Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

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

@rosemarya

@stella25, Awesome that he is ready and able to return to work! Have his co-workers seen him since his transplant? I would bet that he is a changed man with his new liver.
Will he have to be around people? In addition to the current Covis-19 safety precautions, will he be making any other physical adjustments to his work place such as his own physical limitations? Will he be able to work a regular schedule or will he be on reduced hours due to possible energy level?
This is exciting!

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@rosemarya OMG he looked like a boy when he went into the hospital. He was so thin & yellow, just a shadow of himself. Today he looks like the man he was meant to be!! Some of his coworkers had a surprise social-distance gathering for him in their office parking lot just after Christmas. They had a big basket of gifts for him (blanket, socks, sweatshirt, cocoa, popcorn, etc.). It was so sweet of them. They even had gifts for me & my husband just for taking good care of Dan:-) We have been humbled by the kindness of people. Dan works for a company that manufactures medical equipment. They are currently producing Covid-19 testing kits. It's already a sterile environment so that's a huge plus. He is a quality manager so he will be able to do much of his work at a desk for as long as necessary. It's a good company that he has been with for almost 10 years & is well liked & appreciated. They were super accommodating during his struggles with PSC. I have no doubt they will allow him to ease back into his work schedule. It is exciting! I know he is anxious to get outdoors & do some hiking. Hopefully soon:-)

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@rosemarya

@athenalee, You are absolutely correct! Take medications as directed. As an experienced 11 year recipient, I might add: Always check with your doctor before introducing any over-the-counter meds, supplements (natural or otherwise), or vitamins. Research is good as long as you use reputable sources. Be wary of sales promotions that claim to be reliable research.

In addition to taking immunosuppressant meds according to directions, it is extremely important to be aware of some of the side effects that can occur. Did you know that certain common foods can interact with immunosuppressant meds?
Here is an article from the Mayo Clinic staff where you can read more - Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/

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Yes, thank you. I’ve spend a lot of time reading medical journal articles so that I can best keep myself healthy. I’ve found it useful to at least have enough knowledge to know the questions to ask my providers. I was shocked and fascinated by all the research out there about food, herbs, herbal supplements, etc. that interfere with our medications and the mechanisms by which they interfere.

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@athenalee

Yes, thank you. I’ve spend a lot of time reading medical journal articles so that I can best keep myself healthy. I’ve found it useful to at least have enough knowledge to know the questions to ask my providers. I was shocked and fascinated by all the research out there about food, herbs, herbal supplements, etc. that interfere with our medications and the mechanisms by which they interfere.

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@athenalee,
Knowledge and self advocacy can't be beat!
I'm curious about how and when you developed this healthy habit. Have you always been this way, or was your liver/pre-transplant condition the reason for your interest?

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Transplant done October 2020. Transplant went well came home from hospital two mos.later. I lost a
Considerate amount of weight. Still working on building up my strength. My stomach area was very soft
And almost flat, very flat as I lay on my back. But two to threes ago my top belly is swollen and surgery site where the new liver is located is also swollen and tender,if I punch on the spot it hurts. I am going for a
MRI but that is not scheduled for another week, any advice

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@jackie421blfdgurl Welcome to Connect. Your abdomen is swollen and sore to the touch. Are you experiencing any other symptoms right now such as a fever, headache or dark urine? I think you should contact your physician right away. Even if the MRI is not until next week, you should see someone about it.

You will see that I moved your inquiry to the Liver Transplant Support Group so that you can get the support of other members who may have experienced the same thing.

Jackie, are you currently taking any medication? Did your medical team give you signs to look out for illness during your home recovery time?

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@jackie421blfdgurl

Transplant done October 2020. Transplant went well came home from hospital two mos.later. I lost a
Considerate amount of weight. Still working on building up my strength. My stomach area was very soft
And almost flat, very flat as I lay on my back. But two to threes ago my top belly is swollen and surgery site where the new liver is located is also swollen and tender,if I punch on the spot it hurts. I am going for a
MRI but that is not scheduled for another week, any advice

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@jackie421blfdgurl , We are at greater risk of an infection or other complication that can quickly develop. I don't want to frighten you, however, it is in your best interest talk to your physician or whoever is on duty.
Please check in here tomorrow and let me know what you found out.

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Thank you for your reply. This site looks like a real saver for me since the
Only one to talk to was my doctor and some of the liver team members. My
Hospital is in NY and I am in Jersey so
It takes some planning ahead. Thanks
Again. Jackie

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@amandaa

@jackie421blfdgurl Welcome to Connect. Your abdomen is swollen and sore to the touch. Are you experiencing any other symptoms right now such as a fever, headache or dark urine? I think you should contact your physician right away. Even if the MRI is not until next week, you should see someone about it.

You will see that I moved your inquiry to the Liver Transplant Support Group so that you can get the support of other members who may have experienced the same thing.

Jackie, are you currently taking any medication? Did your medical team give you signs to look out for illness during your home recovery time?

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My meds include fortress..prednisone..amlodipine..
Pantoprazole..tacrolimus.Was taking mycophenolate but dr. Cancelled that one in place of zortress. There were 8 others but my side effects were horrible so
Dr. Cut me back on number of pills I take. Thank you for your help very appreciated especially since I am new at this.

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@amandaa

@jackie421blfdgurl Welcome to Connect. Your abdomen is swollen and sore to the touch. Are you experiencing any other symptoms right now such as a fever, headache or dark urine? I think you should contact your physician right away. Even if the MRI is not until next week, you should see someone about it.

You will see that I moved your inquiry to the Liver Transplant Support Group so that you can get the support of other members who may have experienced the same thing.

Jackie, are you currently taking any medication? Did your medical team give you signs to look out for illness during your home recovery time?

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I posted a list of my meds, any input is appreciated

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@rosemarya

@jackie421blfdgurl , We are at greater risk of an infection or other complication that can quickly develop. I don't want to frighten you, however, it is in your best interest talk to your physician or whoever is on duty.
Please check in here tomorrow and let me know what you found out.

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Yes, please contact your liver transplant coordinator Monday am.

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