Livin' My Life With PH!!

I was cruising along in life happy, healthy (for me) and enjoying my experiences that made me forget I have a chronic, incurable disease called Pulmonary Hypertension when BAM, the doctor said line infection and sepsis! I have had my current line in my chest since 2011. I have been having amazing hall walks and echoes that resulted from lower pressures than in the past. I began to feel like I wasn't sick. That was until a few weeks ago when I spiked a fever and went to the hospital. After lots of blood work and blood cultures that came back negative, I was told I had a tunnel infection in my central line. I did oral antibiotics for a couple weeks. The infection seemed gone. Then it flared up last week with high temps and pain in my site with drainage and redness. I knew what it meant. My wonderful husband drove me to U of M hospital 3 hours from home and I was admitted. The whole thing was traumatic even though I have been on Veletri 12 years. The ivs, blood draws, cultures ...

  I want to introduce you to my Spinning Wheel. I got it February 2013. I have got to play with it for almost a year.  I love it!!  It is an Ashford Kiwi. I purchased it through The Woolery . T hey have great customer service.   It came with a lot of different pieces to put together.  I decided to stain my wheel with Mins Wax in a natural color.  I let that dry for a day the then my hubby helped me put it together.  I got a Jumbo flyer kit with my wheel and 2 pounds of wonderful fiber.    Assembled!! This is my first attempt at spinning a 2 ply. It is 100% Alpaca. It was so soft and yummy!! Spinning while watching TV. It is very nice after a long day to just unwind and spin away the day. Falkland fiber.     Here is the Alpaca washed. It fluffed up! I really enjoy the feeling of slowing down and doing something my ancestors did centuries ago. It is a wonderful a...

     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...