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Not enough " support quote to get a transplant!?

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Posted 8/16/2015 6:35 PM (GMT 0)
The Liver Center in Newark New Jersey took my best friend who is in end-stage liver disease with encephalitis as well off the transplant list! Though he passed all the tests, they felt he didn't have enough caregiving support I am drowning because I am no longer able to do this alone anymore and they can see that clearly
His family have offered absolutely no help in the six years I have been caring for his needs due to the horrendous effects of the encephalopathy which almost killed him
I took care of my mother for five years and then when she passed my friend got sick and I couldn't walk away. I am literally falling and fried. At 62, I feel I need my life back but at the same time can't care for my friend as I did before they told us he needs more than me but there is no one. I told the doctor that I had planned on hiring an RN full-time to help me which he said did not count at all as a caregiver
My question is are all centers this strict as far as using an RN as part of the caregiving support that's required? My second question is, are there assistant living places where he could be taken care of before surgery or even after? I have the money so that won't be a problem and desperately seek any information anyone can offer in my situation thank you in advance
Posted 8/16/2015 8:05 PM (GMT 0)
Horatio, I'm sorry about your friends situation. Another forum member who goes by *David* lives in the general area as you and may be able to direct you to better healthcare facilities. Encephalopathy creates a challenging situation for those of us effected with it. Some of us got through our entire medical care without being singled out for lack of support. It has been done but only in minor cases where encephalopathy occurs.
Are they treating his encephalopathy with lactulose and Xifaxin, Is he compliant?

I've answered falsely when asked if someone was always present as a caregiver. Yes, It is standard practice for a caregiver to be present and dedicated. Some hospitals may look the other way depending on the severity of the situation (encephalopathy). The problem comes back to who is capable of taking care of the liver in the vital moments and possibly years after the transplant is done? Millions sit on waiting list with families willing and capable of filling that need.

It's shameful and painful to watch or even hear the realities one is faced with or asked to be faced with. Strange how sometimes we are left in pain and never given the opportunity to say our proper good-byes. Then others we are given a overabundance to the point of worse pain than saying nothing at all.


Ziff
Posted 8/17/2015 12:22 AM (GMT 0)
This is a horrific situation. I hope I can come up with some useful ideas/resources tomorrow

Schimbare
Posted 8/17/2015 6:51 PM (GMT 0)
Horatio,

I am horrified as well. Can you get help for YOU instead of for HIM, such that you COULD be a satisfactory caregiver for their program? You say there are funds so you could get child care, eldercare for other relatives, housekeeper, ride shares, deliver of groceries or meals on wheels, etc. There are resources in teh community if you look around for them.

I can say that I did full time caregiving for Mike for at least 5 years, maybe more. It was rough, but I ddi it. Quit everything I like to do, picked up everything he did in our home, drove to all appointments, took him to AA, helped him with personal care, organized the meds, meals, errands, gave him his insulin shots, helped him with bathroom care when it got really bad, etc. some weeeks we drove to Miami 3 times....two hours each way...a lot of miles on the car. but it was #1 at our house.

Let us hear from you,

Hugs,

Mama Lama
Posted 8/18/2015 1:32 AM (GMT 0)
I'm sorry your friend was dropped from the transplant program, but this is no different than people that have other problems, such as drinking. Docs don't want to waste a liver on someone who won't or can't take care of it. I'll be the first to say that my caregiver abandoned me, 2 years into the 4 years I was waiting. I faked my way through, by having an old girlfriend show up at the clinic and say she was my new caretaker. My HE was manageable and I worked construction for 4 years of ESLD. I could and did take care of myself.

Connie did the same thing, but it sounds as if your friend might not make it without a full time caregiver, not just a nurse stopping by part time.

4 years after my transplant, I confessed to my hepatologists PA about what I'd done. She told me that they were sure I was faking it, but because I was totally lucid and had a strong will to live, they let it go. They were right. I did have some help, once I returned home. Friends would come by every few days and take me grocery shopping. 6 weeks post transplant, I could drive and I went back to work part time a few months later. That is not typical for transplant patients.

The only advice I have would be to try other transplant clinics like Mt. Sinai in NYC. Perhaps one would be willing to let your friend recover in a rehab hospital, until they're well enough on their own. I have a feeling that they must believe your friend won't make it without 24/7 assistance.
Posted 8/20/2015 2:05 AM (GMT 0)
I can't tell you how much all of your words meant and mean to me at this time. The advice of getting help for myself so I could continue on, is something I am looking into now. I'm fried, and scared for the first time in my life. of not being able to do what needs to be done with the stress levels over the top! yes, and
and the encephalopathy has caused a major change in my friends behavior where anger, swearing etc. is a constant and makes it that much harder
I have given thought to the suggestions of having someone show up in place of the two sisters he has. both of whom have not been there at all aside from an occasional call, when I text them to remind them how much their brother would enjoy hearing from them
I enjoyed hearing this worked for you guys, and hey, you got to do whatever it takes, so good for you!

as I write this with tears, from the comforting words of those whom I never met, I'm realizing I too need Support to stay strong and sane
thank U all, Horatio
you are a special group of people and I'm glad I found this forum
Posted 8/21/2015 12:10 AM (GMT 0)
Horatio, you certainly are in great hands here. And you are right, you need support just as well to go through it all.

I can say enough kind words about the people on this board such as David, Ziff, ML, TM, SyXx, among others! The main thing to take away is do whatever it takes! So worth it on every level. You have found the right place for guidance, support and sanity.

I hope you find the strength in you to keep up the battle.
Posted 8/22/2015 4:55 AM (GMT 0)
thank you for your support and I hope to find time to get to know all the good people here.
Horatio
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