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I am now ACTIVE on UNOS for a liver transplant
Transplants | Last Active: Apr 6, 2016 | Replies (10)Comment receiving replies
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)
Replies to "I am happy that your testing was successful and you are on the active UNOS list...."
I'm happy for you that you are moving along in the right direction.
I do not know what happened to my full response. This is only the first sentence. I will re-respond later today. Rosemary
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
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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Thank You Rosemary 🙂 , I haven't been on in a while 🙁 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 🙂
Casey