devastated

[zuni]

How do Loving Caring Parents of a single 44 year old Daughter with Cirrhosis and Hep c cope when after doing everything  possible to help that Daughter ,with hours spent in Emergency worried sick about her condition and the dreadfull pain she was in for months on end ,only to find out our Daughter had been secretly and deliberatly taking three times the doses of Spirolactone and Frusamide she was prescribed simply because she wants to be free of the fluid on her legs ,now she has told us as she has been detained in Hospital,after presenting with severe pains and much confusion ,she has been told time and time again to cut down the salt intake ,when she has stayed over at home for a few days I have been serving her nutritious meals to cut down the salt ,and cooked liters of good home made soup to give a an easy way of taking in vit minerals and no added salt with pulses for protien ,only to be told it looks like spew and she has been eating Hungry Jacks,pizza,Lasagne, and two minute noodles ,and I suspect she probably thought she could just up the meds and they would take care of the fluid ,she has all the info about her condition but isnt interested ,how do do keep on helping when your so hurt ,her figure is her main concern and we cannot even express our hurt or she snaps at us ,is there any point hanging in there only to find weve been conned again ,and spent needles hours in Hospital waitng rooms ,her Dad is 78years old I am 69 were so wearry and tired ,any suggestions would be appreaciated thank you

[nanasluv]

Hi I don't have a liver issues as I once thought I migh have but I went and saw 2 doctors and they both ran liver blood tests on me and everything came back normal. Through all the worrying God was with me and I prayed to him desperately for my health and as far as I've been told by doctors I'm in fairly good health. It was just I was expierencing weird symptoms and thought it was related to my liver but  it was not I had 2 blood panels done on me in 1 year just to be on the safe side. I know God has held my hand through alot of my issues and has also blessed me greatly lately. My point is keep trusing God for answers to your problems conering your daughter. Your daughter in a sense is a walking miracle considering she was suppose to pass on last December and God still has her here for a reason. Try and speak to her about God and his love and how his guidance can make her path smoother in this life. AS for my mom we had our issues mainly becuase me and my sister were real rebellious at one point in our life which I'm not proud of but just being honest. We were at that age teen years to early twenties where we thought we knew everything and just wanted to do our own thing even though my mom raised us better then that in a Christian home. She raised us with high values and we went astray somewhat but I always tried to maintain a relationship with God because I know I can't live my life without him. My mom was a great Christian lady and was literally like an angel from Heaven she had no vices whatsoever, did not cuss and lived a Christian life till the end of her life literally. Even with a brain tumor her main concern was always for others and not for herself. She definitly taught me alot and because of her and God I always count on God for everything in my life. I am very thankful to God for all the good he has done in my life. I know life seems hard sometimes and it seems our trials will last forever but truth is God put us on this earth for a reason and if we make him our main support he will reveal his love and compassion for us. When I lost my mom I felt like I just wanted to die myself and had a great support system from my church and friends. I was able to hold on and be strong because of God and here I am today doing good. I know my mom is in heaven with God and that brings me great peace when I think about her. Just be patient with your daughter and try and enojoy her as much as you can considering her health issues. She is right now suffering everyday and all you can do is be the great parents that you are and put her in God's hands. God can change any situation if you only believe and trust him fully. I'm sure your daughter does appreciate all you do for her she is just a bitter person right now and needs God in her life more then ever. Thanks for your good wishes. I will continue to pray for you and your family. God bless you and your family and may he hold your hands through it all and bring peace and comfort. Also wanted to say you remind me alot of my mother you must be a great mom to your daughter.

