Ugh we increased my #Remodulin to benefit my breathing but side effects are kicking my butt

No. Pump. Alarms. Last. Night.

I don’t know why I need to put in a 100% charged battery every night before bed (these batteries are supposed to be good for 72+ hours) but that’s the solution. And it’s easy!

It has been a full week, so I’m calling it SOLVED! And the problem is not me! Happy dance!

#Remunity #PulmonaryHypertension #PulmonaryArterialHypertension #Remodulin #PAH

Good morning friends!

I think we’ve solved The Case of the Mysterious Nighttime Medication Pump False Alarms! It was Dave’s unused but plugged in CPAP machine phoning home with diagnostics at night.

We need a few more alarm-free nights to be certain, but all the clues add up perfectly. I’ll fill this post with hashtags for anyone else who has this problem and will also write a detailed blog post full of useful keywords.

#PulmonaryHypertension #PAH #Remunity #Remodulin #Alarms #CPAP

My medication pump did NOT wake me up last night 😳 (I’m awake much too early anyway because I woke up and started analyzing why it hadn’t. THANKS, BRAIN)

Also, I forgot to wear my Apple Watch last night.

Coincidence??? Time will tell. (See what I did there?)

#PAH #Remunity #Remodulin

My pump woke me up twice but all before 2am so I was able to fall back asleep. I guess this is my life now.

From now on, you can assume I’m woken up several times in the middle of every night. I’ll stop reporting unless it’s egregious.

I will let you know if it DOESN’T wake me up. 🤣 #PAH #Remunity #Remodulin

Guess who has been awake since 3:45am because of medication pump alarms.

Now they have me swapping out the internal, once-a-year batteries (which, luckily, they already shipped in case this happened again with my “new” equipment). #PAH #Remunity #Remodulin

Awoken twice in the night by bogus pump alarms. But they’ve delivered a whole new set of pumps and remotes this morning so maybe tonight I will sleep. #PAH #Remunity #Remodulin

New #blog post is early today. http://kayray.org/2023/01/19/torstai-10/

#ChronicIllness #PAH #Remunity #Remodulin

Specialty pharmacy nurse came over today to train me to use my new #Remodulin pump system (#Remunity). I had read the inch-think instruction manual a few times already and she actually trusted me that I knew what I was doing! I filled one dummy cartridge and then did the real thing. She gave me a couple tips that aren’t in the manual and I’m good to go. #PAH #ChronicIllness

Welp, insurance is forcing me to switch to the new and improved remodulin pump system, “Remunity”. It’s not as bad as when I considered switching a few months ago — no longer need to fridge meds or reorder weekly. So ok. Now I have shiny new gadgets to learn about. The new medication pump certainly is SMALL!

#PAH #Remunity #Remodulin

@jess357 oh my god 😳 That is appalling and terrifying and somebody is gonna sue them.

I’m at 71 ng/kg/min.

I’m so sorry you need to be on the IV system. I thought about switching to IV, but my adhesive allergy made it impossible, plus I simply could not handle the whole mixing routine and all the medical waste. Happier on subq.

Stay well ❤️

#PAH #Remodulin #Treprostinil