So I'm Flippymom.. aka Alex. I've got three teen aged daughters who, when they were really young, I was diagnosed with a terminal incurable condition. I was actually given 2 years and told to make memories for my kids to have of me.
So let me back track a couple of steps and let me tell you what my terminal incurable disease is. I have a rare, orphan, invisible disease called Pulmonary Arterial Hypertension. Women are the ones mostly affected, in their child bearing years. BINGO! that's me! Studies are showing that for every 5 women with Pulmonary Arterial Hypertension, there is 1 man. But, for me this is the saddest part, babies are being born with this horrible disease. The elderly are also getting. I guess it would be fair to say, anyone of any age, gender or ethnicity can get Pulmonary Arterial Hypertension.
There are some reasons why people get Pulmonary Arterial Hypertension (PH). Some get it secondary to other diseases such as lupus and scleroderma. others get it because of methamphetamine usage or even diet drug usage. and, wouldn't you know it, I fall into the category of not knowing why i got it... idiopathic, or of unknown causes.
When I was diagnosed in 1998 there was only 1 FDA approved drug for PH, Flolan. Flolan is a drug infused through IV. At the time, only Remodulin, which was still in clinical trials and called UT15 at the time, was the only drug for PH in clinical trials. Since I was so incredibly sick, going into a double blind study would not have been a good thing for. A double blind study just means that some people get actual drug while others get essentially a sugar pill, only Remodulin was given as a shot into the fatty areas of the body, much like a diabetic would get their medications.
So, Flolan it was! I was on Flolan for four years. There was a catheter in my chest 24 hours a day, with medication that I would have to make myself like some kind of freaking pharmacist, and then have to hook myself up to the medication that I carefully put into a cassette, making sure every last teeny tiny bubble was removed. Of course there were side effects, weight loss, diarrhea and nausea, jaw pain, leg pain, flushing of the face, etc.
Finally, after enduring four years of Flolan, I was well enough to be removed from Flolan and be put on a brand new FDA approved drug, which was just one tiny pill twice a day! No more mixing meds, no more line infections, no more side effect. It is a dream come true!
There are now I believe nine FDA approved drugs on the market for Pulmonary Arterial Hypertension. PH is no longer a death sentence as it was before, as long as a patient is on medications and treatment.
I lead 2 support groups in the D.C. area, am trying to get a pediatric support group up in the air, and am doing so well! Thanks be to God!! and my doctors, Dr Frost in Houston TX, and Dr Girgis in Baltimore MD at Hopkins.
I'm sure I will add more to this blog as I get going...
For the Cure!!