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Treatments
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Treatments

I just realized this afternoon that most here on the forum are getting better, that are very few getting worse ,like me...I have put off scheduling the battery of test again....I did some rough calculations and with food and a motel for 3 days it is going to cost over 500.00I have not figured out where I can come up with it.I am thinking of calling the Mason's as my Grandfather held a high position when he was alive.I know they have me in the books as a relative of him.Don't have anything to sell and hace come up against a wall again.
I filed down a tooth with an emery board yesterday it was sharp and it kept cutting my tongue.Wish I could just pull them all out.BetterWIn the Lottery and get dental implants!In Mexico they are fairly cheap too!1000 bucks at TijuanaOh well the man that lives here would never agree to me going alone to TJ!Thinks that it's not safe anywhere down there ,hell I might have fun or something!The other day marked 16 years with him.Never married for financial reasons and now I don't think we would anyway.Nuff of this stuff,still can't believe that after all the things in my life I would end up on my own on this one.Me,I would go naked to help someone1
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If something falls through, just give me a call and I will do what I can.  I think Advocate is just scared for you, as am I.

Today is a new day, do what you can to make it a great one!

Jill
30 Comments Post a Comment
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Cree, most on the forum are not as sick as you are. Either they do not have Cirrhosis, or if they do, their livers are still compensated. They have the option of Hep C treatment, and because they can still treat, they can get rid of the virus and protect their livers from further damage or even reverse the damage in some cases. You are too sick to treat. Without a transplant, you'll die of liver failure or liver cancer. If you get sicker, and if you haven't completed the assessment/classes, you won't be listed, and you won't be transplanted. You'll get sicker and die.
Crossroadsec and Orphanedhawk were as sick as you. HectorSF, McKansas, hearinthekeys, and Magnum are as sick or sicker than you. Allison1965's hubby, Gary, was as sick as you. They all did or are doing what was needed to save their lives.
Advocate1955
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If you can get the money to make it to this side of the mountains, you can sleep on my couch and I can provide transportation.  That offer is still on the table.  I live 60 miles outside of Seattle, so could make sure you made it to appointments.  Difficult? Yes.  Doable? Absolutely.
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Wow Jillybean65-what a nice offer. Hope everything works out for Creewoman. You have a good heart.
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Hi Snow,
It is true...it may be hard without money but it is doable.
You need to get the tests done. Take Jillybean up on her generous offer. Have faith that things will fall into place. You cannot overcome the obstacles you are and will face if you don't take the neccessary steps forward and just keep plowing on.
It is all anyone can do and you must do it if you want to live.
Rooting for you Snow.
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Cree, maybe your family doesn't understand all of the facts about decompensated Cirrhosis: that without a transplant you won't live, that end stage liver disease can be a very painful and prolonged way to die, and that you will continue to get sicker and sicker with frequent life threatening emergency room visits and hospitalizations. I know that you understand these things, but perhaps you haven't fully accepted these things.  Some day, you will begin to have ascites, and you will have much more pain.  So much pain that you will find it difficult to move or to breathe.  Frightening for your daughter and frightening for you.  Some day, you will begin to have bleeds that will be scary and life threatening.  Scary for your daughter, scary for you.  Some day, you will begin to have HE, and you will become more and more disoriented, confused, and forgetful, which may cause a danger or a safety risk for.  Danger for your daughter, danger for you. Your daughter will begin to see you, the essence of you (your kind heart, your spirit) disappear gradually and painfully in front of her.
You have an offer from Jillybean65 for rides to and from the doctor, someone to attend the classes with you, and a place to stay each night.  Now you have to decide if you're going to take the chance to live or if you're going to wait and die.
Advocate1955
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When something happens it happens all at once,isn't that the way it usually works?
I just saw the friend of griz and I  that had asked about the Seattle ride.Well he will for a hundred for gas or so and he has family 10 minutes from the Seattle area where we can stay free,I just need to buy food for the trip there and back.I was whining that I had no support people and he said "you do now".He realizes this involves multiple app. and classes.I also just recieved my APP>TIMES and DATES in the mail today.Things look alot brighter!Who would have thought that some man I used to argue with has come through as a real friend?
Jillybean,thank you so much for your kind and generous offer .I was indeed going to take you up on your offer.I called you awhile back to give you my number,maybe you didn't get the message or I messed up and did'nt give it to you.In any case,thank you,thank you,thank you!!!I would love to meet you someday and give you a big hug!
I have been praying for 3 days just for some comfort and asking God to take care of me and he just did and more.This still is so heartbreaking that my kids have done this to me.I have to work hard not to think of how they could do this and sleep at night and tell them all that someday they will be sorry.Ecspecially one daughter that I thought I had become close to.
Thank you all for your concern I have been very depressed lately and have so many things I want to do.Most take a little money.R and I get to go see my Mom for 9 days in April.My Mom is on social security and has saved money for our tickets for 6 months!She is so afraid for me but there isn't a whole lot she can do to help.She is in North Dakota ,is 74 and lives too far from the Mayo clinic.It would be the same problem as here...trip money!
Now that I know my friend has family in the Seattle area this changes alot of things.All I have to now is make sure he is available for the app times and today he said lets get this thing done!OKAY I WILL!
Later Snow and Jilly thanks again!
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  I am praying for you, Snow.  I understand what you mean, about people in your family not seeming to care about your health situation. I had the same situation/experience. I was pretty amazed to realize that I was going to have to "save my own azz". But guess what, everything ended up working out, and I am thinking this may also happen for you, but you have to give it all you got~
  
