Two years and doing great!

Ok so it's been a really long time since I've updated this blog! Lots has happened in the last six months! I figure since I just passed my two year "anniversary" of diagnosis I should write an update! I am still seeing Dr Bajwa at Shands and I love him! So glad I found him - Chicago is VERY far!! I saw him at the end of January after having an echo and everything looked great. My heart is still enlarged but functioning well. All was going great until about two weeks ago when I caught a bug from Ashleigh (damn daycare!). It was some sort of respiratory infection and made me feel like crap! One afternoon I decided to run to Walmart to do some errands while Ash was at school (so much easier by myself!) On the way I really wasn't feeling good when all of a sudden it was like my ears popped and I heard kind of a rushing sound - I thought I was going to pass out. I pulled over as fast as I could and called my dad to pick me up. My heart was pounding a mile a minute and I was shaking so bad! I think all from nerves. Anyway, I called Dr Bajwa and he ordered a seven day course of levaquin to try to kick the infection. On day seven I had to go to Dr Jamidar's office to get my INR checked. On the way there I again thought I was going to pass out. This time my whole body got really hot. I took alot of deep breaths and kept driving - I just wanted to get there! I know probably not the safest move but anyway when I got there I still didn't feel great. I asked them to take my BP and it was 86/64 (my normal is low 100's/50's-60's) so it wasn't super low but I wonder what it actually was when I felt like I was going to pass out. I got to see Dr Jamidar while I was there. He thought it was probably just my BP and I was dehydrated from being sick and not my PH. He put a 24 hr holter on which was normal. He also did an echo. He said the pressures were 55 - I freaked! The last echo they were in the 30's. I called Dr Bajwa first thing the next morning. After describing everything he said he really didn't think it was the PH. It may have been the levaquin but we made an appointment to go see him. I went this past Thursday and got all great news! I have been feeling great - infection is gone, no shortness of breath, no feeling of passing out. He wasn't concerned about the echo - most doctors don't pay attention the pressure reading on the echo - they look at the whole picture. I have it ingrained in my brain from Mayo that the echo is the end all be all of tests. Anyway, he was able to measure my cardiac index noninvasively (the cardiac index basically shows if the heart is functioning normal or in failure). Normal cardiac index is about 2.6-4.2. Mine was 3.3! Yay that made me feel much better! Then I did a six minute walk and did even better than last time! I walked 423 meters and my heart rate never went above 107 and O2 level never dropped below 95! Woohoo! I was excited :) He doesn't think I need a cath anytime soon - he only does them when really needed. As a side note I had called Chicago about two months ago to make an appoitment for a cath up there but Dr Rich said there wasn't any reason to do a cath so that means no trip to Chicago this year! So anyway I will follow up with Dr Bajwa in June (my normal scheduled appointment). The other big news was the 2nd Annual Rolling PHor A Cure Bunco Tournament! I hosted it on May 5th and it was a great success. We raised almost $2300 for PH research!! I'm hoping next year will be even better!! With that my total raised to date for PHA is just over $8500!! Thank you SO much to everyone who has made a donation! At the end of June I will be attending the PHA conference in Orlando. I am very much looking forward to meeting other PH patients and learning everything I can about PH. I was asked to sit on a panel for the special events session - I was honored to be asked! I am looking forward to that as well! I will post an update when I come back! I think that is about it - all and all life is great :) I am a lucky girl!