Getting on the list..

Good morning y'all,

I have good news to share, but first I have to tell you the funny part.  I went to bed pretty late last night and was sound asleep about 20 min ago when the hospital called.  I answered the phone and it was my cardiologist, I was still half asleep.  His connection was bad so I could only make out half of what he was saying.  I was able to make out that they are listing me for a heart sometime in the next 24-48 hours, I was so sleepy and mildly confused trying to make out what he was saying that I had no emotional response and probably sounded like a weirdo.  My husband said I sounded like Inwas receiving an appointment reminder not the call that said I was getting on the transplant list.  Honestly I am still not awake and I don't think it has sunk in.  But if u can imagine someone reacting like a robot that is what I sounded like because I was in such a sleep stupor!  My doctors probably think I am a total weirdo now lmao.

So I guess the news revealed itself in the story.  I am getting listed for a heart transplant!  I will get a call again when I go "live" on the list.  I imagine once I have woken up I will be extremely happy about this, but those sleep chemicals are still messing with my head! 
 

I apologize for not giving an update for so long, as I know some of you have been waiting to hear news from me.  We had some delays, A couple of appointments/consults that I needed to go through before they could make a decision.  Now the real wait begins!

Thank you to everyone here who has been a support to me through this journey so far, know that many days and nights y'all were some of the only comfort I had and you have literally been a part of my strength!

I was asked again when he called if I was interested in a hep C heart (this is a newer thing for this hospital).  I of course said yes.  I had hep C years ago and was treated and "cured", so for me that was an easy decision I know I just have to do the twelve weeks of pills again post transplant.  They did have a liver specialist check and make sure I was safe to get a hep C heart should I want one and I was cleared for it.  I guess there is an extra step in the listing process to list me as open for hep c heart offers, I don't have the details on that yet but I imagine there is some paperwork I need to sign.

I will keep y'all updated of any more news!

9 Comments

Reassuring news

by Gemita - 2021-07-08 13:18:43

ASully, I was getting a bit worried but your message came just in time.  How funny that you received the message without showing any signs of emotion.  Maybe it was the best way.  You need to conserve your energy and any excitement as well (sorry).   Am I being horrid.  Yes I know I am, but you are doing so well and I have every intention of making sure you stay that way.

Can you tell me if a hep C heart would carry any extra risk for you?  I understand about the need for a twelve week pill regime following transplant, but won’t that come at a price, or are they (and you) not concerned?  Is the benefit of getting a new heart potentially sooner worth any risk associated with receiving a "hep C heart"?  I note though you have been cleared by the liver specialist, so no doubt questions have been asked and satisfied.  Looks like all systems go.  Please stay calm and let us know as soon as you hear anything.

On the list !

by Dixie Chick 65 - 2021-07-08 13:39:36

This is fantastic news !!   Funny story too. Hoping it will be very soon !

 

DC65

Great news!!

by AgentX86 - 2021-07-08 19:03:44

That's wonderful. I know you're hyped, even though you're too sleepy to acknowledge it.  I always get a little concerned whey you don't show up for a while but I realize that you need to conserve your energy.  If you need anything, let me know.  I'm right around the corner.

As far as being thought a weirdo, no, I won't go there...  ;-)

 

One step closer!

by Julros - 2021-07-09 01:14:50

Good news, indeeed; thank you for the update. I think if offered, I would take a Hep C organ as well. The treatment, albeit pricey, is quite effective. 

Every time I read one of your updates, I am reminded of my very dear friend, Dale. I worked along side him, watching his EF go from 25% to 50% after a CRT pacer was implanted, but then go back down again until he needed milrinone. But once he got a new heart, he was pink again and so full of life. And he is a little on the weird side, lol. 

Heart Transplant

by Selwyn - 2021-07-09 08:00:41

Wishing you all the best.

I play table-tennis with a heart transplant recipient. He also plays football, swims, and does vollyball.  He attends as a competitor the world transplant games. He has had a new heart for at least 10 years. 

For 23 years I knew a liver transplant patient, until I moved on, he was quite well.

Amazing

by TLee - 2021-07-09 12:11:16

You just have to marvel at medical science! May I add to the wishes that this will be the beginning of a very healthy time in your life!

Thanks everyone for the encouragement and well wishes!

by asully - 2021-07-10 01:58:15

Julros- Your friends story sounds so similar to mine.  That must have been part of how you called it that I probably needed milrinone about a week before I found out I did!  Very encouraging to here he is pink and well!  That made me laugh because although the milrinone keeps me pink more than I was before I still frequently begin to turn into a smurf!

Selwyn- So encouraging to here about a successful transplant that is ten years and still ticking!  I know this is not unheard of anymore but much of the literature still says 10years is the average.  I hope that when I get mine (if I get mine) I will be able to get at least a decade or two of active living.

I honestly don't even remember what it feels like to not have heart failure, my idea of "normal" has changed so much.  I am hoping for warm feet and the ability to hike, bike, maybe ride horses, garden, and lift weights again.

I will be sad to no longer be a pacemaker club member (maybe y'all will let me stick around)

Great News

by Marybird - 2021-07-10 14:06:04

Though I never doubted that you would get on the transplant list. It's great hear that your journey is progressing, and that gives you hope for many good quality years ahead of you. 

Interesting about the hep C heart, who woulda thunk it, yet when you think about it, hep C is curable now and so they figure accepting this group as donors expands the donor pool and availability to those who need those hearts. 

As always, my very best wishes,prayers, positive energy and whatever it takes as you begin this part of your journey. 

I can't imagine the day that you would not be welcomed with open arms by the good folks who populate the Pacemaker Club, besides, as others have said, we look forward to your updates ( when you're able to do them), as well as your perspectives on things. So don't go anywhere. 

Mary

So happy for you

by islandgirl - 2021-07-10 22:30:33

What great news!  Keep us updated.  

Sending prayers and positive thoughts.  You are an inspiration to me.

Karen

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Life does not stop with a pacemaker, even though it caught me off guard.