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Update on Gene

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Posted 8/7/2006 5:17 AM (GMT 0)
Hi Everyone,

The first part of the week went smoothly except for the thoughtless hospice team. They actually discussed our issues with the new staff who started with chips on their shoulders. But I can deal with that as long as Gene has his medical saftey net.

This morning Gene told me he thought he had a mild heart attack on Saturday as he had sharp chest pain. Dr. Barbara has a different diagnosis. Gene lost five pounds overnight and had his typical symptoms of increased encephalopathy. I think he became dehydrated and had electrolyte imbalances; he is so delicately balanced and has had chest pains before in similar circumstances. He's forgotten about that but I con't forget anything.

Teresa, I'm praying Mark gets his new liver ASAP and that he doesn't need more of these trips to the ER or hospital.

Oh, I almost forgot; we have reservations at the Rose Hotel next weekend. Pray that we make it safely.

May everyone have a peaceful August.

Barb

Posted 8/7/2006 2:41 PM (GMT 0)
Hi Barb,

I am sorry Gene is having such a difficult time.  The balance between diuretics and dehydration is so hard.  How is it you know he is getting dehydrated?  What are the signs you look for.  The first time my father was hospitalized was because of sever encephalopathy... he had been tapped a couple of days before 15 liters and they believe he was dehydrated.  I know haw frustrating the process is.  Thinking of the both of you!

Samantha

Posted 8/7/2006 2:58 PM (GMT 0)

Hi Ma,

Hope Pa is doing better now!!!! I am keeping positive thoughts with your new Hospice team. The get away sounds so nice! Thank-you for your prayers!!

Love, Hugs and Prayers,

Teresa

Posted 8/7/2006 7:58 PM (GMT 0)
Hi Everyone,

I'm so out of it I thought I was posting in the August thread.

I guess since we've been dealing with Gene's end stage liver disease for over three years, I can pretty well tell what is going on with him even before things show up on lab work. He is so delicately balanced that just the slightest tweak sends him crashing per the oncologist. And the hepatologist says he can bottom out at any moment and without his rotating antibiotics he'd be dead in a week. So it's important to keep the problems from happening rather than trying to keep Gene from crashing which he can do in a few hours. I still haven't heard from his hospice nurse. The on call nurse yesterday said she would be checking with us today. Ha, ha. Hospice sees this micro management of symptoms as being stable hence their extended prognosis.

Losing five pounds in one day means it was five pounds of fluid. For Gene that is enough to cause dehydration encephalopathy. And enough to cause low potassium counts which give him chest pains. He doesn't seem to have an infection, bleed, high ammonia levels or high toxins and his blood sugar levels are manageable. So through the process of elimination I decided it was dehydration. Am I wrong?

Thinking of everyone,

Barb

Posted 8/8/2006 5:28 PM (GMT 0)
Just an update on Gene's condition. Kaiser thinks it was either an electrolyte imbalance or angina. His primary care doctor is on vacation and they just don't seem to get the fact that Gene is too medically fragile to go in to see a new doctor unfamiliar with his history. That's why he's in hospice.

Speaking of hospice, our newest chaplain has been taken off our case after he spoke about Gene not being appropriate for hospice and how the team discussed how we were the problem. Jennifer and Debbie, our two hospice angels want only the best people working with Gene and said again that Gene belongs in hospice and that is the end of the issue. I sure hope so.

And Teresa, thanks for all your information last night; you were more helpful than the medical people I've spoke to today. Incidentally, the advice nurse, who did get it, said Gene had a blockage that showed up in 2003; none of his doctors ever mentioned that to us. They were too focused on the esophageal cancer at that time.

Hugs,

Barb

Posted 8/8/2006 6:39 PM (GMT 0)
"Gene belongs in hospice and that is the end of the issue. I sure hope so."

I hope so, too, Barb! Hospice is supposed to reduce problems not cause or increase them! Hang in there!

Hugs,
Connie
Posted 8/9/2006 1:36 PM (GMT 0)
i would be pretty upset with all the hospice problems,just what yall need,more stress. i kinda know what ya goin through,as we had to change ricks home health nurse,,,,hm i have a story to tell ,will post it on the rick/trish thread
take care barb,and hope gene does better
Posted 8/9/2006 7:57 PM (GMT 0)

Ma, hope all goes smoothly from here on out with Hospice.

Hugs

Teresa

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