[zuni]

Thank you dear Nicole for your reflective thought about our problem re Our Daughter ,I am so happy for your recovery it must be a wonderful feeling to know your liver is healing and your Dear family must be delighted with your recovery,and yes you do have a lot to live for with a little boy ,a Hubby and extended Family ,and I wish you all a wonderful long life and continued good health .Our Daughter sadly got in with bad company and drugs became part of her life which tore our little Family appart and broke my heart as she became a very different person to that which she was once ,and scared the life out of all of us over many many years almost littererly for me because I have a heart condition which under extreme stress and fear I black out which can be fatal ,However in answer to your question ,yes on several occasions when I have been with her In Clinic and she has complained about her swollen ankles they have stressed she has to cut out the salt ,so she knows straight from the Doctors .She didnt even try the soup she just said it looked like spew and was giving it to another alcoholic who lives in the same block of flats as she ,and just laughed when telling me of all the rubbish she was eating ,it was so hurtful I could have cried ,but she would have got angry if I had so I had to just take it and smile with her laughter .The situation is critical with our Daughter ,she was in ICCU two months from December thats when we were told she would not live ,it wasnt Possible they said as only 10 per cent of her liver was working now and it was too far gone and could not regenerate being too badly damaged,the Hep c has of course had a big part in destroying her liver as well as the alcohol,but once they are on the drugs you cant stop them ,Im so glad you didnt get into drugs and your family will have you around a long long time Thank God .The Encephalopathy will be with her as long as she lives sadly and she will also have to be on meds to keep her Blood Pressure low so she doesnt have more bleeding varices as you have had ,so with the tripple dose doses of fluid meds and upping her blood pressure meds off her own bat she has made herself a very sick girl which causes her to be really nasty because of the ammonia build up in her brain because her liver cant filter all these things any more and she has been told many times everything she puts in her mouth she must be very careful of for that reason ,she has written me hate mail from Hospital this week which she does when she wants me to be so hurt I withdraw from the situation,and I think I have figured it out why ,she is always after pain relief and some dumb Doctor gave her Endone ,which is no no for recovering addicts and she thinks if I am not at the visits to clinic which she accuses me of insisting on doing ,as she has no reliable friends to go with her ,ofcourse I felt she needed support as did the Doctors who have encouraged me to keep up with her visits ,but now Im intruding ,in her mind and the only thing that makes sense is with me out of the picture she may be able to convince them to give her more Narcotics ,which cause even more confusion  in her brain and more nastiness ,so Its time for me to give up because when an addict wants drugs they dont care who they hurt and no one will get in their way ,if they do watch out, .we are too old to go through all these self inflicted Dramas again its been ongoing 25 years or so  although we were so over it all as soon as we knew she was in a Comma at Christmas ofcourse we were there to help and instead where told she had not long to live ,so we had to arrange a Funeral instead,then gradually she was able to be moved to Intensive Care where she stayed for about another four weeks or so and abusing the staff and with the shakes like an old lady still we were told she would not leave the Hospital and wouldnt live more  than a week or two ,but here we are in June and she is still alive and doesnt appreciate the work everyone has put in to keep her alive ,and just does as she wants ,and no one better get in her way.We her Dad and I have been doing her shopping for her as she lives upstairs and is in danger of bleeds if she lifts heavy shopping,and she lives a way away from us ,then she decided to buy herself an exercise bike ,I did ask her to check with her Doctor first if it was safe ,as I was afraid of bleeds she didnt ofcourse and went ahead and after just one night on it she had a really bad nose bleed that night and her gums were bleeding,so another Ambulance to Emergency,were we spent 8 hours waiting for tests results and she was allowed to go home again ,and back again the next day with Dehydration and detained I dont know if she is still there under detention but her hate  mail made it clear she doesnt want me involved so she has sorted my problem of what to do about the situation hopefully some one down there in Hospital will be able to convince her of the severity of her situation ,till that happens Ill Lay low and rest up incase she wants our support down the track.But thank you again for your concern keep well love, your family need you to be happy take care and regards to your Family Zuni x

[KjFlicka]

I was thinking about what to write for a few days. I am 36 and have alcoholic cirrhosis. I can't even begin to imagine my parents' worry about me. I was diagnosed over a year and a half ago and had the ascites, jaundice and eventually a massive bleed from varices which put me in the ICU for days. I had the hepatic encephalopathy at that point, too, which is when they put me on the enulose (many times a day - whatever it took to produce 3-4 bowel movements) in addition to the normal water pills and multi-vitamin. It was just a plain scary mess for a few months. I nearly died, for sure, but I had my folks and my husband and my husband's folks and my awesome doctors who all made the difference in ME being able to completely turn this around. I am doing better than ever now and my labs are even normal and my liver is regenerating, according to my last CT.  Fortunately, I didn't have Hep C, but I was wondering if her liver issues are currently from that or alcohol??

