Moms Sick - need lots of advice

Connie when she first went into the hospital they thought she had a stroke and the neurologist that my father saw was there and took care of my mom along with a GI doctor. They weren't sure what was wrong so they had both doctors checking her out. The appointment with the neurologist tomorrow is a follow-up from the last time she went in.

Thank you Mayflower, I am very glad I found it.

He actually did know it was HE but the GI doctor said it wasn't. The neuro guy was pissed. She is going back just for a follow up for the stroke I think. I am going so I will find out.

She needs a Hepatologiest! Affiliated with a major hospital. Carol

Perfect, C

And he's a Hepatologist, right? Perfect!

Mine too...I get to feeling like I know everyone and want the best for each patient! At least to get the best help available. Hugs, Carol

I am so sorry for your loss. That is too young. It's a shame medicine doesn't move as quick as some of these diseases.

Thank you so much! You do understand. I sometimes think nobody knows just how much I love my mom. I know it's selfish but that is what I think. We are so close it just hurts thinking about this.

I truly do appreciate each and everyone here who gave me advice, a shoulder and some prayers. It means a lot.

I will be asking for all kinds of questions to ask the doctor so thanks in advance. ;)

Hi.

From my experience the most important thing is to write down any questions you have AND have a way to write down the answers you receive. Cirrhosis is a very complicated illness so it is smart to have the excellent words the hepatologist says as I have seen a lot of generalizations posted in different forums which really doesn't help in understand what it truly going on. In the limited time available you are bound to forget a question that you have. So have a writing pad or laptop or iPhone type device that has your questions AND allows to so writing down the doctor's answers. Again in such a high stress environment it is easy to forget what exactly was said.

From the Mayo Clinic website combined with my own questions off of the top of my head. Please pick an chose what is appropriate for your situation...


List your questions from most important to least important in case time runs out. For cirrhosis, some basic questions to ask your doctor include:

* What is likely causing the cirrhosis?

* How severe is the damage to her liver?

* Is there a way to slow or stop the liver damage?

* Is my mother well enough to undergo hepatitis C treatment with the new triple therapy? (If she is genotype 1)

* Will she eventually need a liver transplant?

* What are the treatment options?

* How can she protect her liver from further damage?

* Is it OK to drink a small amount of alcohol or smoke if she might need a transplant?

* Are there medications that can hurt her liver?

* What signs and symptoms of complications should we watch for?

* Are there other medications and lifestyle changes that can relieve some of my mother's complications from cirrhosis?

* Are there any dietary or activity restrictions that she may need to follow?

* (If she has these other health conditions please mention them). How can she best manage her xxxxx as well as her cirrhosis? Should I see a specialist? What will that cost, and will my insurance cover it?

* What is involved in the workup for her to be listed for a liver transplant here? What tests are involved? How long will it take to go through the process?

* What kinds of tests will she need to confirm the diagnosis? Do these tests require any special preparation?

* Is there a telephone number I can call to reach a nurse if something comes up with my mother's condition that I do not understand and need help with?

* Are there any brochures or other printed material that I can take with me? What websites do you recommend?


* In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment.


After the appointment think about how you related to the doctor. Is this a person you trust with your mother life? Do you feel there was good back and forth communication. Connecting with a hepatologist at a transplant center is one of the most important relationships yourself and your family will ever have. It will go on for the remainder of your mother's life if she needs a transplant. This doctor will be the center of all medical treatment your mother receives, so it is very important to build a good relationship with this doctor (this can happen over time) and feel comfortable that they have the best interests of your mother in mind. There will be many ups and downs for anyone with advanced cirrhosis so this person will be your medical expert which is one of the main pillars in managing this disease. The other pillar being the support and love she receives from those around her which will help her to deal with the psychological issues of dealing with a potential life-threatening disease. Actually I find myself that the love and support I receive is even more than the medical issues as I have a internationally renowned hepatologist and a lovely. caring human being as my doctor. I have been seeing her for 4-5 years now so we are very close and I trust her to do whatever she can to keep me alive. At the same time I do my part as a patient. You are supporting your mother fantastically, so she will have the best chance of getting through this. What more could anyone ask for? Ant patient would be grateful to have someone like you making things happen and taking care to make sure they have the best medical treatment available.


Best of luck with the appointment!

Sorry for any typos. My H.E. is acting up a bit there days...

Hector
Hepatitis C, End-Stage Liver Disease and Liver Cancer.
Waiting for a liver transplant. Hopefully at the end of the year or early 2013

Here are more:

What constitutes "an emergency" for my mother, that would have us call an ambulance or bring her to an ER?

Should we go to a local hospital or to the transplant hospital location in an emergency?

Let us hear from you after the appointment.

Carol

Carol thank you for that question. That is what I forgot to ask yesterday. I have had two arguments with my step-dad about my mom needing to go to the hospital. I will ask that for sure!!

Thank you Carol. My mom is about two hours away from the hospital so I will ask about those also. You mentioned bleeding, from where?

Thank you. My mom mentioned bleeding from the frequent bathroom trips and was wondering if that is something I should worry about.

Exactly.

Hugs,
Connie