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

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JK | @contentandwell | Dec 20, 2018
In reply to @gaylea1 "@rosemarya thank you so much for sharing your prograf med experiences. I have already had my..." + (show)
@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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1 reply
des46893 | @des46893 | Dec 23, 2018
In reply to @gaylea1 "@gingerw @jodeej hello there! Just a note regarding the brain fog and sleep. I had my..." + (show)
@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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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 23, 2018
In reply to @des46893 "I had to chuckle when I read your post. My back was extremely sore after surgery...." + (show)
@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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gaylea1 | @gaylea1 | Dec 26, 2018

@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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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 26, 2018
In reply to @gaylea1 "@des46893 I also suffered from extreme back pain and was also eventually that it was told..." + (show)
@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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1 reply
gaylea1 | @gaylea1 | Dec 26, 2018
In reply to @rosemarya "gaylea, I am sorry to hear that you are in the hospital. I know that recovery..." + (show)
@rosemarya

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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@rosemarya I love your cyber hugs💖Yes i was back in hospital within a week and havd been here since the 22nd o Dec. Christmas kind of came and went but we will celebrate when i get home. Not sure when yet but 2nd surgery went very well and my numbers are getting better daily. I am up and down to the toilet, sitting in chair for my meals (now on solids again) and doing some walking. The pain medical team came in and put me on a regular schedule with 3 different pain meds and tylenol. This keeps my pain somewhat in check. I am working hard to get better.

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gaylea1 | @gaylea1 | Dec 26, 2018
In reply to @contentandwell "@gaylea1 Don't even think about worrying about Christmas this year, just relax and let others do..." + (show)
@contentandwell

@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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@contentandwell I unfortunately had to go back to hospital after my first week out. I was admitted the 22nd Dec and had a 2nd surgery. So Christmas was here but it was the best place for me. Not sure when i'll get home but kids will cook dinner then and exchange gifts.

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1 reply
gaylea1 | @gaylea1 | Dec 26, 2018
In reply to @jeanne5009 "@gaylea1 So good to hear from You! Merry Christmas. Don't worry about the decorations...its just a..." + (show)
@jeanne5009

@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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@jeanne5009 Unfortunately I am in hospital again. I had a second surgery on the 22nd Dec to regraft a splinted artery from my heart to my liver. This was done right over the first surgery site and is more painful. So Christmas was here and I'm still here until who knows when. We will celebrate when i get home. Here is the best place for me right now. My numbers are improving every day so i am very glad to have it done so quickly.

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2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 26, 2018
In reply to @gaylea1 "@jeanne5009 Unfortunately I am in hospital again. I had a second surgery on the 22nd Dec..." + (show)
@gaylea1

@jeanne5009 Unfortunately I am in hospital again. I had a second surgery on the 22nd Dec to regraft a splinted artery from my heart to my liver. This was done right over the first surgery site and is more painful. So Christmas was here and I'm still here until who knows when. We will celebrate when i get home. Here is the best place for me right now. My numbers are improving every day so i am very glad to have it done so quickly.

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@gaylea1 So sorry to read you are suffering a setback. Sending you gentle cyberhugs of support and caring.
Ginger

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jeanne5009 | @jeanne5009 | Dec 26, 2018
In reply to @gaylea1 "@jeanne5009 Unfortunately I am in hospital again. I had a second surgery on the 22nd Dec..." + (show)
@gaylea1

@jeanne5009 Unfortunately I am in hospital again. I had a second surgery on the 22nd Dec to regraft a splinted artery from my heart to my liver. This was done right over the first surgery site and is more painful. So Christmas was here and I'm still here until who knows when. We will celebrate when i get home. Here is the best place for me right now. My numbers are improving every day so i am very glad to have it done so quickly.

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@gaylea1
I am sure you are in the right place but sorry you had a glitch. They say that can happen...just shouldn't be You!
Christmas around here was not very special...yours will be VERY special when you get home. Until then...continue to be a good patient and take your pain meds..its ok.
Praying that you get that healing in high gear.
Xoxo

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