Thursday, April 11, 2013

Guest Blog: Friends for LIFE

As anyone currently following me or this blog on FB probably knows, April is National Donate Life Month. As a transplant recipient, this is obviously a cause very near and dear to my heart (and my lungs!), and I thought it only appropriate that this blog take a time out to celebrate the miracle that is organ sharing and altruistic donation. 

With that in mind, I'd like to take you back in time to June, 2011, when I wrote this post about my dear friend and fellow CFer/lung transplantee, Allison, and her need for a life-saving kidney transplant. The response, even at the time, was pretty overwhelming. One woman wrote in from Texas asking if she could be tested, another reader indicated that she would be willing to travel from California if needed. More still wrote in expressing prayers, love, support, and their own stories of survival and hope. And in classic Cystic Underground style, the community rallied around Ali in a way that left no doubt that she was loved and supported -- we even had the spouse of another CF/transplantee test to see if he could be a match for her, though they'd never even met. 

Since then, I've received countless emails, comments, and FB messages asking for the ending. So without further ado, and in the spirit of true friendship, community, and thankfulness, I give you this guest blog by one of the strongest survivors I am honored to know. Ms. Allison, take it away:

Living Proof

Two years ago this month, my blood pressure was out of control, I looked swollen and just not right. My lung transplant team had a feeling my kidneys were on their way out after 6+ years of medications to keep rejection at bay, and referred me to a nephrologist. One visit, some scary preliminary bloodwork and a kidney biopsy later, that word was thrown my way again: transplant. This time it seemed more daunting than my lung transplant, because dropping kidney functions were not helping my lung functions stay stable, and also because the option of a living donor meant I could not just sit back and wait on a very long list. It was up to me to find someone willing to just be tested as a match. The months following my initial diagnosis of end stage renal disease were stressful, frustrating and incredibly tense. My siblings were great matches but they both ran into their own health issues and could not proceed with the donation process. I had pretty much (inwardly) given up the prospect of a living kidney donor when a good friend of mine, who had been one of the first to send in her organ donor evaluation forms and had told me with no hesitation that she was “the one,” again stepped up and chose to continue with the process.

Let me assure you, it takes a special person who is not even related to you to go through what she did. Countless trips to doctors, getting bloods drawn, assuring her family and friends who thought she was kind of nuts for even considering donating an organ. All while working full time and raising 2 small children. I told Jessica more than once that she could stop the process at any point if she didn’t want to follow through. It was totally fine with me if she backed out. But she insisted from the get-go that she always felt that she was supposed to do this; she had faith that this was meant to be. We had many long talks about it, and most of the time SHE was helping ME keep the faith, when I should have been reassuring HER that everything was going to work out and be okay. I think it is our friendship, however weird and funny it is, that got us through. Our sick senses of humor were and have been a key in keeping our sanity through a grueling time.

Since our surgery, our lives have continued as before. I say this because the day to day keeps going after such a life changing surgery. She has her children to tend to, a home that she takes care of, her life that she lives. My life goes on as well, with a few more doctor visits than before. We meet up for our Breakfast Club adventures, drink coffee, catch up on our lives and those of horrible reality TV. We go shopping together and make each other laugh until we can’t breathe. Our friendship feels like it did before, but on a more profound level now. She is, literally, a part of me!

Words can never express how grateful I am to Jessica. How can you thank someone enough for giving you the gift of extended life? For giving me more years to spend here on earth with the people that I love? To allow me to see more sunrises and sunsets that I probably wouldn’t have seen if it were not for her? Words can’t explain it. I know that she knows I am forever indebted to her. If she ever needs anything I would be there for her in a second.

With April being Organ Donation Registration Awareness month, I want to encourage everyone to register. It does not mean you have to be a living donor like Jessica. But when the time comes that you may not need those organs anymore, you could save someone’s life- maybe a few people’s lives. 

Believe me, I am living proof. 

To read more about Allison and her amazing journey with CF, new lungs, and "Sheen the Kidney Bean", please visit her blog at New Organs, New Life


  1. I've never commented before but as an aunt to a CF kid who received a living lobar transplant, I just had to. Good luck to Allison and her donor! Thanks, Piper, for sharing this story. <3 Kara D.

  2. I would love to hear from Jessica. It takes a dam special person to do that! Death is one donors are an entirely different breed! <3

  3. I think Friends are the back bone of our life.... and it is a nice post....