Intravenous PH Treatments

[Colleen]

New member, @Reen312 is a caregiver to her husband, who has PH. He has just returned home with IV Remodulin and will appreciate hearing from other members who have experience with this treatment. Do you have tips you can offer on adjusting to life with an IV pump?

@Reen312 my son, @cullen-steele was on IV Flolan. Different treatments and shelf life but similiar in that the IV Flolan and Remodulin require pumps. I’ve written several columns about this but here in one that might interest you.

https://pulmonaryhypertensionnews.com/news/going-with-flo-my-sons-experience-flolan-pump-ph/

[cullen-steele]

@Reen312 Hi Reen, welcome to the PH community! While it has been quite a while since I was on Flolan I will do my best to give some helpful tips for adjusting to living with a pump. I will begin by saying identifying what your body is most comfortable with regarding dressing changes, early will be a life saver. In my case I was allergic to many of the dressing recommended to me.

We went through a variety of different dressings such as tegaderm that caused an extreme rash, primapore which my skin agreed with but doctors didn’t like due to not being able to see the site, and eventually compromising on IV-3000. However, one of the biggest issues that we would encounter using the IV-3000 and I still even encounter today is that many hospitals don’t carry this type of dressing in certain wings. So if I had to change my dressing in a hospital for some reason I was in danger of having to find an alternative such as primapore or even risking tegaderm for a short period until I could get a replacement.

What I recommend in these cases is if you know you need to go out, carry one or two of your preferred dressing even if it’s a popular brand as you never know when a hospital may not carry it. I highly recommend this with your pump and IV medication as well as having at least one backup pump and dose available when leaving the house. We often made it a habit of having our back up pump and a back up dose available when leaving the house for an extended period in case of emergencies.

I wish you luck as you start your journey and please feel free to reach out to the forums if you have any further questions.

[carol-volckmann]

@Reen312 Cullen has great advice. Having with you extra supplies when traveling any distance from home is so important. I have a Hickman IV line for my Remodulin. I have been caught with a pump mal-function and a couple of times having to go to the ER and not having extra supplies. I have what I call my “Go bag” ready with supplies.

I, like Cullen, had reactions to various dressings. I found one that has been great – AquaCell Foam, waterproof, easy to put on and change. I usually change my every week. I can shower with it no problem. They are expensive but the special pharmacy Accredo/Express Scrips does carry them. I use the 4×4.

Another tip. I use a fanny pack to carry my pump during the day a use the shoulder one at night and put inside bedside draw.

I have learned I am able to mix 7 cassettes at a time so I have 14 days ready. I just put them in the fridge and will always carry one in my “Go Bag”.

The IV may be a bit cumbersome but is not painful like the subQ – that was awful.

Wishing you the very best and please do nit hesitate to reach out. 😊