dad just been diagnosed with liver problems

The answers found here can prolong life and save life... we here are the survivors... attacking these problems head on... walking with our partners or illnesses with our heads up... supporting each other... though we stumble we do not fall for the arms of the Forum surround us with love, care, and compassion... Sandi

sorry i think i have posted on next page 3 when i should have stayed on here...so p.t.o lol. goodness i found my sense of humor

hi hep yes dad did have an endoscopy an these were the results he went to the local gp for.i would like to know that if they say these varices or veins are swollen ...why cant they band them before they burst anyway just to be safe?or do they not do this unless they burst. spooky

according to dad the gp is making all the desisions.....i feel we are being lied to again.i am getting fed up now of dad saying
"your not a doctor" i feel like giving up i am so stressed up trying to get to the bottom of all this,when really the worst is yet to come.dad will not let myself my mum or my sister know anything.he is totally in charge as always,an is just telling us a load of crap.how can you help someone if you dont know the whole story.we cant even ask the doctors at the hospital without his say so,an dad certainly wont let anyone have power of attorney,or medical power.i think i will back off a bit,i want to know everything so i can help,but maybe its time to butt out. spooky x

I went through a period in my life where I felt the world had revolved around my mum and her liver disease. Through my experience ofmy mum being in hospital with various things relating to liver disease, it is easy to become confused. She started with burst varices, now has epilepsy, c dif, mrsa, fractured bone in spine, hip replacement, jaundice,ascites, pneumonia, lots of falls hurting her head (one where she ended up with 16 staples), encelepathy and three strokes. she is supposed to attend outpatient clinics formany things but never goes. hospitals can bevery confusing, they treat her for the symptoms that she comes in with.
Your dad sounds very stubborn, like my mum. this can make things extremely upsetting and frustrating for you as you want to help but need the knowledge of his health to help.he does not want that,hewants to be left alone. the only thing you are left with is getting the chance to speak to a doctor when he is at the hospital, but he might not be experienced enough in dealing with your dads problems
in the end you get lots of advice but none of it is of any use because it is just guess work.

Varices can be very dangerous, routine endiscopes are neede to keep an eye on them, in case they burst.my mums has burst a few times, but we got her to the hospital intime. The specialists decide if they need banded, i donot know if medication is needed to help, as my mum does not discusss anything with me.

Although i have been through alot with my mum, I am not her carer. The only thing i do for her is phone and visit. So I am not like most of the other carers, My mum keeps her distance, does not want me to do any thing for her, wants to be left alone. she makes this very clear, I feel like an outsider. but I will always be there for her,for when she needs me.

There is not much you can do if your dad is not being honest with you, you have to take care of yourself.

Spooky, for the constipation, he should increase fresh fruits and fiber in his diet.  The electric shock type of pain sounds like compression of a nerve.  He may have a lower back problem that is causing this.

Hugs,

Connie

hi again been a few days since i posted...dad is to go back in for draining he has only been out of hospital for 3 weeks,now is stomach is worse than ever,he hardly is out of bed he is tired an sleeping most of the time.he also is anemic is this normal for liver disease an his spleen is enlarged.he hardly eats,he has definatly had no drink.so my strong powerfull dad is now a shadow of himself an it breaks my heart to see him like this.

hi hep thanks for answering,its so hard isnt it seeing someone you love go through this...he keeps telling us he just needs a rest,he gets cross when we tell him to try an eat,saying he is full,i try to tell him that he will feel full but he still has to eat,i really dont think he knows how ill he is,he has always been a very optimistic man.we will have to see what the docs say at the hospital now he is been admitted again.he shows no sign at the moment of been confused sothats a blessing,but at the moment i am preparing myself for anything.when i tell mum an my sister of the knowledge i have about this disease,they tell me not to think the worst all the time,but i feel lke i have to prepare them,i am so mixed up,becauce i need someone in my family to disuss this with but they all telling me to stop thinking the worst.he will soon get better an be up an about.... thanks again spooky

hep no he is not at all confused,he is quite optimistic he will be well again,its my mum an sis who keep telling me not to be so negative when i try to inform them of just what can an probably will happen.he is in the hospital now an they are draining him but he is so weak,he has not had any lactolose so amonia levels must be ok,im sure the doctors check this level.

Hi Spooky, hang in there. It's great that you want to be educated on this disease. And it's hard dealing with family that don't want to know about bad things that may happen. It's too scary for them. It's their way of coping. Don't take it personal. Everyone has to deal with it however they can. We will be here for you to talk to. I know it's not the same as speaking with your family........but we are your family too.........your cyber family.

Lot's of thoughts and prayers..........

spooky,i know you said you were in the u.k. even until this day no one has told me my mum has end stage liver disease. I know in my heart that my mum is dying slowly in front of me, she has suffered near enough every complication of liver disease and still no one has told me how bad it really is. Now i hope for some clarilty, no more *****footing about, I want someone to talk to me straight, not just look at me with pity being afraid to tell the whole truth.
so I find it is not just family and friend who want to hide from the facts, our hospital system is not upfront enough, and we are left with many unaswered questions. maybe that is just my experience with hospitals.
Give your family time to digest all this information, as it will be very new and scary for them, and we all cope with things in different ways. we all have our own coping mechanisms

hi again i have obviously not been going through this as long as you have,an as far as i know we here in the uk dont have anything like the act you mentioned.however when you are admitted to hospital they do ask who is next of kin.that is so if there is a situation as they call it ,they then contact that person,also they dont like all members of the family to be ringing the ward to enquire as they explain the nurses are busy,which i do understand.doctors wont talk to you against patients wishes,so that is what we seem to be up against...however i have found with my limited knowledge,that if you speak to them in more medical terms,they tend to tell you more as in ...when dad was admitted this time for swelling they said the doctors that they had to do a blood test to see if he was anemic,i said is there a possibility he could be bleeding inside then??the doctor seemed surprised that i knew this possibility,an then told me more.that he could have an infection becauce he had a tempreture,an yes possible bleeding,he also told me other stuff about his levels of bulbirin which i did not understand,but i didnt tell the doc that!!so i have learnt if you can talk to them in medical lingo,you get a bit further,so thats a bonus.they are also checking that he isnt diabetic,which i dont understand cos he isnt,but i didnt question this. so learn the medical terms an seem confident when you ask,an they seem to tell you a lot more. spooky

Spooky, you are very correct that knowing the terminology and having some knowledge of liver disease will garner more info from the doctors.  I have a clear advantage of having been a medical transcriptionist for 15 years (until I had to take Disability in '05), which required training in body systems and medical terminology.  I also have references to research things.  When a new doc starts to explain something to me in layman's terms, I immediately let them know that I understand the "lingo."  They actually seem relieved and then will loosen up and talk to me almost as a peer.  I have compiled a short list of medical terms related to liver disease, which are thumb-tacked at the top of the page as Medical Word List.  I don't give definitions, but give the correct spellings so that if a person is interested they can look them up (just use Google to search.)  I have also expanded my knowledge just by being involved in this forum.

Elevated bilirubin leads to jaundice.  Normal values are:  Direct - 0,4 mg/100 ml, Total - 1.0 mg/100 ml.  Indirect is Total minus Direct.

Hugs,

Connie