OK, it's been FOREVER since I've updated this! I guess that's good because it means I really haven't had anything to report! Things have been going really well - I've been feeling good and keeping busy with work and Ashleigh! I hosted a Bunco tournament in June and raised over $3000 for PHA! Thanks so much to everyone who contributed - it was a great success! I am planning the next one for either April or May of next year which will be here before I know it so I better get moving! Also, November is PH awareness month so I did a one hour class at work for the nurses and RT's and basically anyone who wanted to come. I had a total of 25 people and quite a few more asking if I will do another one because they weren't able to make it. I thought that was a pretty good turnout and I am planning on doing one more at the end of the month! The more people who know something about PH the better!
Today I went to see yet another PH doctor. I really wanted to establish with someone down here in case anything should happen. Chicago is pretty far to go in an emergency! After going to Chicago we decided that we would follow up with Dr Mubarak down here. Well he had the nerve to up and move to Michigan!! I didn't want to go back to Mayo so I found Dr Bajwa at Shands in Jacksonville. He was great! He was very nice, positive and really knows his stuff! He didn't pressure me to do any research trials which was nice (not that I am against research - obviously we need it to find better treatments and a cure but I just don't want it to direct my care if it isn't really in my best interest). Anyway, he said I am doing great. As far as the calcium channel blocker thing he said not to be upset about it. He said the fact that I was initially a responder (only about 12% of PH pts are) is a good indicator that I will do well (I feel like I should be constantly knocking on wood! I really don't want to jinx myself!!) He also said not to get worked up about numbers and what the echo shows. As long as I am feeling good and my cardiac output is ok then I am doing fine. My cardiac output on my last cath was normal. He had me do a six minute walk. I walked 420 meters and my sats never dropped below 98%. I honestly think I could have done better but the way they do it is to have me walk up and down a short hallway - the constant turning around slowed me down! I am going to have an echo and then follow up with him again at the end of January. It was a very good visit and we definitely felt comfortable with him. Now let's just hope he doesn't decide to move away anytime soon!! I guess that's all for now. I will update again after my next visit!
