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Posted 8/14/2009 2:19 AM (GMT 0)
I wanted to introduce myself, I'm a daughter to the best father who has been recently dianosged with Crishoiss of the Liver. He has had Hep. C since 1998. He started to vomit up red blood approximately a week and 3 days ago. He was in the hospital for 3 nights and then released. They gave him 2 units of blood as his levels had been below 30, not sure what that means. He had the endoscope done and they found that he had bleeding but it had stopped. I can't spell or think of all the medical terms right now but I'm sure most of you know exactly what I'm talking about. After he was released from the hospital last Wednesday, he went to see his primary care manager and was basiclly told that they would do everything just to make him comfortable. Then Tuesday night, he started to vomit blood again. My mother called 911 and they rushed him to the hospital where he continued to vomit after arriving several, several times. They gave him meds to stop the bleeding, meds to stop his nausea, isulin as he has diabetes, and also morphine for sevre stomach pain. His stomach is swollen with fluid. So far they have only drained a small about of fluid to check for an infection. Today, the doctor suggested to my Mom and myself that my Dad should have the TIPS done. We are not sure if this will help too much at this point because of what he has to go through to receive it. He has to establish himself as a new patient with the only doctor in our area that can preform the surgery. He has to schedule several appointment with him at a different hospital. Right now, I'm not even sure he's going to get out of the hospital. I don't think he's on his death bed and I believe he has some life left in him but he's not egilable for a liver transplanet because after being told he has HepC, he continue to drink after doing two treatments with no success. I guess he felt like he was going to die so he might as well live life to it's fullest in a sense. Anyone know which direction we should turn to next? Should we have the TIPS done? I've been reading quite a few posts for several hours now and also the educational information post. Please excuse my mispellings, I've been up for two days straight and really tired.

 

HepCDaughter98

Posted 8/14/2009 3:02 AM (GMT 0)
HepC Daughter, hello and welcome to HealingWell. I am sorry that your dad is so ill and suffering so much. I'm glad that you read the educational threads. It will help you to decide what to do or how to come to some conclusion about the TIPS proceedure. The final decision for me would be #1 Can he survive the proceedure #2 What is the possibility of the proceedure NOT helping him. There are so many factors involved I think I would ask his Dr to be completely frank with you and your mom in the prognosis pro and con. #3 What happens if he doesn't have the proceedure? Make a list and then when you all see the Dr you can ask the questions. The current situation doesn't sound too good. He must have varices that are bleeding. Is he still drinking? If so the alcohol will continue to erode his esphagus which will make him bleed out more. The bottom line is no one can tell you what decision you should make. Evaluate all the facts, speak openly with the Dr, and ask your dad what he wants. (If he is alert and oriented). Try to be open to all suggestions that people make then make your decision as a family. Your dad may not want to have it done. That's why you should discuss it as a family. If he is not able to have it for some reason or he chooses not to then you will have to make other decisions. No matter which way it goes this will be tough to handle. Learn all you can about this disease. It will help you in many ways as time goes on. Please post whenever you want. Even if it is just to vent.
Posted 8/14/2009 11:01 AM (GMT 0)
Hello HCD,I am so sorry you have to go through all of this.It is very trying and emotional on the whole family. My husband has had all of the things you are describing. He has had 2 varices bleeds. Hospitalized so many times I can not count. He now has fluid drawn off every week.The last time was 11.5 ltrs. Because he has pulmonary hypertension he is not candidate for tips or fixing the naval hernia. But,he has pulled through every time. My suggestion to you is ask questions of your doctor. Read everything you can on the subject and ask questions again. It can be so very confusing.If you have to write everything down. THe most important thing is he has got to stop drinking.My husband stopped 5 years ago.I am sure that is why he has lived this long. Someone has to be his health care advocate and it sounds like that is you.Hang in there .It is reallly hard and sometimes you will feel like thowing in the towel. Find support any where you can because it really helps to have others beside you. My heart and prayers go with you along this journey. Mimi
Posted 8/15/2009 4:45 PM (GMT 0)
Thanks for all the responses. I now have some sense of which direction we should go next. My father was seeing a Hep. doctor and for some reason after his treatment for Hep. C, quit going. We are making an appt. with the same doctor again once he gets out of the hospital which should be soon since they moved him out of ICU yesterday afternoon. He's currently still on an IV drip, has morphine on occasion throughout the day, and receives insulin if his numbers get too high even with his diet control since he isn't able to take his met. meds. Should someone with liver cirrohis being drinking coffee? Apparently sometime this morning he got up from his hospital bed and went to the nurses station and go himself a cup of coffee. My Mom said she wasn't even sure if he drank any of it. They gave him for dinner last night some fried fish and french fries with juice to drink, is this an acceptable dinner for someone who is suppose to be on a 500mg low sodium diet? At what point should or will the hospital start to drain the fluid off his stomach? I just feel like this hospital isn't doing everything they should.
Posted 8/16/2009 8:10 PM (GMT 0)
Hi HepCDaughter.

I am deeply sorry to hear about your Dad.

Welcome to this forum.

The people here are extraordinarily supportive and I'm sure you will find the information invaluable.

For my approximately two weeks here, I know I have found it so.

Best,

Gwen

Posted 8/21/2009 9:07 PM (GMT 0)
Hi,

I am new to this forum, I am so glad to have found all of you, I have read so many postings of people going through the same situation as my husband and myself.  My husband has hep C and was just hospitalized last Thursday for extremely high levels of ammonia, he couldn't stay awake so my son took him to the nearest ER and thats when I learned about ammonia.  I am always trying to keep up on the end stages of liver disease but I wasn't familiar with this one.  He was discharged last Monday but now back in the hospital @ UCSF ( thank God )  the first hospital in the town we live is so horrible that I wouldn't take my dog there.   During his stay my husband fell which the nurses didn't tell me, he developed a hematoma ( spelled wrong I'm sure)  that spread all around his huge fluid filled stomach  so I took him to our family Dr.  who suggested taking him to UCSF.     he has received two blood transfusions, a cat scan, an MRI and numerous blood tests, his liver Dr. is also there! 

I'm really scared and not sure what to expect next, is there a chance his liver can improve?  I am also going to discuss with his Dr. about the living liver donor transplant, I have read a lot of info. on the surgery and would like to see if I could possibly become his donor.  If anyone has any info. for me regarding that I would sure appreciate it.  I will keep all of you and your loved ones in my thoughts and prayers.

Scared in Calif.

Posted 8/24/2009 3:13 AM (GMT 0)
Hi Rick,
Thank you so much for your response, that was so kind of you. I'm so happy that your still here and I will pray you will be here for many more years. I did post the right way just a few min. ago so I hope you have a chance to read it and find out what we are going thru now! NIGHTMARE !!!!! I really hope to hear from you again, your such a kind person.

Thank you,
Mary1
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