Today was the day I got my MRI (or should I say MRA) of my abdomen to check on my kidneys. I have one every year to be sure everything is on the up and up. My nephrologist did what he could to have them abbreviate the test because the breathing cues & laying flat for so long take it out of me. Especially now being between 6-8 liters of oxygen for everything I do.
Days like today remind me of how sick I really am. Laying flat hurts. I forgot to take my pain medicine early when I took the rest of my meds, so I was feeling everything more. By the time the last set of tests rolled around, I was completely whipped.
I signed the consent to get the films & report sent to me so I can hopefully have them in time for my next visit with Penn the Thursday after Labor Day.
As I was leaving, I saw my local lung doctor. She even recognized me after my haircut. She’s a peach & I’m very fortunate when my other pulmonologist left, he left me in her care. She really has gone above & beyond to make my wait time easier, help me when issues with my oxygen or other things have come up.
I hadn’t gotten to talk with her about dual listing since I pretty much decided that after my last check up. So I told her that & she agreed that it was good idea.
Both of us are surprised I haven’t been transplanted by now. I can tell she really does understand how hard this has been on me. Not because of waiting but my whole journey and everything I’ve been through the past year.
It has taken so much out of me. I think in part is because I don’t have periods of quiet or even keel anymore, it’s just one thing after the other. We both agreed without the steroids and Rapamune I would be in serious trouble now & that’s the only thing, along with rehab that keeps me hanging in.
She is hoping that, (like I am) I can get the appointment soon to find out if I can dual list at U of Maryland. Maybe that will get things moving again.
It’s nice to have a doctor that is genuinely concerned about her patients as people. It’s great when she recognizes her patients in the parking lot of the hospital, she takes a minute to sincerely ask how they are holding up & stop to ask how they are doing.
It really helps me to know I have such a strong team in my corner locally.
Right now, I am not the easiest of patients complexity wise & it could be very easy for any of my three doctors (lung, kidney or primary) to just foist me off on my center or throw their hands up.
Luckily, none of them do that. I’m glad I can also be honest & vent to them about how this transplant wait is taking a toll physically & mentally sometimes.
None of us ever thought that I would be inching up on the 6 month mark with only one dry run, I don’t even think my center did. The way they all talked, they figured I’d be done with it by now.
This week was full of trying to get records & get things sent down to Maryland. Hopefully, soon after the holiday I can get an appointment & see what they have to say.
I am not rushing or frantic. I know people tell me to hang in there & that it will happen soon. However, being so sick, watching my quality of life slip away, & having my friends have to watch me decline & do less & less is something I wouldn’t wish on anyone to have to go through.
I’m a patient person when it comes to healthcare decisions. Yet, even I have my limits. My limits are being severely tested & to say otherwise wouldn’t be honest.
I am in therapy, my mental health is good, I’m just drained. Exhausted. Tired of fighting – for everything. By this point, I have a feeling anyone would be.
I probably would be doing better if everything recently wasn’t such a huge energy suck. The stress that I’ve been under the past few weeks is finally letting up. I’m just hoping another dogpile isn’t on the horizon.