Attached At The Hip
This common phrase has a whole new meaning to me. After a huge life changing let down, I have a new medical accessory literally attached to my hip 24/7. Over the course of several months, my pulmonary hypertension became significantly worse, silently at that. The treatment regimen I was on clearly was not helping, so something more aggressive needed to be done. That’s when I started on remodulin.
The good news about this medicine is that it is pretty effective at reducing the pulmonary artery pressures through vasodilation (widening blood vessels). The bad news, it has to be a continuous infusion through an IV or subcutaneous pump. I chose to go with the subcutaneous pump. With my luck I would likely develop sepsis through the IV.
Navigating The Shower
Everything was all fun and games, seemed to be manageable and straightforward. That is, until I had to take a shower. Talk about an Olympic event. First of all, I had to cover the site on my stomach with a waterproof bandage, then reinforce the area with saran wrap! Y’all I was using Glad Press n Seal on my stomach to make sure nothing got wet. It was wild, but shout out to my nurse for the suggestion because it really works! Next, I had my pump in a ziploc bag. My leash (tubing of medicine) is only so long. I’m in the shower trying not to get anything wet while also trying not to drop my pump and pull the site right out of my stomach. I wish someone could have witnessed this shit show (not really, but it was entertaining).
I could only live like that for so long. After some research and self talk, I finally got comfortable with the whole set up. I now disconnect my pump for 30 min max to take a shower. The first attempt sans pump was the best experience I’ve had in my life. Don’t ever take a shower for granted.
The Need For The Leash
The medicine has to stay attached to me constantly because it has a short half life. Meaning, it does not stay in my body very long once it’s performed its purpose. If I only took a pill 2x a day, it would be like starting over every single dose and we would get nowhere. PAH is a serious disease, and I need all the help I can get to get somewhere back to “normal.” There is no cure, so these meds are my only hope for living a full, meaningful life.
I’m still new to remodulin, so I’m learning all of the ins and outs. There is no max dose. You essentially keep increasing the dose every so many days until you just can’t tolerate the side effects anymore. For me, It’s like Russian roulette every 6 days. Maybe I will feel great, maybe a pounding headache, or maybe I will throw up in the parking garage of my doctor’s office. (true story)
Navigating Hell Week
One of the biggest, worst, most evil side effects is something remodulin users describe as “hell week.” The substance that the medication is mixed with creates an allergic reaction type response to the skin surrounding the pump site. Whenever a new site is placed, the skin around the site is not familiar to this response and hell week begins. The area surrounding the site becomes red, itchy, and ridiculously painful.
I was so naïve and passed my first hell week with flying colors. It was bad for 1 day, then barely bothered me after that. Seven weeks passed, and I found myself ready to place a new site to see what would happen. I was instructed to change the site every 6-8 unless it is compromised prior.
Talk about a kick in the gut. It was the WORST 10 days of my life. It wasn’t even that red! I can’t imagine how people feel who have more severe reactions. Every single muscle in my abdomen was in pain. I walked hunched over. One day, I didn’t even get out of bed. I couldn’t bathe, I couldn’t cook, I couldn’t sleep. Even wearing clothes hurt. My skin was so sensitive to anything touching or even grazing the area.
I did not prepare myself at all for this. I was not expecting it to be this bad. Literally every single slight movement was so incredibly painful. I lived with an ice pack pressed against my stomach along with some of my old maternity compression wraps.
Knowing what I know now, I will wait as long as possible to change my next site.
Adjusting To Life With Remodulin
I have to plan every single outing. For one, I have to make sure I have enough supplies and medicine on me (at the right temperature at that) at all times. I can’t go more than 2 hours without receiving the medication, and trust me I am not willing to even push that boundary.
I need to constantly keep track of when my syringe needs to be changed. That way I can make sure I am not in the middle of the best scene of Top Gun when my pump starts alarming…another true story.
The pump has a small 3ml syringe (cartridge) in it connected to iv tubing which is then connected to my site in my abdomen. The syringe is supposed to be changed every 3 days. I think that is mostly because the tubing technically “expires” after 72 hours. I have a schedule made on how to increase the rate/dose each week.
The site is a small button looking piece that is attached somewhere on my abdomen. There is a small catheter in the site that stay in my abdomen. That is where the medicine flows through.
Never Have I Ever
One pro of my new accessory is it finally gave me a reason to buy the Lululemon Belt Bag aka the glorified fanny pack I’ve been eyeing up. I have to travel with extra supplies if I will be gone for more than an hour, and this is the perfect bag to fit all my essentials! This is the first ever lulu piece I have owned, so I am very proud of it! Please keep this trend going so I don’t look ridiculous. I’ll forever admit, I may be rare, but I am as basic as they come!
You can find a few of my essentials for organization and maintaining some sort of normalcy through my post here.
It is still pretty shocking to me. Never did I think I would be connected to a pump. I’ve gotten plenty of infusion medications in the past, but never something that was permanent. I could be on this forever for all I know.
I don’t know how I got here, but here I am sharing my whole life story with the world!
Products That Help Keep My Head On Straight…Most Of The Time
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Water proof shower bandages – The ONLY thing I have found that is actually waterproof
I use this belt as an alternative to wearing the 90’s cellphone clip on my pants. I find it much more comfortable.
I use this bag to store all of my supplies in whenever I travel for more than a few hours.
I use similar containers to keep all of my supplies and meds organized.
I keep a monthly planner just for my meds and MD appointments. It really is too difficult to keep it all in my head. I write down every time I change my syringe and what dose I am at. I also mark down my site changes, and the last date I received a shipment.
I’ve learned so much from reading this! Thanks for sharing your journey with us!
Yay! That makes me happy!