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Posted 6/3/2014 3:58 AM (GMT 0)
My brother got released (I feel it was more shoved out) of the LTAC he was in on 5/23. He was at home for a week doing ok. Taking his meds, eating well, trying to watch his fluid intake and moving around taking short walks outside. Saturday 5/31 he decided he needed to get another paracentesis done. It has been 2 weeks and he was very uncomfortable and having a hard time breathing. His follow up appointment with his GI Dr isn't until this coming Thursday. His girlfriend took him to the hospital. Good thing because he has pnemonia we found out. They admitted him, got him on antibiotics. Today they drained 7.5 liters. He's eating well and getting up to use the bathroom ok but he looks TERRIBLE!!! He's lost so much weight and muscle. He's more jaundice and his cheeks are sunken in, it's very hard to look at him this way. Today we had a meeting with a palliative care dr and nurse, hospital social worker and the chaplain. Also talked a little about home health care for him when he goes home. He says he wants to keep fighting do his dr says hospice isn't needed just yet. He's not giving up. But honestly if I had to guess by the way he looks...... I don't know if he'll make it to transplant.
Posted 6/3/2014 11:55 AM (GMT 0)
Cat, I had exactly the same issues. Don't put to much into the way he looks at the moment, He will look that way for awhile. I used to call it "The pregnant skeleton". I kid you not. Things will be rough but now is when he will really need support. It will be difficult for him to stay positive when all he see's in the mirror is a dead man, It has a tendency to break you down over time. Even with the best support.

Pain, mental hardships and constant hospital visits will easily make for a hope destroying adversary. He will need to continue to fight the urge to lay around. He must find something to do to occupy his time. That seems alot to ask for someone like this but it was the only thing that kept me feeling human. David another inspiring veteran here did the same thing when he got really sick. He will have to push like he never has but the rewads are beyond comprehension.


Ziff
Posted 6/3/2014 4:28 PM (GMT 0)
It's still difficult to think about Robert without tearing up or flat-out crying....but every so often a 'smile memory' hits me. Well Ziff, you are responsible for exactly that today! When you mentioned 'pregnant skeleton', I didn't just smile - I laughed out loud. Last Halloween, Robert was standing shirtless in front of the mirror, posing actually, and he said that he wished the kids still trick-or-treated because he wanted to go out with them as a 'pregnant skeleton'. Oh he looked so ridiculous standing in front of that mirror, with his hands on his hips and looking over his shoulder! Humor was always big with us and even though his sense of humor faded during his illness, every once in a while a little would shine through. Thank you for making me laugh out loud today, Ziff!
Posted 6/3/2014 4:46 PM (GMT 0)
The posing in the mirror thing you mentioned gave me a chuckle also. Did that a few times myself. Schwarzenegger had nothing on metongue. Wife rolled her eyes of course and called me a idiot. Odd about those silver linings in the dark clouds, huh? Those little moments, truth be known are what keeps us sane through the difficult times.


Ziff
Posted 6/3/2014 5:06 PM (GMT 0)
How right you are Ziff! Those moments are definitely responsible for the slice of sanity I've managed to maintain. And I'm well acquainted with the rolleyes - Robert caused it many times! Oh yeah, I also caught him one time during one of his 'posing' moments saying, "Yep, I still got a cute butt." smilewinkgrin
Posted 6/4/2014 1:27 AM (GMT 0)
Catgirl, in or out of the hospital, your brother remains a very sick man. I am praying that OUT now that he is not lured into behaviors that will endanger him further. I think the best you can do is pray for the best and prepare for the worst. Sad times. Hugs, Mama Lama
Posted 6/6/2014 12:00 AM (GMT 0)
I know Aziffle you say I shouldn't put so much thought into the way he looks right now but it's SO hard. I saw him today after his girlfriend took him to a follow up appointment with his GI dr. They stopped by to give me papers. He stayed in the car. When I walked out to talk to him when I saw him, my heart literally sunk (you know that feeling). Now I had just seen him on Monday yet he looked even worse today. He weighed 155 lbs on Saturday, lost 10-12lbs after they drained him yet his stomach is bigger again and he only weight 135 lbs! At 5'9". His dr didn't even schedule another follow up appointment.....I don't know why. She just told him to go to the hospital when he needs to be drained again. I am terrified! My gut feeling is telling me he doesn't have much time left. And I feel bad for thinking that way.
Posted 6/6/2014 1:53 AM (GMT 0)
Cat, Don't feel bad for thinking it or even saying it here. Around him is another issue and I'm sure you do your best not to show the shock you feel. All your concerns are legit but finding a balance of putting on a good face for him is critical.

