Changes after Transplant

Posted by 2011panc @2011panc, Nov 22, 2016

I have learned that following a transplant there are many changes beyond your physical situation. What is your experience? Has your mood changed? Are you happier, calmer, more agitated, more anxious, more relaxed or something else? Do you feel you have changed emotionally, spiritually or mentally? Do you feel that your personality has changed? I am curious about more than physical. I appreciate your input on this issue.

@gaylea1

@contentandwell I was also on rifaxomin which complimented the lactulose pretransplant. Yes my HE episodes were debilitating. Total memory loss. I had no idea what month, what year or what day it was. I couldn't remember my address, my phone number or any important dates. It took me almost a full year to start remembering anything day to day. Post transplant my memory has dramatically changed but limited to only 4 months after surgery. I know that I spent Christmas 2018 on the transplant ward in hospital. and went home sometime in the new year. I then was re-admitted 2 weeks later to have surgery on an artery between my heart and liver and was reopened along my surgical scar and had all my staples administered for a 2nd time. Then I had a blocked bile duct that took 4 ERCPs to implant a stent. I contracted pancreatitis 3 times and if you look it up it is the most painful thing to endure. I was on morphine, tramadol, and other painkillers which I cant remember. It's been a trial to say the least. Today I had a cancerous skin lesion removed from my arm (which developed post transplant) by the plastic surgeon. Pathology results pending. Yes I'm grateful still. I'm alive and soon I will be close to recovery. My one year anniversary is Nov 28th.

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@gaylea1 I remember being in the hospital and they asked me what day it was, what month, who the president was. I knew nothing and asked how the heck did they expect me to know the date when there I was stuck in a hospital room with no outlet. When they asked me who the president was I said Bush, but it was Obama of course. The nurse thought maybe I had really liked Bush. One nurse complimented me on my complexion and asked what products I use. I didn't remember right away but by the time she came back to my room I had and told her, and then it became somewhat obvious she was just testing my memory. As soon as the HE episode ended though my memory was pretty normal.

You have had a very hard time. I hope the results of the biopsy are good, you deserve a big break.
JK

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@contentandwell

@gaylea1 I remember being in the hospital and they asked me what day it was, what month, who the president was. I knew nothing and asked how the heck did they expect me to know the date when there I was stuck in a hospital room with no outlet. When they asked me who the president was I said Bush, but it was Obama of course. The nurse thought maybe I had really liked Bush. One nurse complimented me on my complexion and asked what products I use. I didn't remember right away but by the time she came back to my room I had and told her, and then it became somewhat obvious she was just testing my memory. As soon as the HE episode ended though my memory was pretty normal.

You have had a very hard time. I hope the results of the biopsy are good, you deserve a big break.
JK

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@contentandwell isn't it strange how chemicals in our bodies can affect our brains so much. I'm sure it was as scary for you as it was for me. Even after they would tell me the month and date I would revert back to my original answer within a few hours. It was frustrating and I felt so foolish but I just couldn't get a string of thought together.

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@gaylea1

@contentandwell isn't it strange how chemicals in our bodies can affect our brains so much. I'm sure it was as scary for you as it was for me. Even after they would tell me the month and date I would revert back to my original answer within a few hours. It was frustrating and I felt so foolish but I just couldn't get a string of thought together.

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@gaylea1 You definitely had it worse than I did. As I've said, between episodes I was perfectly normal. I was driving myself to my sports club, shopping, everything was normal — until another episode happened. They are the worst. You and I can really rejoice in no longer having to deal with them. We are so fortunate to live in a time when we have been able to have successful transplants. Every day is a gift.
JK

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Only other transplant patients would understand this one…
A few nights ago I woke up from a bad dream, I was in a busy airport, flights were over booked and many of us were waiting for seat assignments. In my dream I anxiously waited for my name to be called so I could be assured a seat on the plane, my name sounded over the loud speaker and as I approached the desk complete panic washed over me as I realized I had forgotten to pack my anti-rejection meds. I woke up instantly with my heart racing. Ha, I guess I take this stuff seriously. LOL.

