I’m facing a decision that scares the heck out of me.

Living On Oxygen for Life

Let me set the scene for you, if you will allow me. *grin* You know I love a good story, yet this one is a hum-dinger! About a week ago, I put in a request for a refill of my heart medicine. It’s the heart medicine that helps with my Ventricular Arrhythmias and it’s called Cordarone. Now, mind you… I can take BRAND NAME only because the generic drug, Amiodarone and Pacerone, causes horrible headaches. I’ve tried a multitude of other heart medicines back in 1993 but they all affected my breathing causing severe shortness of breath.

So, I wondered why, when I got the email from my mail order pharmacy, which said that my Cordarone refill has been delayed. A few days later I called the pharmacy and asked wha’s up… you know? *raised eyebrow* This isn’t something I can go without. They told me that the medicine is no longer in stock and they didn’t have a date of when it would be arriving. That set off serious alarm bells in my head.

I went into my bathroom where my Cordarone bottle is and looked at the name of the manufacturer. Pfizer! Then I searched online to find their phone number to give them a jingle on my telephone. You know, just to ask them, wha’ up? I mean… seriously! I explained my situation about this is the only medicine my lungs can tolerate and I really need this drug. (Honestly, I was starting to freak out.) The people at Pfizer were super nice. They even put me on hold to find out what the problem was but they did NOT come back with good news. In fact, it was horrible news. Cordarone, they said, has been discontinued. But hey, there’s still the generic drug. UGH! I explained to them that I can NOT take that medicine.

After that call, I immediately called my doctor, who is a Cardiac Electrophysiology specialist, to tell them what happened and to beg them for an earliest doctor appointment available which was Monday. I went to the appointment but not only did I arrive to the wrong office (they have multiple offices!) but I had to beg them on the phone to allow me to still come in to see them instead of rescheduling. Can you imagine how stressed out I was? I had only 40 minutes to get to their office which was in a different city and there was major traffic but I made it and in one piece! Yay me!

Ok, so I’m in the doctor’s office talking it up with an older man about his mother needing oxygen. I guess when people see me they just naturally start talking with me or I’ll give them a friendly smile and they we’ll just start talking. I hate sitting in a quiet place waiting to be called. I naturally want to talk. *shrug*

I was able to talk with the Nurse Practitioner (because the doctor was out of country for the next week) for nearly an hour and it turns out that the only medicine that I could switch to is… That’s right… Tikosyn (I was offered that about 2 years ago and turned down but now I have no choice.) which requires a 3 day stay in a hospital to start it. To start this drug, I will have to stop Cordarone for 2 weeks prior to starting Tikosyn. If Tikosyn doesn’t work, I’m screwed. My other alternative is to try to buy Cordarone from Turkey through a Canadian pharmacy to fall back on in case Tikosyn doesn’t work. I’ve tried to buy it in the past from Canada, but they sent me Pacerone instead. I’m super, super stressed out… I need brand name. I have 28 Cordarone pills left. K took the news as well as expected. I’m going to call my doctor tomorrow and tell her I’m going to try Tikosyn.

K and I remember the experience I went through back in 1993 with my heart skipping constantly and it was not a good experience. We are going to try to make the 2 weeks without Cordarone as “low stress” as possible. Stress really effects my heart rhythm.

My only thought yesterday was … I really hope K brings home some ice cream for me. I could really use some. He did. He knew I needed it. I ate the whole pint last night. And it was delicious! Who knew Twix ice cream could taste so good??? Ok that’s my update.

Hey don’t forget to donate to my Need a Hug Project fund! I can’t wait to show you the afghan I’m nearly finished with. The donate button is on the right!

[March 2016]

10 thoughts on “I’m facing a decision that scares the heck out of me.

  1. I am so sorry to hear about your challenges with medication. I really hope the new alternative is an easy transition for you. Fingers crossed for you. Glad you enjoyed some ice cream πŸ™‚

    • Thank you Serena. I’ll be taking my cellphone & iPad so I can watch digital movies. haha! Now that I made the decision to switch medicine I feel a little less stress. I just have to cross the next hurdle of getting through the 2 weeks without heart medicine. BTW the Twix ice cream was AWESOME! 😜

  2. I would make sure your K stocks up on that ice cream for you. And I’m sending good thoughts your way…have you ever tried yoga and yoga breathing for stress?

    • Thank you for the good thoughts. I’ve never tried typical yoga. It tires me but what’s this about Yoga breathing? I’m definitely getting restocked on ice cream tomorrow. Grocery shopping day. Yay! Ice cream and vanilla double-stuffed Oreos!! Mmmm…yummy! πŸ˜‰

      • I also am a lover of ice cream. I remember my last long stay in the hospital (95 days) my husband would bring me a cup from 31 Flavors, some special wild something. Don’t remember the name but I loved it, so before I came home he went & bought the whole tub. Have you seen how large they are? haha Now that is Love.

      • If I bought ice cream in a gallon + size, I think I’d O.D. On it because I wouldn’t want to stop eating it. hehe! I only have a half serving left of my ice cream stash. *pout* ☺️ Whoa! I just noticed…. 95 days in the hospital? I hope you are doing better now. *hugs*

  3. You’re the first person I’ve followed on social media that also wears oxygen. Thank you for sharing your experiences with treatment and giving others hope! I’m keeping you in prayer and know that HE will this out because you still have story to share!

  4. I just wanted you to know that your posts are so helpful to me on my journey with oxygen 24/7. I can only imagine what you are going through with your meds being discontinued. I will keep you on my prayer list as you go through the next few weeks

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