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

@jodeej Your husband's body had a major trauma, going through the transplant. The body and mind are miracle machines but they still need time to adjust to a new way of being. In this case the transplant, meds and all of the surrounding issues those can cause. Anyways that is my thought on the matter, after hearing that the doctor has ruled out tumor or dementia. That is great news isn't it! I had a sleep study a couple of years ago but it was a problem. Being so uncomfortable [sleep on my back due to probes everywhere] I could not get any sleep and could not get into a deep sleep. It was exhausting. We will look forward to hearing the results of the sleep study!
Ginger

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Great to hear from you @jodeej and even better to read the good news about your husband! WOOT! WOOT!

I imagine his being back to work has been a major achievement and wonderful to read! What a terrific accomplishment!

Wishing you happy holidays and good news on the sleep study front!
Cheers to you both!

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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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@gingerw @jodeej hello there! Just a note regarding the brain fog and sleep. I had my livef transplant Nov 28th 2018 and have been lucky enough to have not suffered from any brain fog. It pretty much lifted after surgery. Sleep though has been another matter. I cant get comfortable and sleep in only short spurts at a time. My surgery was 8 and a half hours and being on my back so long has caused a great deal of back pain. I am told this will subside in a week or two. I hope that your husbands brain fog lifts soon.

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@gingerw

@jodeej Your husband's body had a major trauma, going through the transplant. The body and mind are miracle machines but they still need time to adjust to a new way of being. In this case the transplant, meds and all of the surrounding issues those can cause. Anyways that is my thought on the matter, after hearing that the doctor has ruled out tumor or dementia. That is great news isn't it! I had a sleep study a couple of years ago but it was a problem. Being so uncomfortable [sleep on my back due to probes everywhere] I could not get any sleep and could not get into a deep sleep. It was exhausting. We will look forward to hearing the results of the sleep study!
Ginger

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Ginger, he was covered in wires! Thankfully, it was after his first day back at work so he was exhausted, plus her was able to do it at home. He said he slept good. 🙂

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@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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@rosemarya thank you so much for sharing your prograf med experiences. I have already had my prograf med bumped up. I found out today i may have a blocked duct and had an ultrasound and a CT Scan today . A stent may be required. I am so nervous and upset. I have been ubable to decorate this Christmas and i usually have the house done by end of Nov. I cant tolerate conversations and feel like such a Grinch. Maybe it is the prograf increase? Christmas shopping has been restricted to online. But…i havd a liver!!!

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@gaylea1

@rosemarya thank you so much for sharing your prograf med experiences. I have already had my prograf med bumped up. I found out today i may have a blocked duct and had an ultrasound and a CT Scan today . A stent may be required. I am so nervous and upset. I have been ubable to decorate this Christmas and i usually have the house done by end of Nov. I cant tolerate conversations and feel like such a Grinch. Maybe it is the prograf increase? Christmas shopping has been restricted to online. But…i havd a liver!!!

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@gaylea1
So good to hear from You! Merry Christmas.
Don't worry about the decorations…its just a present having your family and friends around you. Good luck with your tests on the stent! I pray you will get stronger each day…

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@gaylea1

@rosemarya thank you so much for sharing your prograf med experiences. I have already had my prograf med bumped up. I found out today i may have a blocked duct and had an ultrasound and a CT Scan today . A stent may be required. I am so nervous and upset. I have been ubable to decorate this Christmas and i usually have the house done by end of Nov. I cant tolerate conversations and feel like such a Grinch. Maybe it is the prograf increase? Christmas shopping has been restricted to online. But…i havd a liver!!!

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Take care of you! Going out to stores to shop and decorating arrange the "reason for the season" though they are fun. Celebrate this second chance on life with family and friends.
Prayers for healing and that you don't need the stint.
Blessings,
JoDee

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@jodeej

Take care of you! Going out to stores to shop and decorating arrange the "reason for the season" though they are fun. Celebrate this second chance on life with family and friends.
Prayers for healing and that you don't need the stint.
Blessings,
JoDee

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@jodeej I am so happy that his return to work went well, that must have been a hurdle. I am also very encouraged for him by the responses of others like @rosemarya who have suffered from some degree of brain fog from the immunosuppressants. That must be a relief for you. Hopefully if that's the problem they will be able to put him on a lesser amount.
Right now I am pretty much at the minimum dose of immunosuppressants that they feel comfortable with. They are keeping it low (but within range of course) because it was having an effect on my kidneys, but things seem great now, and I am sure they will be for you husband too. It will be certainly be a much better Christmas for you now that you can rest assured that it is not dementia or a brain tumor.
JK

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@gaylea1

@rosemarya thank you so much for sharing your prograf med experiences. I have already had my prograf med bumped up. I found out today i may have a blocked duct and had an ultrasound and a CT Scan today . A stent may be required. I am so nervous and upset. I have been ubable to decorate this Christmas and i usually have the house done by end of Nov. I cant tolerate conversations and feel like such a Grinch. Maybe it is the prograf increase? Christmas shopping has been restricted to online. But…i havd a liver!!!

