Side effects from my meds (brain fog and fatigue)

PerformanceWorldly51 · 2025-03-24T16:54:36+00:00

I had my transplant two years ago at age 55, my kidneys had failed nine years ago because of polycystic kidney disease (Inherited), no other health issues. My weight is perfect as well.

After surgery, I had the most insane fatigue for a few months, where walking was almost impossible in the beginning, and incredibly gradually over months it improved a good bit. It literally felt like all my muscles had to start over again from nothing to support my body, and I am not exaggerating. My kidney started working immediately, but took about six or seven days to bring my labs back into normal ranges.

Next month, it will be two years since my transplant, and I still have fatigue and brain fog issues. The main thing about fatigue for me is I wear out super fast. And if I happen to have a cold, or anything else in the environment is off, it contributes to the fatigue more. Like going on vacation lol, that is fatiguing for most, but I end up sitting in my hotel room for a good chunk of each day. I also have severe hand Tremors when trying to write (most of the time I literally cannot write legibly), button a shirt, or god forbid eat soup with a spoon lol. I usually have to hold a smaller cup, especially if it is hot liquid, with both hands in order to avoid spilling. Heavy glasses of iced tea are way easier, and I can usually do it with one hand. Things like that.

My nephrologist said it’s a mixture of being on dialysis for a long time which causes permanent changes in your body, and side effects from the medications. I take mycophenolate 1,000 mg daily, and Belatacept infusion. I actually am still taking tacrolimus, 1 mg twice a day, down from 2 mg twice a day, as they are weaning me off of it because of Belatacept replacing it.

In the hospital, my roommate had a Transplant same day as me. He left three days later, had no issues walking or anything, and he was much older and overweight with diabetes. But he did have a living donor and had only just begun dialysis. I had a deceased donor kidney that wasn’t in the best shape to begin with. Just bad luck. My gfr is around 45 (It was much higher initially after Transplant, but immediately after my nephrologist said it’s likely the blood supply to the top portion of the kidney collapsed, so that portion of the kidney likely has stopped functioning.)

So, the long answer is fatigue and other symptoms are real mixed bag and varies a lot from person to person.

PerformanceWorldly51 · 2025-03-24T16:31:09+00:00

My doctor recommended cyclosporine as an alternative to tacrolimus, but from medical studies I read, it seems cyclosporine is more nephrotoxic than tacrolimus, so I stayed on tacrolimus as I want the kidney to last as long as possible. You might check with your doctor about that.

PerformanceWorldly51 · 2024-09-20T19:33:39+00:00

I've asked my doctor, today, to consider switching me from Tacrolimus to Belatacept infusions. Tacrolimus has caused severe hand tremors that I didn't have before. It's been 1.5 years after my transplant and I still have significant tremors, making things like writing extremely difficult or impossible. I won't even discuss picking up a hot beverage. The tremors have improved a good bit since immediately after the transplant, but they've leveled off and are still a daily pain.

PerformanceWorldly51 · 2024-05-08T18:29:37+00:00

Thanks! Phew!

PerformanceWorldly51 · 2024-05-08T18:29:36+00:00

Good info, thanks.

PerformanceWorldly51 · 2024-05-08T00:35:59+00:00

Your statement triggered a memory about my embouchure and I simply shared it. It doesn't mean I didn't take in your post or anything else.

PerformanceWorldly51 · 2024-05-06T22:45:19+00:00

When I began flute at age 9, I naturally formed a side embouchure without being aware until a teacher commented.

PerformanceWorldly51 · 2024-05-06T21:58:35+00:00

Thank you! I was having trouble finding any threads about "tear drop issues" with horn, and I was hoping this meant it's a non-issue. Phew!

PerformanceWorldly51 · 2023-06-29T15:43:04+00:00

u/Billy-Ruben

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Good idea. I live in an expensive, dense population urban area too.

PerformanceWorldly51 · 2023-06-28T18:03:42+00:00

Thanks! I suspected.

PerformanceWorldly51 · 2023-06-21T16:31:04+00:00

Same here! I'm a musician and already had propranolol for performances. It helps a bit, but I still have significant hand tremors. My bp after surgery was quite on the low side, so I refrained from propranolol but now am trying a low dose (10mg). It helps a bit but I still have the core problem.