My message I guess is to please don't give up on her. I know I grew up thinking doctors words were kind of 'law', so I did everything I was told.  I had all the bad side effects (save for edema, thank god) and they are all basically gone now. I'm by no means cured, but I basically 'healed' as best as I could to a point where my own liver can actually have a future.

I wish I knew why she would act like this and not take it as seriously as you say. I guess I have a lot of things to live *for* (namely a 6 yr old son), so maybe that was the key. Has she heard all of these diet restrictions from her doctor directly? Because I know my mom would have prefered a ZERO sodium diet, her being so worried. ;-)  

Any way you can send her to another environment, maybe at a trusted and wise relative's house, to get a fresh start or something?  

Wishing you patience and strength!
Nicole

[zuni]

Thank you for your prayers and blessings ,I too believe in Gods guidance.and send you and your family my heartfelt good wishes,yours has been my first letter of reply as i wasnt sure if i were doing it correctly .Do you too have cirrhosis and hep c at such a young age ?
Im sorry you have lost your Mum,we Mothers sometimes wonder if our kids even care about our efforts ,in our case 26 years we have been trying to help without being intrusive ,and because of our Daughters drinking and choice for a different lifestyle to ours over these years we have had to cut ourselves off due to her insistance  that she believed it her right to do her thing and bring home her drug and alcoholic friends to our home ,which led to all sorts of threats from boyfriends when we put our foot down and made it clear just as the law allows her to destroy her life ,we too had a right to keep our home safe and decide who could be in our home ,and since she didnt live at home we too had rights in our home ,I do hope you can see this is fare ,but each time she needs help we have been there for her ,she only had to ask ,and if we had not cut off contact from time to time to recoup our reserves for the next time she needed us ,she has always known she was loved and knew we would be here for her without doubt when the time came .At Christmas she was on life support and we were told she would die in a week  maybe   three at the most as her liver was shot ,and she surprised us all by rallying round   but with brain damage and has to have Lactulose 3 times daily to clear the ammonia build up in her brain which makes her pretty nasty at times ,and resents having to take it ,do you have this situation in your daily life ? and how does your support network cope when you get nasty ,maybe they would like to drop me a line if they have time ,as if they are in the same situation as we are ,they may have some suggestions to help us in our quest for help , take care of yourself ,and please let those who love you know if you dont already ,a kind word once in a while would help so much but we just seem to get her resentment and moodiness especially if she forgets the lactulose,and its all about her being  waited on hand and foot and never much ,and rarely any show of appreciation  on her part I hope you arent like that with your loved ,ones ,we are all doing our very best and would give our lives for our kids ,all our hearts are breaking at your suffering thats how Parents are .God bless you all maybe I will here from you or your loved ones sometime thank you again for taking time to write to me Zunix

[nanasluv]

I am so sorry to hear about what you are going through with your daughter. I will pray for you; with God anything is possible. She is probably just having a very hard time accepting the changes in her life and body. I am also dealing with chronic edema but have seen 2 doctors and the both ran blood work on me and everything came back normal but it is hard for me to accept the way my legs look so I know how she feels about the edema. I also have been dealing with a bad body odor and it is embarassing and I get frustrated at times over the changes in my body and vent towards the ones that love me which I should not but I am bitter sometimes over not having answers to my problems. My point is continue to be there for her she is probably bitter and depressed over what is going on with her health and needs your support no matter what. What better support then 2 loving great parents. I can tell you are great parents. You and God are the best support system she could have right now. I lost my mom 5 years ago; my dad, sister, boyfriend and God is my support system right now and how I wish my mom was here also; she was a great Christian mother. My point is stay strong for her because right now she is probably feeling weak emotionally and physically, just pray for God's guidance. God bless you and take care.