Day Three — Tikosyn & the following month

Living On Oxygen for Life

By now, you probably realize that I went home with a seven day supply of Tikosyn. Hooray and Lucky Me! I get to be on another high-dollar Specialty medication that THANKFULLY my health insurance will cover. I’m kneeling down and thanking Jesus right now….and…. *amen!*

Getting Tikosyn from a pharmacy was a pain in the rear end because it is a Specialty medicine and it must go through the “specialty” mail order pharmacy which is different than the regular mail order pharmacy. I could have gotten my first month’s supply of Tikosyn through a regular pharmacy like a CVS or Walgreen’s but I would’ve had to pay $600 for the 30-day supply. Yeah, right. I don’t think so. I’ll do the little extra leg-work to get the prescription faxed to my “specialty pharmacy” myself. That’s what I did. I got the correct fax number, stopped off at a CVS, explained what I needed them to do (showed them my notes I took while on the phone with the specialty pharmacy while in my hospital room), and off the fax went into cyberspace to hopefully not get lost on the way. I called numerous times everyday until they could verify that they received it but it had one tiny problem on the prescription. There was no pill count on it, making it impossible for the pharmacy to process it. Now I had to somehow get the doctor’s staff on the phone with the pharmacy (each saying that the OTHER needs to call them first). OH! You’ve heard of that game too? Grrr… I finally got the pharmacy to put me on hold to dial the doctor’s number to correct the prescription. Finally, that’s taken care of which was great because I wasn’t going to go back into the hospital for 3 more days because they couldn’t iron this problem out in time. I had to have my 30-day supply within 7 days or it’s back in the hospital for me to restart Tikosyn.

Tikosyn is NOT a medicine that a person can take just whatever time she or he remembers to take it. Oh no! This stuff, I actually have to set my alarm clock on my cellphone at the same times everyday, twelve hours apart. Granted when I left the hospital, they had my doses at 4am and 4pm. If you know me like I think you should by now (okay… I’ll cut the newest readers a break.. Here’s your chance to learn something new about me. *cheesy grin*), I am a night person. I don’t like waking early in the morning because that’s when I get my best sleep. Makes sense to me too! So, over the first week and a half at home, I slowly bumped the night time medicine time an hour later every few days and adjusted the morning time accordingly. By the end of two weeks, my medication time was 7am and 7pm. That’s a bit more achievable for me.

Now that I’m good and into taking Tikosyn, I’ve noticed that my blood pressure is back to normal but I have increased shortness of breath which is very noticeable. I’m getting very discouraged because I went today to the Cardiologist who prescribed Tikosyn. He ran an EKG and said it was normal and that my shortness of breath isn’t from the heart medicine. If I got paid for every time I heard THAT sentence…well, I could buy myself a whole lot of ice cream with the money! Ugh! I just realized I’m out of ice cream too! I should have stopped on the way home. Drats!!!

My cardiologist said for me to talk to my PH doctor. Sometimes, I feel like I’m on a Merri-Go-Round without all the pretty horses to ride. Or is that a Carousel? At least I still have things to look forward to in life. It looks like Klondike, my rubber chicken will be off on another adventure next week and next month I will attend the PH International Conference. I’m super excited about both. My next post will be about Klondike’s adventure! Stay tuned in!

Be well! Don’t forget to subscribe to my blog so you won’t miss anything exciting!


8 thoughts on “Day Three — Tikosyn & the following month

  1. I sure can relate to your frustrations! It pays to be your own advocate. It’s the only way things get done!

      • OH my gosh, I sure know that frustration feeling. I am feeling it now myself for different reasons of course. And your so right about already feeling tired, which I am, but not giving up. 🙂 I haven’t talked yet about myself much. I also am on oxygen for life. Now that just gave me a flashback that I may have told you already. My short term memory issues are so frustrating for me & my husband. On another note I am happy to hear you got the medicine issue taken care of, & hope your doing well with it. I haven’t been on the computer for a week or so. You are one tough lady, lol

      • Thank you Keli! I completely understand about your short term memory. Mine is terrible. I think mine is from long term high CO2. I am trying to get the hospital lab results to my Pulmonologist now to have her figure out the increased SOB. Being bounced from doctor to doctor makes me feel as if I’m in a pinball machine. Haha!

  2. I agree with you about none of this being easy. I feel like I am in the middle when it comes to heart Dr’s and Pulmonary Dr’s. I think the worst is being SOB all the time. 6 stairs does me in or making the bed.
    Can’t wait to see pictures of Klondike on his adventure.
    Hope you can get an answer to your SOB. Praying you will rally for the conference next month.

    • Thank you Marilyn. I am determined to go to the conference and have a load of fun. K is going with me and we’ll have my dog Rocco with us in the room since he doesn’t board well. He’d miss K something awful. I can’t wait to see Klondike’s pictures too! I tried to make his new hat as German as I knew how.

  3. I sure wish my sis in law could go herself to the conference, my niece was diagnosed last year with PH, she is only 7yrs. old. Not on oxygen though, thank you Jesus. But has some sort of port they have to change every now & then, very painful for her.

    • Did your sister-in-law try for a scholarship to see if their trip would be paid for especially if she and her daughter would be a first-time attendee. She should check out It sounds like your niece is doing pretty well with the PH medicine, right? I will pray for her. Thank you for reading my blog Keli. You’re so sweet to leave your comments. ❤️ 🙏🏻

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