Planes-Busses-Automobiles and Waiting Waiting Waiting

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Date Joined Nov 2007
Total Posts : 460
   Posted 4/15/2009 12:51 AM (GMT -7)   
shakehead   shakehead  Me again gripe, update. Went to Mayo for my 6 mo. exam. on Monday and Tuesday left at 3:00am by auto for our hourly drive to catch a plane to Arizona. Rented a car to drive around to different clinics. Had a full day of waiting ,exams ,tests and meeting with different DR. or RN's. Tuesday same thing. Ending with meeting on results. CT scan no change, Pill cam showed no varcies, No acites, No cancer, Potassium is back to normal , platelets have never been this good,MELD still holding 9or10 Every thing else was great. Except Ammonia, When I was in the hospital a week and a half ago after my accident. Which has not been resolved yet. Still have not had an adjuster come look at it, We have it in our garadge. Otherwise we would have had to pay storage. And is the reason we had to fly. Anyway at that time my ammonia was 86 now it is 158. Which she said could be caused by the stress of the accident and the loss of my brother along with the stress of tests and travel.
Asked if I could cut down to 1 year exams , She said no because I would have to be put on an inactive list and since I have cryptogenic liver disease. There is no telling wether I will be stable for many years or get really ill within hours. 'they don't have any Idea what the cause is or what the outcome will be. In all honesty having a transplant does'nt sound like a great dea for me. I only go along with all this for my family. I think I would like to be with Daniella dropping down snowflake shaped roses. My husband is great but he just cant undestand the encepolopathy part or the reAllly tired part.He had very long legs and a long stride. So I feel as if im jogging behind
I fell asleep while posting so I was unable to ask how everyone is doing. Read post about Daniella , made me cry, can't imagine loosing a child. I only have one he is 30 now . But he will always be my baby. His daughter age7 , and son age4 will always be my babies too. All though the little one says( grandma I'm a big boy). I love them all dearly but it is difficult to deal with this disease when everyone sees you and thinks you fine. Yet inside your falling apart. No one except the ones who deal with it have any idea what it's like.
THANKS TO ALL OF YOU.   I really appreaciate your being there.   my prayers go out to all     june

Post Edited (june17) : 4/16/2009 12:56:02 AM (GMT-6)

Pink Grandma
Veteran Member

Date Joined Nov 2006
Total Posts : 2445
   Posted 4/15/2009 6:14 AM (GMT -7)   
Hi June, I know how exhausting going to and through all transplant prerequisites is for the caregiver. It must be a whole lot worse for the patient. You get to the point that you want your numbers to be bad so that your meld score can go up. What's wrong with that picture? Everyone should be happy when their numbers are good.........but with the way they have the process for the transplant it changes everyone's thinking.

I know it's tough June but please hang in'll see that light at the end of the tunnel.

Take care..........thoughts and prayers............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 4/15/2009 2:15 PM (GMT -7)   

June, I understand the fatigue for sure!  Those 2-day visits just totally wipe me out...and I go to Mayo which is about 4 miles from where I live!  They have me on a 3-4 month checkup.  My labs and CT last week were good, so I'm hoping maybe we can go to 6 mos.  In my case, they are looking for cancer recurrence.

Next time around, I'd ask the hepatologist to explain to your husband the implications of the fatigue and encephalopathy in language he might understand.  Unless you've gone through it, I don't think many people can really understand, but perhaps they can try with your husband.

Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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