Remodulin. To the PH world it’s a Life Saver… buuuut when delivered by SubQ pump, it’s also a huge pain-the-ass to the life that it’s saving. Lemme try to explain something that hit me pretty unexpectedly last nite…
Mia was showing so much more of an interest in her Site and the process of her medication (yay!! she’s engaging!) that I suggested she practice the sterile procedure with the Saline that Mike and I were practicing with in September. Well! Doesn’t she have to take it one step further and suggest she hooks ME up to the a pump filled with Saline! She’s excitedly explaining that I could do her medication/cartridge changes and she could do mine! I say: “PARDON?!” But I’m thinking: ‘Umm No thanks! I’m good!” And she continues with a million reasons why it would help her SoOoOo much!! That was January 7th. CLEARly she won; today is January 21st (Happy Birthday Auntie Barb!) and I’m still wearing the damn pump…. 24 hours a day, juuuuust like her. I do plan on sharing all my fun pump experiences later, but for now… I wanted to show you the ‘choice’ that PHers have. Ready? Okay! ✨
This is what they looked like when we took them out. (I am sorry I don’t have a picture of mine, I was surprised with what I saw, that I forgot to take mine)That does NOT look like happy skin at all! It’s itchy and it’s sore… it’s kiiiinda too sore to scratch, so she asked me to cover it up ’cause she didn’t want to look at it or accidentally scratch it. Can you blame her? Youch! Aaaaand since I wasn’t risking infection, I did so with sterile stick-free gauze.
I don’t know about you, but I’m pretty sure no one would want their skin to feel itchy, rough and sore. I am DEFinitely sure that I couldn’t find anyone who would say they’d want their skin to look that way. If this is the better option between two choices; well I’d say it’s a pretty shitty ‘choice’.
Essentially a lot of PHers use Remodulin because really, it’s a pretty awesome medication! The difference in how she feels is astronomical since starting on this drug. And when she’s not suffering from the pain she gets with every Site change — she has so much more energy that she almost seems normal. *Almost* I mean to look at her, you definitely wouldn’t think there was anything wrong with her; let alone that she was a very sick little girl.
So what hit me last nite is that a lot of PHers choose use Remodulin via SubQ pump with all it’s pain, side effects and after effects because even tho all of that is quite horrible, it’s still a better option than not being able to breathe. That sucks. It really does.