How #2 Ended Up #1

Bronchscope at 1 Month
December 2016
During my last retell of the transplant journey we had just received our transplant call. There was a lot to digest from that one little call and amazing how many things were set into motion, but there is a piece of the story that sorta gets overshadowed because of the outcome, we were call #2.  When Hopkins called they explained how these lungs are such a good match they wanted to be sure they went to somebody. So even though Danny isn’t the primary patient, can he come up too – “just in case”. Aren’t all organs that are selected for transplant good matches? And if they are gonna take lungs out aren’t they meant for someone? And what about the potential 6 month wait – how can Danny all of a sudden be #2? Yea, good questions.


As you proceed with reading this post, please keep in mind the information I am sharing is what happened during our transplant experience, with our specific CF center, and based on the technologies available to us at that time. Each of these variables can be different for each person, each center, each care time, each scenario and I believe the technologies are changing constantly. This is not the way it has to be done…… this is not the way it will always be done…. and this is not the way we tell you to do it (which is probably pretty good, cause Dan and I aren’t docs….) – this is just the way our story went.


So let’s start at the beginning: “these are good lungs”. When a scenario for an organ becomes available the first question is what medical centers are eligible to claim them. There are regions outlined by the United Network for Organ Sharing, that dictate the primary and secondary centers that have jurisdiction to claim the organs harvested in that area. Once contacted the center looks at their recipient list and determines at first glance if they have an eligible recipient (disease, matching blood type, need, body size). These are all the initial questions, for instance if the blood type does not match anyone on that list they will not proceed with procurement. If there is a potential for a match then a team is sent to look at the lungs. Some send their surgeon or some send a team assembled for this specific task – in our case it was our surgeon. In addition to reviewing the organ, the lungs are removed and some surgeons prefer to remove the organ using their personal style. That way they know the condition they are in for phase two of the surgery: implantation. Once out of the body the lungs are tested, the medical history of the person is reviewed, and a decision on viability is made. If these are good lungs they are used.


As a patient if you are provided the opportunity for “good” lungs and you receive a call, your number is up. These lungs are yours. As with most things in  life, I understand there are a few exceptions and reasons you could say no – but they must be extreme, dire circumstances – not like “oh, I feel good today – no thank you!” If you are seen as someone who would pass on a perfectly acceptable transplant scenario you do not appear committed to the process and will be reevaluated as a candidate for lungs at any time. But you also may be wondering why the word “good” is being utilized so much. Again aren’t all lungs that are going to be transplanted good?


Here is the nuance, sometimes the organs are considered “high risk”. This could mean the medical history of patient is unknown (they can’t reach family, friends, or medical files). Sometimes this is based on cause of death – for instance overdose as a cause of death used to be a reason organs weren’t used, but now they sometimes can use those organs (especially if the person is young and appears healthy in other ways). Finally there could be a detail about the person’s life – perhaps they have spent time in jail or had multiple partners that could expose them to infections that  remain undetected at the time of organ harvest. If one of these scenarios that make the lungs less than ideal exist, yet the medical team still feels they are viable for use, the recipient has the opportunity to make a choice about the organs.


This is a scenario we feared a lot. Dan worried about having to make the call himself. Yes, your medical team weighs in – and they all assured him they would provide as much of an expert opinion as possible, but still it is scary. Do you take the lungs? What happens if you are wrong and need another transplant right away? What if you don’t take them and instead you are left without a call and your failing lungs for months. And potentially the weirdest thing of all we thought aloud, you only have a 30 minute window to stake your claim. Those moments are tough and I pray for the people facing those calls, and count our blessings we had a call with no choice. 


Once the lungs are chosen for a recipient – the process just proceeds right? How can there be multiple people for one set of lungs? When there is a situation with lungs that check off all the boxes for good organs and a center claims them, they will want to be sure the organs are used. This seems obvious, don’t they only procure lungs if they know they can be of use? When transplant day arrives you can’t just meet the initial criteria – blood type, disease, body size, age, – you also have to be able to go through the surgery. There are a series of tests and check offs you must meet to actually accept the lungs. The details can be as minuscule as the proper body temperature (no fevers or sign of pending infection) to huge details like white blood cell count. These things aren’t known until you are being prepped for surgery and the chance to miss a level or be off by a number is very easy. In those scenarios additional candidates will be called as back-up.


We don’t know the specific percentages on how often a back up person is called and receives the organ. But as patients, we were under the impression that being in a program to accept organs, you are watched so closely, if you are matched chances are these are your lungs. And if they aren’t it has to do with the organ circumstance changing and not the patients levels. So on this particular day as we continued to feel nervous and overwhelmed – and since we had pretty much procrastinated (potentially) past the point of no return – we did not stop treating this like the real deal. But every once in awhile one of us would say – Danny is still just the back up.


The other question that came up pretty quick on November 30 – how can Danny be number 2, when he has only been on the list for 2 days and there was an expected wait? When you list you are ranked on a national list, but you are also (and really more importantly) ranked by your center compared to the patients at this location. You are ranked in general and then you become ranked by blood type. When Danny listed with Hopkins, he was slated “in the middle” with at least two people ahead of him in his blood type group. Suddenly the chances of getting a call before 6 months seemed to increase. The pool had become smaller….. and then on that particular day there was only one person in front of him. This could have been due to someone receiving lungs, someone getting too sick and having to be removed from the list, or someone having passed away waiting. We don’t know and we did not think about it.


So how did Danny as the #2 become the #1? Hopkins was offered the opportunity for these lungs>>>>our surgeon reviewed the lungs and deemed them perfect>>>>Several folks who would qualify to use the lungs were called>>>>everyone went through the testing and Danny was the person with the best scores for that day, while also being the sickest to receive them. But really? God had a plan and we were blessed by the events of this day that was also a heartbreakingly difficult day for others.


With this review of just one aspect of the transplant experience I ask that we all send up a few prayers for those on this journey. It can be long and short, difficult and easy, scary and hopeful – in both expected and completely unexpected times and ways. And none of this would be possible without the gift of life from a donor and their loved ones. I ask God to bless the patients, the families, and the medical teams that are all part of this experience with wisdom, peace, and strength.


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

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