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Lung transplant wait list

Posted by mariakathleen @mariakathleen, Feb 16, 2023

Hi,
I have Antisynthetase Syndrome , diagnosed in Jan. 2019.
I got on lung transplant list Jan. 15, 2023.
Just waiting for that call!
Anyone else on list?

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Shari | @shariscorner | Feb 23, 2023
In reply to @mariakathleen "Hi, Just an update. This past Sat. I got a call they had lungs for me,..." + (show)
@mariakathleen

Hi,
Just an update. This past Sat. I got a call they had lungs for me, but it didn’t work out:(
They call it a dry run,
I went to hospital 10 pm., they told me surgery would be at 12 noon on Sunday. I was excited, nervous but so tired since I didn’t sleep at all in hospital with all the tests and interruptions.
Dr. came in at 11:30 am and said it was a no, donor’s lungs inflamed. I cried not just for me but for the donor and their family. Dr. explained of course they only want the healthiest of lungs. I’m so grateful we live in a country with excellent surgeons! I’m in Los Angeles.
I’m at least prepared for the next call!!

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I had my first dry run 2 weeks ago. Same type of deal where I was 30 min from surgery, all prepped with a catheter in my jugular and everything. Lungs had pneumonia. It was disappointing to have to then tell all my family and friends it was a no go. It’s all in God’s time and hands. Prayers for the donor’s family and that you get your lungs soon!

REPLY
mariakathleen | @mariakathleen | Feb 23, 2023
In reply to @shariscorner "Been on the list since Jan 27, 2023. Had a dry run last week. My heart..." + (show)
@shariscorner

Been on the list since Jan 27, 2023. Had a dry run last week. My heart races every time that phone rings!

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Hi Shari,
Thanks for your kind words!
So you experienced a dry run too! Hard to cope with that, but like I mentioned before, it’s for the best that they get the healthiest lungs for us.
Wow, you had gone to pre-op! I was just about to.
Where do you live?
I wish you and your family all the best and you are in my prayers! God bless you.

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Shari | @shariscorner | Feb 23, 2023

I go to Mayo Rochester, live in Des Moines. You?

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Shari | @shariscorner | Feb 24, 2023

I received another call last night. We shall see if this set of lungs is good. Surgery scheduled for 8am today. (2/24)

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mariakathleen | @mariakathleen | Feb 24, 2023

Hi Shari,
Oh my goodness, good luck! I’ll keep you in my prayers.
I live in Los Angeles.

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