The Lesser of Two Evils

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! ✨

As I say, mine was inserted January 7th – hers on New Years Eve – The date of the pics was January 20th

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. 


10 thoughts on “The Lesser of Two Evils

  1. Too bad the medication has to leak onto the skin. Looks awful. She may also have a reaction to the adhesive tape. Have you tried the taped elsewhere without a site just to experiment?


    1. Yes. There are alternatives to adhesives for sure! It just shocked me that this is considered Normal. We’re going to be trouble shooting until we get it to the best it can possibly be. #1 happened with the new site. We eliminated the Protective Barrier Pad… fingers crossed that we found it on the first try!


  2. Christy the marks around the site is that from the the med or ” just ” skin irritation? If it is from the meds maybe you could paint Newskin around the sight to protect the skin, or there is also a product that is put around a Stoma to protect the skin around a colostomy site.


  3. My site was just like that , then I changed the dressing to Primapore . The soreness is totally gone and the itching Is way less . God Bless!


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