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Posted 3/15/2012 9:15 PM (GMT 0)
Hang in there Monica! Prayers for Oscar, and you.

Emma
Posted 3/16/2012 4:29 AM (GMT 0)
Thanks Emma

Well Oscar stayed at the hospital..he just got out on Saturday!! He has bronchitis and they want to give him IV antibiotics and observe him. They do not think the blood he threw up a bleeder they think its irritation from the coughing. Hopefully its not a long stay. But honestly sometimes I rest a little more knowing he is there and someone is watching him during the day while I'm at work. They were going to send him to ICU but changed there mind.
Posted 3/22/2012 2:51 PM (GMT 0)
Good Morning Everyone

I have not posted in a few days they have been chaotic! Oscar is still in the hospital. They had to band some varicies in his esophogus that were bleeding. He does good for a couple days and then its back to bad days. Yesterday was not a good day..his back is really killing him, dr's say its probably due to his kidneys that are not working like they are suppose to. Yesterday dr told him he needed to get on Medicaid to be put on the list, dr said he would not make it on medication alone, its a life and death situation and he does not think he will make it past 6 months without a new kidney. Of course I feel like crap. He did apply for Medicaid and it was denied but its in the appeal process a social worker in the hospital is helping him with that. I keep praying that he will be accepted, this is just torture!

Posted 3/22/2012 3:24 PM (GMT 0)
Moniesol,

since you are under a time crunch to get Medicaid, I would consult a Soc. security lawyer to see what they could do for u. I was denied twice by social security even with the help of my hospital social worker. I went to a lawyer and she went directly to the administrative judge in charge of my appeal and got it reversed. I was awarded Social Security backdated to the date of my disability. I was not eligible for Medicaid due to my husband,s income, but they did count that year as part of my wait for Medicare. Soc. security lawyers get paid a fixed amount from your award.

Susie
Posted 3/22/2012 7:37 PM (GMT 0)
Hi Monica,

Gosh, I can relate! I can feel your panic and it brings me back to those days with my husband, Ron.

Ron received a transplant February 3, 2011; but we weren't sure he was going to make it - at night - I would wake up to check to make sure he was breathing. So once that call came - we couldn't believe it.

I, too, had difficulty with work. I worried I wouldn't have the time I needed after transplant. Why don't you qualify for FMLA - is the company too small or is it the short time you've been employed? Perhaps by the time your husband is listed - you'll be able to qualify for FMLA?

Ron wouldn't eat so I forced him to drink Ensure - I made him whatever he thought would taste good - even if he ate only a couple of bites (sometimes I felt like he wasn't trying to hang on - I know now - that was the disease). He ate baby food (pears) and took milk thistle (check with the clinic before he takes supplements). Ron lost so much weight - he had no muscle mass left - even after a year - he's still thin (but he is 64).

I know you're worried beyond belief. I know, that no matter how many times someone tells you - it will work out - you won't believe it....I remember.

Then there were days I pretended it wasn't happening to us. Some days I was so mad at Ron for being sick and we argued constantly.

We loved each other through it all. We prepared for his leaving us - trying to say how we felt - in little bits - sometimes that's all we could do without getting so upset - that we had to stop and try again another day.

Our daughter, newly married, moved their plans forward, giving birth to our grandson, Oliver....to help Ron hold on....and it worked.

Hold on Monica. Come here often. If this helps, visit our blog - I blogged through our entire journey.

http://ronslivertransplant.blogspot.com/

Hold on. I know the burden feels too heavy. You need to be kind to yourself.

Pam
Posted 3/22/2012 8:54 PM (GMT 0)
Thanks Pam and Susie for your responses. I am at work trying to respond during my lunch break and yes the reason I would not qualify right now for FMLA is because I just started with this company in August 2011 . Like you say who knows maybe he can hang on. I sometimes get irritated because he eats like a baby he says he sometimes cannot handle solid food and I get so mad, like you said, I feel like maybe he is not trying. I remind him the dr's want him to put on weight and muscle he is very thin and weak. Last night he had rectal bleeding again they are thinking its some internal hemorroids he has. I hope they are right. Most of his pain right now is in the back, he says it is really bad. I do make sure he drinks at least 2 Ensures a day with whatever small portions of food he does eat. I wish i could pretend this were not happening..I'm try to be strong and I know it has gotten to the point where I just need to give myself a good crying my throat aches cause I hold back the tears. I will be back soon. Thank you all so much
Posted 3/22/2012 9:22 PM (GMT 0)
Monica, Mike made it to transplant by having Ensure and whatever else he could get down.

Mostly pudding, tapioca, canned fruits....lots of applesauce. He would eat potatoes and rice and occasionally a piece of chicken.

I made home made chicken soup one day (which was delicious) and he HATED it. It had SEASONINGS...little green chunks he just couldn't handle. "Ewww."

He would eat ice cream, which I didn't hold back.

He lost from about 190 to 150 during the year before transplant.

Now he is about 180 again and putting himself on a diet....no more milkshakes...their time is OVER for him for now.

I too cried a river. Every time something good or bad happened on this site, I wept. I wept at the grocery store. I wept waiting for him outside the AA meetings, and I wept all those times he was hospitalized.

