End-stage liver failure.... please help me

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Iggyadi
New Member


Date Joined Oct 2006
Total Posts : 4
   Posted 10/5/2006 12:58 PM (GMT -7)   
My father is currently considered an end-stage liver failure survivor. He drank for a very very VERY long time, and now it has finally caught up with him. Over the years my family and I watched him get worse and worse, but never as bad as now. I have to admit that when i was younger we did not get along through much of my adolescent years to the point where we did not speak, but when i was younger i was Daddy's little girl and now that i am older and we have fixed our relationship i still feel that way. To watch him deteriorate in front of my eyes tears me up inside and knowing that there is nothing that i can do to help him hurts me more. My mother has been an absolute angel through the years taking care of him the best that she could do. Whenever we ask the doctors on how much longer he has all they tell us is "I am not God" and that is all. For years we have searched for information and symptoms to help us expect the unexpected but all to no avail. I am crying out for help to anyone who can relate or help me. I understand that my father is going to die, although coming to grips with the idea is harder than imagined. I am searching for symptoms that lead to the end of his suffering. How much more will happen to my ex Marine/Coast Guard/ NYC Firefighter father? I have watched his spirit break and one thing after another taken away from him because of his physical limitations. Of my knowledge he has anemia and mouth sores associated with it, severe stomach acid that also causes the sores which keep him from eating. His amonia levels are very high causing extreme confusion, he has difficulty communicating/finding the correct words, difficulty walking, getting dressed, standing, sitting, etc.He is extremely weak. He is VERY VERY thirsty but he is not peeing as much as he should be for the amount of liquid he is consuming, has vomitted blood (but hasn't in a while),and he also has immense water retention in his abdomen which was drained once but the doctors refuse to drain it again. He also has a hernia that was caused from the internal breakdown of his organs,amongst other things. He is also not eligable for a transplant. When will he stop suffering? Does anyone have any information that may help me look out for more signs/symptoms that will occur, or how much longer he has to live? Is there a "check-list" of some sort? Thank you for reading this, any information would be helpful to me right about now. sad

judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 10/5/2006 2:15 PM (GMT -7)   
Hi,
I can feel the suffering in your email. I am so sorry you are going through this. It is very difficult to watch our loved ones suffer and feel so helpless. I have an autoimmune disease of the liver, but do not know much about your father's condition which I take to be chirrosis. However, I can refer you to a avery good site that deals with it and I will post it for you on here. You will get some answers there and support. I hope some on here can give you some answers and support also.

Why is your father not a candidate for a transplant? Is it is health other than his liver?

I hope you can get some support & information to make this time easier for you and your family to live with.

Sincerely,

Judy



http://health.groups.yahoo.com/group/livercirrhosissupport/?yguid=206194285
"Hope is seldom found in the things we can see;
it is the sweet fragrance of grace."



Shel
Regular Member


Date Joined Apr 2006
Total Posts : 122
   Posted 10/5/2006 3:32 PM (GMT -7)   
Hello,
I'm sorry to hear of your father's suffering. The best thing you can do for him and yourself, is just be there with him no matter what. I don't think there is any medicine out there that can take his pain and suffering away. All he can do is take things one day at a time and one situation at a time. Please seek some support for yourself and family members if possible and that will be a great help. Pray to our dear lord and he will see you and your father through these difficult times. My thoughts and prayers are with you.
*Hugs, Thoughts, and Prayers*
   *Shel in New Mexico, USA*
 


Debbie Jean
New Member


Date Joined Oct 2006
Total Posts : 1
   Posted 10/11/2006 2:39 PM (GMT -7)   
is he on the liver transplant list?    i have end stage liver disease and i feel like i am just slowly dying unless i do something drastic to get on the liver transplant list.  i know how hard it is to watch someone suffer.  my x husband gave me hep c and he is in worse shape then me .  we have 3 sons who dont want to face itl  it is all so hard but what we do today will make a difference tommorow.  this is weird but have you thought about Canada?  some people i know talk about treatment in mexico.  it is scarey. i am sorry i dont have more to  share.  i am just waiting myself. 

