General
Karin’s daily journal
Updated May 28, 2021
in General
Hi everyone,
as part of my 2021 goals, I have decided to share daily how I feel either through a picture or a brief statement - I want to look back later on and see the trends and hopefully be both inspired and humbled by the challenges!
feel free to comment, share back or even start your own threads if you like!
today, Jan 4, I feel hopeful and motivated to take on new challenges - nothing feels too big and I am inspired to do better and more!
my picture was taken in the gym - first time I have gone since Covid...
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Go Karin! What a great idea for 2021.
Transplant Patient
Today I feel tired and down - anyone else who needs a middle of the week weekend???
Transplant Patient
That helped me @JimGleason - and my first cup of coffee!
Feeling better already and ready to take on the world again
Transplant Patient
Scheduled some exercise as well for this afternoon - really looking fwd to that oxygen increase driving my mood upwards!
@Karin Coffee always makes things better. 😉
Yoga and mediation always helps me when my energy is low.
Great idea @Karin! Today is the 6th, and I feel ready for a workout and ready for the day! What stabilizes me is making sure that I get outside - if only to get the mail and stretch and breathe in the cool air. My other huge stabilizing factor is making sure I get some quiet time, not work related where I can pray, dream, meditate and refocus my priorities. Happy Wednesday!
So GREAT you were able to find a clean, spacious, not-crowded gym for cold weather exercising! love the Lyfebulb t-shirt as well :)
Transplant Patient
@Denise_R @lescp3 it was a tough day today w poor sleep and a DENTIST appointment- had not gone for a year and wow - now I need crowns in two places! Apparently my drugs and long
standing diabetes really affect my teeth. Reminder to everyone / don’t forget checking on your teeth and gums!
Oh man, I need to get ky butt to the dentist! Feeling a little worried since this is my first time post transplant. Anything to consider? I have a chat with my Transplant coordinator beforehand
Transplant Patient
@Care_mass one year post! Congrats!!! Get yourself to the dentist but I am sure you are fine :-))
Transplant Patient
Today I am experiencing some tacrolimus fog - meaning I feel slow and my cognitive function seems less than optimal - anyone else ever feel this way? @mikem @meg @JimGleason
@Care_mass Congratulations on One Year! 🎉🥳
@Karin I’m experiencing some tacrolimus fog today. I hope is gets better as the day goes on.
@Karin @meg @JimGleason Oh dang, I feel that transplant patients I know often overlook the importance of dental/oral health. I know I often am guilty of that!
Re: Tac fog. This is definitely a weird one. I don't know if I've had this or if it's maybe what I sometimes think of as like epilepsy meds brain drain. Maybe it's both. I definitely have foggy days and moments, these days it seems more. Maybe because my gym keeps opening and closing and my body fat/muscle mass keeps changing? Does that change absorption rates? I recall the old transplant drugs changed absorption with body fat. So I was always on a higher dose than a lot of the other kids who had more body fat than I did. This was so perplexing to me as a child.
So do I know if I am having tac fog, I guess I don't know. How do we distinguish?
Today I'm headed back to the gym for the first time this year. Philly let them re-open recently.
Transplant Patient
@JimGleason Tac fog is a well established side effect of tac - most of us have it, and it is really bad. It does improve w lower doses, but never goes away. It has been shown that cognitive function improves when pts go on Bela from Tac, but many of us cannot go on Bela!
"About 50% of the patients 5–7 years after kidney transplantation show impairment of memory, attention and executive function. "
https://atcmeetingabstracts.com/abstract/cognition-after-belatacept-conversion/
@karin @JimGleason don't know if anyone has ever asked me about tac fog. I've known about it. see my other post.
@Care_mass - congrats on your one year! That's great! I'll be three years out at the end of this month! Yes, - oral health is important and critical to us as transplant recipients - still doesn't make it fun. @JimGleason is right - depending on what is being done, your team may want you to take an antibiotic first.
@karin - tac brain fog is real - really not fun. I have good days and days where I feel like I can never find the word that is in my brain somewhere!
Today is a good day - my husband's birthday! He is the most amazing partner in all of this that I could ever have wished for.
Transplant Patient
Thank you @Lisa_Hehenberger - flowers make me happy every time!!
Transplant Patient
Today was a super busy day w lots of activities for my daughter Liv - outdoor play in the morning followed by lunch w friends and then a brief drink w another friend while Liv slept - I am exhausted but in a good way - playing w liv and conversation w her is getting more and more interesting. Last night we also made the decision to get a little puppy that will arrive on her bday! WOW! Can’t wait to meet little Flower (Livs name for the puppy)
You are welcome! A small reminder that I am thinking about you from across the sea!
Transplant Patient
Has anyone tried a cleanse after transplant? I am 11/12 years out and never even considered it since I need to eat often and little to avoid feeling tired or nauseous etc, but for some reason o felt like this may make me revitalized and improve my skin/hair etc... it is almost 3 pm and I am soooo hungry!!!
I tried once many years ago. I ended up stopping after one day because my blood pressure dropped and I got really dizzy.
Transplant Patient
I haven't looked into a cleanse but have definitely looked into other supplements and products i could use to help me get to a healthier state. I'm kind of wary to do anything because my transplant team has been so strict on not using any herbal supplements or anything, but right now I've been doing a ton of juicing, eating a plant based diet and taking lots of supplements.
Not me either - my docs are super strict about diet, and I need to eat pretty regularly to avoid feeling nauseous. How are you feeling @Karin?
Transplant Patient
I feel mighty STUPID for trying this! I almost collapsed thirty min ago and am now eating crackers and soup and still feeling terrible.
Less than 12 hours on this cold pressed juice diet and I failed - this is not for transplant people
Oh @Karin! I'm so sorry! Transplant peeps just need to eat food....I just said to someone that I've kinda forgotten what being hungry feels like, but I know the times I need to have a small meal by in order to avoid the lightheadedness...Hope you're feeling better soon!
Transplant Patient
I should have asked before I started!! Felt so bad but feeling much better now already after a cup of tomato soup, piece of cheese and a Swedish cracker!
@Karin Oh I’m sorry to hear this. I’m glad you ate something and I hope you feel better soon. Always great to ask your doctor before.
Transplant Patient
@ChefAmanda i always believe I know so much and Don’t need to ask my dr for much / big mistake! Feeling good now - weird experience / it was not a pure hypo - I know those from my time as a type 1 diabetic but this was messing w me in a new way!
@karin Oh I understand that. I’m glad your feeling better now.