1. < Transplants

Brain fog update

Posted by jodeej @jodeej, Dec 18, 2018

I didn't realize that I hadn't updated since my husband's check up earlier this month. We met with a neurologist at Mayo and she ruled out dementia or a brain tumor, thankfully. She isn't sure what is causing the issues for certain, but said meds could be the culprit. She wanted him to have an MRI of his head and a sleep study done. We had them both done at home and his MRI was normal. He just did his sleep study last night, so we won't get the results until next week.

He's feeling good so he started back t o work this week. He's tired, but so far so good! He has had to really think some things through and get reminders on a few things, but overall it's been better than expected.

Blessings,
JoDee

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

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 31, 2018
In reply to @gaylea1 "@ rosemarya Sleep is still pretty poor but that is mainly due to the pnemonia. It..." + (show)
@gaylea1

@ rosemarya Sleep is still pretty poor but that is mainly due to the pnemonia. It is hard to breathe or catch my brsath at times. I was on oxygen at the hospital. Back pain has receded! Yes I have been reading of setbacks experienced by many others. I find everything very interesting and so informative. I knew there would be setbacks just not how they would manifest in me. I am very fortunate at my level of care. My numbers aren't receding so back to CT Scan tomorrow. All in all I feel pretty good. Happy New Year 🎉

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Gaylea, Keep on improving! I'm cheering for you now and into the new year.

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JK | @contentandwell | Jan 1, 2019
In reply to @gaylea1 "@rosemarya Hi Rosemary. I am now experiencing the same as you with the disbetes. I do..." + (show)
@gaylea1

@rosemarya Hi Rosemary. I am now experiencing the same as you with the disbetes. I do not take insulin but take two oral medications daily. I have a meter and check my blood twice a day. This was really distressing for me as well. I have never had any underlying disposition to diabetes prior to surgery. The prednisone levels are also the cause for my blood sugar elevation. Im looking forward to the prednisone levels being lowered. Aside from that the pnemonia is slowly healing. Would have made recovery a lot easier without this complication. I made it home though only 1 week after the second surgery. First transplant surgery Nov 28th 2018. 2nd repair surgery Dec 22nd 2018. Came home yesterday Dec 30th. Had blood tests this morning and I'm back for another CT Scan Wed. Blood levels hovering. I really dont think I could handle another surgery so soon.

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@gaylea1 as @rosemarya mentioned, the high blood sugar is not unusual with high doses of prednisone. Also, when I was on prednisone one other time, I gained a lot of weight in a couple of weeks. That fell off when I stopped taking the prednisone.
I'm glad that your pneumonia is getting better, you sure do not need that complication. That's great that you are home now. I hope all goes well with the CT scan.
JK

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karenjs | @karenjs | Jun 18, 2021
In reply to @rosemarya "JoDee, there have been times when my meds (prograf) has been out of the prescribed range,..." + (show)
@rosemarya

JoDee, there have been times when my meds (prograf) has been out of the prescribed range, and it has affected my brain. When this has occurred, I have an extremely difficult time focusing, am easily distracted, easily frustrated and moody. A few years ago at Christmas time, I could not tolerate the noise and commotion in the stores, and couldn't even pull my car into a parking space where I had 3 in a row to choose from. When I almost ignored a red light while out with husband, I decided to call my coordinator. She told me to get labs and prograf level checked, and sure enough my level had gone too high. My dosage was lowered, and the symptoms diminished. Of course, more labs followed.

I have learned to live with lists. I have learned to not even think about multitasking. I have learned that I must not make a quick decision because I need time to process the information. I have come to accept that I am easily confused when in a new situation. I don't risk driving in heavy traffic, or have music on, or carry on a conversation when I drive. My med levels have remain unchanged for 4 years.

I am happy that your husband is feeling ready to start back to work. I will be watching for updates .

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JoDee, thank you for the information I'm very new to the transplant community my heart transplant was 04/04/2021. I didn't know what was going on I was agitated, couldn't stand the loud noise, My prograf was just reduced but my Transplant Team, they're requesting a repeat lab this week due to my prograf levels. My magnesium has been up and down, hand cramps on some days out of control. So with each blood draw they are also checking my magnesium levels to be adjustments. The transplant has been a success, all of my echo's has been good and my prednisone has just been reduced. Many side effects from the prednisone; my biopsies has been all good as well, my problems came from the side effects from the medications a lot of nausea and vomiting. I appreciate any advice you may have!