Iggyadi
New Member


Date Joined Oct 2006
Total Posts : 4
   Posted 10/12/2006 8:10 AM (GMT -7)   
thank you to those of you who posted.
Debbie i am sorry to hear about your ailment and i want u to know that you are in my prayers. As far as if my father is on the transplant list, he is not becuase he is inelligable for a transplant. He is to weak for surgery and he has a massive hernia that frightens the doctors because they are afraid that they will not be able to "fit" it all back in as well as risk massive infection, but also because he is "self inflicted", he does not have hep C his is a result from alcohol abuse. I thank you very much and i hope all the best for you.

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 10/12/2006 9:52 AM (GMT -7)   
welcome Debbie,
Im sorry to hear about your condition. I hope you keep returning here and post when you feel like it,,,will keep you in my thoughts
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


szdancer
Regular Member


Date Joined Jul 2006
Total Posts : 20
   Posted 10/12/2006 8:19 PM (GMT -7)   

Iggyadi,

I just read your email and we have a lot in common.  My father is in end stage as well do to alcohol.  He has a massive hernia as well... they doctors are very concerned.  We are in the process of transplant evaluation at Mt. Sinai right now.  He has been sober 11 months now and doing a wonderful job.  I could write you a book right now on everything we have went through this past year, but I have to be up very early tomorrow.  I would love to chat more soon.  I am not sure what avenues you have pursued but from my experience, if one doctor won't do it another might.  UNDNJ turned my dad down after being there for 2 months this summer.  My brother and I were not happy with that and contacted Mt. Sinai and Columbia pleading for the doctors help.  It worked!  We all know the risk of surgery for him is high... he also suffered a heart attack in 2002... but we are willing to take the chance.  We would rather him leave us trying than not.  I hope you are hanging in there.  You have many friends here anytime you need us.  Hope to be able to talk to you soon.  Wishing you and your family well!

Samantha


DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 10/12/2006 11:57 PM (GMT -7)   

There, forgive me, are no end-stage survivors without transplant.

As long as your father continues to drink - he cannot improve and he cannot be listed for transplant.

If that is his choice - which you must allow him to make - he will die from liver disease.

Period.

 


DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

Iggyadi
New Member


Date Joined Oct 2006
Total Posts : 4
   Posted 10/13/2006 6:30 AM (GMT -7)   
Thank you samantha for the support, yesterday was my birthday and i really needed it, it was almost like a virtual hug from you lol =o) thanx! As far as other doctors, we have tried them all, he is very very weak. We did file transplant papers once but they said that they must have "gotten lost" becuase they remembered receiving them but had incomplete records. And i am really proud of your dad! if my dad can do it.... your dad can do it!

Dj,
i just would like to inform you that this is what the doctors call my father a survivor, however he is getting worse. They call him a survivor because it has been over 5 years since he has been diagnosed. Many people do not live that long with OUT a transplant. As far as drinking, i think that you may have misunderstood my letter, my father DOES NOT DRINK and hasn't since he was diagnosed. As far as the transplant list, we did file for it but it is incomplete, and upon review of our second application, they denied him because he WAS an alcoholic and that he is self inflicted, which makes him inelligable. But i thank you for trying to be blunt, however, i am not a misinformed, dellusional person who is unaware of the situation at hand. Yes, my father will die of liver disease. Yes, it is self inflicted do to massive alcohol intake over many many years. No, my father does not want to die. No, my father does NOT drink. and honestly you could be a little more positive and not negative!

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 10/13/2006 7:41 AM (GMT -7)   
iggy,
i think that if your father agrees to go to AA,or some form of treatment for alcoholism,,,,,,some places might let him be listed for transplant,,,,,,keep trying as long as your father wants you to ,,,,there is ALWAYS hope,and maybe someone you come into contact with along the way,can help ease your fathers suffering,,,,i know how hard this must be,i lost my dad to cancer(colon cancer but spread to his liver,among other organs),,he was diagnosed in Jan 2004,and was gone from us in June,2004,,,,,not even 6mths,,,,,and it was very painful to watch..my big strong father suffer like that,,,,please know your in my prayers,as is your father and the rest of your family
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


Iggyadi
New Member


Date Joined Oct 2006
Total Posts : 4
   Posted 10/13/2006 11:30 AM (GMT -7)   
Thank you for putting me and my father in your prayers, but drinking is NOT the issue really.... it is a cause, an infliction upon oneself causing disease. I do not think that AA will matter at all anyways, i mean he stopped drinking more than 5 years ago. My true quest is for information about what to expect next.