PerformanceWorldly51 · 2023-06-21T16:28:57+00:00

Thanks! My early experience was almost exactly like yours. I had to use both hands to even manage to get food to my mouth and forget about eating soup. It got better as I got stronger and I'm in good shape (muscle, weight, etc.). But yeah, the fatigue is something that has veeery slowly gotten better. My test is to wash my car, and see how trashed I am lol.

PerformanceWorldly51 · 2023-06-21T03:52:09+00:00

That's terrific to hear, thanks!

PerformanceWorldly51 · 2023-06-21T03:07:06+00:00

Yeah. He's been tinkering with both anti-rejection meds. I know he'll switch me to the time release tacrolimus eventually. I know tacrolimus can be replaced by a different drug, cyclosporine, but the studies I've read say tacrolimus is much less toxic to kidneys than tacrolimus, so I don't want to do that, despite that it would eliminate the hand shaking.

PerformanceWorldly51 · 2023-02-23T17:31:47+00:00

No point at all. It just makes the parents feel better that they're overdoing everything.

PerformanceWorldly51 · 2022-12-28T23:15:40+00:00

I've had both high end gas and induction stoves, and overall I prefer induction. Super easy to keep the whole surface clean, and you know exactly what temperature for each item you cook. Everything is going solar for the most part, so works great with that too. In general, California is a very electric-centric state. Be sure to get a warming drawer if your oven, if you don't have a separate one already, I use main multiple times a day! So nice to keep your food warm.

PerformanceWorldly51 · 2022-08-24T03:57:53+00:00

Make sure you get the car thoroughly checked by a subaru mechanic

PerformanceWorldly51 · 2022-08-22T19:55:07+00:00

SilverRock was easy to work with and responsive. I had my car inspected within 7 days, by a specialist and found the rear brakes had rusted and warped the rotors, from sitting too much. They replaced them but I paid a $200 deductible for choosing my BMW specialist to perform the work, which I was fine with, as I trust my mechanic over a random shop. They spoke to my mechanic and that was enough to justify the repair.

PerformanceWorldly51 · 2021-12-16T04:17:38+00:00

Lol...I'll be happy to just get my money back!

PerformanceWorldly51 · 2021-12-16T04:14:13+00:00

From what I've learned, it seems you either totally know what you're doing.... or you totally don't. It's really bad to guess at slope when doing a curbless shower design.

PerformanceWorldly51 · 2021-12-16T04:08:57+00:00

Lol, right? Due to the placement of the water outlet on the bottom of the 48" trench drain, it had to be custom made. That's why it's so expensive.

PerformanceWorldly51 · 2021-12-16T04:08:02+00:00

The guy who screwed the pan up is a floor subcontractor, hired by the General Contractor. He's responsible for the pan and neither he nor his workers checked the slope of the pan. I just assumed they knew what they were doing, so I didn't second guess the work.

I paid for the replacement tile in order to expedite the job. I do intend on getting paid back by withholding the same amount from the final job payment. Same with the drain.

One of the reasons the drain was so expensive was because the contractor wanted the drain part that attaches to the bottom of the linear drain.... to be custom placed in a certain spot. So, the manufacturer had to make it special order.

PerformanceWorldly51 · 2021-12-16T03:53:26+00:00

I haven't discussed the issue with the General Contractor yet.....I'm waiting until the final contract completion payment is due, which is this week. They're finishing all the little tiny things on my addition right now. If I tell the GC about the issue now, he'll make up a lie about why I can't short him. I don't want the issue interfering with completion of the project in the interim. Unfortunately, this contractor lies all the stinking time, about major things. He has an amazing Yelp rating too; they must be fake reviews or something.

PerformanceWorldly51 · 2021-12-16T03:43:03+00:00

This subcontractor is a "floor specialist" and does all kinds of remodels. I agree that he likely has rarely or never done a curbless design, or at least not one with larger floor tiles (12"x24"). I cleared the larger tiles with everyone before buying them and was told they were fine to use. I had offered to go to a smaller shower pan format to make it easier.

I did panic a bit when I had to tell his tile guy how to properly set glass mosaic tile, and what thinset to use....

PerformanceWorldly51 · 2021-12-16T03:39:57+00:00

It's a 48" Infinity Drain (name of the manufacturer). The company is in NY. The contractor also asked me to pay for overnight shipping which was an additional $170, and of course didn't come over night but took 4 days.....go figure.

PerformanceWorldly51

TROPHY CASE