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I must really sound like a loser to everyone.Seems many think I am not serious and that I will not do what needs to be done.Maybe i need to make myself clearer.the apps. had to be put off because they have one scheduled one week and then the bulk the next.I have kept in touch with the nurse coodinator and called her each time I had anything to update and asked that she document each of my calls so it is on record that I am slow on somethings yes but they are getting done.Have also been told by her that all of my local tests don't need to be completed before I am seen again by uwmc.By one miswritten statement i made I am told of all the horrors of esld.Thanks all but I really already knew this and I am depressed enough that I didn't need to hear it from anyone.All this because I am whining about finances.I have read and reread my post to try to understand the barrage of stuff I will call it .Wow  please tell me where I wrote that I intended to do nothing?
I really don't feel like I can be open about things anymore.Thank you all for your concern somehow I don't feel good about it.
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Avatar_f_tn
"I have put off scheduling the battery of test again...."
Here is what you wrote in your original post up above.
Advocate1955
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To put off is not the same to me as doing nothing.THEY do the scheduling anyway.I did not have to worry about it Tressa Macdonald did the apps dates forme.
Did I really deserve the upbraiding?No ,it was assumed that I was doing nothing or why would you tell me those things.I have thought what it would be like if I am not accepted if some condition is discovered that prevents me having a transplant.I don't need anyone to tell me how awful it could be.I don't need anyone to assume things either.You didn't even ask me first.Thank you for your generosity and kindness.       Snow
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Your perspective is distorted if you think I was upbraiding you. I didn't assume anything, I responded to your original statement which said you were putting off the assessments again. I was hopeful that you could complete the assessments and be listed for a TP before you have more complications, rather than after, making the assessments more difficult. It is your decision.
Advocate1955
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Upbraid-wrong word yes."It is your decision" of course it is.Have other thoughts but at this point I'll just keep quiet and have learned a lesson.Wow I did not deserve this today!
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I don't know what just happened here with Advocate but I honestly don't think she deserved those responses from you whatsoever.  Wasn't it Advocate who spoke to you on the phone to help make arrangements to make it to your Dr's appt?  Wasn't it Advocate who picked you up and made sure you got to your Dr's appt?  Wasn't it Advocate who waited for you while you spoke to the Dr?  Wasn't it Advocate who made sure you made it home ok?  Wasn't it Advocate who went out of her way to help YOU?

You did say that you "put off a batter of tests again".  By saying that you put yourself out there, with the forum, and are basically asking for responses to your comments.  What did you expect?  People actually do care for you and that is why they responded the way they did.  Sometimes being brief and to the point is much more effective than beating around the bush.

I think you owe Advocate a sincere apology because she definitely did not deserve that.

Jules
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I think that 99% of the time when someone responds to a post it is out of genuine caring and concern.  I believe that Advocate was conveying that she understands your condition and circumstances and that she thinks your life is worth fighting for... we all think so!!  Those words were meant to be encouraging and not judgmental!!

Re-read the post...       Jillybean, Advocate, Bo, Rivil, "Friend of Griz"... seems like they all want to help!!
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When we feel bad it is easy to misunderstand others. It is easy to think people don't love you when the words they say are not comforting and reassuring. I don't think anyone doubts your intelligence or your goodness.
The assumptions that you think people here have made are based on your own words. You are in a difficult situation with little support.
However, when we tell you that you must do follow through after you say you have cancelled or postponed the necessary tests, it comes from a place of concern, Snow. Advocate is telling you it will only get worse, we have seconded that as a truth not to horrify you but to let you know that it is on you to do what you have to do. It is unfair and it is sad, but that is the way it is. None of us knows how alone we really are until our health fails us.
Try not to take offense, these strong words are not a judgment but rather they come from a place of deep concern .
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My sincerest apologgies and thank you again Advocate.
To any who doubt that I do not know the horrors of ESLD .I do a dear friend of mine had it.In the end was in a coma.Please do me a favor and don't tell me about the sickness again,don't you think about it everyday?I remember my friend.
Advovate please accept my apologies!
Snow
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Advocate has always been a very good, very decent poster.  Try not to take offense and to just take advice. That is the point of this forum - no one here is a doctor.
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Thanks all but I really already knew this and I am depressed enough that I didn't need to hear it from anyone."

