When I was about 12 years old, give or take, I won the limbo contest at our Worcester Wahoo swim team end-of-season party. At almost all of the Bar- and Bat- Mitzvahs I went to when I was thirteen I was a finalist for the limbo, with the exception of my own. Not cool, Mr. DJ, not cool. Yes, 15 years later and I am still bitter. To be fair, I always had the upper hand because I was short, and incredibly flexible. Not anymore (well, I’m still short!). These days, however, I’d have no chance at a limbo contest. My glory days are certainly behind me. But, it feels at times like I am in my own limbo contest, with Eamonn right beside me.
Eamonn has now been listed for a lung transplant for just under 16 months. His health is stable, he’s gaining weight, and he generally feels good. 16 months ago, we both would have told you that by now Eamonn would have a new set of lungs, and would be on the road to recovery; but with the timing of his new drug, Kalydeco, he has been able to hold off surgery. With all that said, though, Eamonn’s name remains on the transplant list because once on it, there is no coming off of it.
So what does all this mean for us? I want to make myself very clear by saying that I am in no way complaining that Eamonn has not yet had a transplant. A transplant is a last resort, and it is ideal to put it off as long as possible until absolutely needed. It’s a great thing that at each 4-month appointment with his transplant team, he has not gotten higher on the list. It’s a great thing that he is staying healthy.
However, being listed with no answers in sight means that whether we like it or not, we are constantly in the unknown–what Eamonn and I refer to as being in transplant limbo. We are stuck in the in-between place of Eamonn being healthy and feeling good, while knowing that a transplant could be a phone call away, never knowing where you stand on the list, but wanting to live life the way we want to live it.
For the most part, Eamonn and I have not allowed his name on the list to stop us from doing what we want to do—specifically in the case of traveling. In the beginning we were not traveling anywhere more than a 4-hour drive away (those on any transplant list have similar rules) but as time passes we have begun to steer away from this rule, obviously making sure to notify doctors when we do take trips. But traveling is only the beginning. Because there are so many unanswered questions, one of our major concerns is family planning. Though we are nowhere near ready to start having children, we have a lot to consider once we do begin those real conversations. And never knowing when Eamonn might need a transplant is somewhat daunting. If he has not had a transplant when we start wanting a family, do we take the risk of moving forward still not knowing? Do we even want to bring children into that kind of life, or have them watch their dad as he struggles to get healthy? Or do we make our own decisions and not allow CF to get in our way?
As Eamonn’s wife, since the day that he was listed or even earlier, I have been absolutely dreading his transplant day to come. Sometimes I imagine the moment he gets called and what it will be like as I wait for him during surgery, but quickly try to stop my mind from wandering. There is just no preparing for your husband to have to get a lung transplant. So now almost 16 months of being in this limbo, and I have to admit that as the time passes, that day seems more and more unreal and harder and harder to come to terms with. It’s begun to feel like a distant reality, one that I can start to ignore and put behind us. Then I remember, this is not necessarily such a distant reality—Eamonn is on a transplant list, his name is not coming off of it, and someday he will get that phone call.
Eamonn does not keep many lists, but he does have one. He has been keeping a list of the activities he wants to do post-transplant, ones that he cannot do now because they are too physical for someone on 24/7 oxygen. Surfing, salsa dance lessons, blowing a shofar, to name a few activities on the list, but every day it keeps on growing. As much as I do not want his transplant to happen until needed, being in this limbo means waiting for Eamonn to get to live his life to his absolute fullest potential. Being in limbo means holding off on doing things he loves to do. I’d be lying if I said that was not terribly frustrating to watch him as he waits on the sidelines. I want him to get to do everything he wants to do.
Every 4-month appointment with the transplant team is a reminder—that though his health is stable it remains out of our control. It’s a reminder that there is so much we do not know and will not get answers for. It’s a reminder that we are waiting. While I am not as physically flexible as I was at 13 years old, I am learning that this new limbo requires a flexible approach to make it through life’s uncertainties.