Lost Son's Updates on Dad with Hep C, Part IV

Mike had an episode with sepsis prior to tp.

They gave him IV vancomycin and flagyl for 5 days as in patient. IV albumin and some other stuff. Then switched him to oral antibiotic and sent him home. I was scared but he rallied quickly. He was in hospital 1 week a month the 6 months before tp.

Now he is fine.

Hugs

ML

Confirmed that he has sepsis...they are still running blood work to see what's the best antibiotic for it. Meantime he is getting a general IV antibiotic.

He doesn't seem to have any of the advanced sepsis symptoms yet so I suppose that's good.

Another thing is his paracentesis we really feel was done wrong. 4 days later and he is still in a lot of pain. It's so bad that he is on pain killers just to tolerate. We all know that any pain meds are never good for the liver.

Alex,

Your Dad's MELD probably will get lower with this "tune-up", as they are known in our household.
Get used to plastic chairs and hospitals visits. Us caregiver's sorts spend a lot of hours parked on them ;)

Your Dad won't be released until they have his infection under control. No one knows how long that takes. Don't delay in the future. You can not plan around the many urgent needs and ER trips with liver patients. Big Hugs

I know. We sure won't delay, but actually there was no symptoms and the nurse herself released him so we had a sense of not worrying. Luckily he had an appointment at that time or else there is no telling what would happen. I hope he can get thru this.

One thing I wanted to ask was with dual listing I wanted to make sure out current facility doesn't stop treating as best they can...sounds silly but I get paranoid about those things. Also, I don't want to transfer care to the other facility. I read that that is an option but I want him to keep treatment at our current place. Is that basic or do I need to specify?

WD,

Yes I have heard back and I started the process. I spoke with our social worker today and let her know what I was thinking. Tomorrow I am speaking with the Coordinator and then I will be in touch with the other transplant center. Obviously with my dad being in the hospital at the moment I want to get him through this hurdle first.

I spoke with him about the dual listing and another transplant center. Surprisingly he didn't show TOO much resistance or hesitate. He says 3.5 hours is crazy but I told him for a second chance at life 3.5 hours is nothing! Having said that, I do understand that having to make that trip often can take a toll. Which is why I asked about the treatment. But it's logical that he would need to go to the other for more than just a transplant. It's just a matter of how often and for how long.

Then the whole relocation scenario kicks in. There is certainly a lot to consider and plan for.

Alex,

Mike was in hospital a week a month, but the admitting cause varied: sepsis (ecoli in blood), acute kidney failure, acute pancreatitis, and acute kidney failure, hyponatremia (low sodium), and very low white and red blood cells--there are technical names for that too.

The put him back together with albumin, sodium restriction, IV antibiotics, procrit and neupogen, whatever...till he was "tuned up" as themiz would say and send him home.

One of our posters mentioned that albumin has a 3 week cycle...since Mike was getting some with each hospitalization he'd be okay for 3 weeks and then Id bring him in again...only way back then I didn't know about the albumin cycles!

The time he had sepsis he was very sleey...slept about 23 hours, rejected all fluids, and was difficult to rouse. It was Connie (.....moment of silence) who posted here and told me to get him to the ER...and how right she was.

This was the first real hospitalization when we knew he was really really sick and took him to a community hospital near our home. They had no clue what too do. We had an appointment with a hematologiest after this because of the bloods being so crazy...she did his labs and with his INR off the charts and LFTs crazy, she got on the phone to the Jackson transplant center in Miami and got the ball rolling....all subsequent admissions were in Miami....no more folks who had NO CLUE taking care of my Mike!!!!!

By the way, most centers have housing available for cheap, on campus, kind of like Ronald McDonald house. Talk to the social worker at the new hospital and figure that part out...because the hospital will work with you and cluster appointments over 2 days if necessary to limit the number of trips over to the second hospital.

Also, many insurances will cover a per day allowance for housing if the hospital is over xxx miles. Even our Medicare does, but we are too close at 125 miles to take advantage of it. Check it out.

BTW, we kept a suitcase packed for each of us with 3 days clothes and double tooth paste, tooth brush, saving stuff, shampoo, etc. so we could leave at a moment's notice day or night. Since we decided to get all his care at the TP hospital, we could no longer call 911 except for maybe a bleed or cardiac episode....I was determined to have his REAL docs provide all his care. The day of his TP call, he was there in 1 hour and 30 mimutes....cause he was all packed AND his daughter drove him ( she is a paramedic and ambulance driver....she wasted no time!!!)..

Susan and carol, in your cases what causes the sepsis and is it pretty easy to recur after the first time?

I am supposed to get an update from the nurses today but he will for sure be in til at least mid next week.

He seemed a bit better last night and I left feeling better. Have not called him yet today but plan on spending all weekend by his side.

oops, hit the wrong button.

Anyway, since the 4 weeks of at home IV antibiotics I went on half dose daily oral antibiotics, and I will say that while I've had other issues, I have not caught one germ of any sort since starting the half dose of levequin per day.

Thinking of you and your dad.
Susan

I was told they are checking on a source they believe came from the mouth. They said what they see is typically from there.

He is on his third paracentesis. (1 a year ago, 1 Monday and one(for tests) yesterday) My brother called me today and was concerned that he called my dad and my dad didn't initially realize it was him. He actually told him he thinks he had the wrong number...Then my brother told him who he was and he was back on track.

I know yesterday they were asking him questions just to check as I know it is one of the symptoms.

Mom is not doing too well. She is usually the optimistic one and running a mile a minute (Even with her arthritis) but this time around she is very quiet and it's easy to see lots of thoughts and fear on her face.

I don't think she knows anything I don't, but as you all know I am sure in those situations there are lots of things that are said between partners in private that no one knows about. She plans on staying overnight today just to spend the weekend with him.

Oh I know it. Rough doesn't even begin to describe it. She would probably be beyond help. She doesn't know any life besides with my dad. But she is VERY dependent on him. I gotta say that I have been the strong one and oddly I feel a sense of calm at times because I feel in my heart he will have a happy outcome. I know that is not the norm, but I guess that is me being strong.

But I must admit that if he was to pass my life would be flipped upside down. I would have to take over all of my dads things as my mom doesn't handle any of the finances, vehicles, home repairs etc. Plus Financially I would need to step in as my sister is in college. Worse of all, I'd hate to know my mom and sister are all alone.

It is a fear I am not ready to give in to. But I do often think of what I will do. I just need to keep trying.
But more importantly my dad needs to hang on a while until he can be considered.

It is amazing how you think of this situation and I step back and analyze how different my life will be between a good outcome and a bad outcome. I'd either be a complete mess or a whole new man. Talk about stressful!

Here now and YIKES! His belly is like a rock. But they won't drain him nor give him any diuretics so his kidneys aren't affected. But he can't urinate much at all and everything is going to his stomach and causing gas pains.

Anything I should be asking for? Also, should I be more insistent with the staff? I like to let them do their job but a family member told me I need to speak up more....lol

Alex -

Something you can do or have your dad do is to weigh in every morning and record it. It's a good way to help quantify how much water he's retaining at a given moment. Kinda hard just by looking sometimes - he looks rather big or his "belly is like a rock" can be misleading. It's a great way to keep your eye on the ascites/edema status and I've got records going back over a year that I can show my doctors.

Hi Alex, How are things going today? Big Hugs