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Side effects from meds after Kidney Transplant

Posted by matthewmcbrien @matthewmcbrien, Apr 7 12:31pm

I received the call in the early morning on Jan 19, 2024. By 7:30 that evening I had my new kidney. SO GRATEFUL!!! Especially since I was never on dialysis and I was so blessed to be on wait list only 5 months.

I’m 60, generally in good health otherwise, active w tennis previous to transplant. Diagnosed with Polycystic Kidney Disease when I was 40.

I’m a few months in and it seems I’m having reactions to some meds that are yet indeterminate. Have any of you experienced these symptoms? I have for about the past 3-4 weeks.

The most annoying is sound in my ears, intermittent sometimes one, then the other and can be both. Mostly a woosh low tone consistent sound. Then sometimes a constant tone ring. Head seems foggy, periodic headaches, sometimes neck soreness.

I have other symptoms as well.

It’s been just 11 weeks since transplant.
Mostly healing up well.

After researching my initial thoughts are the Bactrim I’m taking may be the source of the side effects listed. Through research my symptoms items are listed as side affects from Bactrim.

Has anyone else experienced these specific side effects? Had you switched to another Antibiotic and was it an improvement and to what degree. Or did you stay on it and eventually it went away?

Is there a site you’d recommend to assist with this subject further?

I think it’s possible I will be off the antibiotics at a point, I’m not sure just when I go off them altogether. I think soon.

Thanks for any help or suggestions you can provide.

Interested in more discussions like this? Go to the Transplants Support Group.

Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Apr 7 7:50pm

@matthewmcbrien congratulations on your transplant! You are still not very far out from transplant. I am 18 years post pancreas transplant. I am inactively listed for kidney transplant. Thankfully (thank God) my eGFR is still too good.
I’m curious; what immune suppression are you on? Whatever it is there are side effects and a lot of adjustments to be made. I promise you things do get easier and become better with time.
I too had Bactrim and had difficulty with it. I didn’t experience the side effects you describe but there were others. There are lots of immune suppressants, antibiotics, antivirals, anti fungals ….. available. Your best line of support is your transplant providers. Have you talked to them about your concerns?

REPLY
1 reply
stephanierp | @stephanierp | Apr 9 8:07am

Hello, Welcome, and Congratulations on your new transplant!

I too, am a PKD survivor and had a kidney transplant 4 years ago. 11 weeks out is still pretty early, and your body is probably still trying to figure out what the heck happened:) And you are correct, some of the meds you are on now, may be reduced or eliminated over the next few months.

I am allergic to Bacitrim, and so was not put on that drug. Instead, I did a series of breathing treatment for my antibiotics, which had some icky side-effects. I think they lasted around 2 months and then I was off of them. So, most likely, you'll be off the Bacitrim soon.

The whoosh low tone sound reminds me of how I felt, when I had blood pressure issues. I had the PKD high BP, before the transplant, and then after transplant, I had low BP for a year or two. Neither feels great. With high BP - headache and whoosh feeling in my head, ringing, anxiety, etc. With low - memory issues, light-headed, lower energy.

Brain fog was for real and it's no wonder. Transplants tend to keep us under anesthesia for an extended period of time, which can fog up the brain. Kidney failure, means a lot of toxins don't get filtered from our system, which can make the brain foggy. And then, all the meds we take to avoid organ rejection have side-effects, that can include brain fog. I started doing crossword puzzles and playing online solitaire, woordle, etc in my spare time. My first AARP crossword puzzle after my transplant took me over an hour to complete:) But I kept at it, and now I whiz through them. The healing capacity of the body is truly amazing!

Don't hesitate to talk to your transplant team. I remember reading up on side-effects of one of my meds, and determining I was just going to have to deal with it. Then, I mentioned it to my doctor. He reduced the dosage and the side-effect was eliminated.

