My treatment to date has been oxygen 24/7 at 3l and BiPap when sleeping.
It never became more apparent, that I had to start taking some control of my health, than on November 7th of this year. I was basically "catching up" with my Pulmonary doctor when he casually states "You know Michelle, if you seem to be losing more energy there are some new drugs out there you may want to consider." Ooooo, more energy! Gee, it is getting tough chasing my almost two year old around. My ears perked up. "Oh really doctor?" "Yes, it's called Remodulin. It may be able to help increase your energy. Think about it and we will talk about it in the spring." So I go on my merry way armed with a piece of paper with the word Remodulin on it.
Link after link, search after search, site after site I am beginning to realize there is a hell of a lot more to this than just "getting back some lost energy". What I am learning is scaring the heck out of me. How about getting a PH Specialist for starters. How about a Right Heart Cath test. How about all those other less invasive drugs to start. How about the fact that I have probably had SPH for ten years and no one has even suggested seeing a PH Specialist to me. That maybe I could have been on some other meds that may have made life just a bit easier at times or slowed the progression. Because isn't time of the essence here? Or maybe just maybe, I don't even have SPH? Gee, after all this research, I'm pretty sure there is one test out there that can tell me. A RHC.
On a day to day basis I feel pretty good. I don't feel urgent needs to take naps or lay down. I use my energy to take care of my daughter. Who, by the way, is a true blessing in my life! She keeps me energized! My typical day is getting up between 7:30-8:30am and taking care of and playing with Abby. She naps around 1 or 2pm and that's when I shower, eat, sometimes pick up, read and surf the net. Luckily my husband, Dan, does most of the heavy cleaning. And if he doesn't, he doesn't really mind the mess!
We've gotten our first heavy snowfall tonight. Looks like about 4-5 inches so far. I think Abby will like the snow. I'm sure she doesn't remember it from last year. Dan is going to take her sledding tomorrow. Wish I could join them. But...the cold just takes my breath away. I'll watch from the window. Maybe she'll like hot chocolate when she comes in. Good night for now. Now all I have to do is hit send. Why am I so anxious? Ok, here I go...
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