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 10/13/2006 12:28 PM (GMT -7)   
im sorry,i did not mean your father still drinks,i just remember someone on here saying,even though her husband had stopped drinking,to be on a transplant list he had to go to AA meetings,,,
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 10/13/2006 7:44 PM (GMT -7)   
Iggyadi,
I am so sorry you are having to go through this, my heart goes out to you! My husband is in end-stage liver disease, he is a transplant candidate. He has extreme ascites, encephalopathy (confusion), lots of cramps and general pain, he also has a large inguinal hernia. The cause of his problems are alcoholism and hepC. His disease is self inflicted also, but he was accepted as a transplant candidate, though he stopped drinking he was required and is still required to attend A.A. meetings. As Samantha said they continued to seek a transplant for her father from other centers until they found one that would accept him, which is what I would have done also, had we been turned down. 
I know how frustrating it is to not know what to look for, I don't know of a check list on this. Every ESLD patient progresses differently. This disease seems like one day they are okay then it hits them to the point of being life threatening! I was told last January, by some doctors that my husband would not make it to May of this year, the way he was progressing in the disease. I found a couple of good hepatologist that have helped him survive this year. He is close to getting transplanted. His condition continues to worsen, ascites and encephalopathy are his big problems right now. Just this week he had over 15 liters of fluid drained off of him, the doctors are going to see how the encephalopathy does for a couple of weeks then they are considering a TIPS to keep the fluid off, until the transplant comes.
All I know to tell you is to just keep trying and if he doesn't have a GI/heptalogist doctor to find one, they can help manage the fluid, encephalopathy, and varice/portal hypertension. They have saved my husband's life on more than a few occasions this year.
Just want you to know that there is always hope and I will put you and your family in my prayers!!
Hugs,
Teresa

