I realize I haven’t done much updating on my situation lately. There hasn’t been that much to report, but I appreciate everyone who has been dropping in to ask. My next appointment is the 25th & I meet with my local doctor the day before. I was supposed to be in this place last month, but the weather had other plans. I can’t say it made that much difference.
In preparation for the inevitable, I’m going to ask both sets of doctors to review my medications at my appointments, especially my inhalers to see if there’s a few changes that can be made safely to move me to drugs that are actively stocked by my transplant hospital’s pharmacy.
The reason for this is, I found out after my October hospital stay, I was subject to frequent swaps of medications I was unfamiliar with. Feeling as punk as I was at the time, I couldn’t tell whether they were working as well as my regular cocktail or not.
I don’t want to run into this situation post-transplant since I’ll have so much new to adjust to with other meds.
It has also been a few years since I’ve had a review done so I don’t think it hurts to take another look & be sure I’m on the most effective medicines possible.
As far as my breathing goes, it’s no worse. My energy level has been lower some days & pain has been a bit more nagging as of late from time-to-time. Some of this I know is exacerbated by the winter. The cold & my lungs don’t play nicely together.
Some of this may also be par for the course at my level of decreased lung function based on friends who I know have had similar complaints.
I’m sure the past interventions I’ve had on my lungs to keep them from collapsing probably makes the inflammation hurt worse when it flares up.
This is certainly not an entirely new issue, but it is happening a bit more frequently than in the past. I want to nip it in the bud if I can.
The drawback is, I don’t have a lot of good pain control options because of my kidneys when the over-the-counter acetaminophen isn’t enough. I can’t take a lot of the usual suspects as far as anti-inflammatory drugs go or even some other drugs I’ve taken in the past.
I did use the Pain Toolkit app with my last few flares & found it really helped me have a good conversation with my transplant nurse practitioner & my local primary care doctor about these flares when I let them know.
Both were supportive & understanding as to why it was frustrating. Especially because it was harder for me to remain active during those times.
Regardless, I know I’m getting closer to listing. My gut is also telling me it’s time as far as measuring my readiness & willingness to move forward in the listing process.
I can’t say that I regret waiting a few extra months. (Of course, this has been true with most of my life. There’s not much, if anything I would change.)
I was always told by some post transplant women I knew that I’d know when it was time. I know exactly what they meant by that now.
Hopefully the worst of winter might be past when I actually start getting calls (fingers crossed).
I know a few other of my LAM sisters are in the same boat as me with preparing to list. A few who were evaluated around the same time as me have actually been transplanted.
This gives me comfort to have buddies I know walking this path in parallel. I hold their hand from afar & give it a squeeze for good energy, strength, & luck in their journey.
As for me, I have a good feeling (always have had) about the outcome. In as much as I have say & control, I’ve done what I can to continue to build my body up, & to prepare physically & mentally to undertake this challenge.
Luckily, I have a strong support system & cheering section which has always helped in the past.
I’ve always found good energy when I’ve needed a refill or been lacking a bit of it myself. This time is no different. It won’t be easy, but I’m as ready as I can be. (This doesn’t mean I’m not at all nervous, of course. Nothing can really truly prepare someone for this moment when it comes.)
LAM, I hope you’re ready for an ass beating. I’ve been training for this in every facet & style. I know all your dirty tricks & secrets. If we go 12 rounds so be it. Just don’t assume this time you’re going to be the one coming out on top.
I may be an underdog, but I’ve always been a contender.