This HealthDay article really struck a cord when I read it. It’s not only the kidney population that sometimes has issues with the process of when to refer or list, it’s other organs too. But it’s compelling food for thought for patients and professionals, as transplantation is a treatment, but not a cure. They are also costly, but overall may be less costly than other long-term interventions that don’t offer many of the benefits & the possible quality of life improvements that transplants do. As I was reading that article, certain paragraphs resonated with me, but as much as we try and contribute this to a professional issue of late referrals, I personally believe there’s more to it.
The HealthDay article tends to overlook the personal views of both a healthcare professional & the person’s willingness to even be evaluated or the patient putting it on the table themselves. What jogged my memory on this was a few different stories of a few ladies I know whose results were very different (I am careful not to mention names to protect privacy & give a general overall synopsis of the situation for context). Both sought care eventually at my transplant center. The one waited a long time before she put the conversation of evaluation on the table that center. The other was told by another center that they felt she was “not ready” to list. I knew both of these women personally. They both taught me a valuable lesson, even though one had a favorable outcome & the other unfortunately did not.
This is the missing part of the equation that can skew studies like this. It seemly just looks at referral rate, which granted is important, but only tells part of the story.
The evaluation testing is extensive. It’s usually a multi-day affair. In my case, the one friend I knew with a favorable outcome had most of the tests done at another center, prior to coming to mine. So her testing process was pretty much complete. It was basically relying on the center’s interpretations of those results, looking for risk factors or potential complications & then moving forward from there. She was deemed a candidate for immediate listing at my center contrary to what she had been told at her prior center.
The other sought a self-referral when she felt her quality of life had gotten to the point where she felt that transplant would be a step up. It turns out she did have an “official” evaluation years ago, went active briefly, but then decided to remain inactive for listing for a longer period of time. She kept up with the tests but then made the decision on her own to to later self-refer to my center. We often discussed research, & took the treatment in the early days before it was proven (off-label) since we both did not qualify for trials. In the end, the sad fact for both of us was, while the treatment helped, it wasn’t entirely enough to stop the progression or keep us from exploring transplant.
When she felt finally ready to have the discussion to self-refer, she went to have the updated tests & fell ill. They found a very stubborn bacteria that was too much of a risk factor to overcome (which she had for months but other doctors dismissed as another issue before the center figured it out). She passed very suddenly. But that hit me hard as she was very self-aware & informed. (She wasn’t reckless with her choices at any point either; not in denial). It still gives me a lot to think about.
However, scared as I was, that was motivation for when the evaluation discussion came, to move forward to get it out of the way. I did not want to ever be put in the position of being suddenly ill & then having the stress of that on top of needing to be evaluated & have my transplant team concerned if I could even withstand the evaluation testing. Or have an illness disqualify me. I put the tests off a little, only because I had made a lot of summer travel plans before that appointment that I felt I didn’t want to disrupt with it.
Just a few weeks ago, I had a blip that changed everything & made me glad I hadn’t put it off anymore. I went from needing the oxygen occasionally to pretty much needing it now 24/7. From being able to work, to having to take a medical leave. From being able to drive long distances to being confined to short drives & being told in no under certain terms that I needed to have someone accompany me to visits from this point forward. To being told well-meaningly but firmly that I had “end-stage lung disease”. Luckily my best friend has stepped up to the plate to help me out with taking me to appointments if I need. There’s never a hem or haw about helping me out. In fact, I was offered this plenty of times before, even when I stubbornly (& sometimes stupidly) refused.
Now, next week I have 4 days of testing. Unpleasant arterial blood gas draws (blood work), some procedures like a heart catheterization, & many other tests I’ve had done before for doctor visits or research studies. So the tests don’t scare me or surprise me since I’ve had the majority of them, but I imagine someone who hadn’t would be completely overwhelmed & potentially “googling” like mad to see what’s involved.