smiley2day
New Member


Date Joined Apr 2007
Total Posts : 7
   Posted 4/6/2007 10:12 AM (GMT -7)   
cool  Good Morning,
I have been reading a few posts and feel sooooo relieved to know there is someone to talk to about ESLD. I collapsed 8/14/03, fell in a coma and awoke to a whole new world. I had a small auto accident the year before leaving me with neck,bcak and spine damage, neuropathy in hands and legs and am legally blind. I didn't have health insurance and no one told me about Workmans Comp, so I drank heavily that whole year. No wonder I collapsed. Duh! I can't even begin to tell you what I had to go thru while IN the hospital (for a month), but it pails to what I endured AFTER I was released. I had a wonderfull kidney doc and an OK liver doc that saw me until I qualified for SSDI nad MediCal. Then I got to go to Stanford Univ where I went through the whole evaluation process. Right after I got out of the hospital, I had to have paracentesis where they would take out about 2 gallons of fluid from my abdomen. That happened about every 3-4 weeks and lasted 10 months. I had to go to one hospital for labs, etc and Stanford to the liver clinic for other labs, so I had to see a doc once a week for over 2 years. I have ESLD, kidney failure, nerve damage, neuropathy, alergic to CIPRO, COPD, RA and god knows what else. Because I did not have any family or friends to help me, Stanford told me that I didn't "JUMPTHRU ENOUGH HOOPS" They said in order to get on UNOS list, I had to a) Secure insurance b) have suitable housing c) be sober for 3 months d)have a support person.
Well, I did all that in 2 months. Not easy, but I didn't have a support person. I was told I was on the list and was a perfect candidate for transplant. Then later told I was deferred. I was deferred 3 times. I began to lose faith. This whole time they told me, as of September 2003, that I only had a few months to live, anad wouldl not live the expected 2 years. So they pushed me to Stanford. Stanford in turn made me 'get my papers' in order. I had to make out my own will, Advanced directive, and pay for my burial/Neptune Society. I did all that, alone and without anyone, no ability to drive, no money (My SSDI was 900 and rent was 845) and no CLUE what was happening. I tried to research everything I could get my hands on. OK, so it took me a long time to read it!! HAH! I can see some with special aids. After the third deferral, I almost gave up. I sought a doctor that someone at the docs office reccomended, just to talk to. It was a medical marijuana doctor. I was 46 at the time and never touched the stuff, but gave it a shot. She prescribed it for several reasons. Once I told Stanford that I did that, I was told that they would NEVER preform any transplant on me. I was devastated, hurt, lost and scared, no turning back. So, I really had no reason to stay down there and moved to Oregon in October 2005. Mostly for the cheaper rent. I was told that my medical condition would follow me even tho I would have to reapply. The day I arrived, Oregon had closed their health care to new patients. DANG!!! (I said worse under my breath)
Finally, over a year later, without a doctor, without my medications, without anything, I got in to OHSU to see their liver doctor. He checked me and told me that there is nothing they can do for me except to give me 'QUALITY OF LIFE".  What??? So they keep me on lasix and aldactone. Thats it. Oh, thtey also told me "We don't know how you are still alive, but whatever you're doing, keep it up"!! Again, I say  WHAT????
Believe it or not, this IS my short version.
I believe Milk Thistle (the good stuff), MMJ (legal stuff, in moderation, helps with nerve damage, pain and nausea), complete and utter FAITH in GOD, and dam stubborn determination is the key. I admit I would rather NOT smoke it, it stinks and I can't even talk to anyone, I feel stupid, but I feel better and can sleep more than 3 hours at a time.
I don't know what I am supposed to eat. I can't have:animal protien, sodium, alcohol, potassium, dairy, pork, which doesn't leave me with much. And I can't shop all the good stores. No money, no knowledge where the stores are, ie, health foods, etc. I also have LOW blood pressure, LOW blood sugar.
I have been diagnosed several months ago with clinical depression and anxiety/panick attacks. UH, YA THINK!!!! Some doctors, grrrr.
I alaso have to be positive, especially when I am out. People look at me and say you look fine. It used to hurt me, now I just smile. Most diseases go un noticed, like cancer, prostrate cancer, heart disease, depression, broken hearts. So thats why I smile, I can't judge their ignorance, only pray they won't have to go thru this. I think I come out the better person, I hope so.
Also, in Oregon, I don't qualify for anything. Oh, excuse me, I do get $16/month in food stamps. thats 50 cents a day for fodd, oh wait, I have to allow for TP and soap.
I should stop, this is becomming a letter, sorry for taking so long.
I thank you for allowing me to say my peace. I am NOT waiting to die. I just feel like I am stuck without anywhere to go, no one to take me and not able to do anything once I got there!
I AM wanting to "go home" and I am very secure in that God will do so when He is ready for me. And I realize that there is still some 'homework' I have yet to do. Its frustrating in how to go about it, and what is it?? HAH!!
I do everything by memory, so that keeps my spirits up. It just takes me a few days to recoop after I have gone to get my groceries or go to thte bank. But I get up and get out there a few times a month. Dam rain!!I can walk, but can't bend my knees too much, so to fall is a huge fear as I can't get up without something to pull up on, and running, NO WAY. That bus would just have to hit me, I can't get out of my own way.
My humor has been my saving grace, always has been. But I sit here cracking myself up most the time, too bad I'm the heckler too!
Well, people, you are not alone and I have taken every post I have read thus far to heart. And included each and everyone of you in my most sincere prayers. I thought if I pray for all of you, and then slip my name in, maybe we'll all get heard at the same time. Ah, its worth a try. Its free and frogiving. My two favorite words second to LOVE and FAITH.
God Bless us all.
smiley2day

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/6/2007 10:43 PM (GMT -7)   
Wow, Smiley!  You have certainly gone through an awful lot...and you still survive and persevere.  I believe your sense of humor and faith in God have gotten you through it all, and will continue to be your greatest allies.
 
I know that such things are different in each state, but do you know if you have HUD subsidized housing in your county or a nearby county?  That has saved me a lot of money.  Rent is based on income--30% of gross income, but it ends up being less than that as they give credits for electricity and medical bills/prescriptions.  There is also a telephone credit for those living in Section 8 housing.  I only pay $6.58 a month for local phone service.  I have no "extras" as those would cost me the full amount.  I use 10-10-220 for long distance, or use my cell phone which has minutes prepaid every month by me (the minimum.)  I use coupons at the grocery store and the store's card which saves me money on advertised specials.  I use the Internet much more than the TV, so I don't have cable.  These are just some ideas for you to perhaps get by a little better on your restricted income.
 
