Home | Posts RSS | Comments RSS | Login

Introduction

Monday, April 30, 2007
Hello! Several people asked me to start a blog so I can keep them informed about my health. So, here we are! This story started In June, 2004 when I was diagnosed with a rare lung disease called Primary Pulmonary Arterial Hypertension or "PH".It is basically high blood pressure in the lungs. This has nothing to do with "normal blood pressure" that you get checked at the doctors office. It's very rare. The latest number I read was approx. 100,000 in the United States. The average life span is 3-5 years after diagnosis. Please go to www.phassociation.org for important information, explanations and exciting advances in PH.
The Ph isn't the problem that I am dealing with right now. I had been losing weight due to the Flolan side effects for quite awhile. Flolan is the medication I take to control some of the symptoms of PH. Flolan is delivered with a pump through a central line that is administered 24 hours a day.The side effects can sometime be rough including lost of appetite and nausea.I lost a significan't amount of weight because of the side effects. But, that weight loss seemed to be getting under control. The current problem started about a month ago. I became unable to eat more than one or two bites and then get very full. If I tried to eat more, I got very nauseated. It has now progressed to the point that I can only eat popscicles and chicken broth. Because of all of this, I am extremely weak, my hair has become really thin and I sleep so much. We've been doing all kinds of tests. It does look like I have a low thyroid and am anemic. But those two things don't explain the eating/vomiting/weight loss problem. I can't start medication for either one until we figure it out. The doctors think the enemia might also be from blood loss but they don't know from where. I had a cat scan done last week that showed no problems. Next Tuesday they are going to scope my esophagus and stomach and do a colonoscopy to try to find some answers.
So many of you have asked what you can do to help. My friends from church have Rod's meals taken care of. I also have a couple of good friends with flexible schedules that are driving me to appointments. At this point, there is really nothing else that I can ask for you to do, physically. What I can ask for are prayers, big time prayers.
The concern and love that has been shown to me is unbelievable and humbling. You have no idea how much I miss all of you, even if it's just e-mails and posting things to my phriends (friends with ph) on the PH website. I will do my best to "blog" so you know what's going on. Right now, please pray for Rod, Nick and Chris. They are so worried. As a mom and a wife, I'm suppose to be calming their worries, not be the cause of them.
"Talk" to you soon.
Annette

Annette's Exciting Blog

Sunday, April 29, 2007
I'm just going to type a boring sentence to see if this works