General
Brain fog, balance and memory.
September 27, 2023
in General
Hi, first of my name is yovanni new to this website and i can already tell i will learn from other people with the same struggles and not feel alone.
I spent 6 years on dyalisis until i found my donor, I'm 7 months post transplant and several of my biggest issues have been side effects other than bk virus but never passed 500 units thank god.
My question is has brain fog, memory loss or balance issues got better after time? (Taking envarsus 2mg a day).
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Hi Yovanni! Welcome to the group Happy you found us!
I am 17 1/2 years post-transplant. I experienced quite a bit of brain fog in my first year. I felt like it was my body getting used to all the medications. And then for the majority of my transplant, I didn't experience too much. It wasn't until about 4 years ago it started more frequently again. Be gentle with yourself, our bodies have gone thorough a lot. I would also bring it up to your transplant team. But I think many of us experience this.
@Jeanmarie Congratulations on 17 years that's amazing!
If you dont mind me asking what kind of diet do you follow?
Also when did your incision stop hurting? Mine still hurts if i make a sudden moves, it's been 7 months already so i get a bit nervous.
Thank you for your answer and i will talk to my doctor.
Transplant Patient
I had a liver transplant 3 years ago and I still experience brain fog. Most of the time it’s just things like forgetting words, losing my train of thought…
my balance returned as I got more core strength post surgery, and I definitely intentionally worked on that (I’m a yoga instructor and balance is a huge part of what I do).
I am having a hard time concentrating and constantly going back and checking that I have done /finished my task at hand. Having a lot of dizziness that just started, going to the ENT to make sure I am not having sinus/ear issues.
I follow a plant-based diet. I focus on clean eating. I wrote a blog about it here under the education tab. It really helped me continue to feel really great, most of the time. It took, I want to say at least a year for the incision to really heal. I think a little pain will be normal for a while as long as it's not red. But the doctor will check it at your appointments. I used a post-it notes app on my phone. I have a whole page of them and one of them I keep a running list of questions that I have for the doctors. Otherwise, I always forget when I am in my appointments.
@Jeanmarie I was thinking of doing the same diet, i eat chicken almost everyday and beef maby once a week. I'm shure it will be hard just because i work as a cook and love to cook.
I actually do the same and write down all my questions, thank you for sharing your experience and your advise 😊.
@Melsamm I know that sucks! I work as a cook have to memorize tickets, add-ons, the date, my name lol. Im so overwhelmed i just gave up on multi-tasking im eather on my phone or walking can't do bot w.o stumbling. But im not complaining i dealt with dyalisis i can deal with this. I have dizziness but rarely i dring water 95% of my day maby that helps.
@AliEm14 so lack of balance is because of the surgery incision or side effects?
Transplant Patient
@Yovanni for me it was mostly surgical. They cut through so much core muscle during surgery, which is needed for things like stabilization.
i do have side effects from my meds but I would describe that more as clumsiness and lack of coordination versus actual loss of balance
I never thought that it could be because of the incision, i will ask my doctor because i have to really try and walk straight specially when i turn.
Thank you for input!
Brain fog post transplant is REAL. I've always had a great memory, and after transplant I noticed a significant difference. It caused me a lot of turmoil for a while until I learned how to manage and write things down, set reminders, put it in my calendar, etc.
TServold I am having to do the same thing. I am so glad to hear it’s not uncommon I was getting worried about my self.
I do have these issues as well but I’ve blamed the brain fog on the meds and lack of sleep. Then the lack of balance I thought was my weight gain. I was staying strong and healthy until a recent setback in June and boy have I gained weight and lost a lot of strength. It’s a battle fir me to lose weight but you all have shared how important water intake is and that’s helping!!
Deb, my acute liver rejection/shoulder surgery last year set me back to, I was doing so good, starting now to feel a little stronger. I have been in PT for a while b/c I do not want to have another surgery on my shoulder. Work in progress for sure.
I go to liver clinic next week and will discuss my concentration, dizziness and balance issues. In the meantime I did make an appointment to see a ENT. Hang in there😊💚
Melsamm Thank you. I just stay so darn tired I don’t have the energy to do anything. I make myself get up and go outside and work in the yard and cook meals. My husband is such a great support. I’m hoping my last labs are better and I can lower some doses. Good luck with your appointment!!
Thanks Deb completely understand I am familiar w/that tired feeling too. 🤞🏻they will lower my doses to.
@TServold yes it was so confusing to me because i never thought it was the meds if i knew i wouldn't of gotten so stressed over it. The hard part is when having a conversation and can't remember common words or how to spell.
@Melsamm I how that all go well at your meetinng and that you get some answers. You are always so kind. I haven't really noticed much confusion (but i'm still a pup in this journey. I have forgotten the spelling of simple worgs but I just ask Alexia Echo and she spelling it and flashes it acoss the ball. She also plays any musix that I need to help me concentrate. (I do have a problem with that) Thanks everyone for their input and my God bless you all and the families of our donors on this lovely Sarurday morning.
ole_ball_coach always enjoy u to, Thanks for all your encouraging words. I will agree it is a beautiful Saturday here in the south ready for college football. As always very blessed and grateful to our donor family’s 💚💚💙💙
Balance: that comes with more core strength. Going through kidney transplant, they cut through your abdominal wall. It takes at least 6 months to even allow ourselves to start thinking about more core work because we dont want to risk getting a hernia. I honestly would suggest learning the different "bandhas" in yoga which help to discover how to engage the core again. I have been incorporating pilates because its all functional movement.
Brain Fog and Memory Loss: I experienced that A LOT on dialysis. post transplant is getting much better however the memory loss that i have is pure trauma based. its the blocking out memories and the disassociating that happened in the moment and over a long period of time while on dialysis. therapy is helping with that. EMDR therapy especially. Brain fog comes and goes, i feel that really depends on medications and sometimes stress for me.
@Deb weight gain is another issue ive actually been steady on my weight but i get mad at the fact that im aways hungry.
With memory I've been getting better at letting go stuff i can't remember instead of stressing trying to.
Has anyone been diagnosed with early Alzheimer’s or dementia but it could possibly be all related to the antirejection meds.. my mom is 1 year post transplant but her mental fog and forgetfulness got worse 2 months post transplant. She was on tacro and they switched it to cyclosporine.. has any one had similar scenario??
WarriorLady, I have not heard anything about this, the brain fog definitely. I hope u get some answers from her Drs. I wish I could help. Happy Holidays 1 yr. TP.