It seems that you really got jerked around by the medical system in CA, and don't seem to have fared much better in Oregon.  Get with a really good hepatologist and don't give up!
 
Prayers and hugs,
Connie

smiley2day
New Member


Date Joined Apr 2007
Total Posts : 7
   Posted 4/8/2007 1:44 PM (GMT -7)   
Thanks Connie,
Yes, I have gotten ahold of the commissioner to reduce my land line/phone to the $6 range. I too have a PC (DUH) and thats another $20 bucks, oh well. And I am always trying to split a penny!! What a game that is, eh?? I can't seem to get any tighter, wish my thighs could do the same, HAH!
Go with the flow just ain't cutting it, it seems, but I keep on trying. Don't we all!
I did get a great liver doc, the best around here, but they were the ones who told me they could only help with the 'quality of life' crap. So, I have to take that as the best offered to me, right??
Life goes one and so will I, until my place is ready in Heaven.
I have to say that I got the best spirit booster yesterday. My neighbor asked me to go see an art exhibit in Portland. Funny, she knows I am visually impaired, yet she "knew" that I would love this. So I went. And I was utterly amazed by what I actually DID see. What I saw was so familiar, strange, but so very familiar. It was by the artist, Akiane. She is now 13, I believe, and her work is directed by God, her words, not mine. And what I saw was brilliant and remarkable all in one. I still can't believe what I witnessed. She truly paints what God wants her to paint.
I honestly feel that God allowed this to happen to me. He wants me to see life through HIS eyes, not mine. So be it. And although this impairs me and  prohibits me from going about life as I once knew it, I "see" things the way He wants me to. So I live and learn.
Guess my way was not the order of things. Geez, God does have a sense of humor!!
It has been said that if God brings you to it, He will get you through it. And with that said, I thinkthat He only does that to those who are capable of embracing it. So I guess I am one of the 'lucky' ones. I have to get through this in order to grow form it. Only He knows that I do not want to come back...I want to do my homework NOW, so I can be safe with HIM. I am not a holy roller, but very much a true believer. I have learned the difference between a 'way out' and a 'cop out', huge difference.
Don't want to come back and do it all again.
One lesson I have learned is this....listen, learn and apply. I believe this is what makes us rise up from the lesser. Makes us closer to the goodness in us all. He brings that out in all of us. Everything else is just part of our own individual groth. We either take it, or not. That is the choice He gave to each and every one of us. The ability to choose. As I said before, I choose poorly. But I have learned from that which makaes me stronger. AND on His path that He designed for ....me.
I hope that you all have a splendid Easter Day and give thanks for all that wwe have been blessed with, today and all our tomorrows.
smiley2day

smiley2day
New Member


Date Joined Apr 2007
Total Posts : 7
   Posted 4/8/2007 1:49 PM (GMT -7)   
PS: My pc just read this back to me and I now know I better use "SPELL CHECK"
AH, what an eye-opener. Sorry for the mistakes. (Can I get an 'A' for effort?)
HAH
LOL

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/8/2007 3:02 PM (GMT -7)   
Smiley, no problem...you put forth your beliefs beautifully. I feel there are no coincidences, and that everyone who crosses our path, and every difficulty we face, is for a reason...usually for our growth. Faced with a life-threatening disease (liver cancer), I have developed a greater sense of awareness and appreciation for each day.

