10/21/2025
Well, Thursday is my 1 year kidneyversary, so I thought I would give a quick update now, since I will most likely be in pain and trying to just rest on the actual day (another surgery tomorrow).
Linda the kidney is doing wonderful! My creatinine fluctuates monthly, but has been in the normal range about 85% of the time, and very close to normal the other 15%. Lots of little things can affect it, such as simply not drinking enough water. Also, the rest of my bloodwork has trended in the right direction and looks the best that it has looked in a really long time. At my monthly appt today, my doc told me we can move to appts every 3 months (but bloodwork is still monthly). So, go Linda!!!!!!
Things have popped up in the last year that are mostly just annoying, but other things have needed some follow up. Are these things due to the surgery? Due to my meds? Due to the kidney disease itself? Just getting older? Who knows?? š¤
SKIN: My face and scalp get extremely oily, but at the same time, my scalp (while still oily) is also dry and crusty - and it smells bad. So, thatās gross. My hair is also still falling out (this is definitely a side effect from a med) and it has taken on a different, weird consistency. The skin on my arms and hands has gotten thin and wrinkly. My dermatologist, whom I have to see annually now to check for skin cancer, basically said it is what it is, so get used to it. š
MOOD: my mood definitely fluctuates - jut ask my husband! In some cases, Iām much more chill, but other times, i get super irritated, super quicklyā¦ and can stay that way for days.
FATIGUE: I could sleep all day, and actually have slept all day on many occasions! The only thing that forces me to get up is the pain and stiffness in my back and hips. Went to sleep medicine and did an at home test and it came up with very mild sleep apnea, but not really anything that should make me THIS tired. So, at this point, I guess the culprit is a cross between the meds and chronic fatigue? š¤·āāļø
Back and joints: Iāve had back pain as far back as I can remember, but it ramped up about 200% this year. After an x-ray and an MRI of my back, we found arthritis, a slightly bulging disc, degenerative disc disease and a slightly narrowed canal. All these things can certainly be painful, but not to the extent of my pain, and nothing really explained the weakness in my left leg. PT doesnt help at all, and Iāve been approved for injections, but havenāt gone that route just yet. I did buy a cane though, for the really bad days. š
Which leads to my surgery tomorrow. Soon after my surgery, a lot of āwoman problemsā became much more magnified as well, and Iāve been dealing with that all year. Numerous appts, different doctors, ultrasounds, a CAT scan, etcā¦. I begged for a hysterectomy and was denied. In the last few months, I finally put two and two together and realized that my back pain is MUCH worse at certain times of the month (wink wink), and finally convinced my GYN at Danville to do a laparoscopy, and she will also be doing a hysterOSCOPY at the same time. I strongly believe that I have endometriosis and that this is what has been causing not only the stomach pain, but some of the pain in my back.
That being said, your prayers for things to go well tomorrow would definitely be appreciated! You know how it goesā¦ you donāt necessarily want them to find anything, but at the same time, you kind of pray that they do, so that you can get some answers.
Surgery has to be in Danville, just in case my transplant team needs to step in for some reason. I have to be there at 7:45am. I have to do a clear liquid diet today, so Iām cranky. š¤£ I will update soon!
Thanks again for all your thoughts and prayers the last few years! ā¤ļø And of course, thank you again to my beautiful donor Gina Laurie. š„°