PS Perhaps you did need to hear this. Sometimes the things we REALLY dont want to hear are the things we NEED to hear.
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If something falls through, just give me a call and I will do what I can.  I think Advocate is just scared for you, as am I.

Today is a new day, do what you can to make it a great one!

Jill
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3211536_tn?1359389169
Thank you I will remember that.I just spoke to my friend and he is still okay with the trip and accompanying me to the apps.I just called my transplant coodinator also,just to verify an appointment time that seemed wrong.Good thing too because it was for April not March for the Surgeon App.
So I have yet to ask my friend about the April app.I am sure he will be okay with that also.He has lots of family in the area.
Thanks again for the offer :)  .
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Just let me know.  :)
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After my transplant my surgeon said I'd been living on 8% of my liver and only had weeks left to live.
April 15th will be my 4 year post transplant anniversary.

How did I make it to be here now and hep C free? I simply put one foot in front of the other and when I felt sad, looked up at the big beautiful sky.

Hang in there. If I could do it, you can too :)
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I love my daughter .There are days she has that are scary and emotion filled.She is trying to grow up.If I weren't around for her ,her life would be so difficult.She is one of the reasons I do keep going.
Yesterday here someone said the saying"don't place the keys to your happiness in someone else's pocket.I had forgotten that .I tell bored kids all the time "bored people don't have an imagination or are not using it.I am no better, forgetting that I will make myself happy again and no one else can do the job for me.This disease has stolen so much from me that I shouldn't allow unthinking people to bother me.I used to be so positive. I am still in here somewhere,my self portrait is still here just been covered over with some awful colors.
To get out of myself and do something to make a difference in this world I write and send cards to a lady on death-row in the gainesville,texas women'sprison.She has quite a story and if I lived anywhere closer I would go see her all the time.She has been on deathrow since 1996 and still hasn't given up hope.
Was put on Lactulose today I picked up the rx.I had complained of the effects of added protein.I was going to call to ask why no one had let me know I had High ammonia llevels and then I read the rx fact sheet.Nad it helps PREVENT encephalopathy.Okay so I do need it!
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Sounds like you're trying to get there.  Please accept help
from your friends, including advocate and Jilly.  I have met some
pretty gosh darn amazing people here who helped me tremendously.

Glad you're taking Lactulose, it will help you. All my best and
good luck to you

Elaine
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Unthinking people was directed at  some of my family members Not anyone on the forum.
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  Yes, we are just worried, Snow. Magnum has just updated us, on his ascites problems, so the fact that your lactulose is just preventitive,is a good thing.
   Preventitve medicine is always the preferable route~ just try to take it one day at a time, and I hope today will be a good one for you~
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I hope it's preventative for me.No one has told me that I have elevated ammonia levels.I have been doing fantasic with edema issues that I had battled in my feet and legs.It is mostly gone.I have not even been wearing support stocking unless I am going to do alot of cooking!It feels great to put on my skinny jeans and a T and my work boots!it makes me feel young again!Now a little sun and I might recognize myself again.I even have some new clothes ,I went shopping on the daughter's bedroom floor and I scored some really cute stuff she hates.Love the t's with lave on the neckline and the zebra tennies!!Ha! The sun is shining here today with a wopping 43 degrees!Winter heat wave.
Baby goats around the 1st week of March.One of the Does was given to me wild and still doesn't care for anybody,I hope she has no complications.Because of her crummy attitude she will pass it on to her babies and the only choice is to bottle feed and then spend the day with Mom.
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Lace not lave.Why don't I proop before I posr?Proof before I post?Did it again!Wow!
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  Oh, hahaa, I had to login, to answer this one :)  Yeah, I love to "shop" my daughters' left-overs also, always brand-new, etc.  I have skinny jeans, and racey-tee's...stuff I would never take the timeout, to try on, much less buy myself.  It's funny how I just lost my urge to dress nice, after kid # four~
   And dont worry apbout poop-reading, heh..a lactulose joke- sometimes it just helpd to laugh a little   frraappp
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Have fun!!
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