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/

[Colleen]

@Reen312 How is your husband’s experience with IV Remodulin going? Do you have any questions and/or concerns? Many of our members have experience with IV treatments and may be able to share helpful tips.

[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. 😊

[Reen312]

Fortunately, it seems to be a pretty smooth ride at the moment regarding the Remodulin. I have done the mixing of the medication so many times now, I could probably do it blindfolded lol. We had to send in an appeal to the appeals council For disability, because the judge who made a decision on December 2nd 2025, made legal errors in his decision by not even including the fact that Bryan is on this Remodulin pump. When bryan was in the hospital Sept and beginning of October 2025, Loma Linda medical center had over 1400 pages regarding bryan’s entire stay there, and the judge failed to use even one page of that 1400 pages. He also failed to understand the bryan meets the listing 3.09 in the disability handbook, which is a major error and a violation of his duty to make sure that all people who are applying for disability be regarded under ALL listings, not just the ones he thinks Bryan doesn’t qualify for. He also failed to understand that because bryan has PAH, the condition that goes along with Group 1 is right sided heart failure, unlike the other 4 groups that go by Left sided heart failure. The judge had taken all his echos from the last 2 years and anaylzed the wrong numbers in each echo, by saying Bryans EF number was too high for him to qualify for disability. If he had choosen to look at the correct number he would have seen that all of Bryans echos his mean arterial pulmonary pressures were all in the 80s and 90s, making him more than eligible for Listing 3.09 that requires only above a 40 when it comes to the pressure. To verify, a RHC was done which confirmed that Bryan was still in the upper 60s. When bryan was intubated at the hospital, the judge said that he reported shortness of breath and coughing on a day that he was completely a hundred percent intubated, meaning he could not have reported jack s***. It was just error after error of incompetence by the judge. Bryan’s hearing was the end of october, and the social security office made whats called a HIT MER to request those 1400 pages in plenty of time before the hearing. On the hearing day, the end of october, the judge not once mentioned anything related to Remodulin, or the pump, and he failed to fully use all of the information that’s was given to them in a timely manner. Since sending in the appeal in beginning of february, the appeals council has agreed to take a look at the actual appeal and do the investigation and find out what errors were made and what they can do to fix it. Although I know it’s uncommon, I’m hoping that the appeals council will just give him an automatic approval since the errors that the judge made were pretty substantial. So now we just wait for the council to decide what they wanna do. Meanwhile, I was able to get some extra hours from Ihss for taking care of Bryan and now its just a waiting game to see what the appeal council decides. I am confident that the appeals council will see the errors that the judge made and decide in full favor of Bryan. If not, we are prepared to hire a lawyer, and sue SSI for not only the backpay that is owed but also for emotional distress.

[Colleen]

WOW! I had no idea how excruciating the disability appeal process can be! My anxiety level climbed just reading this, so I can only imagine what it has been like for both of you! I’m so sorry you are going through this @Reen312 ! If you don’t mind, please keep us updated because your experience might help someone else through theirs.

Has any of our other forum members gone through a similar experience that you can share with us?

On a positive note, it’s good to hear the IV remodulin care has become routine. It was the same for when my husband and I were taking care of @cullen-steele IV Flolan. I do believe we could have mixed it in the dark if we needed to.