What does concern me is all the planning & coordination I have to map out, & also the fact I have to wait until after Labor Day to see what the transplant board has to say about my results. I do not at this point know if they recommend I will go active immediately after, what my lung allocation score (LAS) might even be (ballpark) or if they will tell me I am “too healthy” to list & then continue to monitor me every 6 months here on out until they give me some kind of timeframe when they anticipate me having to actively be listed. Nor do I know if I will be able to return to work or if I will have to start the process of filing Social Security Disability. I know one thing, I’ll have to start fundraising regardless, but that’s about all I know, that’s a subject for another post that’s already been done (see ““Why I Opted NOT To Crowdfund”)
While the lung allocation score (LAS) is a good guide, it’s not the end all be all. I know many ladies who did have a qualifying LAS tell their transplant center they weren’t ready yet. Some waited a year. But at least that had that “luxury” because they went through the testing early & found out their suitability; then made the choice off of that versus waiting to long or being in an imminent bind. This was their right to do, because this is major & life-changing surgery & everyone’s quality of life “line in the sand” (what they can ultimately tolerate) is different. At the heart it’s also a personal decision that you have to be emotionally & physically ready for.
While I understand people’s hesitancy & fear of complications or a poor outcome (I’ve been watching a lot of these stories unfold in my communities for at least 12 years), it’s a delicate balance because if someone is too afraid to even start the conversation early & the decline escalates very quickly, it’s very easy to miss a window & as a result – not have a choice, period. Then one must live with those consequences as their health & quality of life continue to spiral downward.
Many women, even those with complications during, before or after transplant (even some in rejection) have told me they’ve never regretted their decision to move forward. That even with problems & complications in the mix, the extra time afforded to them (even if it’s only slightly increased or been a gain of only temporary health) has been worth it.
My take on this article is the low referral rate could be related as well to some health care professionals reluctance & fear of suggesting a referral to patients for the fear of overwhelming them. I also feel that some may also believe that they don’t consider it a treatment option, just a last ditch effort to keep someone alive. (While it’s true it’s not a cure, it is a treatment, about the only treatment left in end-stage disease.)
It can be a lot to take in for someone if they just started using supplemental oxygen (my case). Or in the case of kidney transplant potential candidates if they just started dialysis a few months ago or perhaps a year or so ago to have the “T” word come into the vocabulary right after trying to adjust to those blows. Then come all these sometimes painful, invasive & time-consuming tests on its heels along with all these “crazy” statistics about “survivorship”, & “outcomes” that can make the average person without a lot of medical knowledge head spin.
Then there are “professionals” who think they know all there is to know. But then go about having the conversation at anything but the “right” time or” right” place. Believe me, there is such a thing, even transplant doctors & professionals who do make referrals will tell you that. There’s a decent way to break this news to a person who needs to hear it.
I won’t share the full detail here, but I had a not so pleasant discussion while I just woke up from surgery on my lungs during my first meal out of ICU & the conversation assumed I was in denial about my situation. That “professional” who took it upon themselves was later made to come back & apologize. Had I sought referral at that time, I would have been way to early for referral & possibly unduly put off by the outcomes data (which has had a remarked favorable increase since my initial talk in 2010/2011).
When the time did come, the opposite was true, it was done with a kind & compassionate yet gentle discussion as to why that time had come. Then, when I did have the first talk I was warned it was going to be shocking & grim, but the dialogue needed to be had. That professional wanted to answer my questions & build a trusting relationship with me to help along the way. I was a full participant & expected to participate. I was expected to ask questions about what wasn’t clear and to voice concerns.
It’s true too, that those who are first starting dialysis (or oxygen) may feel still well enough that they don’t really feel “sick enough” to warrant the discussion & wonder, “What is the big rush? Why now? (especially if they’ve been living with whatever condition for several years & learned to adapt)”.
I see that side & understand that concern too. If each transplant center has different measures & weighting criteria of suitability & what constitutes “severe” or “end-stage” disease, how do you think their patients feel? They don’t even know half those measures. They just see this as a very costly & concerning thing with a lot of statistics & talk that is often difficult to hear (for good reason) but that takes time to digest. Add that to a fact of waiting on a list for someone to die; or going through a good amount of testing to find out if someone in your family is match to the equation. It can get overwhelming fast.
