Hello All,
Well it is official, last night I was put back onto the transplant list here at UNC. Things have proceeded so rapidly, and the team here really stepped up the pace and got all the testings and approvals ok'ed ASAP. My LAS (lung allocation score), is vey high this time. Some 30 points higher then when I was listed for my first transplant. That is just an indication into how critical my health has become. The wait should hopefully be very short. It could be tonight, tomorrow, next week. We really don't know, but hopefully it won't be long. It is hard being in this situation again. Totally different thoughts occupy my mind. I hate that I have to go through this again, as a recipient. Am I taking lungs from someone else who has been waiting much longer? Yes, probably. Is that fair? I don't know. Whats fair? I know that if I am lucky enough to get another donor in time, I will fulfill my obligation and do everything in my power to recover and honor that person. I've shoved my chips all-in.
Now the wait begins. Even harder this time to keep my mind off of things, as I am trapped here in the hospital. My breathing is very labored and I am on a high level of continuous oxygen. It is difficult for me to do even the smallest of tasks. However, I try and keep stretching, standing, and walking in small amounts. Just 3 weeks ago, although not feeling great, I was able to get around. The progression has just been so rapid.
Rebecca has been a huge help the last few days making sure I have what I need and keeping me on the doctors radar. Everyone is doing there best and it feels good to know so many people are doing all they can to make sure this happens and I get one more chance.
The next post could be the call. Thanks for everyones support this time around as we go into waters that very few have adventured.
-Mitch
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16 comments:
Mitch,
I've never commented here, but found your blog searching for transplant info/stories. I have been evaluated at UNC, but am not listed as active at the present. I was so sorry to read you are going through rejection. I hope new lungs come soon and will be praying for you.
Bryce and Cole send their love! Everyone is asking about you and is sending positive thoughts and vibes. Love you.
Tracy
Mitch,
I've been following your blog since the beginning-thank you for sharing your journey with us.
My thoughts and prayers are with you.
You have such a wonderful realistic optimism about you...and what a fabulous family of support you have...don't lose sight of that!
Much love and well wishes from us here in NY.
Only the best-
Margarete Cassalina
Hi Mitch--I work with your mom at the CFF, she hired me 10+ years ago. I have always been in awe of her tireless fight against such a horrible disease. And after reading of your journey, I know where she gets her inspiration. I am thinking of you, Rebecca, Simon, Mathias, your mom and dad and whole family every day. Happy thoughts and prayers are with you.
Love, Jen Reid
Mitch,
I've followed your blog for a while now but never commented. You and I went to high school together. I also know Hunter and Fara from my neighborhood. In fact, they were the ones who told me all about your first transplant and I've followed your blog since then. I felt the need to comment to let you know that you are in my thoughts and prayers daily. Totally rooting for you,
Chris (Hall) Adams
Us here again in South Florida thinking of you all and keeping our fingers and toes crossed. Hang tough my friend and thank you guys so much for keeping us all updated on your journey. We love you. You've got me hooked on lyrics.
I'm not afraid to take a stand
Everybody come take my hand
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just let you know that, you're not alone
Holla if you feel that you've been down the same road
Mitch,
I'm sorry you have to go through this part of the journey. I hope the silver lining is that the process is moving quickly for the second transplant. The gold lining is your amazing spirit and attitude as well as that of your family. I am pulling for you all the way. My thoughts and prayers are with you and your family.
Scot
Go Mitch - It's good to hear that spirit back from you. Your fans are ready to cheer you on. Luck and love, joan. xoxoxoxoxo
You have no idea how much I look forward to your blog.....I hold my breath hoping it will be good news. We are all rooting for you and next year at this time I want to race you around the block.
Love you Mitch
Renee
Hey Mitch,
Just got the FB post from Angela about your condition. Thanks for sharing you journey. It helps others deal with difficult times and gives a bit of reality check for those who are in good health and take it for granted. I will continue to follow along as you venture on and triumph over this setback. Sending prayers and strength to you and your family.
Charlene Emmons UF OT 96
Dear Mitch-
Your courage continues to astound and inspire. We follow the blog and wish you much love and the best positive energy we can send! We are pulling for you
and hope the call comes very soon! Thanks so much
for sharing your journey.
Love from us all,
Debbie, Harry, Gavin & Brenna
My prayers are with you. You can do this!!!! Best Kasia
Mitch, we are praying for you and your family.
Sharon, Vic, Sophia, & Amelia Wilhelm
Scott Wishnow.
Mitch...I wanted to say that our thoughts and prayers are with you and your family.
And as a fellow Phish phan I have enjoyed the many references on your blog. I even got my mom asking about the band "Fish" She has got a long way to go...but at least she is trying.
Mitch. I think of you stuck there in the hospital and sympathise hugely. I can't imagine what you are going through, but keep on hoping, keep on believing, keep on trusting that the perfect lungs will be found very very soon. It's been great sharing your journey and corresponding with you a bit over the last few months and I look forward to that continuing after the op. Before you know it you'll be breathing freely again. Will & Vicky
With so many people pulling for you Mitch you must stay strong. How else would we all learn about phish? love you mom
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