PH Blogging Day

Today is PH blogging day so I am updating my blog! For anyone new to my blog the first posting gives my whole story from the beginning. I've been feeling really good overall. I get short of breath once in a while if I do too much but I just slow down and I feel ok. I feel very blessed to be feeling as good as I do. I am grateful for every minute of it because I know that it could change so quickly. That's one of the many sucky things about PH - no one knows how long the meds will work - everyone is different. I pray all the time that they continue to work well for me. I try to always be positive - some days it's not easy but it truly makes a difference.

I go back to see Dr Burger on December 20th. I will hopefully be able to join the clinical trial at that time that we talked about the last visit. He is studying the effects of more than one medication on PH. Almost all PH patients are on different types of PH meds because they work in different ways. My doctor however says there haven't been alot of actual studies done to show this is really effective. Hey if I can get some meds for free and get paid to go to Jacksonville count me in, especially for a med that I would have wanted to start anyway! I have been on coumadin for the last month or so. We are still trying to figure the right dose for my target INR range (clotting time) of around 2. I had my blood drawn today and it was 1.8 so we're getting there. I'll have it checked again next week.

I am very much looking forward to the holidays. We are having Thanksgiving here - I love having a house full of family :) Then Eric, Ashleigh and I are taking a trip to Disney for a week then it's Christmas!! I can't wait to see Ash this year - she is going to be so cute!! I hope and pray for a cure because I want to be around for all Ashleigh's Christmases. I love that little girl more than I thought it was possible to love anyone :)

Anyway, this blog is supposed to be about PH! For all the up to date info, check out www.phassociation.org. That site is where I get all my information - it was the only one I found early on that had positive things to say - the first thing I saw when I opened the webpage was a quote "PH is not a death sentence" After everything else I had found online that really made me smile. It also led me to Generation Hope, an online support group for people my age with PH. It has been extremely helpful and comforting to know that I am not in this alone.

Also for anyone who doesn't have a Hope for A Cure bracelet and would like to get one please visit my fundraising page www.firstgiving.com/cureph. Every little donation helps towards finding a cure. Sometime in the near future I am going to start planning a bunco fundraiser to raise awareness of PH and of course money for research. More info to come on that later!

Well, thanks for checking out my blog! I will update again after my next trip to Jacksonville.