Over the last several weeks, I’ve been asked certain questions about my upcoming kidney transplant. I thought I’d answer some of the more frequently asked ones here. As a person with kidney failure, I see it as my responsibility to share the knowledge I’ve acquired.
Q: What caused your kidney failure?
A: According to the kidney biopsy I had in 2012, I have Focal Segmental Glomerulosclerosis, or FSGS. Due to the widespread damage the doctors saw (14 of the 16 glomeruli taken were completely scarred as to be rendered useless) they’re unsure if it’s primary or secondary FSGS. A year later I was diagnosed with lupus. My rheumatologist wondered if I have lupus nephritis, but my regular nephrologist doesn’t think I do. I do know that when the lupus is under control, my kidney function stabilizes, and when I flare, my kidney function tanks.
Q: Are you on dialysis?
A: No, thank God, but I came very close. Earlier this year my nephrologist started talking more seriously about preparing to start dialysis. When my kidney function dropped to 11%, the whole tone of the conversation changed. Through meds, rest, and tons of water intake, I got it back up to 12%, so we delayed dialysis access placement.
Q: Will the doctors remove your old kidneys?
A: No. The new kidney will just be added in, most likely to my lower right abdomen. It’s true that some people need to have their kidneys removed (usually due to PKD or kidney tumors) my kidneys will stay where they are unless they are causing problems beyond just not working.
Q: Are your kidneys painful?
A: Earlier in the disease process I had bad lower back pain. Even though some doctors will tell you kidney disease is not painful, I call bullshit on that. I vividly remember the dull throbbing ache on either side of my spine. I was worked up for all sorts of things and had everything from a colonoscopy to CT to ultrasounds. Tons of ultrasounds: several renal and pelvic and abdominal and three transvaginal, which are just about as fun as they sound. I think we did everything short of MRI. Finally I had the kidney biopsy.
I do have some kind of pain every single day, but with the lupus and rheumatoid arthritis, well after awhile you just get used to something hurting. If I didn’t have some sort of pain somewhere I’d check myself for a pulse.
Q: Are you scared?
A: I was, in the beginning. Strike that, I was scared shitless. The whole thing just seemed so damned unfair, you know? I feared getting really sick, feared not being able to work, feared leaving my husband a widower and my children motherless. I’m not scared anymore. I’m ready to feel better.
Q: Are you still working?
A: Sadly, no. I had to stop working last November. In all honesty, I haven’t really been able to work since last spring, but I wasn’t ready to step away from my career. I knew that once I stopped working as a veterinary technician, I most likely would not be able to go back, and I really loved being a tech. It was hard to face that my body was probably plain old done with vet med. I’m in the midst of applying for disability.
Q: How do you feel?
A: Tired. Scratch that, exhausted. All the time, no matter how much sleep or rest I get, I’m beyond fatigued. It’s like having the flu forever. Between the kidney failure and the anemia, I’m managing maybe two things a day. So, a series of emails and a doctor appointment, or a meeting and a load of laundry, and that’s it. Last night I ordered out for dinner after napping all day and doing one load of laundry. Today I kept the schedule clear, because tomorrow I have a doctor appointment, a phone meeting, and an in person meeting. I’m exhausted just thinking about it.