When my transplant coordinator called me six weeks ago to tell me I was officially listed it was raining pretty badly. It was that New York monsoon style rain where the red buildings turn to mush and leak into the streets so nothing is quite identifiable anymore. There was something beautiful in it. I wondered how I could embrace this moment and give something to it that made me feel constructive and somehow empowered? I decided to start small. The first and lightest option was presented immediately to me. It was “The Bag” as my mother has since written on a piece of cardboard hanging off a string looped onto the maroon Herschel backpack in my wardrobe. People waiting for a transplant need to have what is called a “Go Bag”. It’s a backpack filled with everything ready to grab when The Call comes and it’s filled with a change of clothes and all you might need when you wake up after transplant.
I made a rough list of what I thought I needed and then set about googling the Go Bag and what others had put inside. I learned that some people said this bag made things feel familiar and secure when they were able to access it after transplant and others said they didn’t even open it for the weeks or months of hospital recovery they had. One of the reasons for this could be that the transplant centre had most things that are needed within their safe infection controlled environment.
Go Bag’s are also important because of something called “A dry-run”. For example I might get The Call and travel to the hospital and get prepped. The team will be running more tests on me and more tests on the lungs to make sure they are in perfect condition. Even at this late stage, the transplant team make the decision when they have run all the tests and actually see the lungs if it is a go. This is why having a transplant team you trust is so important. It’s hard to determine how long you will have to wait in this instance and you may end up going home eventually without transplant to wait again. That is another important reason to have a well thought out Go Bag!
Here are my current Go Bag items and why they are included
- A list of medications and health insurance card. This is basically the essential item presented upon entrance to the hospital so that the doctors are up to date with all medications and the insurance is checked so that surgery can happen.
2. PJ’s. The operation requires a medical gown and just after the transplant I will be ventilated and there will be wires and tubes and multiple chest drains. I’m not sure until it happens when pyjamas will be allowed so I am going with a button down top and shorts to be practical. I know they will try and extubate me as soon as possible – usually within 24 hours – and they’ll remove some of the six chest drains. I will then get walking with a team effort and a few chest drains still in. Shorts and a button down top seem like the best options for this – just in case I am allowed wear my own clothes that early! (My Mom brought me some over from Pennys back home in Ireland!)
3. Slippers. These are essential to get walking as soon as possible post transplant. The slippers in my bag have a pretty funny origin. Mom presented me with a freshly wrapped pair she kept from the beautiful Fitzpatrick Manhattan Hotel where we were lucky enough to spend last Christmas as a family. Taking my first steps after transplant in the comfiest hotel slippers is OK with me! They are professionally wrapped so they are super clean and safe.
4. A small dry erase board so that when I wake up I can write words and point at them emphatically to boss people around! Ahem. Just kidding. Once the restraints from surgery are removed and while I am intubated I am determined to have my voice even if I don’t actually have it. Hopefully, I won’t be too grouchy.. I hope for floods of love and joy and marvel. I know I will be strengthened by my gratitude for my donor and hold their family’s loss in my heart as I fight hard for this new gift of life.
5. Toothbrush and toothpaste and toiletries. Nothing feels better after any kind of medical procedure or surgery than a good tooth scrub. I’m not sure how long it will be until I can do this – or rather until someone will do it for me – but it will be good to have. (I am guessing they will have basic lip balm in the ICU and those rollers to keep the mouth lubricated)
6. A wide toothed comb. Hopefully, I won’t have too much bed hair tangled up.I have been thinking about chopping my hair altogether as it gets harder to wash the higher my oxygen needs get or depending how the day is. (I once had bed hair so bad from an admission where I was recovering from lung collapse and no amount of recommended oils would work. The only option was the hairdresser at home who spent hours brushing out the knot for me. She was the kindest most tender detangler I have ever met! It would have been easy to say – in her professional opinion – off with her hair! But it all worked out. Thanks Sharon!)
5. A copy of the poems and the music that inspires me to feel peaceful but also work harder than I have ever worked to get back on track. I know I will need these to help me ninja my way through! #NinjaMoves
6. A protective mask for when I am able to walk out those hospital doors.
7. My Harper. A Small, black furred American short hair almost three years of age. Excellent for snuggling and formidable radiator. Guardcat also. OK. Ok.. She might be difficult…
If you have had a transplant and a Go Bag or if you have helped someone you love pack theirs please comment below or mail on the contact page what you packed and how it helped you. I would love to know.