It was late-October when we began to realize that listing for transplant was where Danny was headed and November by the time the Docs said – let’s roll! Initially Danny agreed to list the Monday or Tuesday of Thanksgiving week…. but as that week approached he was not feeling quite ready. So in true Bessette fashion of procrastination, Dan asked to list the Monday after Thanksgiving. This would give him a chance to have one last holiday without the fear of the call hanging over his head (his exact words), and give us a chance to get our affairs really in order. In theory this plan was smart – we would have a little extra time with me at home to craft a to do list, complete our research, and feel like we were in the best place possible to become active on the list. In practicality, this time had a ticking time bomb of life changing proportion and we opted to just spend the time relaxing, versus worrying.
Somewhere in all of that planning/procrasitantion there was an opportunity for a balance of getting ready AND having some fun. We however did not seem to find it quite as well as we had planned, so today I am sharing with you 10 things to really think about if you are preparing to list for a transplant.
1 – Paying those bills
Danny and I have the oddest 1950s marriage with a twist… Danny managed our money and I was the little wife that didn’t know how it was spent, but heres the twist: I am the breadwinner. An important thing that has resulted from transplant for us is the responsibility of money management is now shared. But on the day we got the call, as I drove Danny had to try and recall all of our bills, the websites to access our accounts, and the logins on a piece of scrap paper. We laugh now about how peaceful and even meaningful that drive could have been, but it certainly was interrupted with the realization that life may be turning on its head, but our bills still have to get paid. I would recommend getting these things in order WELL in advance. And for all you married folks who don’t know how the bills get paid… I would go ahead and learn. It is just one of those things your gonna want to know!
2 – Care Team Details
Post transplant every patient requires a great deal of assistance. This need could last a few weeks to months, maybe even longer. The timeframe is hard to know since it varies for every patient, but the demand for help is the same for them all. I cannot stress enough the importance of being 100% honest for this conversation. The patient needs to be very honest with themselves about who they want helping and if that amount of help is really enough. Are there people who could be the “front line” for all those really intimate moments of need versus someone who could be the friend that keeps you company? Who are you willing to let help? How many people do you have to help and how does that support the needs that exist for both the patient and their inner circle. Taking into account jobs, schedules, the need for breaks or sleep – really think about the amount of help that could be needed.
Once determined who could hold these roles, be sure to ask the person you are thinking of if they are comfortable with the task at hand. It should be very clear this person can choose not to help in a certain capacity and their honesty is very important. In our little world Danny choose myself and his parents as the main source of care. When it came time for the help, I looked at the situation as having three people to divide the work, but as it turns out their comfort level was to do things as a couple. I had been planning on three folks in rotation, when we really only had two. Being clear at the start about the type of help needed and in return being forthcoming with what a caregiver is capable of doing will assure you have enough coverage and protect the many relationships involved.
3- Pet Plan
We have a dog that needed to be cared for while Danny was getting new lungs. We talked about a variety of options…. we considered investing in a professional…. we made a to do list of how to address this need that we would look at closer in December. We did not make it to December and had to call our friends that we had joked with during brunch a week before that if we got the call super early we would have to beg them to help (they are the only ones we felt could manage our “special” dog)…… guess what? We had to beg them to help. Maybe its a pet, maybe its a kiddo, maybe it is business, maybe it is your laundry! No matter how big or small, there are things in your life that require you attention and management on a regular basis. If you should have an emergency arise or need support quickly to maintain your life – do you have people you can call for these tasks? Think through your life to determine what areas will need help to keep going while you are distracted – and make the plans NOW.
4 – Fundraising
A double lung transplant is not super cost effective. Sadly, just like many serious medical conditions, it can cause serious strain and demands on your finances. Depending on your hospital/transplant team, there are certain organizations you will be advised to work with on fundraising. These people are experts in their field and I would encourage you to look into this resource. We were blessed enough to work with the Children’s Organ Transplant Association (COTA) and it has changed our lives.
5 – Visitors
Danny had made it pretty clear that he was not interested in any visitors while he was in the ICU and limited visitors while he healed. This was something we talked about together and with our families. But when the surgery finally came, folks offered up Danny’s room number, and I had to play hospital room security. People want to be there for you and they mean well, but ultimately folks not respecting this and giving out the details needed to find us in the hospital left me in a tough spot…. during an unbelievably challenging time. Avoid visitor confusion, be sensitive to the caretaker, and stick to the agreed upon plan…. this will save a lot of heartache in the future. There is not one transplant scenario that I know of where this was not a problem…. consider to carefully. And if you do consider it carefully and it still does not go well, lean on your nurses- they can help take the heat.
6 – But what about the waiting room?
Double lung transplant takes roughly around 8 hours to complete. The decision for visitors being limited is important for the patient, but the caregiver is also in the middle of their own personal hell. This means you need support and should not be afraid to have people there with you. As long as you make it clear their role won’t include getting involved with the patient – be sure to invite those individuals you need to be around.
7 – Whats your vision
As a couple prepares for such a huge experience in their life, you can’t help but envision what it will be like. The truth, in the end it may not be anything close to how you picture, but that doesn’t mean you can’t honor the parts of your vision that you can control. When Danny and I both considered the official “good-bye” as he would roll away to surgery we thought it would be alone. When Danny had the tubes removed and was breathing on his own, he pictured me there. When Danny finally came home, I dreamt of life going back to just us two. These moments ended up not being shared just between the two of us and that was very difficult. In some ways you have to say “that’s life” and recall that it rarely goes the way you want. But weeks later as we expressed the frustration for none of those moments going they way we had hoped we realized that we both were truly frustrated by the fact that we never actually discussed how it might shake down. What if we had taken the time to tell each other what vision we did see for those moments? Perhaps the outcome would still be the same, but the recognition of each other’s needs and desires for how that experience would go, may have helped the transition through these stages be a little smoother.
8 – Get Your Hospital Goodies
Transplant time means a lot of hospital living and there are a few really helpful tools during that season of life.
~ Portable charger to keep your phone charged and not require an outlet
~Prepare a bag/box with hearty snacks (peanut butter crackers, nuts, water), since you won’t be living life during normal hours, this assures you always have a source of food
~Find the link to your favorite sweats and hospital chic attire and save it. There is a chance you will have to send folks to get more supplies for you, and this makes it easier to show them exactly what you need.
~Get a good book. Reading is a huge part of hospital life because it is silent, can be done anywhere, and is the one true thing I have ever found to help my brain escape those walls and travel on great adventures
9 – Home Preparation
Coming home from surgery you will need a long lists of supplies. Collecting 20% off coupons from Bed, Bath and Beyond and starting a list based on what your transplant team recommends you purchase will be really helpful. We certainly did all of our preparation in 24 hours, but how nice would it have been to prepare your needs earlier. I am thinking I will do a post on what we bought in case it can help you.
10 – Go Automated
We live in period of time where services to help you get through life a little smoother are a very popular. Why not look into what is out there to help? Get your groceries brought to your car or home, have a meal service delivered directly to your welcome mat, or transition your errand running to online shopping on a Saturday AM. Figuring out what services you actually benefit from using now, will give you options when your in transplant mode and can’t easily think through those details.
We were blessed with such a quick call for transplant, less than 48 hours later, but lost time to be as prepared as we had hoped. Everyone’s transplant experience is going to be completely different, but hopefully a few of these things will help those who are facing this moment, think through details before you are standing face to face with the need for an answer.
Thank you so much for reading and remember to make it a great day!