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Day 17 of 30 Days of Ph Topic: Implantable pump This is Monica’s story @monsphight At 17 years old, my world came to a screeching halt. There was no slowing down life in high school. I loved softball and was a bouncing cheerleader. I loved all things about life so when diagnosed with PAH, EVERYTHING changed! The only treatment 24 years ago was IV Flolan. Imagine having to strap a pump under your prom dress or wedding dress! I adjusted to life connected to the tubing. I was forced to “grow up” very fast. To stay alive, I had to come home to mix my meds earlier than most kids my age. I tried going on SubQ Remodulin and I put in a great effort, trying it 2 different times. Once for 3 years and the second, for 2 years. The pain just controlled my life. I’ll never forget the first time my doctor told me about an internal pump. My brain did a major eye roll (I would never actual eye roll my amazing doctor) but my thoughts were saying, “yeah right”. I thought I would be dead before anything like that ever came out! Years passed and I kept on living my best life on my IV Remodulin. One day I got the call, the call that gave me back freedoms that I never thought I would live to see. The implantable pump was launching, and I had the opportunity to try it! It’s been over 7 years now since I went tubeless and free from central lines or pain. My first dip in the pool was absolutely amazing! I have a big love for my “can of tuna”. It’s the simple things that most do not think of that make me smile. Like my long bubble baths, being able to toss and turn in bed without getting tangled or the ability to spin in the shower. I think back at life on a pump and I thank God for the experiences because now I can be truly grateful for the small AND big freedoms the implantable pump gives me! If oral treatments alone are not cutting it and your doctor suggests you try more aggressive PAH treatments like IV medicine, please do it. It sounds scary, but it can also save your life. Don’t be afraid to live a better life! #30daysofPH #implantablepump
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