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Gaylea, Yes! You have a liver! 🎄
Pour yourself a cup of tea, and sit back, prop your feet up. This is the time for you to relax. Put aside your notion of creating a picture perfect Christmas with all the bell, ribbons, and foods. This is not a 'normal' year for you! You don't need to add any stress to your Miraculous New Life right now. Your body has been through a serious major surgery, and it needs time to heal and recover, something only you can provide.
Christmas comes every year, so save the decorations for next November. – Remember that you have been on a long journey – a miserable journey, as you approached your transplant. Even times when it seemed like it wouldn't happen.

Place a pointsettia in a prominent place to enjoy, or ask a friend or loved one to put up a few special decorations (Remember to ask them to return to take them down, too) The delis, restaurants, even grocery stores have fabulous takeouts that will ease the burden of holiday treats.

My experience was that the medicines changed often in the beginning as my body adjusted. This should level off over time, though. That is why we transplant people have so many blood draws. I assume that you are in contact with your transplant team about your level of stress and nervousness. They need to know because many peopls have had similar experiences post surgery.

Let me know what you find out about the stents. I send you my love.
PS – When things calm down for you, I hope you will get back to doing your diamond painting.

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@gaylea1

@rosemarya thank you so much for sharing your prograf med experiences. I have already had my prograf med bumped up. I found out today i may have a blocked duct and had an ultrasound and a CT Scan today . A stent may be required. I am so nervous and upset. I have been ubable to decorate this Christmas and i usually have the house done by end of Nov. I cant tolerate conversations and feel like such a Grinch. Maybe it is the prograf increase? Christmas shopping has been restricted to online. But…i havd a liver!!!

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@gaylea1 Don't even think about worrying about Christmas this year, just relax and let others do any required work. I had my transplant in September 2016 but my kids made that Christmas very special for me by preparing the whole meal and giving me a very special gift. I hope your family will do the same for you, you deserve it, and I am sure they are happy to know you have this new chance at life.
JK

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@gaylea1

@gingerw @jodeej hello there! Just a note regarding the brain fog and sleep. I had my livef transplant Nov 28th 2018 and have been lucky enough to have not suffered from any brain fog. It pretty much lifted after surgery. Sleep though has been another matter. I cant get comfortable and sleep in only short spurts at a time. My surgery was 8 and a half hours and being on my back so long has caused a great deal of back pain. I am told this will subside in a week or two. I hope that your husbands brain fog lifts soon.

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I had to chuckle when I read your post. My back was extremely sore after surgery. I had assumed any post surgery pain would be centered in the abdominal area. So I asked my care team what was the cause of this pain and discomfort. They said that if I had seen the way the surgical team clamped me open during surgery I would understand my back hurt so much.

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@des46893

I had to chuckle when I read your post. My back was extremely sore after surgery. I had assumed any post surgery pain would be centered in the abdominal area. So I asked my care team what was the cause of this pain and discomfort. They said that if I had seen the way the surgical team clamped me open during surgery I would understand my back hurt so much.

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des46893, That sounds like what I was told, too! I don't remember how long it took, but the pain did go away. Walking is good.

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@des46893 I also suffered from extreme back pain and was also eventually that it was told due to the way i was positioned during the 8 1/2 hour surgery. One week later here i am in hospital again with a second surgery over the first and enduring the back pain all over again. More site surgery pain too.

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@gaylea1

@des46893 I also suffered from extreme back pain and was also eventually that it was told due to the way i was positioned during the 8 1/2 hour surgery. One week later here i am in hospital again with a second surgery over the first and enduring the back pain all over again. More site surgery pain too.

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gaylea, I am sorry to hear that you are in the hospital. I know that recovery takes a different path for each one of us. Try to remember that the surgical back pain (awful as it is) is going to go away as you continue to heal and to start walking and being 'normal' again. I had a surgical procedure over my transplant was 1 year old. So I did not have the same degree of pain that you must be feeling.

Will you be going home soon? Have they given you anything to ease the pain? Are you able to get out of bed and walk?
I am sending gentle hugs via cyberspace.

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