Happy Easter to all,
Connie

smiley2day
New Member


Date Joined Apr 2007
Total Posts : 7
   Posted 4/8/2007 4:48 PM (GMT -7)   
Love to you too dear!
Smiley

smiley2day
New Member


Date Joined Apr 2007
Total Posts : 7
   Posted 4/9/2007 12:40 PM (GMT -7)   
cool  Good Afternoon to all,
Well, I sure could use some info/help.
One of my biggest hurdles is diet. Basically I have been told there isn't much I CAN eat. I try to keep it simple (KISS) with no avail. I really need to know a basic simple diet. I always mess up as I tend to eat what I know will stay down, settle my tummy, yet give me some health benefits. I stay away from sodium, no prepared/packaged foods (thats a feat in itself) no potassium, no animal protien (I do eat a hamburger maybe 2 times a month) no fast foods, fruits when I can and fresh veggies when available and priced right. What I would like to know is maybe a sample diet. I know I should eat at least 4-6 mini meals a day. I have gained about 20 pounds lately mostly due to inactivity, although I walk when I can at least once a week, and its a hike. Just to get to the grocery store I have to walk down AND up 100 stairs each way. Thats an adveneture right there. I have to rest for at least a whole day after I go and get grcoeries. I am on limited income and I get about $16/month in food stamps. Cant quite figure out how to buy what I really need that most beneficial. Sodium is always the problem. I am to not eat anything thats over 300 mg. Well, thats so hard to find, except fresh foods.
My doc said that she could not allow me to see a nutritionialist as MediCare won't pay for it. So here I am, leaning on you all for some advise.
Tall order, I know. Any info would be greatly appreciated.
I think my kidney on the right is really broken, its painful and I would love to help heal that in the process.
I would also like to share with you that I am so VERY greatful for this site. Words cannot express how much my mind, body and soul have felt relief, hope and comfort. I am beginning to feel a safety net is there for me, as I have been looking for a safe haven. To be me, to share my thoughts, my fears (Oh, trust me, they're comming) and my concerns. I knew there were people like me out there, hence the 18,000 people needing transplants, who felt like me.
Sometimes it feels like so much work and so much research, I am continually exhausted and overwhelmed.
I believe this site is my answer to my prayers. It soothes my heart that I am not a bad person because I have this disease that is killing me slowly. And because mine is alcohol related, its only what most see and hear. I woould like to think I am worthy of the same medical care that others are getting. That is where my faith plays the biggest part of my recovery/plan to stay alive.
I do question the meaning of 'quality of life'. I wouldn't wish this on anyone, yet here we all are. Suffereing, wondering, worrying and seeking answers.
Even those who are of little faith, the true answers are within ourselves. And I do believe that God, our Higher power, whatever our beliefs, will truly take us to the place of calm, place of serinety and a place of goodness. It never hurts to beleive.
I pray for us all that throughout it all, we find peace. Listen to our hearts and share the pain so others can find peace within what we offer.
Human-kind is our right, our privledge and most importantly, our salvation.
I truly believe that God will see me though this, His way, and I'm OK with that.
God Bless you all. And thank you again for your ears, eyes and heart.
I will check in soon to see if you can throw some ideas my way. I have appreciated all that you have given to me. Enjoy your day.
smiley
PS: Can't find spsell check on this page, so sorry for the typos.

PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted 4/9/2007 7:05 PM (GMT -7)   

Hi,

I haven't been on this forum in quite a while - but got so much support and great advice when I was here last - my father too has liver disease - he almost died - 2% chance of survival with kidney/liver failure - my family and I moved in with him and helped him back to health - I too was searching for answers - the problem is no one can answer the main question you have - no one knows what will happen -it is different for everyone -  it is heart breaking - my father made a great recovery and has been well for over a year - he doesn't watch what he eats and doesn't exercise but still continues to do well - he recenly started drinking - so once again I'm searching for answers but the problem is we just don't know so many factors play into it - I always thought if my Dad took a drink he would get soooo sick - but I was wrong - the Dr. warned even if he didn't drink his liver could fail so now he is drinking - how much more can that poor liver take??? So now I have to wait - I have to watch him kill himself - maybe he will get sick and I will need to care for him again - I just don't know - it is so hard

I feel for you and your Mom - the best thing I did was take it one day at a time - wake up and say okay I just have to get through today and then I can go to sleep and I always tried to find something positive and keep laughing and joking if you can - I watched ALOT of cooking shows (my Dad loved them) - make sure you eat and drink water - you need to be healthy:)

Take care

Patty


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/9/2007 11:32 PM (GMT -7)   
Patty, I am SO sorry to hear that your dad is drinking again! That is the absolute worst thing that he can do. He may be doing well now, but it won't last long if he continues drinking. Please try to talk some sense into him.

