Earlier this week I shared with you all my plans to start reflecting back on the story of our transplant and today it will start with listing for a double lung transplant. Making the decision to list and then actually taking the plunge is a huge part of our journey. We have been talking about it since our first fall married in 2010 and it took until the fall of 2017 to make the final decision. Here I will share what our journey was like, what decisions we had to make, and what comes with listing. It is important to keep in mind that everyone’s journey is going to be different, each transplant center is going to have their own approach, and our path is not one that guarantees success, but for now we have blessed that it has worked out for us. If you know someone who is considering listing or listed, hopefully this post will help you understand that none of this process is easy, simple, or a solve all – rather a very courageous decision to keep fighting for life.
What does it really mean to list for double lung transplant? As the patient you have completed all the tests and criteria to list (in our case it took about 6 months to complete these tests – and we had to complete them twice over since Danny was contemplating listing a few years earlier but held off until 2016). These tests look at all your other body systems – from a dental examine to a colonoscopy – to assure that your health is at optimum level to receive new organs and survive the transplant journey. Some of the tests are as easy as a vile of blood and others as complicated as a little tiny tube like thing being thread through your heart. Not to mention the interview process, financial review, observation of family dynamics, and care taker interrogation you and your loved ones undergo to be considered by a center. None of this easy, none of it is cheap, and all of it reminds you of the magnitude of what your actually preparing for. We are very lucky that most CF patients fly through this portion of the experience pretty easily. They are typically younger and healthier since their bodies are under constant monitoring. While we went through this phase it struck me how blessed we are to not being fearing this part and I have added to my prayer list those people who don’t even make it past this stage.
Once your tests are done you are given a score on the national organ donation list. This score is based on an algorithm designed to weigh all of those listing for a transplant against each other so folks are placed on the list based on need. This sounds logical, but again we know of families whose children passed since they were getting on the list when it used to be based on who had actually been waiting longer. This is another piece of the puzzle that just was for us – no worry, no fears of not assuring your spot fast enough – we knew we would be placed exactly where we should be. Thank you, God for calling for our transplant journey during a time when the technology has greatly improved. And there you have it – you have your paper work in order, you have your score, and when you are ready they hit the “go” button and you are made active on this list.
This is where it can be confusing. You are active on the list – but you are also placed in order or receiving lungs at your specific center. Blood type, body size, age, health – all of these details are taken into consideration and you are scored compared to who receives organs at your center. Each center has a range in which they have priority over the organs in that region and also locations where your center is second or third in line to claim organs. All of the centers have different criteria (for instance some centers will take lungs from drug overdoses and some won’t) that will affect how often they are likely to receive organs. What can be interesting about this is certain areas of the country will have trends when organ procuring – for instance Danny’s blood type is not necessarily the most common nationally, but we were very blessed that it was most common for Hopkins’ organ region. From what we know – Danny was likely in the middle of the national list, but #2 or #3 for Baltimore’s list. So when we went active it really did mean any day now.
In addition to the health specifics there are other decisions you have to make when listing. Do you want to double list? Some geographic areas provide you access to two centers, thus giving you the option of listing with both. To the naked eye this seems like a no brainer – twice the opportunity for lungs. But going with two means you are being tracked by two centers: double the care/appointments/$, and getting that call is harder to even imagine since you don’t even know where you would even be driving until you knew which one got the lungs! More importantly for your experience and comfort level, double listing also means two different approaches from the care team, from the doctors, and surgeons. For Danny, we planned to list with just Baltimore to start and see how it went. That call came so fast, we never had to consider another center. And just in case you assume the whole “we have lungs for you” call is scary – once you list you begin to learn the other decisions you will have to make during the call process, such as taking high risks lungs. High risk lungs could mean how the death occurred, if they don’t have a good health history for the person, if they had recently been in prison etc. In those cases you are not required to take the organs, but you have 30 minutes to make a decision once provided all the facts. I pray for all those people right now…. we were in shock over the call and it was completely perfect lungs, never needing any sort of decision, I don’t know what its like to have to make a choice.
If a patient and their family member finally gets to the listing stage you do take a deep breath. You have been approved physically, given the green flag mentally, and they have agreed your family is financially ready to take on the burden and emotionally equipped to survive this experience. In some ways I have compared it to receiving that college acceptance letter – you have made it! But the truth is it just the beginning and now your life actually has to change. They prepare you that you can’t easily leave the area in case you get the call (if you have a wedding or funeral or even trip you can maybe be put on pause on the list but this isn’t easy to do and you don’t want to be flagged as jumping on and off the list) and that while you wait your going to get pretty sick. They told Danny to prepare for 6 months of Netflix and couch time since he will begin to deteriorate, potentially rather quickly, and we will have to do our best to remain calm and strong for when that call comes. This can be a scary and emotional time. Here is where I like to remind folks who may know of someone who has listed – or is waiting – be gentle with the questions, assumptions that all the problems are solved, or asking how long till they get organs. It is likely this person has gone through a lot to just get to this point and now the waiting begins.
To learn more about our specific journey and deciding when to list – take a look at my posts from the summer and fall of 2016. You will see the trend of confusion, fear, anger, frustrations that we found on our roller coaster: most specifically this post. For Danny listing felt very much like giving up on these lungs and losing sight of the devil he knows – CF – for one he doesn’t – transplant. When you spend your whole life with one goal: keep those lungs healthy, it weighs on you that you have lost… even though 30 plus years is pretty damn good. It is harder than any of us can imagine and for Danny it took awhile to truly commit. During that time I wrestled with my own demons:does that mean he doesn’t want to do the surgery (we talked about Hospice and for any of you in our shoes, it helped me a lot to know other CF families did as well….. I have come to learn it just part of the process)? What if he misses his window and gets really sick and then can’t list? Should I be demanding that he list since it is good for him? Do we need to be making plans about a care team or what that time will look like? Certainly I was not the one transplanting, but my emotions ran high and this time of uncertainty is extremely challenging and scary.
Eventually the time came and Danny would list. Early November our team said this was it – now was the time – and Danny took a few weeks to get used to the idea, get our affairs in order (which we only sorta did and I will be doing a post on what we should have done and never did before that call 48 hours later), and it was Danny’s request for one more holiday without “the call” hanging over his head: Thanksgiving. Which – just for the record – I thought was ridiculous and he was just putting it off, it wasn’t like they were gonna call the next day…… how wrong I was…. and on Monday November 30 Danny listed.
Thank you so much for reading and remember to make it a great day!
PS – I was home today with some weird bug: high temperature, feeling so weak and foggy….so my writing may be extra special 🙂 – if you have questions leave them in the comments or send me an email .