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  • I have a Hickman.. it is only used for Remodulin 24 hr a day. it’s not that bad, you can’t take bubble baths or swim. It has and is the best solution for me to receive my medication until the next stage.

  • When I was using subcutaneous Remodulin the lavender button wouldn’t stay in. My body would turn red, swell up to the side of half inflated football and pop out. The longest I could keep one in was for 3 weeks. that last time it abscess and I had to have the surgically removed. I now have a Hickman and a infusion pump…while I was in the h…[Read more]

  • Hello I am on Oxygen, my saturation is 4 leaders at rest. 6 leaders walking down the street. We have 58 steps to our front door. I have 2 concentrators that are hooked together the tubing Y off and I’m on a 50’ line allowing me to come up out steps on 12 leaders …. My Dr tells me that my transplant will be soon. I have been on and off oxy…[Read more]

  • I’m having a problem with a old Remodulin site I try to keep it in for 4 weeks at a time but find it starts to get puffy around the 23/24th day and I change it. This last time my site is hard and flat to the touch. My weight is fluctuating 5 lbs or more each month.

    • Hi Donna,
      I’m sorry you’re experiencing the puffiness around the site. Have you been in touch with your doctors about it? I can post a new topic asking our members about puffiness around the Remodulin site and see if anyone has any suggestions for you. I wish I could be of more help but I don’t have personal experience with that treatmen. I would…[Read more]

  • I only use THC that my Dr. (and team) prescribes me . I don’t do over the counter products.

    • Donna,
      Definitely a good call! I just have heard of medicinal companies that sell the amount of THC in pill forms or edibles . Was curious what you have tried. Maybe try bringing up the combo of THC and CBD to your doctors. My cardiologist was the one that recommended CBD to me because I told him I have adverse reactiond to THC.

  • Hello Brittany,
    I have been reading your blog since I started on Remodulin 9 months ago. I use Gabapentin for the site pain, but only at night. I was asked by my team to try a new product “EVOLVE” it’s THC. You need a Rx to order… I use it sparingly around the site 3 or 4 times daily. I have also started preparing a new site. Just apply…[Read more]

  • Donna Dee Tubbs became a registered member 1 year, 11 months ago

    • Hi Donna,
      welcome to the PH forums. It is great that you have become a member and can now interact online with others with PH. A lot of us share common experiences and it is great to know that we are not alone in living with this condition. There are others out there! There are a lot of topics on the forums so I am sure you will find ones that…[Read more]

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