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

Carol, thanks for the new thread.

My dad is currently at the hospital getting his paracentesis procedure done as we speak. I hope this gives him some much needed relief. He also has his follow up with the Hepatologist on Wednesday. Hopefully things didn't get much worse.

We will see the outcome.

Just got word that he is done with the procedure. 16 pounds of fluid removed! That is scary to think. But hopefully it helps. I hear he is being his regular self joking around with the doctors and nurses.

However, they just told him that his white blood cell count is very high which they say is a good indicator of an infection. They gave him the option of being admitted or going home until his appointment on Wednesday...Not good.

Post Edited (lostson) : 7/28/2014 12:39:53 PM (GMT-6)

tm,

He decided to come home as he will be back on Wednesday. He felt a lot of pain after but feels much more relief. He even felt instantly hungry.

However, my sister says he feels exhausted and just wants to sleep which is what he is doing at home now.
I am worried about what that infection is. I would imagine given his state, fighting an infection can be a major issue.

Just left from seeing my dad...he was in bed and half asleep as he talked to me. He is still very tired. Also says he is in a lot of pain from where the needle was. Not sure if this is normal as he doesn't recall it hurting when he got it done at the hospital.

He did not look good at all and despite removing 16lbs of fluid, his belly still looks pretty big. The worrisome thing is his infection. He even mentioned he better get his stuff ready to stay at the hospital on Wednesday since he thinks they won't let him out. I tried to make him think positive. I hope he doesn't have to stay, although he will be under care, he gets so depressed at the hospital.

I truly hope he bounces back, but instead of instant relief he is feeling worse than he has the last few weeks.

The only positive is that I requested a half day on Wednesday to take him to the hospital. Work has officially become secondary (if that) in my life. I drew some upset looks for taking the time on short notice but I need to be there for my dad. I hope his news isn't too bad and he is able to come home.

BTW he is 5 classes away from completing his requirements. I really pray my father isn't one that a MELD of 21 is fatal...Because he is nowhere near a transplant yet.

Geez Alex, I don't like the sound of this.

It's bad enough when a "well" person has a high white count...in your dad's case, I wouldn't waste any time in getting treatment for it, especially as he just had so much fluid drained. Paracentesis has its own risk of infection so I don't know if I would wait til Wednesday. I didn't read that he got albumin, do you know?

I know you can't override Dad's decision, but maybe your Mom could persuade him. One day can make a big difference when it comes to folks with compromised immune systems and any sort of infection. He needs to be kind to his kidneys as well as his liver...in his condition, he will need them to be as healthy as possible.

As usual, all the best to your family.

LS -

Glad your dad's through his first paracentesis, kinda unsettling to think about it at first (big ol' needle) but not so bad after you've had it completed. At 16 lbs, they pushed him to the limit on how much they can draw out in a given session (7 liters). Are they planning on doing more in a couple of days?

Let's hope he doesn't have an infection but being sore afterwards is leaning in that direction. I never had any real soreness in all the various locations they used for the needle insertions. I did spring several leaks though and had to lay on my side for a couple of hours with a very light pressure applied to stem things.

His blood pressure will factor into the albumin infusion decision. Just keep an eye open for any hypo-tension readings that he may be having, if you monitor things at home. I drifted down to 70/40 a few times and standing up made things spin a bit for sure.

If it is an infection, do they typically leave you there until they get it controlled or is it treated with antibiotics?

I know it depends but just wondering if there is a protocol to expect.

I am very anxious and nervous to see his latest labs after tomorrows visit. I hope things didn't get too bad.

I called him earlier to see how he was doing and he said that something is really wrong with the area the needle was placed. He said it is extremely painful. I know this can't be normal.

But I will try to relax and hope tomorrow is a positive day.

Thanks bblbt,

I stopped by to see how he was doing. My mom said he started bleeding from the wound to the point she got scared and wanted to rush him to the hospital. However a few gauze and band-aids later and he seemed to be OK. Aside from that, I am almost certain that he will be admitted tomorrow to run more tests on the possible infection.

After talking to my dad I got more details and he stated that they told him that it could be many things and they will let the doctor decide the next step. I would imagine that it's something they will dig into, and that means hospital stays....my dad is really shook up over it. He says he just wants to die at home.

A moment of negativity has taken over. Let's hope tomorrow we get better news than expected.

Alex, It's real easy to get a infection when paracentesis is done. Be it from the puncture wound location or internally for a host of reasons. The fluid he is retaining is a toxic mixture the body normally disperses naturally via urine, feces. Dad has a compromised immune system and susceptible to even minor bugs getting the best of him. I have been in similar situations during paracentesis when the fluid turns from a normal yellow color to a diluted pink. Although troubling to me it didn't seem to be abnormal to the doctors. The pink of course was blood mixed with the fluid.

Several of those times this happened the needle wound constantly drained. It eventually stopped after a couple days of constantly changing out pads. I say pads because that was what I had to use. The female sanitary napkins absorbed the fluid and kept it dry so it could heal. Two days later I'd be back in outpatient getting another 12 or 13 liters removed but from a different location on my stomach. Felt like a human pin cushion truly. If someone wasn't coming at me with a needle every other day life just didn't seem normal. Anyhow you need to verify he is getting albumin after each procedure. They are typically tiny I.V bottles and are given at a ratio to how much fluid has been removed. Powerful nutrients to replace the good stuff that was thrown out with the bad fluid. It's essential, No option, He needs it or his health will deteriorate.

Sorry he has been feelin down lately but that is to be expected. I've muttered those same words he said about dying. Not much of a life starring out of a gloomy hospital room or a lab for months on end. It's hell for those of us who love the outdoors and stirring about. TIPS should be being considered at this point and I'm sure that's what they are debating. TIPS is all or nothing type thing. Consider the possibilities of further infection when doing the surgery, It's a precise procedure and a smidgen in the wrong direction while it's inserted and the effects could be disastrous or even possibly push him to the top of the list by default. For me it has been a miracle but others have been known to see increased encephalopathy afterwards. I'm sure when the time comes and that option is on the table they will go over exactly what I'm telling you.

Alex, This can be survivable, It ain't a cake walk though and your dad holds the dice here. He can keep on rollin until he's done but that's his decision to make ultimately. I'm sure the old man has seen folks or he himself has had to suffer under what seemed to be a endless stream of nightmares to see a beautiful new horizon appear suddenly. Sadly we forget those times and experiences, Those are the times that should really bolster our will to survive. I hope he finds it within his soul to give this disease all the hell he can muster even through these rough spots. As always I keep you in my thoughts and still check in on you regularly.

Ziff

When you're very sick, a hospital is the place to be. Things can go south quickly and immediate treatment makes all the difference. I had infected fluid in my abdomen at one point. They were giving me IV antibiotics 3 times a day for almost a week. That was 6 months before my transplant. Without that, I'd have never made it to a transplant.

Get him listed at another hospital (Dual listing). UNC Chapel Hill and Mayo Jacksonville both send you to the top of the list at 23 or 24. When I was admitted initially they had me at 28 but had to meet the sobriety requirements. Had I been at Mayo Jacksonville I believe they might have been more flexible with length of sobriety. I've heard mixed things about Jacksonville's Mayo, Mainly negative. I have family relatively close to that center and was raised in that general area about a hour away in GA. Different hospitals different testing of organs to be transplanted. I signed a release to get a organ from Mayo in the event UNC couldn't obtain one quick enough. I just wanted to live and a pristine, tested, examined, UNC organ wasn't my goal at that point.

Ziff