Unless one is trained in self-advocacy (to read between the lines & realize they give you all the bad data out front so you know what you’re walking into) or know someone who has gone through the process before, all someone may know of transplant is what they see on TV (which may not even be accurate) & can also cause misconceptions or fears that might scare them off the dialogue they need to be having. Or lead them to not schedule or put-off that evaluation they should be undertaking.
More also needs to be done in the way of educating dialysis centers & other facilities that deal with potential candidates to consistently make those referrals when warranted & be willing to talk about transplant with their patients, even if it’s just a general introduction before a referral takes place (to give them something to consider). Perhaps also there should be more education for people who treat people with kidney disorders as a whole that transplant can be an option when warranted with significant quality of life improvements.
Then there’s the other side, what about the voice of the active & empowered patient who is aware of the risk and benefits? They face & swallow their fear in the same breath to start the process. Then they are told they aren’t ready to list? That they aren’t “sick” enough or their past interventions disqualify them without a decent answer as to why (in specifics)? Keep in mind, they’re told this in the midst of them seeing their quality of life dwindling day-by-day.
I’m fortunately not in that position but I know women who have been. I can’t imagine how frustrating that must be. Not everyone can afford to relocate or travel to a second center for an opinion & for those who do it may be worth it, but it’s a whole other ball of stress & coordination to factor in. I know there’s no one-size-fits all solution to this issue. One potentially solvable solution is getting a service like AngelFlight to defray the cost & coordination of traveling to another center. The other is staying at a house like Gift of Life Family House where they exist. But not everyone knows about these resources (see related blog post “Outgrowing Resources” for more info on this subject). Not all centers have transplant houses to stay at either which while the travel down & back may be solvable, the accommodations while evaluating and potentially waiting are not yet solved.
This is a larger issue than this blog post, but getting a second opinion for transplant is not as simple as getting a second opinion on other diagnoses or procedures. How do we help these empowered patients who know and are ready but may not qualify at one center but could at another?
While it is a big decision, & I didn’t want to be evaluated when I first heard the news (I figured I had at least 6 more months before they suggested it), I scheduled it anyway. I did in time come around to get it scheduled sooner rather than later & in the end run it’s a good thing I did. But I also knew I didn’t want to be too scared to go through with it, because at my level I can’t stand to lose much more lung function & I could be seriously weakened by a bout of pneumonia or other infection that could change my status very quickly. Professionally, I’ve done enough homework to be able to digest all the statistics. I even told them I was relieved that the intro talk (after it took place) was had before I was in a position to actually need the evaluation. So I could swallow that information without feeling any decision was imminent or immediate. I could process it with a clear head as it was emotional, but much less so than if I was feeling quite ill. Instead of having to have everything (talk, evaluation, listing) in only one or two visits.
To a degree, since the treatment that did help me for a while is an immunosuppressant (after I had time to absorb the shock of the news that this phase had come for me); it didn’t seem as big of a leap for me to come around & to think positively about this process regardless of how it turns out & what the tests say.
I pretty much live life now fairly close to some of my transplanted friends, with the exception that they may take a different cocktail of drugs than I do. As I fight some days to even be able to walk a mile (for someone who used to 12 when she had half or better of her lung function left) it’s frustrating for me to have to fight to keep active, even with the assistance of oxygen. Yet, I still make the attempt.
In closing, I have a lot of fears, one of them is I was am a bundle of nerves flying in airplanes. I can do it but am so jittery & on edge when I do. When a few of my friends offered this summer to take me up in their plane, I was extra nervous since it was so tiny, but I said to myself, “This may be my one chance to ever do this, and even if I it scares the hell out of me, I’m going to do it. I know once I’m up there it will be incredible.” Truer words were never spoken. I had a very memorable & enjoyable experience I would have missed out otherwise if I had given into that fear. Of course, transplant isn’t enjoyable, but the point is, sometimes the things we fear the most, are the things we most need to face & need to do (sometimes before we are “ready”) or we risk losing out completely when it really matters.