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@jolinda

Only other transplant patients would understand this one…
A few nights ago I woke up from a bad dream, I was in a busy airport, flights were over booked and many of us were waiting for seat assignments. In my dream I anxiously waited for my name to be called so I could be assured a seat on the plane, my name sounded over the loud speaker and as I approached the desk complete panic washed over me as I realized I had forgotten to pack my anti-rejection meds. I woke up instantly with my heart racing. Ha, I guess I take this stuff seriously. LOL.

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HAHAHA! I thought that was just me! I still freak out if I’m 5 minutes late. Veterans – does that ever go away?

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@jolinda

Only other transplant patients would understand this one…
A few nights ago I woke up from a bad dream, I was in a busy airport, flights were over booked and many of us were waiting for seat assignments. In my dream I anxiously waited for my name to be called so I could be assured a seat on the plane, my name sounded over the loud speaker and as I approached the desk complete panic washed over me as I realized I had forgotten to pack my anti-rejection meds. I woke up instantly with my heart racing. Ha, I guess I take this stuff seriously. LOL.

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This happens. What does a person do if medicines are lost during travel. Can they contact MAYO for a supply to hold them over? I know you will not get more at a pharmacy. Please someone answer this.

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@jerrynord

This happens. What does a person do if medicines are lost during travel. Can they contact MAYO for a supply to hold them over? I know you will not get more at a pharmacy. Please someone answer this.

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Maybe too late but NEVER let your MEDS away from your person!

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@jerrynord

This happens. What does a person do if medicines are lost during travel. Can they contact MAYO for a supply to hold them over? I know you will not get more at a pharmacy. Please someone answer this.

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Mayo can contact a pharmacy and order enough to tide you over. We needed to do this when there was a delay with our mail order needs.

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@jerrynord

This happens. What does a person do if medicines are lost during travel. Can they contact MAYO for a supply to hold them over? I know you will not get more at a pharmacy. Please someone answer this.

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Thankfully my scary experience was only a dream. Mayo Pharmacy makes getting meds easy. I have had meds shipped to an out-of-state address when my hubby and I stayed with my in laws in Florida. I even had Mayo send a prescription to me through Walgreens when I was driving through a random town in Kentucky while bringing my daughter to college after bloodwork showed abnormalities. I know Mayo Pharmacy also ships internationally too. If you really needed meds they would make sure you had them. The trick is NEVER EVER skipping ANY!

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@jodeej

Mayo can contact a pharmacy and order enough to tide you over. We needed to do this when there was a delay with our mail order needs.

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Thankyou. I have been close a couple of times.

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I haven't had that dream, and i haven't run out of meds, but I did have a '1st' mix-up a month ago!

After I took my 8AM immunosuppressant meds, I meant to take my mid morn vitamins, and I goofed, Big Time – I took my 8PM immunosuppressants instead. As soon as I swallowed, I realized what I had done, so I immediately called the Mayo Specialty Pharmacy and spoke to a pharmacist. He wanted to be absolutely certain to give me the best advice, so he told me he would call me back while assuring me that I would not pass out or anything in the meantime.
Later that afternoon, I got the information that I needed later after he had sent the information to my transplant coordinator who sent it to one of the physicians.
I did have to make the follow-up contact myself later on Friday afternoon due to no returned call from the transplant dept.
We veterans are still learning!

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Yes I can relate but I remember also how my transplant team was very insistent that I always carry my meds with me when traveling. But I also love my med app on my phone it's called Medisafe and besides always reminding me with an alarm and if im even slightly distracted I never hit taken until I have taken them. It also has an inventory section with refill reminders so I never run out. I highly recommend it because at least with me I can get distracted so easily.
Have a Blessed Day
Dana

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