RE: Looking for a livecialist that will LISTEN

[Guest guest]

Hi Twila,

I am Diane Chandler. I was the caregiver for my husband who died of liver

failure in January, 2006. His was attributed to his Type II Diabetes. I

now have the same diagnosis. My hepatologist is at Vanderbilt and is a

3-1/2 to 4 hour drive. He is a very intelligent young man, but his bedside

manner wasn't the greatest. However, when my labs and a CT scan indicated

that I may have liver cancer, his whole attitude changed. I am now

thinking he may actually turn out to be a very good fit for me.

Has your husband seen this doctor more than once, yet continues to have a

difficult relationship with her? If so, definitely seek another doctor.

It doesn't matter how smart they are if we can't relate to them and they

won't list to what we need to say. If he has only seen her once, my advice

would be to give it a second chance. Doctor-patient relationships often

take a couple or more visits to work out. Also, and I don't mean this to

be judgmental at all, if he is not quite happy about even seeing the

doctor, it stands to reason that he will look for any and all reasons to

discontinue seeing this doctor. My husband was very much like that.

Didn't like doctors, didn't trust doctors, didn't need

doctors.........unfortunately, they are sometimes necessary.

As for the tests, they are very expensive and repeated regularly. My first

visit with Dr. Chung at Vanderbilt was $2965.00 when the labs were added.

I have Medicare and will have to pay a good portion of that. I have a

payment plan in place for paying my medical bills because they are seeing

me not just for cirrhosis, but for an incurable digestive illness as well.

I will not pay off my bills before I die even if I live to be 100. I have

just entered into a new and costly phase because I need testing to find

whether this mass on my liver is cancerous and if so, what type cancer it

is. Dr. Chung is consulting with doctors from Mayo and s Hopkins

because the mass does not present in the " normal " fashion....whatever that

means! Anyway, the bills are going to be monumental, but again, I just

pay what I can with the payment plan and move forward. I've pretty much

had medical bills since I reached the age of 25, even with good health

insurance coverage.

As to refusing to have the tests, it is absolutely your husband's right to

do so. It is his body and he alone has the right to make those decisions.

My own husband refused to try for a transplant due to some genetic issues

with his liver disease and the fact that he just didn't believe in

transplants. As much as I loved him and certainly would have helped in any

way to get a transplant, it wasn't my decision to make. Each individual

has to walk their own path with peace about their decisions. That is why

it is so important that we all have the freedom to do as our heart dictates.

I can't help you with a suggestion for a hepatologist because I live in

Tennessee. My only advice to you would be to continually love and support

your husband in whatever decision he makes. It won't be easy. Much of

liver disease is asymtomatic until it is much too late to help. Knowing

all you can as early as you can is vital to keeping yourinself as healthy

as possible for as long as possible. However, that remains his decision.

Have the two of you had a real face-to-face conversation about his illness

and what it means to his family? If not, and you can get him to do that, I

would highly reccommend that you do so. Understanding where is coming from

will make this easier for you and probably for him as well.

Whatever decisions he makes, I understand where you are coming from. I've

lived that time of life. My husband and I were married for 33 years and

had been together for 35 years when he went home. I am praying for you and

for him. This is not an easy path whether he decides to do the tests or

not. Please know there is a group of people here from all sides of this

illness and we are praying for you and standing with you as you care for

your husband. If you could find a local support group for terminally ill

people that he would attend, it could prove to be immensely helpful. If

you find one and he won't attend, go alone; the support you receive there

could be very helpful to you and could provide you with a local network of

people who understand what you're facing and can be locally available to

you when things are really bad.

Hold on to yourself and do what you can for your husband. For me, my faith

is what sustained me. I honestly don't think I could have survived losing

my husband without my faith in Jesus Christ. I absolutely know I couldn't

be facing this again so soon and in my own body if I did not have Him to

lean on. However, you sometimes need a flesh-and-blood human being to be

there for you. There is no shame in that.

I am praying Twila.....................

Many hugs..............

Diane C from TN