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Flolan Preparation or, How to be More like Rambo

Finally, after weeks of waiting for paperwork to be finalised, it happened. I went into hospital and had a Hickman line placed leading from a vein in my heart right out into my wonderful new world of Epoprostenal dependence.

Hickman Line

The line is attached to a small pump in a black bag with a shoulder strap. I have been encouraged to accept and ‘bond’ with my pump by giving it a name. The bonding part is fairly redundant as we are definitively joined by a meter or so of clear tubing, whether I like it or not.

“Heartlungthing, do you take this pump to be your constant companion? In sickness and health, in good times and bad, until death do you part?”

A dutiful, and compliant patient, I stand at the altar of Medical Science and solemnly declare, “I do.” But inside, it’s a grudging consent. More like, “Well I bloody well have to, don’t I?”

Dr Most Dreadful was the one who told me I had to. He also thought I could stay on this medication for years and have a much better quality of life. However, last week the head of the transplant team informed me that the Flolan is only intended to “hopefully” get me through time on the transplant waiting list to when I get the surgery. I am to go on the list ASAP, and if I am somehow chosen for a transplant in a matter of weeks, before we even know if the Flolan will work, I am advised to have the transplant regardless.

I don’t know who I should believe right now.

So rather than dwelling on the multifarious frustrations of life in a confused and often disorganised medical system, let’s turn to something new, exciting, inspiring, and most importantly, educational… Well, not really. But here it is:

The Daily Flolan Routine

Washing Hands

"Wearing a 'Rambo' style headband is absolutely necessary for correct hygiene procedure" (Florence Nightingale, 1855).

Setting Up the Tray...

Drawing Up Diluent

The Flolan is Mixed with 10ml of Diulent.

Mixing Flolan with Remaining Diluent... (*Sigh*... Are we finished yet?)

Golly Gosh! Don't Forget to Clean Your Hands Regularly with Alcohol Gel.

Pushing the Mixture Through the Filter into the Cassette (this part requires pure brute strength as well as a helpful assistant to raise the cassette).

Removing Air from the Cassette

Attaching the Cassette to the Pump (locking it in place with a coin. Evidently, a most solemn moment...)

Putting the Line Through the Air Bubble Detector

Getting Rid of Air in the Line (you really don't want air.)

Checking the Settings...

Clamping both lines and attaching to Hickman line (use alcohol gel and wipes to maintain hygiene of incredibly scary line that leads right into heart).

Viola! Zee Final Product!

So there you go. The exciting world of habitual drug use. I haven’t photographed every single stage, so if you’re using this as a guide; well, don’t.

Most difficult for me, will be organising items such as back-up batteries for the pump, methylated spirits, syringes, needles, and all the other necessary paraphernalia. For folks at home who might not know about this drug, if you aren’t able to mix and administer the dose in time, you can become ill very quickly (I’ve been told three minutes, but I think it’s more like twenty minutes to half an hour) and you are advised to get to a hospital as soon as possible. So I’m pretty nervous about making sure I have everything I need to make it happen on time, every day.

As for a name for the pump, I remain undecided. I know of a patient who refers to their pump as ‘Flo’, and I’ve considered calling mine after Florence Nightingale (who, as well as a pioneer female nurse, was a formidable organiser). In the end though, I’m not really into giving names to inanimate objects, especially this one.

It’s not like other gadgets people have. It is not an ‘iPump 4’ and there are no ‘awesome’ aps you can buy for it. It doesn’t come in an array of ‘hip modern colours’ or have a touch screen. It’s grey and blue colour evokes aged care homes,  hospital waiting rooms, and boring office carpet. It makes weird clicky-winding noises every time it injects medication into the line (at least I think that’s what it’s doing). It does have some potentially interesting functions, but as yet I’m too terrified of accidentally locking it in the wrong mode to investigate very far.

In normal operation mode, the screen displays how much of the drug is left and spells out the letters ‘RUN’. Should I take this as a sign that I should ditch the pump and sprint as far away from it as possible? Doing so might make me a bit out of breath.

Rambo Would Never Run Away from Flolan... Would He?

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8 responses »

  1. Congratulations on this great article.
    My pump for the first 2 months was called bugger and the spare pump called bugger 2. Named by my husbnad as we both were not happy me having to cart it around every where. I then gave it a name for my nephews to help them accept it, only to be told by my 4 yr old nephew was machines dont have names. So now it is gernally referred to as the pump.

    Reply
  2. hi, my 19 year old son is on flolan treatment and i often mix his daily dose.i have found by inserting the loaded syringe and fliter into a new, sterilised silicon/caulking gun and using this as a driver makes pushing the mix through filter a lot more user friendly

    Reply
  3. Mary Ann Mangini

    My husband recently was taken off of Flolan and I am desperately looking to give some of his remaining (unopened) boxes of Flolan and supplies to someone. If anyone is interested please reply to this post. I just cannot bring myself to throw this away…

    Reply
  4. “Flolan Preparation or, How to be More like Rambo ” ended up being a superb
    blog post. If solely there was far more personal blogs such as this one in the online world.
    Nonetheless, many thanks for your time, Pansy

    Reply
  5. I so thank you for this great article. My mom is currently in the hospital trying to learn how to mix this stuff. She is so frustrated and overwhelmed. I am a nurse and live 5 states away. I am sending her the link to your article b/c it will her day. Best wishes to your health!

    Reply
    • Mary Ann Mangini

      Lynne
      Is your mothers insurance company paying for Flolan? I have several boxes of unopened Flolan and many supplies also unopened. Unfortunately my husband was taken off Flolan after receiving an order. I have tried to return it but under law the pharmaceutical company cannot accept it. Please email me if you are interested and I will mail it to you.

      Reply
  6. You could name the pump “Lover” and when you are ready to get some sleep, you can say, “Come on Lover, let’s go to bed.” 😉 I hope you are doing well.

    Reply

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