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3 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 19, 2021
In reply to @karenjs "JoDee, thank you for the information I'm very new to the transplant community my heart transplant..." + (show)
@karenjs

JoDee, thank you for the information I'm very new to the transplant community my heart transplant was 04/04/2021. I didn't know what was going on I was agitated, couldn't stand the loud noise, My prograf was just reduced but my Transplant Team, they're requesting a repeat lab this week due to my prograf levels. My magnesium has been up and down, hand cramps on some days out of control. So with each blood draw they are also checking my magnesium levels to be adjustments. The transplant has been a success, all of my echo's has been good and my prednisone has just been reduced. Many side effects from the prednisone; my biopsies has been all good as well, my problems came from the side effects from the medications a lot of nausea and vomiting. I appreciate any advice you may have!

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@karenjs, Welcome to Mayo Connect and Congratulations on your recent heart transplant. I am sorry to read that you are experiencing some difficult side effects with your meds. I am a liver and kidney recipient, and it my understanding that our bodies can sometimes take a while to adjust to these powerful drugs. (My internet is not working and I don’t know when the local outage will be repaired. Please forgive me for the hasty reply on my iPhone.)

I want to invite @danab and @estrada53 who are both heart recipients to meet you and to share their experience with you.

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Mentor
Dana, Volunteer Mentor | @danab | Jun 20, 2021
In reply to @karenjs "JoDee, thank you for the information I'm very new to the transplant community my heart transplant..." + (show)
@karenjs

JoDee, thank you for the information I'm very new to the transplant community my heart transplant was 04/04/2021. I didn't know what was going on I was agitated, couldn't stand the loud noise, My prograf was just reduced but my Transplant Team, they're requesting a repeat lab this week due to my prograf levels. My magnesium has been up and down, hand cramps on some days out of control. So with each blood draw they are also checking my magnesium levels to be adjustments. The transplant has been a success, all of my echo's has been good and my prednisone has just been reduced. Many side effects from the prednisone; my biopsies has been all good as well, my problems came from the side effects from the medications a lot of nausea and vomiting. I appreciate any advice you may have!

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@karenjs Hi and Welcome to connect and Congratulations on the New Heart. Yes unfortunately in the Beginning the meds are the worst part beside general healing. Let's see it's been about 2 months now and you symptoms sound like prednisone but it can be the Immunosuppressed drugs also. The Antiviral is the one I had issues with my stomach and I found to make sure to have something in my stomach before taking. The Prednisone gave me the most issues tho with bad tasting food, my hand shakes I couldn't write the first few months without shaking and my wife really disliked my mood swings. But the good news is they do taper off to lower levels as the biopsies show no rejection. For the Valcite it too will be eliminated around 6 months or so. I had to go back on it tho when I developed CMV which is pretty common and when I went back on it they gave me an anti nausea pill to help with that issue. So hang in there and keep your team informed.to the side effects and options are available. Life will get better so hang in their. We are all hear to help so please keep in touch. Just as a pick me up im.3.5 year's post and most of the issues your having are a distant memory. I had to actually look up some.of the drug names I've been off them.so long. So by 6 months or so you'll probably forget how much of an issue you had in the early stages. I hope that helps and please ask any question you have.
If you feel comfortable can you share a bit more of why you needed a transplant? My background was due to Arrhythmias that drugs and a pacemaker could not control. any more.
Have a Blessed Day
Dana

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 25, 2021
In reply to @karenjs "JoDee, thank you for the information I'm very new to the transplant community my heart transplant..." + (show)
@karenjs

JoDee, thank you for the information I'm very new to the transplant community my heart transplant was 04/04/2021. I didn't know what was going on I was agitated, couldn't stand the loud noise, My prograf was just reduced but my Transplant Team, they're requesting a repeat lab this week due to my prograf levels. My magnesium has been up and down, hand cramps on some days out of control. So with each blood draw they are also checking my magnesium levels to be adjustments. The transplant has been a success, all of my echo's has been good and my prednisone has just been reduced. Many side effects from the prednisone; my biopsies has been all good as well, my problems came from the side effects from the medications a lot of nausea and vomiting. I appreciate any advice you may have!

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@karenjs, I found this article that I want to share with you to let you know that you are not alone with side effects. Maybe this will give you some additional information to discuss with your doctor. Blogs>Transplant>Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
I know, your last post was only 6 days ago, but I'm wondering if you are feeling any better? Give your body time to adjust, you have recently had a major surgery and are still adjusting to the new organ and your new life.

What are some things that you are looking forward to doing that you couldn't do before your heart transplant?

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