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I am now ACTIVE on UNOS for a liver transplant

Posted by @bink in Transplants, Oct 26, 2013

Hi All ,
I have been accepted and am now ACTIVE on UNOS as of Thursday for a liver transplant ! and wow i thought my feelings and emotions were out of wack before now they are running rampid ! i was told to get caught up on my sleep and as much rest as possible but i am finding it hard to do πŸ™ i cant turn off my mind and i am afraid i will miss my calling . Anyone else been through a liver transplant at Mayo in Jacksonville ??

Tags: liver transplants

Posted by @LeeAase, Oct 29, 2013

Maybe Kristin could offer some guidance. She works with our Transplant Center.

@keggebraaten

Posted by @keggebraaten, Oct 30, 2013

Hopefully some other patients will respond with their coping mechanisms that may be helpful for you. I have checked with our social work team and hopefully some of their recommendations will help you.

Keep your cell phone charged and any phone you are using in good working order. Transplant Centers typically have several contact numbers for you, including your relatives and friends, who will know how to reach you. If you aren't sure that they do, call them and give them extra numbers. (We have been known to even send relatives out in the dead of night to wake patients up for the call. πŸ™‚

Secondly, our social workers advice that you keep to a schedule each day as much as possible. Be sure you are getting up, eating, getting dressed, exercising as you are able, and keeping in contact with your friends/family. Some patients have found it helpful to connect with clergy or even a councelor to help them through the wait.

Just remember that it is important to maintain your health as much as you can so when you get that call you are strong and ready to report. I hope this information is helpful. Let me know if I can help further. Good luck to you while you wait for your gift of renewed life!

rosemarya

Posted by @rosemarya, Oct 30, 2013

I am happy that your testing was successful and you are on the active UNOS list.
Five years ago, I was going thru what you are experiencing. Sleep is difficult and the nights were long. But you can help yourself by learning to put you first. I mean, you must take care of you. Rest when you can. Take it easy and don't overdo it. Try to eliminate unnecessary activities and ask friends and family for help/you may have to be direct and say what you need for them to do. Also learn to accept help from others.
Do you have someone to talk to like family member, friend, minister? I had a girlfriend who is a nurse and when I was 'ready' to discuss it, she answered a lot of my personal hospital fears and concerns.
I know what you mean about the phone. My husband and I used to call each other to be sure the phone was still working!!
Rosemary
Liver/Kidney
Mayo (Rochester)

bink

Posted by @bink, Jan 30, 2014

Thank You Rosemary πŸ™‚ , I haven't been on in a while πŸ™ with the holidays and family and life i guess i just got busy . The Doctors at Mayo did prescribe me Trazadone and i don't take it often but i do take it if i have a few days of no or little sleep . Since i posted this i have been back to Mayo and GI Doctor for many labs and test's my last visit to Mayo was in January ~ My MELD score is now at 19 and i just went Monday and had another round of labs and am scheduled to return to Mayo on March 6th for a pre transplant return visit . I was severally malnutritioned when i first went there ( 93 lbs ) but had gotten weight up to 103 then got bronchitis and lost a few lbs but am slowly getting it back up there as they say it is critical i maintain my weight . The waiting seems to be harder than anything yet but i do have Family and Friends to talk with and a very good support team but i do still have my days of crying fits and being aggravated but for the most part i think i am holding up pretty well . i will keep you posted πŸ™‚
Casey

rosemarya

Posted by @rosemarya, Feb 1, 2014

I'm happy for you that you are moving along in the right direction.

rosemarya

Posted by @rosemarya, Feb 1, 2014

I do not know what happened to my full response. This is only the first sentence. I will re-respond later today. Rosemary

rosemarya

Posted by @rosemarya, Feb 24, 2014

It is good to hear that you are moning right along with your treatment. My advice is to keep on doing what the doc are telling you. I am proud to tell you it is worth it, even though it is hard at times.
Yes the waiting is difficult. I, too, cried a lot. My emotions were all ove the place, and I was afraid of the 'unknowing' part. I used to think I'm in control and I liked to maintain a schedule and plan (former school teacher). I think that is why it is so hard. My transplant team was always proactive and hopeful about my future, and that gave me the reassurance I (and my husband) needed.
Keep on taking care of you.
Rosemary

rosemarya

Posted by @rosemarya, Feb 24, 2014

The previous message should say 'moving right along'.
I think that staying positive is one of the best things you can do for yourself, even if the going gets tough or gets you down. Something that I did was to look for a bright spot each day. Then at night I would recall that event and give thanks and have some happy thoughts as I tried to sleep.
I hope you are having a good day.
Rosemary

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coastalgirl

Posted by @coastalgirl, Wed, Apr 6 at 2:00pm CST

Hi There. I was fortunate enough to have a kidney transplant at Mayo in Jacksonville, FL on 6-1-10. I had a live donor so I was lucky enough to have everything scheduled and didn't have to wait on a phone call so I can't imagine the anticipation you must be going through. I can tell you though that Mayo is phenomenal in all things that they do and completely has this process down to an art and I would just recommend that as much as you can to know that you are in excellent hands and you can rest in the fact that Mayo has all your medical needs under control. If you can try to focus on getting things lined up to be taken care of while you are out of pocket and getting your housing and caregiver arrangements made. It is great that you have reached out in this capacity because moral support can be key. If you have a local transplant support group that would be helpful for you as well. Best wishes to you and stay strong!! You are on the right path to a better life!!

Rosemary, Mentor likes this
colleenyoung

Posted by @colleenyoung, Wed, Apr 6 at 3:59pm CST

Hi @coastalgirl and welcome to Connect.
I moved this discussion thread to the Transplants group because I think people looking for first-hand transplant experiences will look there first. So amazing to have tips from someone who has "been there". Thank you.

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