On August 15 we had the privilege of participating in the CF Mini-Con for Transplant. It was a virtual event that allowed CF patients and their families and/or support team to learn more about the different stages of transplant through the eyes of those who have experienced it. The reason this event felt so unique (besides being completely online to protect from the exchange of bugs – which was crazy)was the method of teaching through storytelling and the opportunity for those who attended to participate. This was not a blueprint for what to expect, a map of how to succeed, or a rigid set of rules that are passed down from the “experts” to those hoping to have a successful experience. Rather this was about reminding people that everyone must find what works for them and there is no “right” or “wrong” way in this life.
While participating we met with other transplant families and those awaiting transplant. The conversations were wonderful and I learned a ton from my fellow caregiver peers and other CF patients/families. It was an important reminder of the value of community and connection – it is powerful. These conversations and lessons brought up a variety of different topics I plan to talk about on the blog. It can be funny how details fade into the background as you move fast and furious into your new healthy life – but at the time they felt like the weights around your neck that were the difference between survival and destruction. So I am hopeful by sharing our experience with these areas you will feel less alone and maybe even pick up a new perspective on how to approach your own situation. We by no means have all the answers – but we do have our experience (where you may even find a few what NOT to dos) and are happy to share!
- Working a 9-5 while being a transplant caregiver
- Dealing with someone who doesn’t have any interest, or potential desire, for a transplant
- Late-teen and early-20 decline and how to deal with it as a caregiver
- Being invited in as a “player” to the transplant team
- Asking questions of your care team
- Why a CF patient may feel like transplant means failure
- The caregiver’s stages (hero to tyrant)
- Dealings in transplant and in-laws
- CF tune-ups and marriage (should all marriages have them?)
- How transplant hospital stays are different than tune-ups
- How you distract yourself or get a break as a caregiver
- Boundaries and the sort of help that is helpful
If there are there topics you are curious about or would like for Danny or I or us both to address – please send them along or include them in comments below!
Thank you so much for reading and remember to make it a great day!