Want to connect with other post liver transplant patients
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Hi @swordfish, I am a liver/kidney recipient. Welcome to Mayo Connect! I would like to invite you to check out some of the discussions in the transplant group. Feel free to join a discussion, or start a new one. I’ll be looking forward to welcoming you in Transplant discussions. Rosemary, mentor
HI ROSEMARY AND THANKYOU, I’M 53 ,HAD LIVER TRX. AUG.4,2016, WAS IN VRY BAD SHAPE,FOR 7 MNTHS . I’VE BEEN AT MY SISTERS SINCE DISCHRGEAUG.8.HAVING SOME GOOD DAYS N SOME BAD.HAVE ANXIETY ATTACKS,PAIN.THANKU FOR RESPONDING,BLESS YOU
swordfish Congratulations!!! 3 weeks post transplant, that is amazing. Thank you for sharing this wonderful news! How are you feeling? That was a really short hospital stay; mine was 6 days and we thought that was short! I hope that you are healing and beginning to move toward a normal life. This is a little more difficult, I’m sure, since you were in bad shape for 7 months. I transplanted a liver and kidney in 2009. I, too, was very sick for months beforehand. I hope that you begin to have more good days than bad days. Be patient, and give your body time to heal. Allow yourself time to rest – don’t overdo it. Are your anxiety attacks part of your medical history, or are they new since your transplant? What about the pain? Have you spoken to your transplant nurse or doctor about this? Rosemary
IN THE BEGINNINNG THEY ALL SAID I WAS DOING TOO MUCH,SO I’VE SLOWED DWN. NOW.I HAVE BEEN DEALING WTH ANXIETY PROBLM A WHILE BUT SEEMS TO EFFECT ME MORESO NOW,I FIND MYSELF DWELLING ON A FOREIGN ORGAN IN. ME,GET SCARED OR PANIC . I’M TRYING TO GET MENTAL HEALTH. TO HELP,BUT OVERALL IT’S GREAT TO BE ALIVE N HOPING TO SEE MY 15YR.OLD DAUGHTER. OFF TO COLLEGE ONE DAY! GODWILLIING
After my transplant, I followed the advice of a very dear friend. Every day I took a nap from 12 – 3 PM. Even if I did not sleep, I rested. My husband handled all phone calls and interruptions. Those 3 hours were a blessing. Even today, after 7 years, I get tired when I overdo it. And then I make sure to take a day off and rest. I urge you to talk to your transplant to see if your new medications are having any extra influence on your mental situation. Your transplant team could direct you on getting some mental health care related to all of this, too. We are strong meds and sometimes the doses need to be adjusted.
I remember having the feelings you describe about living with a foreign organ inside; but I had those before my transplant. I feared getting a foreign organ put inside me. I can assure you that it will pass. Try thinking about your future with a healthy liver, and all the things that you will be doing, including being at your daughters graduation! What are some things that you look forward to doing, that you couldn’t before transplant? Rosemary
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REALY APPRECIATE YOUR INPUT,THANKU, I’VE BEEN TRYING TO REACH OTHERS TO SEEIF THEESE WORRIES,PAINS R NORMAL.LOOKING FORWARD TO CONVERSING WTH U SOMEMORE,THANKU EMMETT
@swordfish, I saw your reply on another discussion that you are in the hospital. I am sorry that you are having a difficult time. You have had to endure a lot of difficulties during this 1st year after your transplant. I have been wondering about you, since I have not seen any messages from you. I hope that you will respond to easily to treatment. Is this painful for you?
I’m sending prayers in your direction. Rosemary.
@swordfish, Emmett, I hope that you are getting better. I want you to think of this as a GET WELL CARD.
@swordfish, I was requested to visit with you here by @rosemarya. I have more anxiety since my transplant in 2011. This is new for me, as I have a deep faith that allows me to turn my problems over. I know that none of my worrying or fearing a possible future event is not going to have any effect upon whether or not it happens, but the thoughts still creep in, right? For me also the first year was difficult. I was re-hospitalized 9 times. I remember focusing on just getting through each day, taking my meds, and eating. I made no demands on myself beyond the basics. I was grateful to be alive, able to feed and dress myself. I used a walker and wheelchair quite a lot, even in my house. I thought it was so bazaar that I was so weak I could not use the footrest on my recliner. Me, the pack mule for travelling and shopping. I lost a great deal of independence, needing assistance at times to bathe and requiring someone to drive me anywhere I needed to go. I think it is interesting the different things that people are concerned about. I missed my job travelling all over the state, and driving 200 miles in a day for hours of shopping. I missed doing the grocery shopping and keeping my kitchen organized. And here we are six years later and my kitchen is still disorganized! haha I hope you find a way to come to terms with your thoughts of a foreign organ in your body. I did not have that issue, but after I met my donor’s father I felt a responsibility to care for myself and this organ to the best of my ability. After all, I am here because she is not. I do believe things will improve for you. Right now you just need to focus on your healing. Blessings to you.
My transplant was June 2021. I received the transplant rather quickly and don’t remember much till about a week after. I had NASH. Prior to surgery I had veracies (always spell that wrong) several times admitted to the hospital. The last time was bad lots of blood but the local hospital would not touch me, after a week of waiting I was transferred. My new liver is working good but I am having issues with protein, fluid and my red blood cells. Recently my fluid was so bad I hand chronic heart failure it was overworking my heart and a valve was not closing. So I had to reduce one of the medications sirolimous and go back on lacesicks and increase the tacorlimous. After 2 1/2 weeks I was released less 52 lbs. Now I am skin and bones and still have more fluid although I feel much better and still on oxygen but not as much.I guess my question is anyone else have these problems 8 months post surgery. I also have a round bump on my right side in my abdomen they tell me it is blood but it is dry and my body will absorb it, it is about 3”w x 2”l and on the surface that I can tell 1 1/2” deep. Only bothers me off and on.
Hi @marniek and welcome to Mayo Clinic Connect. I am sorry to hear that you are having issues after your transplant. You will see that I moved your post to a discussion talking to New post liver patients. I did this so you can connect with others like @2011panc.
What has your surgeon said that you need to do? Did they give you after care for protein and such?
HI, I am a post liver transplant patient. I got the surgery in 2008. Welcome
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