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aquasun
New Member


Date Joined May 2007
Total Posts : 3
   Posted 5/31/2007 4:39 PM (GMT -7)   
Hi everyone - i'm new here, and found this site while looking up info on my dad's ESLD over the pat months.  I'm really overwhelmed right now.  My dad and i have never had a good or close relationship in all my 36 yrs.  He is dying of end stage liver disease and now wants me to be his main caretaker.  I have been going to help him daily (put him in hospital a week ago because he was disorriented and couldn't move to answer door, or phone, or go to bathroom.  Brought him home 2 days ago and saw a hepatoligist today.  Dad has serious ascites, jaundice, confusion and slight delirum, his kidneys arent quite right, umbilical hernia, and now bleeding from the anus.  He refuses to let me get him in home nursing or put him in a care home.  I can only be there so many hours a day (I live 30 mins. away and have children and am myself disabled).  We are waiting on a call to get him evaluated for liver transplant at UPMC.  I feel like i can't do everything he needs to take care of him (he shouldn't be alone - but does live alone) and manage my own illness and life. 
They won't do paracentisis because his blood is so thin (nomatter how many transfusions) so dr. today increased his lasix to 80mg and aldactone to 200mg and put him on antibiotic for infection of bladder or ascites (not sure).  We cant get hospice because he wants to try for the transplant - even though it seems like a longshot, even to get on the list.  He is severe alchoholic but has not had a drink in 6 months (as far as i can believe).  I just wish we could get a more definitive answer about him.  They say his only shot is a transplant, yet they wont drain his fluid or take aggressive measures to make him more comfortable in the mean time.  There is so much more i could probably write, but this is the gist of it for now, i guess.  If anyone can relate or has an idea of our future days or prognosis, i would so appreciate it.  It's all just so overwhelming and especially considering he has never had any relationship to me till now.  I was informed when i asked him about living will and power of attorney that I am completely out and my aunt (godmother) is the only one in his will and is his power of attorney.  She and I are in total agreement about everything so that isnt an issue.  I guess it just hurts and stings that he expects / wants/ needs ME to do everything for him now and yet I am basically a nothing to him as far as the will.  I don't want his money - it just hurts alot.

Patristopher
New Member


Date Joined Jun 2007
Total Posts : 6
   Posted 6/7/2007 6:22 AM (GMT -7)   
Hi Aquasun! So sorry to hear of your dads condition. I am new here and am going through a similiar situation with my mother who has Hepc and now cirrohsis with major ascites. Her fluid is collecting in her right lung and has had 9 thorocentisis's since the middle of March. I think the reason they cant drain your father is possible bleeding since his blood is so thin. It is so frustrating waiting on the medical profession and trying to take care of your own life as well. I have a 4 and 6 year old and my mom still lives alone as well. No dementia yet and shes not  yellow and we have been driving a 5 hour round trip to Shands in Gainsville to see if they can put in a TIPS shunt to help with the acites. She is 72 and we believe she contracted her Hep c in 1968 after a blood transfusion or in the late 70's as her boyfried at the time had Hemophelia and had had numerous transfusions. We are going to look into possible transplant as she is otherwise healthy but her age may be too old. She used to drink but has been clean and sober for 28 years. You will be in my thoughts and prayers!

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 6/7/2007 11:29 AM (GMT -7)   
 hi guys, i think the transplant age is 65 i,m not sure if other states are differant. my heart goes out to both of u. i went thru this with my dad for six  months, we didnt find out untill july of 2006 that my dad had cirrohsis he was 87 at the time no drinking i,m sure he had it for a while he had some anemia on and off for 4 years and gi dr kept going in and fixing but didnt have a glue that it was cirrohsis gee what a dr. im still very angery about that, had to go 60 miles away to find out. maybe if we would have found it earlier he would have been more comfortable. aquasun, its hard to leave them and almost impossible in his stage. they have to get the bleeding under control before they can do anything else. if you have other health problems yourself then maybe u and your aunt need to gang up and say hey we just cant take care of u 24/7 because thats what he needs right now!! maybe some place close so u can check every other day or everyday. my father was never yellow , he lasted only six months untill he passed what a horriable disease this is, the caretaker gets the brunt of it all. its even harder if the person doesnt respond well or  just plain doesnt listen, it is very overwhelming i was on a dead run for six  months straight there were times i couldnt go on so i thought. at the end stages they stop responding to meds and the kidneys dont work so well then comes the coma like stages and they have a hard time talking and they know that my father was aware of that. he say that i cant even talk anymore. it was very heart breaking. towards the end he sliped iinto a coma because nothing was working so i told the dr to just make him as comfortable as you can, he agreed and he went a day and a half later. i knew in my heart he didnt want to suffer anymore and i couldnt stand to watch it anymore, it was for the best. if your sick also it will be terrible for you. good luck your in my prayers. my father hadnt drank for 25 yrs and never much no hep c b a, the only thing we can come up with is he worked in a chemical factory for thirty years, or some meds he was taking. to patristopher the medical professionals have a lot to learn about when it comes to bed side manners they will make u wait untill u cant wait any more. good luck to the both of u.
annette sad myfathers child

Patristopher
New Member


Date Joined Jun 2007
Total Posts : 6
   Posted 6/7/2007 12:18 PM (GMT -7)   
MyFather Thanks so much for the reply and the info. I just came from a doctors appt. with my mom and now they want to schedule a peracentisis along with the thorocentisis.! I just wonder how long this will go on.  I lost 1 sister in Oct of 2006 murdered by her boyfriend and my other sister 4 weeks after that from a 21/2 year battle with cancer1 Thought I was out of the woods for a while and now this! I just hope she wont have to suffer for years with this. I am also reading info on live donor donation but my hubby is against me doing it because we have to young boys! I did not even know this was an option until I read about it last night!Anybody know of anyone who has gone thru a live donor donation? Thanks!

