CF Mini-Con Transplant: Knowledge is Power

 

The Season of Living in Baltimore that Go Round
June 2019

In our life transplant was the top of the mountain. Once we got there everything after would be like getting on the sled and just enjoying the ride down! We could stop fearing and start living – with our steep mountain in the distance BEHIND us. Last year when I participated in CF Mini-Con Transolant that was my message, that was our story: Hope and the miracles that await in the other side.

This year when Lisa, the chair of the event, asked if I would co-chair I immediately put up a guard. In fact Danny has just been hospitalized and I was pretty sure at this pint we had lost our poster status as transplant A+ students. I shared with Lisa what had been going on – the details we were not sharing publicly- and confessed that I didn’t think I was the right person for the job anymore. That is when Lisa reminded me this event isn’t about the rosy stories of perfection…. in fact this event is about sharing ALL stories, being honest and connecting. She made me feel so good that we had always portrayed ourselves with fighters’ spirits, even when we were losing. Lisa was sure our story was powerful, but more importantly something others could relate to.

I asked for a few more days to think about it. During the next few days I moved to Baltimore to live out of a hotel near Danny and actually was going through another set of fertility issues that required I transfer care to a Baltimore center to be close to Danny being locked up in Hopkins. I remember how one night I wrapped up work and headed over to the hospital with arms full of bags carrying our dinner and my new meds I wanted to review with my expert (CF patients are basically docs with all they have seen) and just collapsed into the chair next to his bed.

Danny made it out in the knick of time for my procedure planning meeting
June 2019

I started to laugh and shared how I was asked to tell our story at the Mini-Con and chair this year. “Look at us I said- we are a mess….. what inspiration do we have to share???” And Danny, the more reserved and private one of the two of us, looked at me and said I think this is why you have to. We don’t give up…. that’s our story, Jac. He went on to remind me that it was my choice, but he felt that I could share because we were in the trenches- not choosing to be honest only when we had won.

And with that I agreed to chair. Since that point we have spent the last few months preparing an event that really echoed this message. No matter where you find yourself on the transplant journey: just curious, being told to consider it, not pursuing a transplant, or a caregiver, family or friend- there are sessions for you and a place to share. Yes, we will have some great experts presenting, but we also are going to be hearing experiences of all types from those who have been through it. This is a chance to maybe learn something new, hear about transplant in a way you never have, or my personal favorite – those who are happy to share about their mistakes! I will always be the first to stand and say we did these things allllllll wrong, but here we are to tell about it. We believe knowledge and stories are powerful – so please come and share!

To register please go here: https://cff.swoogo.com/minicontx19

And if your interested in hearing from another CF patient on why to attend check out this post: https://www.cfroundtable.com/post/why-you-should-join-the-cf-transplant-minicon

Looking forward to seeing you there and to those who encouraged us to share, even in the hard, thank you!

Thank you so much for reading and remember to make it a great day!

Jackie


2 thoughts on “CF Mini-Con Transplant: Knowledge is Power

  1. I loved “meeting” you at last year’s minicon prior to my transplant and I look forward to hearing your story again this year now that I’ve had a transplant. You are so honest and open and you give wonderful advice. Please never stop sharing!

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    1. Mary, CONGRATULATIONS on your transplant!! That is wonderful and I am so glad you will be joining us again with a whole new set of experience to share. Your words mean so much more than I can express- thank you. And to know my words were honest and helpful, actually means answered prayers- I really seek to be both of those things. This message men’s the world- thank you! See you tomorrow!!

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