Newly (liver) transplanted…
So glad I performed a search for “Transplant Support Group.” I’m newly transplanted…two months and know there is lots to consider moving forward.
Is anyone aware of therapists who specialize in issues related to transplants? My transplant happened so quickly (due to my MELD score) and my head is still spinning from it. I’m also looking for online meetings with a support group as well…
Interested in more discussions like this? Go to the Transplants Support Group.
@jonepotter, Congratulations on your new transplant! Wow! Two months and ready to establish a healthy routine for your new liver. I'm happy for you and I welcome you to Connect, Mayo's online patient support community.
I wish I would have had Mayo Connect in 2009 when I received my liver and kidney transplant, but Mayo Connect did not exist until 2011. I was searching, like you searched, for a place to talk with other recipients. In central Kentucky, where I live, there was no such group, and after returning home from my transplant at Mayo Rochester, I felt alone and wanted to meet someone like me, who had a transplant. I think you 'get' it!
You asked about a therapist to help you deal with the dizzying quick turn around, and I would suggest that you talk to your transplant team for a referral. Dealing with a sudden life changing event does have a traumatic effect on your mind. My son, not a recipient, was connected to a counselor who specialized in traumatic injuries due to an accident/spinal cord injury. It was most beneficial for him.
As an online support group, here are some support discussions that I have selected form you, with your recent transplant.
-Living Life after your Transplant
-Snapshots of hope: Life on the other side of transplant
-Liver transplant – Let's support each other
@jonepotter, Feel free to scroll through the Transplant discussion titles, and you will find groups about medication, hair loss, food safety, dietary needs, exercise, etc. As a member, you can choose to read, select a reaction, and make a comment. HINT: if you adress a comment or question to a particular individual, include the member's @name like I used your @jonepotter .
What would you like to share about your transplant experience ?
Congrats Jackpot on your recent transplant & welcome to this wonderful community. If your transplant was performed at one of the Mayo Clinic facilities, there is a tremendous weekly support group for Mayo patients called the Second Chance Support Group. The group meets weekly via Zoom and is a great way to meet and interact with other liver/kidney transplant patients – both pre & post transplant.
Congratulations on your new life, it’s a lot to take in. You will find some very kind folks here. They have been so helpful to me. 2months I know you are going thru a lot right now. Try and be patient w/yourself take a day at a time.
💚 Good Luck💚
Congratulations on your new liver transplant and your new life! I had my transplant in May, 1993, almost 30 years ago!! I was very blessed to get a new liver and a chance to watch my children grow up, get married and have children:).
Things were very different back then, they told me they had no clue how long a new liver would last… My doctors were Great and I’ve had very few problems. Someone told me that I wouldn’t feel normal for a year! That was hard to believe but it was spot on back then..
Here are a few thing I learned that helped me survive these last 30 years:
•Be your own Advocate – no one cares more about your health than you do. Learn everything you can about your meds, all of the different blood test etc.
•Ask questions when something doesn’t seem or feel right. The transplant doctors and coordinators are great but they have so many patients and they can miss things on your blood test etc.
• Keep a copy of your blood test results so you can compare them. (If my allergies were bad, then my numbers were bad too! Same with stress.).
• Patience is one thing that you will need every day. (Prednisone made me crazy til I got off of it)
•Also, get a pharmacist that’s very knowledgeable about all of the drugs you take… they will help make sure all of your meds are compatible:) try to make sure your pharmacist will be there for a while (I use grocery store pharmacies, they don’t usually have different pharmacist every few days)
•Walk every day, it helps clear your head and exercise is good for you!!
•Take all your meds on time every day & do some research on the meds you take. I found different vitamins helped some meds work better.
•Don’t take any herbs, they can cause lots of problems !
•Accept the fact that your liver can reject, treat it good and learn about your body and when things aren’t right.
•Live your life one day at a time, be happy and thank God for your second chance and all the wonderful things He has given us.
Sorry this is so long and I’m sure I left things out. Just enjoy your new life with your new liver❤️
Thank you so much for your enlightening advice. Straight from the horse's mouth. I hope you don't mind a few questions.
1. Are you still on immunosuppressants, specifically tacrolimus? If so, for how long continuously?
2. In these 30 years have you ever had an episode of 'rejection' (even a mild one)?
3. How frequent do you do your labs now?
I imagine that your initial transplant team members have either long retired or are on the verge of retirement. You must have gone through several transplant follow up doctors/coordinators.
I will celebrate my first year after liver transplant in this month.
Thanks again & congratulations for three decades of post transplant. You are truly an inspiration to all of us.
I replied to your questions but think I did it wrong ? See if you can find
your reply to me, I answered all your questions in bold where each question
was asked… please let me know and I’ll be glad to find it and answer your
questions the correct way!
Hi @ehs6855 😊
It's very nice to meet you! I think @rosemarya will be able to delete all your personal information so it does not appear on the public forum. (You can always PM private message on this website if you want to share personal data).
To reply to @rgb3547 you will not be able to edit her post with your answers.
Just hit the reply button or start a new comment with your answers. (Sometimes I jot down all the questions on paper to make sure I have them all when I start a new post comment to answer a list of questions!) I hope this helps and feel free to ask for help anytime. We are all figuring this out together! 😊
@hello1234 – I see that you are up early this morning – and have shared some terrific "how to" information. I am going to take this opportunity to add further information here for all members. We can all use a refresher as technology changes so quickly.
I hope this is helpful for everyone as we continue to carry on conversations with each other.
-For step-by-step instructions
How to Use Connect:
Click the blue link for immediate access
@ehs6855 – Let me know if I can be of help. I want top hear more about your 30 years of experience. 🤍
Thanks a lot for your time & efforts to answer my questions. You certainly have done your best BUT I did not, at least on my end, receive your response. I see nothing here. I think your message fell victim to some unintentional editing error by the moderators. I appeal to the moderators to investigate the reason why @ehs6855's response was lost. If the message contained some personal information surely that particular info. must be removed & it is important that it is done asap. But why throw the baby with the water?!