I used to get angry about the stares I received in public. I was brought up to not make lite of others impairments and never stared. Society and manors isn't what it used to be, but I digress. A few instances come to mind as I write. A woman with a child about 10 years old passed me by in the grocery store. The boy stopped, stared and said "Mom whats wrong with him?" loud enough for the entire isle to stop and turn to look. I left the cart and walked out of the store. Second thing and probably the worst. My wife used to cry in the shower and late at night when she thought I couldn't hear her.Two different scenarios but the end result was pain for me. Difference is my wife was truly concerned and her tears and stifled sobs was from love. Love, Get it? I can't read minds but bet your brother feels the same.

I will say this a million times when you need affirmation. I'm alive. My situation was to the best of my knowledge worse or minimally the same. I have seen others here and at UNC who lived to tell the tale. Yes, It's a horrible disease and it will run it's course and try to kill him. Nobody can say if he'll be one of the people who survives. I am nothing special and honestly had questioned why me when others should have survived and didn't. It's just not up to me and I give that to a higher power to ponder.

Sounds like he may be heading down the road to a TIPS operation. He needs to be going through a outpatient service in the hospital and see if they can put him on a open order for Paracentesis to be done weekly. This expedites things and they will be ready with the staff when he comes in for draining. This foolishness with that G.I is reminiscent of one I fired along the way. Did the same crap. They work for you. Don't let em forget it. Of course have a backup G.I when or if you lower the boom on him/her.

He must take his diuretics and if they aren't working or kidneys are failing he needs to have TIPS done. Nutrition, Nutrition, Nutrition, He has to eat and eat properly. Ensure, Protein shakes or whatever he can tolerate. He will have to fight the urge to give in.


Ziff
Posted 6/6/2014 2:41 AM (GMT 0)
I live in a small town and know a lot of folks. Some would walk by and pretend not to notice me. A lot of people think they're going to catch what you have. I remember when cancer caused the same reaction in people. Same with AIDS. I remember walking around town after my transplant, wearing a surgical mask. It was in the fall and kids thought I was getting ready for Halloween. My attitude about kids was that they were honest and would speak up. Adults that tried to ignore me, well that didn't fly. I was up front about my ESLD, Hep C and transplant and wrote about all 3 in the local newspaper. That helped, though in most places it probably wouldn't go over well. It's sad that people are ignorant about liver disease and other ailments.

Cat, all you can do is remember that you love him and help him through this. Many of us looked like death warmed over. In my case it went on for 4 years. Ziff was sicker that me at first, I looked grey for 3 years, hair was falling out and could barely walk at times. All your father can do is keep his head up and stay positive. You need to help him with that. That's the most important thing you can do. Be well.
Posted 6/6/2014 2:42 AM (GMT 0)
Sorry, I meant your brother...
Posted 6/6/2014 3:29 AM (GMT 0)
Thank you! For helping me work my way through this and how bad does that sound, I'm not even the one with the disease. One thing his GI doctor told him is no red meat, while I've had nutritionists have told me that's "old practice". His GI said fish, chicken, rice etc. he doesn't like the ensure shakes. Protein shakes are a great idea though.
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