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appointment to the mayo

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Posted 6/23/2009 7:44 PM (GMT 0)
i have been so sick these past few weeks but doing better now. im excited about my app. to the mayo, they are so nice and helpful. i am trying to compile a list of questions as i want to get as much info as i can. so if anyone knows of something to ask that might get over looked the info will be ever so welcome.

     There are so many of us going threw pain and stress over loved ones or self. esld im finding will certainly keep you humbled. i want to say as bad as it gets that i have been inspired by this. i would have never known how strong my childern can be or how supporting to each other. something i didnt see before. or my friends that realy will drop everything in a second to do the smallest of things for me even without me asking. i have always been close to god, without my beleif i could never haved survived. my prayers for you all.

Posted 6/23/2009 10:18 PM (GMT 0)

Hi, Baba.  I really love Mayo myself.  They are very caring and respectful, as well as excellent.  Are you going to be evaluated for transplant there?  I notice in one of your posts you had asked how you could lower bilirubin.  That would be something to ask them.  In my surgeries there, they have been very good about explaining everything.  So I really can't think of anything to ask.  So much is based on how you do as an individual.  The MELD score is used for the transplant list.  The higher the MELD, the higher you will be on the list.  It is found by combining the numbers of your bilirubin, creatinine, and INR.  If you are getting dialysis, that increases the score.  There are a couple of other criteria for increasing the score, also.

When is your appt.?  I wish you all the best with it.  Let us know what you find out.

Hugs,

Connie

Posted 6/23/2009 10:40 PM (GMT 0)
connie, thanks for your reply my app is in aug i will be amitted aug 17. i am probly not ever going to get on a transplant list. 30 years ago i had 9 stomach surgeries and the scar tissue is so bad there is not much hope for a trans plant. but i feel that if i can get good care i can realy get some more miles out of this. of coarse i wish i could get better control over the bad days. my bilirubin is waanting to climb and i fight it daily,living in alaska makes it tough right now we have about 19 hrs of day light but it has rained for 2 weeks. now i put on my rain coat and go out side they say the light is what i need .
funny how things turn out, i have a foster son who now is 31 lives in germany. well turns out he has a cousin that is a liver specialist at the mayo . sorry im having a day of thinking in circles. thanks so much for the suport, as much as i love my family and friends it is nice to know people that can realy understand what you feel. once i learned hoe to read this sight i have learned so much and my family has learned so much hope this help and support will always be here .
now about you i read this morning that you are looking at a hip replacement. a close friend of mine just had one maaybe 5 months ago at mich. state. he was nearly in a wheel chair. he and his wife will be here in to days to go out on the ocean with me. he is going with me (to watch me) take my last skydive till i get back from the mayo. his life is so much better. my hope and prayers is for you to have as good of success or better.
thanks again
Posted 6/24/2009 3:22 AM (GMT 0)

Baba, thanks for the good wishes, but I've already had bilateral hip replacements and 2 revisions on the left.  Now I need a revision on the rt. one.  The last revision was done by a Mayo orthopedic surgeon, who did a marvelous job...so he will also do the rt. revision, God willing.  It is dislocating on me every day, so it has to be done, but probably not until the end of Aug.

I'm sorry you are not a transplant candidate.  What are you being admitted for on Aug. 17th?  You have a lot more nerve than I do, going skydiving!  That's one thing I have no desire to ever try, although I did enjoy parasailing in the Bahamas about 14 yrs. ago.

Hugs,

Connie

Posted 6/24/2009 3:53 AM (GMT 0)
i am going to try to get into a clinical trial. guess they have one they think would help me im just going to find out. tell you what jumping out of an airplane dosent bother me at all but now that i have my app at the mayo im a big bag of nerves. i hope that is normal. i haved traveled many places and alot by myself, for the first time ever im worried about things like is the hotel that i can afford being safe. it is making me just anxious.
what mayo will you be at if you dont mind me asking. im still praying that this replacement is going to be the best ever.
Posted 6/24/2009 5:21 AM (GMT 0)

Thanks, Rick, and the tape recorder is a good suggestion.

Baba, I will be at Mayo Jacksonville (FL.)  It's only about 15 min. from where I now live, and after I move (hopefully early Aug.), I will be even closer.  After the next revision, I should be good until I die, as far as my hips.

Now if they can just come up with a better treatment for hep C, I'll be set.  smilewinkgrin

Hugs,

Connie

Posted 6/24/2009 5:44 AM (GMT 0)
tape recorder is the best of ideas seeing how my brain remembers big these days or not at all. i would have never thought of that.i also have a sister like friend that is an oncology nurse that is going to be with me some of the time and she knows what to ask and what the answer means. im starting to think that i am going to have to ask my doc for something for the jitters even a quick trip to the lake did nt help. fishing has always relaxed me. gosh i hope this is normal. thanks for all the prayers and support . i will pray for better treatment for hepc. tomorrow could be the day
Posted 6/24/2009 1:32 PM (GMT 0)
Hi, Baba,

If you learn anything about the bilirubin, please post and let us know.  My husband's bilirubin has been resting at 29.7 for the last few days and the doctors are perplexed as to why it is not dropping and what it means.  Are you in the clinical studies at Mayo?

Posted 6/24/2009 3:46 PM (GMT 0)
bessylu, i am not in the clinical studies yet. that is big part of me goingto the mayo. that and i have about a hundred questions i want answers to.
about the bilirubin, mine is constantly going up but lucky for me it will go down but it hasnt been under 17 since i was diagnosed. i will share this with you .
feb a year my father in law for 32 years passed away. he was rasied and beleived in christain science. well my husband and i did not handle his death well at all. i for the first time in my life started drinking. i did not know that my liver was sick . but in october i nearly died. of coarse i havent had a drink and will never again. anyway my dads C.S. practioner counseled me for a while. thru their beliefs and what my ole doc says. i beleive that as my body recovers from the months of drinking it will be able to deal with things like the bilirubin. stopping drinking is a big start but it takes time for the body to heal itself. my liver is the ovious damage but all of my body is in recovery.i beleive that even though i am in the late stages of esld things do get better . and i can tell you that the body can take quite a bit and recover. and god bless you i know about the side of the fence you are on it is hard to be strong and in charge when your heart is breaking, your world is changing, it certainly dosent help to have a liver problem as everyone with i have talked to that has this diease we all have differant issues. like my big problem is bilirubin, for some it is fluid or sleeping. even worse it changes constantly. each time i learn something new at the mayo i will post it. please take care of your self.your needs are as important as your husbands. and i will keep you in my thoughts and prayers.
Posted 6/24/2009 3:55 PM (GMT 0)
rick , im glad to meet someone else that loves fishing. i get to go halibut fishing june 30 . will be my only time this year. but it will be so mentaly healing for me. and god willing when im at the mayo i will get a chance to fish that area here there is lots of good fishing. keep gardening that is good for you in so many ways . good luck on your blood test. extra prayer for you today
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