Someone heard my prayers through my tears. I am blessed to have him here with me. For now.

Hugs,
Carol
Posted 3/22/2012 10:09 PM (GMT 0)
Oh wow Carol
It's so nice to hear a good outcome. It is incredible how I can relate with so many of you here at this website. Sometimes I feel no one else understands. My daughter today said that if they visit him I do not have to go for one day, but I just feel terrible not going. Last night I cried myself to sleep i was exhausted but could not fall asleep.
I sometimes make him homemade chicken soup and try and be creative and pay attention to what he likes and he likes it once and then he has no appetite for it! I know I cannot take it personal but it is just so hard. He was upset yesterday when they told him he would not make it past 6 months without a transplant but i told him it is upsetting news but he cannot stop trying to gain weight and build some muscle that he cannot give up.
Posted 3/28/2012 2:38 PM (GMT 0)
Hello everyone
It has been days since I posted but now Oscar is at home and he has been attending AA meetings they want him to go as often as he can. He started taking Xifaxan, oh my that stuff is expensive!! Well its the second day and yesterday he only had 1 bm which I did not like. He also takes the lactulose twice a day but when he told me he had only had 1 bm I told him to increase the lactulose to 3 times a day until he has more bm's. Does anyone know if this is normal when you start taking the Xifaxan?
Also we have decided to add him to my insurance at work its Blue Shield PPO and I did check about pre-existing conditions and they required him to have coverage for 6 months previous which he had so I hope everything work out. Any input on this? The Medicaid process was just ridiculous he gets disability and was recently approved for Social Security so they wanted like a $2000 share of cost per month. His total income would be $2500!!
Posted 3/28/2012 3:36 PM (GMT 0)
Moniesol,

Prior to becoming eligible for Medicare, I was on my husband's employer's BC/BS PPO. It cost $800 a month to cover me. It covered 80 percent in network. Good thing was Xifaxan was only $60 copayment.

When I got Medicare, I opted for original Medicare, a BC/BS supplement plan,and Part D prescription insurance. I pay $300 for the supplement and part d plan. My Xifaxan copayment is $95 in initial phase, $550 in donut hole, and $80-$90 in catastrophic phase. The new health care bill is eventually phasing out the donut hole in 2014. I got a part d plan that will cover all my pre-transplant and prospective post transplant drugs.

My doc wants me to have at least 2, preferably 3 bm's a day. I increase my lactulose as needed to achieve this. despite how much I take, my ammonia level hovers around 100. Luckily, I can function at that level.

Susie
Meld 16
Posted 3/28/2012 5:47 PM (GMT 0)
Moniesol, I have both regular Medicare and Medicaid Medically Needy. It sounds like the latter is what Oscar has. The share of cost is only the amount of bills he incurs in a month's time....not how much he has actually put out in co-pays. The Xifaxan manufacturer also has a program that offers assistance in obtaining this drug if he passes their income criteria.

Hugs,
Connie
Posted 3/28/2012 7:43 PM (GMT 0)
He is not eligible for Medicare yet, there is a 2year wait. I'm going to put him on my Blue Shield plan. Medicaid said he would have a share of cost of $2000 before they kicked in, maybe I misunderstood but it was just ridiculous. Where can I get information on the Xifaxan? We bought a few days worth and I wanted to wait for the Blue shield to kick in and hopefully just have a co pay.
Posted 3/28/2012 9:10 PM (GMT 0)
Moniesol, I think I posted about this in another thread today. The "share of cost" does not mean that he has to pay $2000 out of pocket monthly, but that he has to accumulate that much in medical bills before Medicaid will kick in. This is Medically Needy Medicaid, which I have along with Medicare. As much as I go for tests, consults, labs, etc., I am well over $2000 most months. If I am hospitalized (as I was for 8 days recently) that figure can easily be met. I have so many labs and medical tests, etc., that even if I am not inpatient, I generally have bills equaling that amount. I have straight Medicare with no supplement except for Medicaid M.N.

Hugs,
Connie
Posted 3/28/2012 10:14 PM (GMT 0)
I understand you now Connie the difference is you have Medicare primary and Medicaid is secondary that is why you do not have to out of pocket anything. But they told him he would have to out of pocket those $2000. Well anyway I am overwhelmed I just see him getting worse and for the last couple of days I notice he is irritable and depressed. I try not to take it personal but it is very hard
Posted 3/30/2012 8:47 PM (GMT 0)
Oscar is back in the hospital when i got home from work on Wednesday he was very confused and had a dazed look. Took him in and they think it might be peritonitis but they are not sure. They up'd his lactulose and he is having more bowel movements. When i left the hospital last night he was in good spirits but today he is back to the confusion. Will this confusion be reversed? Dr's of course said it would but they are saying he is very sick and do not know if he will leave the hospital. In regards to liver transplant they are not happy he only has a few AA meetings, but he has been so sick! So they said if his sponsor is willing to go to hospital everyday it would count as meetings. I know that is good but I dont know if he will get strong enough. He is down to 126 lbs they are planning on putting a nasal feeding tube.
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