Success at University of Kentucky

juliesdreamteam

New member
On December 19th, my Julie was successfully transplanted at the University of Kentucky. I can't tell you the happiness in my heart for her. I wanted to share a couple of things with you all:<br>1) In our CF community, we MUST change our mindset in so far as when we seek transplant options. For 40 years, Julie did as doctors ordered. Through no fault of her own, she arrived at UK in dire need of a transplant. Her score was 81. We, as a CF community, have to find a way to get to the transplant docs early enough. Those that have been transplanted will tell you that walking is critical to success. It's easier to walk 6 months to a year prior to end stage CF and having to prove your willingness/desire for transplant during the end is an unnecessary, avoidable task. If I can offer any advise, I would say: Don't wait until you are too sick to be transplanted. Organs aren't in a warehouse somewhere and you deserve to be transplanted when you are "healthy" versus wondering if you can make it another day, hoping for lungs.<br>2) We should ALL be organ donors. We don't know the family that donated their loved one's lungs but we know that the ICU was packed with 4 families that received the gift of a second chance with lungs, heart, kidneys and a liver. I have the benefit of knowing that our donor's gift to Julie will help us continue our pursuit of a cure for Cystic Fibrosis for 70,000. My hope is that I'm able to tell the donor family that they didn't just save the lives of 4 people, their loved one will potentially help save the lives of all of those with CF.<br>I'm done rambling now. Gotta spend some time with my wife. Julie Ice, my hero.<br>God Bless You All and Merry Christmas.<br>Roy E. Icewww.juliesdreamteam.comCURECF!!!
 

juliesdreamteam

New member
On December 19th, my Julie was successfully transplanted at the University of Kentucky. I can't tell you the happiness in my heart for her. I wanted to share a couple of things with you all:<br>1) In our CF community, we MUST change our mindset in so far as when we seek transplant options. For 40 years, Julie did as doctors ordered. Through no fault of her own, she arrived at UK in dire need of a transplant. Her score was 81. We, as a CF community, have to find a way to get to the transplant docs early enough. Those that have been transplanted will tell you that walking is critical to success. It's easier to walk 6 months to a year prior to end stage CF and having to prove your willingness/desire for transplant during the end is an unnecessary, avoidable task. If I can offer any advise, I would say: Don't wait until you are too sick to be transplanted. Organs aren't in a warehouse somewhere and you deserve to be transplanted when you are "healthy" versus wondering if you can make it another day, hoping for lungs.<br>2) We should ALL be organ donors. We don't know the family that donated their loved one's lungs but we know that the ICU was packed with 4 families that received the gift of a second chance with lungs, heart, kidneys and a liver. I have the benefit of knowing that our donor's gift to Julie will help us continue our pursuit of a cure for Cystic Fibrosis for 70,000. My hope is that I'm able to tell the donor family that they didn't just save the lives of 4 people, their loved one will potentially help save the lives of all of those with CF.<br>I'm done rambling now. Gotta spend some time with my wife. Julie Ice, my hero.<br>God Bless You All and Merry Christmas.<br>Roy E. Icewww.juliesdreamteam.comCURECF!!!
 

PinkPigg

New member
Hey Roy,

It's Stephanie. I met you at the Festiv-ale beer tasting in Indianapolis. I'm SO HAPPY to hear that Julie got transplanted. I know she had been struggling for some time.

Congrats to you both. Now you can really live the dream.

Peace,
Steph
 

PinkPigg

New member
Hey Roy,

It's Stephanie. I met you at the Festiv-ale beer tasting in Indianapolis. I'm SO HAPPY to hear that Julie got transplanted. I know she had been struggling for some time.

Congrats to you both. Now you can really live the dream.

Peace,
Steph
 
YAY Julie & Roy!! Good advice Roy. I just have to say WOOO HOOOO!! Best of health to Julie for sure, and don't forget to get a little sleep yourself once in a while.
 
YAY Julie & Roy!! Good advice Roy. I just have to say WOOO HOOOO!! Best of health to Julie for sure, and don't forget to get a little sleep yourself once in a while.
 

juliesdreamteam

New member
Thanks guys! She's doing fantastic! I couldn't be happier for her. You can see a post tx interview by a local news station at www.wlky.com (search for double lung transplant or Cystic Fibrosis).

Just got back from the post office. Donated her VEST to a family with a young cystic son in Ireland. Apparently the socialized medicine in that country won't pay for a Vest. Enjoyed the feeling it gave me donating it so much, I reached out to another transplanted Cystic and he gave me his Vest to send to the United Kingdom to help an 11 year old girl.

@ Steph. I know how much we've poured into finding a cure. With Julie at 100% someday, I know that we are absolutely going to turn up the heat on this disease. We all know it needs to be cured. We're going to do everything we can to make it happen.

You all enjoy the New Year and CURECF!!!

Roy
www.juliesdreamteam.com
 

juliesdreamteam

New member
Thanks guys! She's doing fantastic! I couldn't be happier for her. You can see a post tx interview by a local news station at www.wlky.com (search for double lung transplant or Cystic Fibrosis).

Just got back from the post office. Donated her VEST to a family with a young cystic son in Ireland. Apparently the socialized medicine in that country won't pay for a Vest. Enjoyed the feeling it gave me donating it so much, I reached out to another transplanted Cystic and he gave me his Vest to send to the United Kingdom to help an 11 year old girl.

@ Steph. I know how much we've poured into finding a cure. With Julie at 100% someday, I know that we are absolutely going to turn up the heat on this disease. We all know it needs to be cured. We're going to do everything we can to make it happen.

You all enjoy the New Year and CURECF!!!

Roy
www.juliesdreamteam.com
 
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