Livin' My Life With PH!!

Day #1 I am going to blog everyday of my infection. By infection I mean in my central line in my left chest used to administer my Veletri medication used to control my PH 24/7.  At the end of April my central line began to get red and sore so I had my PH specialist look at it.  She cultured the site and had me begin taking oral antibiotics.  After 2 weeks of the antibiotics the site showed no change and began oozing puss and aching.  So tomorrow morning I am calling my PH specialist and she will admit me to the U of M hospital for IV antibiotics and a series of blood and site cultures. We will rule out a blood infection (I hope!).  If there is a blood infection that means pulling the infected line and getting a PICC line inserted so I can continue getting my Veletri medication. But enough of that talk, I will not get ahead of myself and I will calm my nerves. It is all in God's hands.  I am taking a long bath to relax tonight.  House is clean and t...

     I know that I have not posted in more than a year.  My life has been wonderful and full of living.  I have been enjoying my family, bowling, knitting and riding our motorcycle with the hubby.  I decided to post today because it is my 12 year anniversary of going on my IV medication, Flolan and then Veletri for my PH.  It has saved my life.        I had my Hickman central line placed on January 22, 2002. I started Flolan in the hospital at the  University Of Michigan in Ann Arbor, MI. I was admitted in the hospital for 5 days as my doctor increased the Flolan to a therapeutic dose.  It was the most frightening experience ever.       I was 23 years old, I had a 19 month old daughter and a boyfriend of a year.  I was told to get my affairs with my daughter and my life in order because my PH was so severe.  I was so sick that I was blue all the time, I couldn't walk around with out getting dizz...

Aghhhhhhh!!!! I bowled like shit all weekend. The best part of the trip to Canton, MI was my spending time with my hubby. The lanes were awful and the hotel was small. We went with 2 teams of great women and had fun. We went to the MGM Grand Casino in Detroit together and bowled like crap as a team! Go Muskegon!!! We stopped at a knitting shop that I loved! I went to Ann Arbor to see Dr. McLaughlin my PH doctor. I did fantastic on my 6 minute walk. I did 543 meters! We are going to switch me to Veletri from the Flolan. It's basically the same medication just doesn't need ice and I can mix up to 5 days at once. I am excited after 9 years of mixing my Flolan every single day! I am sooo sick of it! I am ready for spring!!! My mom and I are walking a few times a week and the snow is melting! Life is good!

I got my 5th hickman central line on Monday. The infection is gone and things are back to normal, at least for me. I am hitting the treadmill big time since summer is just around the corner. I can't wait to go to Florida with the Eagle's drill team.