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Listed.

Listed.

waynes-world1-small

Of all the most exclusive, rarest, lists one hopes to be on: Forbes list of the richest people in the world, one of People Magazine’s most beautiful, David Letterman’s top 10 (OK, let’s face it, the only other list I have been on is the honour roll…barely…but you get the point), the heart transplant list is the LAST place I think any of us can imagine being. You know what else is cool? I am ranked number 1. NUMBER  1! Well, status 1, actually.

What does that mean? It’s kinda hard to explain but I will do my best.

<WARNING! EDUCATION BREAK>

Status = 0

During the Fall premiere of this sitcom, I was ranked at 0 which means ‘on hold’. Basically I was accruing time on the list while I underwent the MitraClip procedure. This procedure was to fix my severely leaking mitral valve in hopes that it would help me with symptoms (i.e. shortness of breath, exercise intolerance) and perhaps provide some additional benefit – like staving off a heart transplant for another couple of years. Funny thing here is – the MitraClip procedure is a completely experimental procedure and there is NO DATA for people like me – since I am apparently young (HAHAHA. Cough.) Anyway.  While waiting for this all to shake out, I was on hold. Thus, STATUS = 0.

Limbo is fun.

Did I mention I am so special they gave me TWO clips? #imaluckygirl

Status = 1

Roughly two months following my MitraClip ‘installation’ I do feel like I can walk farther because I no longer have shortness of breath and in the mean time I also entered Rehab (well, medically supervised cardiac exercise but it sounds cooler if I say ‘I have to go to rehab’ a la Amy Winehouse) – which is helping to make my body more efficient despite my ticker issues.

Fast forward through the commercial break to December 9, 2014.

Following a Cardio Pulmonary Exercise Test (good times), I had a follow-up appointment at the Heart Centre. Although I felt I kicked that tests’ ass, it was all in my mind. No real changes since August.

As of December 10, 2013 I am officially STATUS = 1. Basically this means I am very sick, I need a new heart, but don’t have to be in the hospital or have any mechanical assist devices….at least not yet. If you are interested in learning more about how this particular list works, at least here in BC, see the Listing Status for Cardiac Transplantation from the HeartCentre.

</EDUCATION BREAK END>

So, what is it you need to learn from all of this?

Although I am very sick and have a broken heart, I am, and I remain, number 1 on this most exclusive list.

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7 Comments

  1. Carolyn Thomas
    January 26, 2014 @ 6:32 pm

    Jilliane! I love the way you write! Thanks so much for following me on Twitter – otherwise, I might not have found your fabulous site. I’m already looking forward to reading your next post, and keeping fingers and toes crossed for continued uneventful (boring even) health status as #1.
    regards,
    C.

  2. Carolyn Thomas
    January 26, 2014 @ 6:33 pm

    Ooops, so sorry, I just realized that I spelled your name wrong. It’s past my bedtime (6:30 pm) and I’m tired, what can I say? 🙁

    • Jillianne
      January 27, 2014 @ 10:53 am

      Carolyn,

      Thank you for your kinds words of support – and the retweet!

      I am not sure but I think we met at a women’s heart group at RJH?

      I hope that once I get through this to find a way to continue to educate people about heart failure, especially in young people, and to teach about the importance of heart health in general. Perhaps we can work together?

      Jillianne

  3. Don Beadle
    January 27, 2014 @ 1:34 pm

    Hello Jillianne
    You are tops on my list anyhow.

    I went through the Healthy Heart program at St Pauls in 2010.

    Sending thoughts and prayers your way
    Hope to stay in touch, Don.

  4. Vivian Forssman
    January 27, 2014 @ 9:27 pm

    Been thinking about you, and so went looking for some news, and was glad to learn from your late Jan post that you are Number 1. Please don’t forget, when you are feeling low, that there are lots of folks rooting for you that perhaps you would not even think are paying attention. Hope that hearty heart comes your way, very soon.
    Vivian

  5. Dad
    January 28, 2014 @ 4:17 am

    To my “little girl” –

    (a.k.a. #BatteriesNotIncluded)

    When you were married, I asked to read the gospel in our Anglican tradition, and Dean Neil announced that in all his experience, the passage I selected had never been read for a wedding. But we all got the message, and his homily was complete, as he said.

    Mark 5:41 “He took her by the hand and said to her, “Talitha Cumi” (which means, “Little Girl, I say to you, get up!”)”.

    In reality, this was only a part of the message, because in the previous verse, he put out all the spectators and took her father, mother, and disciples into the room, quite deliberately, to be witness.

    Whatever her malfunctioning units in the passage, He installed new “batteries”, and “Little Girl” arose hungry for feeding.

    So now the message is complete.

    You have been years now in heart failure, and yet have accomplished so much. Whatever happened on that fateful day of your first heart incident, you and Mom and I, have a new energy, and we had to tell it at your wedding.

    Today, this energy is is not depleting, and is increasing by all the prayers in our Church, and among all our friends and those who know you, from all faiths.

    You know you have the spirit to keep going, and that is the part I see #BatteriesIncluded.

    I only have one Little Girl, and she is so easy to Love.

    Dad