Showing posts from September, 2007

Going To Cleveland

I'm leaving for Cleveland in a couple hours. I have appts tomorrow with my PH doctor, including an echo and 6 minute walk (blah! lol). I'm still feeling short of breath, although it's starting to calm down a bit. I've been tired the past week, but I've also been doing alot, too. I've got so much on my mind for October, that I'm starting to stress. I have felt a few heart palpitations, especially yesterday. Today's been good so far. So I'm glad I'm going to Cleveland. Hopefully Dr. Gildea will finally put me on the full dose of Revatio. And then I can really see if it'll help me!

The ice cream truck just drove by. I'm sorry, but I think it's time to give it up for the season!!! Sorry, had to vent. lol

Well I must get something to eat, and maybe take a little nap before leaving soon. I'll post results of my appointment soon!

This and That

My weekend went by quick, and it wasn't all that exciting. It was basically relaxing, and not doing much. I mean really, I don't think I did anything truly productive. I talked to a few friends for awhile. On my NEW PHONE. hehe I added almost 300 songs to my phone yesterday, and that took me quite awhile! So I guess I did do something! lol

Today I've been pretty busy, and it's such a difference from over the weekend. I am preparing for an upcoming PH support group meeting next month. I'm having a couple student speakers talk about diet and nutrition, and I think it'll be a good turnout. So this morning, I called a representative for Gilead, a pharmaceutical company that distributes the newest FDA approved treatment for PH, which is Letairis. He is actually a local person! And he knows so many of the doctors and hospitals in this area who are diagnosing and treating PH patients. I had a great conversation with him. He is willing to attend my meeting, and also pro…

Patiently Waiting

My week has been ok. Not the best PH-wise, but I'm hanging in there. I'm still very short of breath, which has been driving me nuts. I seriously hate this time of year. I keep thinking that maybe I'm really getting worse, but I go through this EVERY fall!! I can't understand it. I'm trying to patiently wait it out, but it's so frustrating. I go back to Cleveland on October 1st, and I can tell you right now that I won't be doing well on my 6mw. I've been trying to exercise, just doing 6 minutes on the treadmill, and it hasn't been going well. At least I know that if I don't do well, my doctor will most likely just say to increase my Revatio to the full dose, and see what happens after that. So that's my only consolation about that. I really just want things to calm down with the sob!!

Other than the PH crap, I bought some new things this week that I'm just excited about!! I got a lovely new lamp for my bedroom, and the shade goes perfe…

32 Years

Today is my 32nd birthday. While some people like to blow off their birthdays when they get older, and try to deny their age, I celebrate every year I get! Living with PH all these years hasn't been an easy thing, and yet, somehow I've made it this far. I thank the Good Lord for all the days He has given me so far. Even when I've had some tough periods, He has always given me strength to get through them, even when I didn't feel all that strong. I also thank God for my family, who has been there for me in everything I've gone through. I love them tremendously, and feel blessed to have them in my life. I also feel the same with my dear friends. They are also a huge support system, in so many ways. And then there is my PHamily. I am so thankful for finding the PHA website, and realizing that there were other people who are, unfortunately, dealing with PH like I have been since birth. These people have truly been comforting and supportive, in a much different way than…

So Far, So Good!

It's been 2 nights so far that I've taken Revatio in a 20mg dose. So far, no headaches, no yucky metal taste in my mouth. My blood pressure has dropped within half an hour of the dose, but it's still in the normal range, so it hasn't been a problem. Yay!!! I'm going to call Svetlana tomorrow afternoon, to keep her updated. But so far, I'm glad that I've decided to up the dose, even though it's slight!

I am going to clean the kitchen table. I'm having friends over tomorrow night, and I guess the table should be cleared so we won't accidentally eat some beads. lol


I've been on Revatio for almost a month now. I started it August 16th, at a half a dose (meaning 30mg a day, not 60mg). My PH doc wanted to ease me onto it slowly, since a drop in blood pressure and headaches can be quite common when a patient starts it. I know that my body still needs time to adjust to it, and get used to it being in my system daily. I had some pretty horrendous headaches a couple weeks ago, but they are gone now. I really haven't noticed a change at all yet, though. However, the change of seasons always bothers me, and I also have not been on it all that long. Not to mention, I'm only on half of what I should be!

Today I called Svetlana, Dr. Gildea's nurse practitioner. I've been calling her weekly, to let her know how I've been feeling, how my blood pressure is, if I have headaches or any other weird symptoms, etc. I told her I haven't had a headache in awhile, and I've also been feeling short of breath lately. I told her I knew that …

Fall Time!

I think it's quite obvious that I made some decoration changes to my blog! I'm all ready for Fall. Being that Fall isn't exactly one of my favorite seasons, I've surprised myself that I don't seem to mind it this year. Well, at least not yet, anyway. Technically, it's still Summer. But once we get past Labor Day, and the first day of school starts, I no longer see it as Summer! Fall signifies the start of changing weather patterns, which usually is a relief to many people with PH. Not to me, really. When the cooler weather starts, I usually feel more crappy and short of breath. Even despite being on two medicines now to help control those symptoms. Fall also means that Winter is on the way, and I HATE being cold!! I will also find out if getting rid of my carpets and having the hardwood floors was a good idea this summer. I hope the heat won't escape so easily when it's time to turn it on!

But this Fall, I also see a lot of promise and change. My Dad wil…


It's a little hard to believe that a week has already passed by since I was in Horseheads for my aunt and uncle's surprise 50th birthday party! The week certainly has flown. But last weekend was definitely alot of fun, and a great way to end the busy summer I had this year!

Last Sunday was the day of the actual surprise party, but the whole weekend was a game of trying to get my uncle to simmer down before it happened. He found out Friday that almost all his sisters were in town (he has 9 sisters, and 1 brother!). When he found out his sister from Georgia was flying in, he was even more upset. He couldn't understand why everyone was there, and no one had really informed him until the last minute!! His daughter gave him the excuse that it was Labor Day weekend, and everyone happened to be free to come to Grandma's for a visit before the busy school year began. Well, ok. He kind of accepted that.

So the plan to get Bob and Jane to the surprise party was as follows:

My cous…