30 Days of PH: Implantable Pump

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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

A post shared by Pulmonary Hypertension News (@pulmonaryhypertensionnews) on Nov 17, 2019 at 4:49pm PST

Author Details

Jen Cueva

Jen is a columnist and forum moderator for PH News Today. Jen worked in nursing before the script changed upon her diagnosis of PH in 2005. Advocating and meeting those with PH has always been an essential part of her life. Her passion is to instill hope and remind others in the PH community that they are not alone. In her weekly column, she delves into the roller coaster of emotions that come along with PH. Jen lives on the Texas Gulf Coast with her husband and mini-schnauzer. Together we PHight stronger.

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4 comments

mike says:

November 18, 2019 at 10:18 AM

is there supposed to be an article here on the implantable pump? curious to learn more…

- Jen Cueva says:
  
  November 18, 2019 at 10:52 AM
  
  Hi Mike, Thanks for reading. This is a story about a young woman who was switched to the implantable pump. This is our PH Awareness project and shares their stories. Yes, she is utilizing the implantable pump for her PH.
  
DMS says:

November 20, 2019 at 12:30 PM

Love the idea of this! Is there any more news on when the implantable pump will be released by FDA. Approved but postponed, until when and why? What’s the hold up?

- Jen Cueva says:
  
  November 20, 2019 at 3:58 PM
  
  Hi Denise,
  I have an article that we published back in September regarding this pump. I hope that you can find it helpful.
  
  https://pulmonaryhypertensionnews.com/2019/09/13/fda-reviewing-to-trevyent-pumppatch-system-as-pah-treatment/

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