Comments on: Remodulin

By: kara

kara — Mon, 16 Jul 2018 15:43:47 +0000

In reply to Robin.

Hi Robin, Congrats on joining the world of online commenting :)

I’ve been on Remodulin for over a year now. My main problem is that since starting it I have developed a severe allergy to ALL adhesives. We’ve tried every solution known to man, but the only thing I can do is change my site every day, swapping thighs so that the skin on each thigh gets a day to rest. And I use a TON of Sarna lotion, which is made of camphor and menthol and does soothe the itch for a little while. As you can imagine, starting a new site every day is not super fun, and with every re-order of supplies I need to explain very carefully that yes, I really do change my site every day so I need 30 sub-q infusion sets every month — but at least I don’t need to worry about making a site last for a long time, and the pain isn’t bad after that area of the body gets used to the meds.

I have been able to cut back on my o2 use, and don’t need it if I’m just chilling at home. I need 4 lpm all night and I use my portable if I need to carry in the groceries or walk up a hill or whatever.

Take care!

By: Robin

Robin — Sun, 15 Jul 2018 23:27:26 +0000

I was diagnosed with pulmonary hypertension in 2013,
I also use the cadd 3 pump with Remodulin,
I haven’t had skin issues, but do get infections at the site,
so I understand, you will see a real difference in your breathing ,
as for the walking test, hate it, I’ve haven’t tried putting it in my thigh,
I use my abs, also I have never t responded to anything on
line before.

By: nibin

nibin — Mon, 27 Mar 2017 05:17:43 +0000

Its an odd thought listening to your recording of Dracula now and just learning about you, even though the recording was made way back in 2005. So much time has passed since then…it makes me wonder about what I was doing back in November of ’05, like a nostalgic feeling. Hope you get better. Best Wishes

By: Catharine

Catharine — Sat, 25 Mar 2017 17:54:44 +0000

*hugs* Good luck – I hope it’s able to provide some relief!

By: Christy

Christy — Sat, 25 Mar 2017 17:37:08 +0000

Kara,
Good luck on the Remodulin. And it’s okay to be a difficult patient–I am too and I’m proud of it. You have to try what you think works best for you, and there is no shame in that. The nurse at my clinic encourages me to stand up for what I want because just because a doctor recommends something, doesn’t mean it’s the best option for me. I’m trying Ventavis again hoping I can capture my good pressures back, but if not the subcutaneous route would be what I chose as well.

I wish you a lot of luck and will try and follow your progress.
Christy

By: kara

kara — Wed, 22 Mar 2017 02:08:43 +0000

In reply to CarrieMtn. That's so nice to hear! Welcome back and thank you for the good wishes :) Perhaps the girls would also enjoy my recordings of The Lord of the Rings trilogy? I finished book three (The Return of the King) in 2015 but only remembered to put up links to the files last December. They're all on my "Kayray Reads to You" page. Best wishes to you all!

By: CarrieMtn

CarrieMtn — Wed, 22 Mar 2017 00:55:16 +0000

Kayray – My (now teenage) daughters and I listened to your stories quite a while ago. I’m not sure why we stopped. Life must have gotten busy. Today my 13 year old wanted to listen to the Hobbit again. So I looked you up. I’m so glad to have found you again. Both of my teenage girls commented on how they love the way you read. I’m sorry to hear you are hurting. I haven’t read back far enough to know your disability, but it sucks to be in pain so often. Please know our family in Colorado appreciate you and send you healing thoughts.