I see posts where people are saying they are ineligible for transplant since their ESLD is "self-inflicted." I know there has been talk of making this a law, but as far as I know it isn't law now. That should not prevent anyone from being a transplant candidate. If a patient is drinking, he/she does have to stop and attend AA meetings for 6 mos.

Smiley, are you still attending AA? (You gave yourself away with that KISS comment, as well as some others.)

I remember Dr. Phil saying that the longer it takes to make something, the better it is for you. For example, if you make soup, it will be much more healthful than opening and heating a can of ready-made soup. You can also control the sodium, potassium, etc. Fresh vegetables are so expensive lately, but if you make several quarts, you can eat it for a couple of days and then freeze the rest. Animal protein is the most difficult thing for the liver to break down. However, you can eat beans as a substitute, as well as eggs. I do very little cooking...nuke most everything...but the diet dinners have much less sodium than the regular frozen meals. I eat fruit in season. Mostly, I just listen to my body for clues as to what it needs. I have recently acquired the habit of carrying a bottle of water with me when I go out. This keeps me hydrated and prevents my mouth from becoming so dry (from meds.)

Hugs to all,
Connie

smiley2day
New Member


Date Joined Apr 2007
Total Posts : 7
   Posted 4/10/2007 8:22 AM (GMT -7)   
Dear PN16,
Thanks for your post. I too am sorry to hear about your Dad. (Oh and FYI, I wasn't talking about my Mom, she died in 1993, I was talking about myself)
It does seem like he just wants to be comfortable, with his drinking. Not that it is a good thing, but I think if he's going to die and there's nothing that he can do, then why not. I am NOT saying that it is the right way to go about it, but I can surely understand how he must feel. I can't blame him. But that does put an undo burden on you. What he is failing to see is that the drinking only makes things worse, like the ammonia it creates in his brain. He may not know  it yet, but on top of all this, he may go insane before all is said and done. Perhaps he KNOWS this, and "what the hell!", who knows. But I do believe your love will prevail and he will feel loved,, despite how much it hurts you.
No one wants to cause the other harm, not when we are sick. I wished my daughter was here to help me. You are truly a "good daughter" and I praise you.
What does his docs say about his drinking? Or are they letting him drink? I was told that if you drink, you are NOT eligible for a transplant. Did you hear the same thing? I sure would like to know about this one.
Well, you hang in there (Gosh, I really hate that phrase, it sounds so sporty and not serious) you can only do what you are able, and the same for your father. I can tell you that being there/nearby with your love is probably the best help or medicine you can offer him. Be strong and maybe he will learn by your example. God Bless.
smiley

smiley2day
New Member


Date Joined Apr 2007
Total Posts : 7
   Posted 4/10/2007 9:01 AM (GMT -7)   

Dear Connie,

You caught me! But I heard KISS in the 70's (best advise from my boss) And no, I have not attended AA for several years. It was too dangerous the the SF Bay Area as I didn't have my white cane then nor did I have my legs, I was still using a walker. And since I moved to Oregon in 2005, I just didn't have the means to go nor the $$ to get there. Things are pretty far between and a long trip is not good for me.

I am so glad you wrote about DrPhil. I love that man. I have done that last year, with the fresh veggies, just ran out 2 months ago. And fruits, I love them, but they are toooo pricy and they always taste like mush. Don't know if due to the long travel or just idiots who stock them, Hah!

They said for me to avoid dairy, but i have cheated and have eggs about once or twice a month, why? because MY body screams for portien and I feel safe in eating eggs. (Hope I was right)

I hate to, but have to admit something, so please don't rip me a new one. I got assaulted last October. I fell off the wagon. It was too much for me to bear. I got weak and I have no one to help me, no friends, no family. I was so hurt that anyone would attack a 49 yr old blind woman during the day. I am not scheduled to see my doc until this June. And so I have been drinking, a little, ever since. I KNOW what it is doing, and I am ashamed. I can't even look for an AA because I am still drinking. Not everyday, not very much, just when I can not bear myself. Usually when I have a panick attack and it does soothe me, as false as that may be, as its only purpose at that time is to relax me and calm me so I don't GIVE UP!!!

