Monday 7 July 2014

Seven Things You Learn on the Transplant Waiting List

Robyn has been on the waiting list for a lung transplant for nearly five months. She takes IV antibiotics to keep her as well as she can be, and sometimes has to be on oxygen for long periods of time. A single mum, Robyn is coping with the support of her wonderful daughters Sophie, 11, and Phoebe, 7. Here she shares seven things she has learned from life on the transplant list.

1) Make lasting memories
Last year my parents took us all to Disneyworld in Florida which was absolutely amazing. We wanted to ensure we had the holiday of a lifetime and a chance to build some everlasting memories in case we didn’t get that chance again.

2) You may want to keep the whole truth from the ones you love
The girls have always known that their mummy is not well but I keep the frightening statistic that one in three people with cystic fibrosis die on the lung transplant list hidden from them. It wouldn’t be fair and could damage what we have if they stopped acting normally around me.

3) Life will change
The one thing I miss the most is running around with the girls. We live in the country and up until I became this ill, I enjoyed a very outdoorsy lifestyle with our horses, dogs and long country walks.

4) It’s okay to ask for help
I really miss doing these activities with my girls and have had to hand over the reins to my long suffering parents who take them out all the time. They have been a brilliant support to me, especially since my husband and I are no longer together.

5) Improvise!
I do consider myself very luck, because my daughters are content when we curl up on the sofa and have movie nights instead. We do lots of indoor activities too, like baking, and they like to have their friends over for sleepovers.

6) Be prepared
I can’t travel further than two hours from the hospital, in case I get that life-changing phone call. My parents are on standby and when the time comes no matter what time of day it is my mum is ready to look after the kids and my dad is ready to drive me to the hospital.

7) Anything could happen
I have written the girls a letter each for when I go in to have my transplant, in case the operation goes wrong. I’ve also started to write letters for them to open further down the line. Things like special messages for all of their birthdays, their wedding day and even for when a boy might break their heart for the first time. I want to give them these letters so that when they read them they can feel close to me and know that I have planned ahead for them, but most importantly to let them feel my love when they will need it most.


  1. Thank you for sharing this Robyn. I wish you the best of luck for the future! Keep strong x

  2. Thanks, Robyn. Best of luck!

  3. I totally empathise. I am waiting as well for a heart. All the best

  4. Thank you for sharing thoughts.Everything will be good.Hope and believe...

  5. My daughter, Robyn, was on the transplant list 16 months before she received her new lungs. Praying for you, Robyn!