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 6/7/2007 3:20 PM (GMT -7)   
sad  patristopher, u have been threw more than one should in a life time, don,t know anything about live liver donors, but have heard its being done, it would all depend if its a match and what shape the donor and the person recieving the liver is in. but i can see your husbands point. hang in and good luck to u all
annette

Patristopher
New Member


Date Joined Jun 2007
Total Posts : 6
   Posted 6/7/2007 3:31 PM (GMT -7)   
MyFather I was wondering how long your dad was sick for? It really sucks to get cirrohsis and not even know how! I guess its one of those medical mysteries like those who get lung cancer and never smoked or not exposed to second hand smoke??!!Anyhow I guess they are going to treat my moms symptoms and after 5 weeks worth of tests we should find out soon if they can put in a shunt. I kknow they work for some and not for others>Just waiting! The medical profession is the big Hurry Up and Wait!! I guess you about have to drop dead in there office to get any immediate results! Sorry if I sound bitter. I am just so frustrated!

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 6/7/2007 8:55 PM (GMT -7)   
my father was sick for a long time we just didnt have any good drs to pin point what it was. it started with my fathers legs swelling i would say 8 or 9 years ago drs just boiled it down to age and high blood pressure. then came the aniemia, about 4 or five years ago one of the supposed best gi drs would fix all the bleeding blood vesils, excuse spelling. i was told it was a birth defect, but no problems before that. so u tend to believe one of the best or so you think!!!! weakness in legs. he took liptor for a while dont know if his internist was checking liver counts should have, he had blood work every 3 or 4 months. when i look back he had some signs for a long time i to just thought it was old age, yes he was getting older, he kept up with current news, would send u to store new the correct amount of his money to the penny, then around june he was getting a little confused and he even new it. he fell and hurt his knee so we went to our local hospital and i had him shipped to uh up in cleveland july 4th that week they ran every test u could think of, thats when we found out, down hill from there. tipps does help a lot of people but it still surgery hope shes up to it.
i will say just keep asking questions, some of the drs will beat around the bush put them in a corner and make them explain. always questions make sure u have a good i mean a good gi dr and liver dr. dont feel bad about being bitter thats all part of this disease. i,m still bitter because i dont know how my father ended up with it. just a very hard working man who went to work every day to take care of his family. i cant change the past. my fathers at peace now.
hope things go great for family, my thoughts are with u
annette myfathers child

Patristopher
New Member


Date Joined Jun 2007
Total Posts : 6
   Posted 6/8/2007 7:07 AM (GMT -7)   
To MyFather:Thanks for sharing your story! So sorry you all had to endure all this!! It sounds like your father went through quite an ordeal. We are going to Shands teaching Hospital at University Of Florida a five hour roundtrip by car, Supposed to be one of the very best. I do realize she is on borrowed time even with the shunt ( they have done all the tests so we should know soon if she will be getting one) i just hope there is a way to keep her a comfortable as possible until she passes. The doctors over at Shands have just finished up all the testing and that took 5 weeks some here in Daytona and some over there at their hospital so I guess know we are looking for answers! Thanks for your support!Patti

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 6/8/2007 9:05 AM (GMT -7)   
good luck patti, u are doing everything u can, never second guess yourself about your mother, a lucky lady to have u. dont count her out u will know when the time is near, she just might fool u. its been nice talking to u. have a nice day, and god bless
annette

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/8/2007 10:08 AM (GMT -7)   
Patrisopher, are you in north or south FL? I hope Shands in Gainesville is better than the one in Jacksonville, which is very slow to do anything and doesn't have the knowledge and expertise to perform the very latest procedures. You said it took 5 weeks to complete testing. It could be done within a week, with results and a plan, at Mayo Jax. As far as transplant, Mayo has the shortest wait time of anywhere in the country. Just wanted to pass on this info to you.

Hugs,
Connie

Patristopher
New Member


Date Joined Jun 2007
Total Posts : 6
   Posted 6/8/2007 11:23 AM (GMT -7)   
Hep93 we are in Daytona Beach. I did not realize there was a Shands in Jacksonville. The testing took 5 weeks as they did a few tests in Gainsville and a couple here in Daytona. I am not sure if she is too old for a transplant as she is 72. I found out after the fact about Mayo being so great! I wish we had gone there first. I know Shands is 8th in the country as to number of transplants performed but we may have to give Mayo a call!!! Thanks for the info!!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/8/2007 3:34 PM (GMT -7)   
Here's a link for you, Patristopher:
http://www.mayoclinic.org/liver-cancer/

Patristopher
New Member


Date Joined Jun 2007
Total Posts : 6
   Posted 6/8/2007 6:16 PM (GMT -7)   
Thanks hep93! I already emailed them and they already replied with some preliminary info! Thanks so much!!! Patti
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