Stunned at progression

First of all, thank you all for all of your discussion post. I have been reading through them, and I had been feeling at a loss -

I picked up my husband from the airport 2 weeks ago, he had been gone 12 days on business. I could hardly recognize him.

He was so full of fluid and jaundice.. The water retention has crept from his lower extremities all the way to his diaphragm. He will not go to the doctor.

We just started a new business, of course no insurance - BUT he quit cold turkey on the drinking. He has been on OTC diuretics, low sodium, handful of supplements (milk thistle, dandelion root, B12) and flushing his system with water, tea etc.

He states he is feeling  better, his feet are better. But I see it different. The fluid is still there, he is short of breath.. and not to be graphic, but the retention in his testicles is shocking.

It seems like in a matter of a month, our entire life, marriage took a huge flip. I am grateful he has stopped drinking, otherwise we would have nasty arguments to go along with this..

Can this turn around? I guess he needs to figure out what the status of his liver is? I am terrified of him returning to work (he travels and is usually gone a couple of weeks.) His work is labor intensive.. sigh.

I appreciate yous..

Thank you.

I am printing your response, as well as some other threads -

It's too bad on my part, I am getting at the point of feeling some anger here, and deception. I know he has to go. :/

Stunned,

I hope you take Ziff's advice and get him to the ER. The shortness of breath alone will get him right in, and it sounds like he needs it. He is "flushing his system" yet you are surprised he is retaining fluids?

Go to the ER, and worry about payment later, rather have a bill to pay off over time than to have a dead husband.

If he has hepatic encephalopathy (HE) it would explain him being unreasonable about getting emergency treatment, so there's your ace in the hole.

p.s. swollen testicles are very common in ESLD, that's the least of his worries

Thank you everyone -

He finally went, and is under good care. As you all probably know, there is lots happening today.

What is TIPS / TP ?  I asked a nurse, she had no clue what I was talking about.

And surprise, he is on a cardiac floor, heart failure as well. :/

Megan

No surprise Stunned, I would've bet money on congestive heart failure with that shortness or breath (SOB), though it can result from a sick liver too. But I think heart takes priority, hence his placement in the cardiac ward. I'll bet he was barely able to walk without stopping for breath, right?

I'm sure they took him right in with no waiting, sudden persistent SOB is a VERY good reason to visit the ER.

Not many people would know what TIPS is, even in the medical profession, unless they were involved with liver disease at some point.

Glad you listened to us folks, even though we're not doctors, we do know SOMEthing after all we've collectively been through. Are they having a hepatologist look at him too?

All the best to you and hubby, keep us posted.

Thanks again, everyone.

The CHF isn't too bad, echo came back at 45% - MD feels he could improve on his own as his health improves.

Atrial Fib (that has probably gone on for a long while) is present, but heart rate now normal.

Cirrhosis is advanced. Diuretics working well, and the last part of the blood work that has been stubborn (bilirubin) is finally coming down.

What I can't believe is the response of the GI Docs. I know they have to be tough, but holy smokes. A couple of them were brutally cruel. Then they wouldn't follow up with the orders (like a CT Scan) when they told us they would order it. 

As far as a transplant, we have been told all weekend that could be in the future, but last nights doc told him to get it out of his mind, he will never have insurance coverage to cover it.

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I suppose in a way, for us, it is a good method. We are both so obstinate to prove all of them wrong. But I wouldn't blame anyone for unhooking and giving up the way they treated Mike...  One GI doc said, 'Look at me, I am just a couple of years younger than you..it is too bad, but there is nothing that can be done.' I hope Mike runs into him on the golf course this spring and leaves him in the sand trap.

I am concerned about his working as he commutes by plane.. that is going to be tricky with meds I suppose? I also asked for records for Mike to carry with him while out of town - I thought it would be helpful in case he ran into trouble. They sure don't want to hand them out readily, do they?

Again, thanks to you all - I (we ) sure appreciate your time and openness to share your experience..

Megan

Hi there,

We are outside Little Rock, AR.

It is so frustrating to me, I worked in social services in Washington State for 12 years.

We do not have insurance currently. In fact, we just opened a business in May - so, upside down at the moment profit wise. Heading to apply for state coverage on this hospital bill, hopefully there will be some help.

Nice thing, is we are not tied here. We have only been here since May, and our business in in North Dakota...

 

How long ago did your husband stop drinking? If it hasn't been long, he would have to prove he no longer drinks and has been dry for at least 6 months, in order to qualify for a transplant. Not having medical insurance makes it tough to get treatment, especially in a state like AR.

Bad doctors or rude seem to be par for the course. Trust your gut and find a new one if your not happy. I saw a doc once and hated him. I followed his action plan but found another doc who has been outstanding.