Liver Disease & Stroke

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Concerned & Loving Daughter
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/16/2007 4:11 AM (GMT -6)   
Hi, my name is Kelsey Claire and I'm 19 yrs. old. At the moment my father, Rodger Claire, who is fairly young, in his 50's, is currently in ICU in critical condition at Scripps Memorial Hospital in Encinitas, CA. He had hepatitis C when he was in his early 20's and since then has never had many problems with it until now. Over the years it seems as though his liver damage has gone into cirrhosis. This November he was admitted into the hospital for a week or so, the first time he was told his liver had become so bad. We immediately started him on all his medications, which my father was very precise about taking, and he immediately cut all alcohol out of his diet (not that he was ever a big drinker, but he did enjoy some wine with dinner at night previous to the hospital visit.) Unfortunately, On Dec.9, close to midnight, he suffered from a brain stem bleed because of his liver complications. The Dr. was extremely negative, but since then my father has made great strides. His mental acuity is 100 percent there, he has full usage of all his limbs (arms, legs), but has been off and on a ventilator for his breathing. It seems as though he cannot 100 percent recover from it because he still gets so weak from all the complications with his liver, such as raised ammonia levels etc., much like a 'Catch 22.' The Dr. has been nothing but negative from the very beginning. It hurts to see my father improve so much (because he is such a fighter), yet not have the Dr. acknowledge it at all. The Dr. continues to push 'Letting my father go' (essentially put him on a morphine drip) saying that no one would consider him for a liver transplant because of his stroke (as far as we know my father was on the transplant list after his innitial visit to the hospital in Nov., yet have gotten fuzzy answers as if he is still on it as of the moment). My father continues to let us know how much he wants to fight and overcome this and his family, my mother, me, and my sister, are right there with him, we are willing to do everything and anything to get him back. I feel so helpless at the moment of what to do, but it just feels as though there MUST be something. My father is such an amazing man and has shown incredible strides through all of this. He is a writer, formerly he wrote a book titled 'Raid On The Sun,' and has a book coming out this spring, 'Operation Entebbe.' I will do anything in my power to help him and was wondering if any of you had any suggestions, words of advice, or comments. Thank you SO SO SO much for taking the time to read my story and any help you have would be so greatly appreciated
Loving and Worried Daughter

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 1/16/2007 11:28 AM (GMT -6)   

Hi Loving Daughter,

First let me start by welcoming you to our forum and offering my positive thoughts and prayers for your father's continued fight and survival.

It sounds like your father's doctor made up his mind that there was nothing to do after the brain stem bleed and doesn't want to see the actual person in front of him. Push for a second opinion and a third or fourth until you have a medical team that listens to family and patient, is proactive and gives you options. I can't say about qualifying for a liver transplant as my husband, Gene, is not eligible for one so I'm not as up to date on requirements as others here may be. But I do know that Cirrhosis and encephalopathy are an up and down battle and it doesn't sound like time to throw in the towel.

Hugs,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 1/16/2007 1:25 PM (GMT -6)   
hi kelsey, barb is right you have to push for a second and third opinons, your father is a young man yet and not ready to give up, please dont take any stuff from these drs you tell them what you want remember they are working for you. ask why the morphine, they normaly dont want to give pain meds to people with cirrhosis it will cause the amonia levels to go high, it could be because of the brain stem bleed. im not a dr but please push to get a differant dr in on this. my father to had cirrhosis, but i lost him because he was older and not a candidate for a transplant. its tough to watch them like that, it almost like somebody has to be there all the time, dont be afraid to question and question these drs and more questions, tell him the dr that your family want answers, or we want more opinons thats your right remember you and your family now have to fight for or father, when he is with the program then he needs to ask questions. you should not get fuzzy answers you need straight answers. please keep asking untill you get a straight answer, i find it hard to believe there nothing else that you can do. i know it is a very helpless feeling because part of it is because you dont have the right dr, ask why he is so netative. my father to was a fighter to but his age was the problem. please get a gi dr in on this to. do not be afraid to ask questions please!!!!!! its a balanceing act with cirrhosis, you fix one thing and another goes wrong, but it can be done. questions, and more questions. tell them you want answers. keep asking about liver transplant!!

myfathers child
annette

my thoughts are with you, please let us know whats going on!!

Concerned & Loving Daughter
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/16/2007 3:10 PM (GMT -6)   
Thank you both so very much for your replies. My mother and I are looking into getting him transferred to another hospital right away, maybe they will be able to offer some hope. I had another question: Recently my father had resistance with the food they were giving him. They have to drain it out before they start it up again. The Dr. is acting as though this is the final sighn of HORRIBLE news.. Is this a common thing with liver disease?

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/16/2007 6:25 PM (GMT -6)   
Welcome to the forum. First of all I am very sorry about the tough time you and your family are going through right now. My thoughts and prayers are with you. My Father's daughter and Barbara are right. Get another opinion and get him transferred to a hospital where they do liver transplants. The hepatologists there know their stuff. Whether or not he will remain on the list is for the the transplant team to decide. My husband started out with focal siezures and then according to a neoroligist, he had a small stroke. His transplant doctors are not so sure that he had a stroke period. But strokes can be a cause for people not to make the transplant list or for getting taken off the list. Some doctors are more compationate then others. Every hepatologist that my husband has seen has been really great. Now his GI doctor on the other hand sounds like your father's doctor. He's cold and gives us little hope that my husband will even make the list. Needless to say we go see him as least a possible. Please take care of your self as you will not be much help to your dad if you fall apart. That's one lesson I almost learned the hard way. Hang in there...........Pink Grandma

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 1/16/2007 7:06 PM (GMT -6)   
kelsey, that question i dont know, because my father was eating before he got bad. does he have a feeding tube down his nose? i think thats the best thing you could do is to transferr it will make you fell better, because your not getting any striaght answers. pink grandma is right you do need a hepatologist they do know thier stuff. this disease can even be harder on the caregivers, because you have so many drs to deal with. make sure you make a list of questions to ask. and it always helps to take turns staying at the hospital so no one person falls apart or gets sick. if you have somebody in the family or a friend who is a nurse or even a paramedic who knows what questions to ask that would help. if you can right things down.

i wish you the best of luck, my thoughts and prayers are with you.

annette

p.s. if you need somebody to talk to let me know, i dont know if i can give you my cell phone number on this forum im sure tish can let me know.
good luck!!!!

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 1/17/2007 2:10 AM (GMT -6)   
welcome concerned daughter:) I ,too,am sorry about your father, but dont give up ,for sure,,this disease can go up and down for a while,and it sounds like hes a fighter! Enjoy each day and as the others have mentioned,,,,,,,get more opinions! hope to see you back,this is a wonderful place for support,take care
trish 
Moderator for Hepatitis Forum 
 
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 1/17/2007 9:42 AM (GMT -6)   

Hi Kelsey and welcome to HW. Sounds like everyone gave you some good advice. I would keep pushing for another opinion also. I would also ask questions point blank, and not let up til They gave clear answers. Does your father have a feeding tube? Is he having bowel movements? I am not sure if your father has a hepatologist, but it is very essential, as they are very skilled in treating the liver. Be sure to keep a pencil and paper handy, so you can write any questions down that come to mind. Please know that you are in our thoughts and prayers, let me know if there is anything we can help you with!!

Teresa

P.S. Annette, you can exchange phone numbers via e-mail. The safest way to do it!


Nealwayne
New Member


Date Joined Apr 2007
Total Posts : 2
   Posted 5/21/2007 11:51 AM (GMT -6)   
Try this website it may help with some questions you have.
God bless you and your father.
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