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. Continue reading “FAQ About Kidney Transplant”
I was fortunate enough to grab an appointment with my awesome rheumatologist this week. When she saw me she was both amazed and concerned about the intensity of my swelling and general puffiness. She acknowledged how miserable I am and we decided to increase the prednisone drastically for 15 days, in order to break my hideous flare. Once we get confirmation of a negative tuberculosis test, I can start Benlysta . She also agreed to fill out whatever paperwork I need to start disability proceedings. That’s a relief, since I can no longer work. Continue reading “On Fat Pants and Caftans”
Last week I finally made a tough decision: I gave notice at work.
Lately my pain and exhaustion have both gotten out of hand. Despite changing jobs yet again, all my diagnoses caught up with me. While I could give it my all at work at the vet clinic (cats are a hell of a lot easier on a broken bodied vet tech) for a little over half of a shift, but then I had nothing left for my family. Continue reading “On Work, School, and Generally Being a BAMF”
A couple of months ago, I asked my doctor for a prescription to help the awful anxiety that began to crush me. The Xanax helps immensely, but it’s not a good long term option.
Last month I had my yearly well woman exam. After talking with my therapist and nephrologist about safe options, I ran it past my gynecologist. All of them agreed Effexor would be a safe option for me to try with the fewest side effects. My fantastic gyno called in the prescription for the generic extended release version. Due to my poor kidney function and slow med clearance, I wanted to try the lowest dose possible. 37.5 mg capsules, here I come. Continue reading “Mother’s Little Helper, Pt. 2: Moving the Elephant”
I had three extremely powerful moments in healthcare this week, moments where I was seen a human being and not just a medical puzzle with too many parts. Continue reading “When They Really See You”
What a drag, it is getting old. Over the last several weeks, my smile slipped. Scratch that, it expatriated to a foreign shore with no return date. I realized I needed help when the anxiety overran my life and I had full blown panic attacks.
Not this, not now. Since medical cannabis isn’t legal in my state (and forbidden for transplant hopefuls even in legal states) it was time to talk prescription pills.
Continue reading “Mother’s Little Helper”
This week is a milestone for me, and it’s kind of hitting me hard. On June 12, 2017, I spent the entire day at Barnes Jewish Hospital knocking out all of the testing and meetings for my pre-transplant evaluation. They usually do it over two separate days, but then I still worked full time, so they agreed to do it in one day to minimize time taken off.
Continue reading “Suck-a-versary”