When I first started talking with my doctor at Penn in late 2010/early 2011 & we had the initial facts & figures talk, it was estimated that the national averages for double lung transplants were around 50-60 percent from what I remember. In addition to that percentage seeming to correlate with data I could find online during that time from reputable sources. I am going to be honest, some of the initial information was hard pill to swallow & the statistics hard to hear.
When someone receives an evaluation, it is to “time” them. Give them an average of the mileage left on their current organs that are failing. They tend to list sooner rather than later, due to wait times. Typically though, it often means that someone has 3 years or less with their current organs if they are considered “active” immediately. Some do die waiting. Some sadly do not qualify even if they would like one.
Lungs historically have a lower survival rate than kidney or other organ transplants for several factors but one of the major ones is of course proximity to the heart & how closely the respiratory system works in conjunction with the circulatory system. Additionally, unlike the kidneys which are encased, the lungs only have a thin membrane surrounding them making them more vulnerable to problems. They also do not remain as viable outside the body as other organs. However, with preservation advances this time factor is increasing, & as one can see so are successful outcomes.
I did receive my packet of information today from UPENN with my schedule for evaluation testing, the follow-up appointment to discuss results, some consent forms, & additional information. I was however encouraged to see current information on survival rates included in my packet. Although I really prefer the bar graph form they present (on the link). I was also encouraged to see that UPENN outcomes in all areas are higher than the national averages.
Despite this though, I believe that one can’t have an honest conversation about transplant without discussing the risks thoroughly. This includes the possibility of death, unfortunately. Because even if I make it though the surgery, there is always the possibility of rejection that looms in the background. I feel for me the gamble is worth it, but I cannot afford to be naive to the risks or the trade-offs I’ll be making even with a successful outcome.
This may seem a bit of a morbid topic, but it’s an inevitable part of the discussion & the planning in this process for anyone facing this, regardless of support, regardless of illness or diagnosis.
While I am taking time on medical leave from my job, I was also working to get my advanced directives & estate planning in order. Luckily my friend who is a lawyer also received a kidney transplant, so I was able to feel comfortable having some discussions that I’m sure might have been harder to have without someone who could understand the situation from both sides of the spectrum. But it’s important for me to take initiative and do this in the event there is a complication so my supports aren’t wondering what my wishes are, nor are their hands tied if they need to take action. However, it is an emotional process to do this, especially when I’m younger than 40. Most people don’t even think about this until they are married & starting a family if then or they put it off until something happens to someone they know unexpectedly & then gets them thinking. It’s something everyone should do, but unfortunately many are not mentally prepared to do.
Several years ago (although it feels more recent at points) I had a few serious health blips that could have ended my life. In fact, one summer when I went home to see my family I even met to do some pre-planning (which I am trying to update as well). At the time, this was also on my mind because I had lost a few close friends who had passed young as well, & attended a few services that left a bad taste in my mouth because I knew it was not what they would have wanted. I never divulged that I had done this to anyone really because for so many people, death & grief are so personal & unique, I am never sure how to broach the subject, even sometimes with those I am close with for fear of making them uncomfortable. However, often it’s a conversation that needs to be had. I simply leave the door open & discuss it with whomever chooses to on a one-to-one basis.
Even though the life expectancy for LAM has increased, there are still those of us who were in moderate disease when we started our treatment & have slipped into severe territory or even that dreaded word “end-stage” even with treatment. It’s a tough pill to swallow, but I take comfort in the fact that I had 5-6 years where I felt great (even with a few limitations) & could live life outside of my illnesses without having the diseases have the upper hand. Others weren’t so lucky, Others may be spared this fate since they can take the treatment which has been proven earlier in their disease & it may stave off progression.
Also with TSC, there is risk of serious complications that can also lead to loss of life from either severe seizures, LAM, or kidney failure to name a few. In fact, I was told early since I had TSC it was thought that my progression would not be as pronounced. That hasn’t been the case for me. I had problems very soon after diagnosis & at first I was very angry I was even told that. While it was meant to be a comfort, I often felt like I was even more rare & that I shouldn’t be having these problems, even though it was not within any of my control of course. The subject of death even in both of these circles is often the elephant in the room that (forgive the pun) is dying to be discussed, but is seldom discussed. I imagine some of it is out of fear, there’s several parents of young children that might not want to hear that TSC is progressive or potentially what a worst case scenario could be for their child. It is moreso discussed in the LAM community because unfortunately before the treatment we were losing many in our circle. But there’s still an under current of being afraid to talk about the more severe illness for fear of scaring the newly diagnosed. But I found in my situation, that sharing in the long run tended to be more helpful so I had very few blind spots. It is also less lonely & isolating to be able to share the real experience rather than feeling one has to hold it all in to avoid “stealing hope” from someone. People need to be able to be honest with their experiences though, both successes & in hard times, that’s ultimately what those support networks are for – they are for everyone, regardless of their walk.
I knew when I started it in 2009, that my treatment was not a cure & it might not be enough. But it bought me time. That time has advances now that weren’t possible even 5 years ago & that might make the difference between a successful outcome & a not-so-successful one. So I am encouraged, but I also have to go in with my eyes wide open & that means acknowledging the other side of the coin.
But evidently, it’s not only individuals facing it that struggle, it’s the medical profession as well.
I came across this interesting Medpage Today article tweeted by the Chest journal a few days ago. While focused on treating terminal elderly patients there are lessons to be gleaned from this. While this article focuses on terminal cancer, there are also lessons to be gleaned from how health care professionals view such discussions. It’s not just the people in these shoes that struggle, it’s also the people taking care of them.
It’s not an easy discussion, but for the person in those shoes, at least speaking on a personal level I feel honesty is more important than false hope in making educated decisions & next steps, even if it’s less than pleasant news. I can see how others might see things differently. While it’s tough for me, I often wonder how transplant doctors & surgeons do what they do, day in & day out. It gives me more of a respect & appreciation for them because the majority do seem to be quite compassionate, honest & caring. But their debating when to list, or not to list; if someone is a candidate or not I’m sure is challenging.
I think we have something to learn from Australia. The Groundswell Project, annually sets aside August 8 (yesterday) as Dying to Know Day, in which they encourage people to have end-of-life & advance directive discussions with their families & friends. They find creative ways to increase people’s death literacy. Perhaps, in this country if we had such a day to at least get the conversation started in people’s minds there would be less stigma & apprehension surrounding it? Maybe not, but it might be worth trying.
Because ultimately, these decisions are best made prior to actually having need for them.
(Aside: This is amusing but well-done @ZDoggMD video drives home the point of advanced directives in a wonderfully amusing way. His Twitter handle description is appropriate: physician, off-white rapper, purveyor of fine medical satire. SLIGHTLY funnier than placebo. Since the video does knock out the importance of making end-of-life wishes known in a way that everyone can relate to I felt it worth updating this post recently to include it).
To me, facing the fact that I may die doesn’t mean I’ve given up or don’t have a will to live. It simply means that I have acknowledged not everything, (despite all my care & attention & best efforts) may be within my control. I also hope that in laying my wishes out in advance in a clear manner it will save family & friends some heartache in an already difficult situation.