I was not prepared for the emotion that yesterday (9/8) brought though I had tried to prepare for that day in my mind for a while once I knew it was coming. Such a mix of feelings. Relief, disbelief, gratitude, & a degree of sadness. I had prepared for this day for a long time, including the possibility I might not qualify for a transplant because of kidney issues or some other circumstance that might have popped up in testing. Luckily, this is not the case.
Part of me was mentally steeling myself for the possibility I was still “too healthy” (at least in the center’s eyes) and then to have to watch & wait another 6 months & then repeat all or most of the testing.
I was secretly cringing over that possibility as I’ve started to see my oxygen use continue to go up, & my quality of life have blips, even with slowing down.
What I was told was that I had declined from April; that I qualified and was a good candidate for listing. The plan is to list in 2 months. In the interim, there’s a few tests & loose ends I need to tie up. I agree with this, although to me right now it’s bittersweet news because while I don’t doubt the miracle of transplant, the reality is without it, I don’t have much time (though I do have time (years), it could be measured on a few fingers though; maybe a hand, basing it on statistics & averages).
I’ve been here before, & come out of it with other dicey medical situations in the past so I am not overconfident but not terrified either. It’s still hard initially to process when the reality really sinks in that this moment has come. What you knew as possibility off on the horizon somewhere is now reality – here across from you – now.
I was having a hard time because I had to admit things to my doctor that I had a surge of emotion admitting to but needed to be honest about because of pride & stubbornness coming at too high of a cost at this level. I’ve known this doctor awhile now, he’s personable but pulls no punches. I didn’t feel like I wanted to or needed to either.
I felt I could be comfortable in being honest when he asked my opinion & reviewed the results with me.
Especially because I noticed more changes since the evaluation. I wanted that reassurance from him that this wasn’t anxiety or something else at play. Though I was fairly certain it wasn’t.
I could always from very early on in my diagnosis pinpoint progression with LAM (for better or worse). I was relieved but at the same time sad when it was confirmed I was in progression again. I just needed that validation for better or worse from a medical professional. That’s exactly what I received.
I now at this point have 30 percent of my lungs left. I had 3 points above that in April. Now the sad fact is 70 percent of my lungs are gone; have been killed by this disease. It makes me angry as hell for them. But also makes me proud of them. As battered as they are, they still are ass-kickers for fighting back this hard for 12 years & continuing to fight now. At least in my eyes.
40 percent puts you in “severe” territory, which means you are approaching “end-stage” lung disease. Around 35 is when they start evaluating for transplant (this can vary based on the center but is a decent rule of thumb), and then usually at 30 or lower is when they time out when the transplant listing happens because they also have to factor in wait times for organs, not just the transplant & the need for transplant itself.
They also have to make sure that window is right because if you have a longer wait they have to be sure once you do get those organs, you are still healthy enough to withstand the surgery & post-transplant recovery. I’ve known women who were transplanted at or below 20 percent with LAM but they were very ill at at that juncture & often were waiting in the hospital for that call because they had very high oxygen demands. Yet, each person knows their line in the sand with their disease & their timing. When they are ready for this level & that point is also different for every one.
I made 2 years at 35 percent and felt no different than high 40’s physically or day-to-day. In fact, I felt pretty good most days. When I started sirolimus in 2009, I was around 45 to 47 percent from what I recall. I had drops but not as severe as off the drug and even a few periods of plateau which I never had prior to treatment. When I dipped to 33 percent in April, I needed oxygen for exertion. Now at this level, I’ve needed it 24/7 since July. If I’m lucky, I can take it off for 15 minutes here or there if necessary.
With this last drop I need at least a liter more to do things from when I started oxygen in April. That may not seem like much. Keep in mind though it’s been a pretty rapid progression over just 3 points on paper. Everyone is different where their threshold is. This threshold is the line where the body can adapt and compensate or adjust on its own without help (this is my own definition but most women I know with my disease agree with this). Once that threshold is crossed, it most certainly means oxygen even if it doesn’t mean transplant.
Some ladies who had numbers higher than mine needed oxygen before I did. Others have my numbers but are relatively stable & don’t need what I need oxygen wise or only need it for certain things. Others are at my level & don’t qualify for transplant. It runs the gamut.
It’s very hard & very individualistic, so that’s why in my disease the allocation score is only part of the equation & why most transplant doctors & professionals who deal with LAM actively solicit feedback from their patients on quality of life & how the disease is affecting their patients on a daily basis, because it’s not as pure & simple as straight math or numbers on a test result.
I have always been a very realistic, pragmatic, & take the bull-by-the horns person when it comes to my health. I’ve not really known how else to be when fighting diseases as insidious and unpredictable as LAM & TSC. But I have no intention of stopping now.
Honestly, I was so wore out in 2007 & 2008 from both diseases if you would have asked me, I might have felt differently about this whole experience. Yet probably would have at least gone through the evaluation to find out if I would even qualify. I also knew a lot less women back then with successful outcomes so I was more ambivalent about transplant itself at that point, in addition to being tired from constantly taking turns fighting both diseases at the same time. My body was beat up (10 surgeries beat up).
But I was given that life preserver of sirolimus in 2009, when there were no guarantees it would work. I took it, responded & the risk paid off.
Right now, this is another life preserver where the benefit outweighs the risks, (even though there are considerable risks & I am not naive in knowing them), but in 2 months when they throw me the ring for real again, I’ll grab it with both hands.
Even if I’m declining right now, I’m declining into what I feel is a safety net. I just want to cast that net as wide & deep as I can from the start, especially if that’s the approach & course of action that’s recommended.