Liver transplant - Let's support each other

@kearly, Good Morning, and Welcome to Connect! This is a great question that many many transplant patients have asked. I felt so poorly prior to transplant that my hair was very low on my list of concerns. It makes me happy to know that your loved one is feeling good enough to consider this!
Here is discussion that I want to share with you. Read, and ask your question there so that others with a similar experience will see it in the Daily Digest and be able to reply.
- Can I color my hair after transplant?
https://connect.mayoclinic.org/discussion/hair-dye-after-transplant/

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Is your bride pending an evaluation for liver transplant? or Is your bride pending (waiting) for a liver transplant? What questions do you have as caregiver?

I really can't say a great deal about the waiting process. I was a 0.001 percent chance. A blessing of God, in that I got placed on the list at 3pm and got "the call" at 7 pm. and was out of surgery by noon the next day.
I had gone through all of the preliminary stuff for about 6 months. However, when I got bad, I got really bad and my MELD wentfrom mid 20's to 34 virtually over night. I am not a patient person so I am truly doubly blessed by not having to wait. I was teaching two weeks prior to transplant.
With that being said, I would advise anyone to trust the process. These people are the best in the world. Try to keep your strength and body mass (you will need it). Last but not least have a caregiver that you trust and is patient with you. You will need them and they will definately need patience with you.

Fatigue is common with transplants. Dr. Kenneth Miller at Tufts Medical Center said that it can go away but it also can last forever. He has several ways to help his patients with fatigue. Google him. I am two years post and I am still suffering from fatigue. I was always very active before my unexpected liver transplant but not anymore I don't go or do anything because being fatigue. I also have narcolepsy, my primary care doctor manages my narcolepsy and I have spoken to him numerous times. He refuses to help me he said that I need to talk to my transplant team. I discussed it with my liver specialist he said that with everything he has to do that he doesn't have the time. I agreed with him I told him that my primary care doctor should be the one that takes care of it. Now I have to find a new primary care doctor but that's okay I really didn't like him. Has anyone got any help for fatigue if so what was it? Thanks

Hi @tinamarie10, I thought I'd check in. How is your mom doing this week? Are the stomach issues subsiding? What has helped if anything?

@warrio202105, Welcome to Connect. I am sorry to read that you are being left on your own to deal with fatigue after your transplant. In reading that you are also affected with narcolepsy. I am not familiar with narcolepsy myself, but did have a student once who suffered with it. And he fell behind in class work. Once he received the diagnosis and the right treatment his life in the classroom changed dramatically.

Here is information about Narcolepsy from Mayo Clinic. I hope that it provides some helpful information.
https://www.mayoclinic.org/diseases-conditions/narcolepsy/diagnosis-treatment/drc-20375503

Have you ever seen a Sleep Specialist?

Yes and I also did a sleep study. I'm trying to find a doctor that can do virtual visits.

Hi. I'm post liver transplant 9 months. First time with a cold. Any tips anyone can offer? What works best? Doctors say no tea but I live on teas. No herbal they said. Please if anyone has tips I really need help from others. Got a fever on first night, I been taking Tylenol but stopped today. Any input would help. Thank you. Healing to everyone. Also when did everyone start feeling better? I still feel like a zombie.

Hi, @nrbecerril. I am sorry that you have caught a cold and hope that you are not feeling too miserable. I don't think that this is a 1st post-transplant event that you were looking forward too.
My first Tip is to tell you to stay hydrated and maintain your medication schedule. Another thing is to keep check of your temperature, and if it goes above 101 F (38.3 C) or if you have a lower fever that lasts for more than 2 days, you should call your transplant coordinator.
I don't know why your doctor said "No tea" , unless you are drinking an herbal of unusual blend. I have not heard this before. Maybe someone else has an idea and will share it here.
As a transplant recipient, you will be able to take certain over-the-counter medications for discomforts of a cold. You might have received a list from your team. My word of advice is to check with your transplant team before you take anything because they will know what could react with your transplant medications. Sometimes a pharmacist or even a PCP , ER and hospital personnel don't know the complexities related to a transplant.

So my advice is to stay hydrated, take your transplant meds, get rest, and if any questions that concern you - call your transplant team. When you are newly transplanted like you are, please do not hesitate to consult your team.
And one more thing from my experience - I discovered that since my transplant, it takes me longer to get over a cold than it did before my transplant.

I hope you feel better soon!

Since you mentioned that your doctor said ' "no tea", I am assuming that your transplant team knows of your cold. Is that correct? If they don't, then let them know. There are a lot of ugly viruses and bugs circulating at this time of the year. He/she might want you to get tested for flu, covid, or any number of tings that can affect a newly transplanted individual.
Not to frighten you, but sometimes a cold is not just a cold. I have made many middle of the night visits to the ER with high temperatures or other symptoms. Some were infections that needed treatment, and others were nothing. If in doubt, get it checked, even if it is middle of the night. 🤍

May I ask if you drink tea? If so, what kind? They said only black tea and that is all I'm allowed to take. The one tea I dislike. Something about messing with my anti rejection meds.