REPLY
1 reply
matthewmcbrien | @matthewmcbrien | Apr 12 2:14am
In reply to @cehunt57 "@matthewmcbrien congratulations on your transplant! You are still not very far out from transplant. I am..." + (show)
@cehunt57

@matthewmcbrien congratulations on your transplant! You are still not very far out from transplant. I am 18 years post pancreas transplant. I am inactively listed for kidney transplant. Thankfully (thank God) my eGFR is still too good.
I’m curious; what immune suppression are you on? Whatever it is there are side effects and a lot of adjustments to be made. I promise you things do get easier and become better with time.
I too had Bactrim and had difficulty with it. I didn’t experience the side effects you describe but there were others. There are lots of immune suppressants, antibiotics, antivirals, anti fungals ….. available. Your best line of support is your transplant providers. Have you talked to them about your concerns?

Jump to this post

Hi Cheryl!
Thanks for your feedback and help.

My purpose here was to reach out beyond my nephrologist and own research to see if I could discover more beyond what is readily available.

I’ve just met with my nephrologist today. We did a brain ct scan and all was good there, they wanted to rule out aneurisms.

We are going off Bactrim through Monday to see if there are any changes in my numerous symptoms. We will make decisions from there, either to take it every other day or more likely switch to another antibiotic. Fortunately I will only be on antibiotics for another 3 months at most.

I am excited to find solutions to create the best quality of life this side of transplant. I’ve not really been on meds my whole life and besides PKD have been healthy, active and enjoying life.

I’m sure the meds are an overload for my system but realize their purpose and look forward to the right mix to accomplish the necessary goals.

Best wishes for your continued health and success!!! Thanks so much for your kindness in replying with insight.

Matthew

REPLY
matthewmcbrien | @matthewmcbrien | Apr 12 2:43am
In reply to @stephanierp "Hello, Welcome, and Congratulations on your new transplant! I too, am a PKD survivor and had..." + (show)
@stephanierp

Hello, Welcome, and Congratulations on your new transplant!

I too, am a PKD survivor and had a kidney transplant 4 years ago. 11 weeks out is still pretty early, and your body is probably still trying to figure out what the heck happened:) And you are correct, some of the meds you are on now, may be reduced or eliminated over the next few months.

I am allergic to Bacitrim, and so was not put on that drug. Instead, I did a series of breathing treatment for my antibiotics, which had some icky side-effects. I think they lasted around 2 months and then I was off of them. So, most likely, you'll be off the Bacitrim soon.

The whoosh low tone sound reminds me of how I felt, when I had blood pressure issues. I had the PKD high BP, before the transplant, and then after transplant, I had low BP for a year or two. Neither feels great. With high BP - headache and whoosh feeling in my head, ringing, anxiety, etc. With low - memory issues, light-headed, lower energy.

Brain fog was for real and it's no wonder. Transplants tend to keep us under anesthesia for an extended period of time, which can fog up the brain. Kidney failure, means a lot of toxins don't get filtered from our system, which can make the brain foggy. And then, all the meds we take to avoid organ rejection have side-effects, that can include brain fog. I started doing crossword puzzles and playing online solitaire, woordle, etc in my spare time. My first AARP crossword puzzle after my transplant took me over an hour to complete:) But I kept at it, and now I whiz through them. The healing capacity of the body is truly amazing!

Don't hesitate to talk to your transplant team. I remember reading up on side-effects of one of my meds, and determining I was just going to have to deal with it. Then, I mentioned it to my doctor. He reduced the dosage and the side-effect was eliminated.

Jump to this post

Hi Stephanie.

Thanks for your reply!

Happy to hear of the success of your kidney transplant!!

I’ve just met with my nephrologist today. We did a brain ct scan and all was good there, they wanted to rule out aneurisms.

We are going off Bactrim through Monday to see if there are any changes in the numerous symptoms. We will make any decisions from there, either to take it every other day or more likely switch to another antibiotic. Fortunately I will only be on antibiotics for another 3 months at most.

I am excited to find solutions to create the best quality of life this side of transplant. I’ve not really been on meds my whole life and besides PKD have been healthy, active and enjoying life.

I’m sure the meds are an overload for my system but realize their purpose and look forward to the right mix to accomplish the necessary goals.

I’ve been able to get back to tennis, I love to be active. Been playing for a couple weeks now and so good to be out there, even if I’m still just playing at 2/3 my potential. I’m being patient and trying not to push myself too hard too quick.

I’m grateful with you for your successful transplant and pray you have continued health and success!!!

Thanks much for your kindness by taking the time to reply!!

Matthew

REPLY
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