Almost on the list!

Just a short update:

Had my final appointment today for dental exam and clearance which thank goodness I passed with flying colors (and my teeth are super clean, had put off dental cleanings during covid and I was well past due). 

Aside from a double booster vaccine from a nurse on Monday all my tests are done, I have been watching them come in online and although I am not a doctor I can safely assume with my knowledge and understanding that I am likely all cleared to be listed.

What this mean is that on Wendsday the transplant comitee at the hospital will discuss my case at their weekly meeting and if all agree I should be listed and vote yes I will be listed within 24 hours.

At my consult with the surgeon they did remind again that due to my blood type being type o positive, they may have to "park" me on inpatient for several weeks to a few months in order to get me heart.  I was already aware of this but nice to hear it directly from them so I know that my expectations are correct.  So after listing I will likely undergo a third right heart catheterization and if my numbers still look bad or I am declining more they may "park" me. Sorry I got a kick out of the way the surgeon phrased it like that, it gave me a laugh so I think I will use it.

Not looking forward to having to go this route and not spend my wait at home but I will take weeks stuck inpatient over no heart at all.

Finally got caught up on some sleep today, stress levels are going back down, I am hoping after some food and a warm shower I might luck out and sleep right through the night for a change.

Off to fill my belly, I will let you all know as soon as I have news.

Thanks to everyone who has sent messages and comments.  And those who I know may have read and sent positive thoughts my way!  I hope y'all are in good health and your own struggles easy right now.




by AgentX86 - 2021-06-12 01:10:29

That's really good news, if any such news can be considered"good".  Weeks to months in the hospital before surgery would be enough to put me over the edge.  After, it was pretty easy.  I wasn't going anywhere. For several days, the bathroom was a trek.

Have a good night and I hope you have many more. 

  P.S.  Netflix and a tablet will be your friend.


Yes, almost there

by Gemita - 2021-06-12 05:04:57

Dear ASully,

Well let us hope "parking" if needed will keep you safe until a suitable donor heart is found.  You will certainly be in the best place for medical support if needed.

I am impressed to hear you have been watching your test results come in online.  I am still struggling to get online access to health records from our general doctor, although many hospitals are now giving online access of results of hospital consultations/investigations.  

I am keeping my fingers crossed that next week's transplant committee will list you immediately and that you will not have long to wait.  Thank you for taking us with you on this incredible journey. I have a good feeling that this will end well.

Gemita xx

One more giant leap!

by Julros - 2021-06-12 09:56:00

This indeed is good news! Yeah, hospitals are not the greatest of hotels, but I am sure the nurses will get to know you and do what they can to keep you comfortable. And it will make fine-tuning your inotropes a little easier. 

Thank you for sharing with us and inviting us along on your journey. {{{Asully}}}.

Excellent news!

by ar_vin - 2021-06-12 12:21:17

You have all our best wishes and I hope you get a new heart soon.

A close relative was listed for a pair of new lungs and spent several months in-patient when she received her new organs. I know you're on top of your situation with your care team and know this but please prepare your family for what could turn out be a somewhat longer wait than what *they expect*.

Being on a pre-op monitored exercise regimen (whatever your current situation will allow) will help immensely with your post-op recovery. Same with your diet.





great to read you had s9me good news

by Tulp - 2021-06-12 22:48:39

Hi Asully

Great news ! Sleep and rest andgood mind set.

I agree with all the above posts.  Crossing my fingers for you. And sending yiu the best vibes so you will be as zen as possible.


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