I know I am going to catch sh** when I see him in June, but I just have to be honest, as I always am, and see where to go from there. I still have some time to completely quit and I try everyday. I did buy some Glucose tablets as I have low blood sugar, and it seems that that could be the cause of PART of the panick attacks. They seem to be helping. I feel great guilt after I have the drink, but that really doesn't matter, does it. But I am trying to do the best with what I've got nad pray for forgivness. I am only human and I do make mistakes. I also take detoxifyer drops at night, with docs approval, along with Milk Thistle and B50 Complex.

And you are right about no transplant, but Stanford told me that already. It is NOT law right now, but it probably will be, as the docs do not want to treat the 'self-inflicted'. Which suprises me, they treat cancer patients who smoke. One man at Stanford was a huge drug user, herion I think and meth AND drank, he had just gotten his trtansplant while I was at a liver support group. He looked like hell, seriously as did his girlfriend. But they wouldn't ever give me a transplant as I was prescribed MMJ and was only on MediCal (MediCaid), so I don't know the truth. But they gave up on me. Even though my ammonia levels were not high, my MELD score was 14 back then and they said I would need dislysis within 6 months, that was back in June 2005. So where do I stand? They still say they can only try and give me quality of life. I still am struggling over what the heck that means.

I personally think that they know how many patients are dying from liver disease and won't help those of us who got it by using alcohol. I drank no more than my husband did yet I had the weaker internal body, I guess. My parents were both alcoholics, the quiet types, and I guess I followed their lead. I just was the unlucky one. My dad and sisters love me, but they hold the attitude of 'she did it to herself' and that hurts me the most. That really hurts. Makes me feel unworthy. Funny, I WAS worthy when I helped each and everyone of them in their hour of need. And I was the only one who stayed by my mothers side while she was dying of cancer. And when I stepped up to the plate to care for my grandpa as he ws 95 and died at 97. He died while I was in the hospital, matter of fact he died the day I came out of my coma. I feel he asked God to take him and let me live. Just my opinion of things.

My life has been quite full really. But its sad that it will end in such lonliness and sadness. I truly try to keep a stiff upper lip, but I guess today is not one of those days, not for me anyway.

I appreciate all that you have given me and especially the time to vent and pour my heart out. It DOES help me, it does. This DOES give me quality of life.....being heard. I don't nedd to justify my wrong doings, nor do I want to be judged. Maybe thats why I tell it in the only way I know how, with honesty. I'll get my judgement day later, if I am deemed worthy to go "HOME", and only God can call that one, right? I pray so.

Oh and by the way, I did go online and joined 2 AA support groups for over a year, but Stanford said that wasn't good enough, I quit when I moved here and haven't returned. So I did the best I could at the time. Today is another story and I ned to work on it. Going solo is hard for me now. I used to, but I had kids and they came first. I am not real strong when its just for myself I guess. At 50 and broken, it just doesn't take the same kind of strength. I am in unchartered territory and quite lost most the time. So I smile and laugh at every opprotunity and do try and make the best out of what I got.

I will close for now and hope that anyone who reads this may find this as another person who has the same disease and is trying to cope with the same things. Well, parts of it anyway. I do believe in never giving up hope, as once you've lost that you've lost it all. I know that when I get like that, I do ask God for the strength and guidance and most of all, forgivness.

I wrote this poem when I was 12, it goes:

"Without mistakes, there's no forgiving

  without forgiving, there's no love"

And I do believe that whole-heartedly. Thank you for letting me share this with you.

God Bless,

smiley

(Felicia)


PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted 4/11/2007 5:19 PM (GMT -7)   
Hello All,

I probably won't check back too much on the site but wanted to say - through everything with my Dad it was nice to have people I didn't even know support me and help me - this site is great.

From my experience my understanding when it comes to transplants is you have to be sober for a certain amount of time (a year?) but people that were drinkers are eligible. I just went through a transplant experience with my neighbor and there is an age cut off point - for lung it is 65 - I don't know about liver. The Dr. talked to my Dad about it years ago but since he was so sick if the dr. talked to my Dad about it he didn't mention it to me. The thing with my Dad is it would be a waste of a good liver - he would just drink again - maybe he knows that so maybe that is why he never really looked into it??

All the best to everyone:)
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