HealingWell
Search Close Search
☰

waiting for a miracle

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/13/2014 12:38 PM (GMT 0)
Posted Today 4:01 AM (GMT -6)   
Hello,
I'm Hannah. My sister was diagnosed with ESLD a few months ago. We are devasted. She was placed in an induced coma and had dialysis yesterday. Mom saw a tear in the corner of my sister's eye and will not leave the ICU. It's heartbreaking. She was placed on a ventilator. We are still waiting for a donor.
Has anyone been in the same situation. Is there hope?
We're a collective mess. :(
Posted 9/13/2014 2:06 PM (GMT 0)
Is she on a transplant list? More facts are needed.
Posted 9/13/2014 2:07 PM (GMT 0)
Hi waiting,
I am very sorry about your sister. I believe there is always hope if there is life. Can you tell us a bit about you sister's liver disease, and where you are located? My husband is on the transplant list as well, listed at Mayo Clinic AZ, but not near the top yet. His liver disease was caused by decades of Hep C before he knew he was infected with that virus.

It sounds like you are saying your sister is on the transplant list. Is she at the top of the list with her center? We have seen some extremely sick people that have survived, but you do know the situation is dire. It is difficult to know who will survive and who will not. I want you to know we are here to help with any information we can.

Welcome to our Hep forum, and please post as you can. Big Hugs
Posted 9/13/2014 3:07 PM (GMT 0)
Thank you David and Themiz. Sorry, English is not my first language. Excuse any mistakes.
She is 35 and her liver damage was caused by using tylenol pm daily for a long period of time as well as substance abuse. She was depressed for years, refused help, denied everything and shut us out.
This forum has been a comfort for me. I've been reading non stop for days...
She has good doctors but I guess i'm here for moral support and to keep my sanity more than anything else. I've found that my day is consumed by this. I walk around like a zombie and can only remember our childhood together and how she was fiercly protective of us although she was younger.
Thank you once again
Posted 9/13/2014 5:12 PM (GMT 0)
Your English is fine, and don't worry about that at all. Some stories are often heartbreaking on our forum, but there are many full of hope and endurance. Real life miracles, as well! Where is your sister located, because if you are in the US and I think many places, your sister needs 6 months sobriety to get a transplant. I wonder if she been in this situation in the past? Some with substance abuse have multiple times in and out of hospitals on deaths door, only to drink or use again. That is pretty difficult on a family. I am sorry for your pain.

Did she just crash all at once, or has she had a sick liver a long time? Big Hugs
Posted 9/13/2014 6:11 PM (GMT 0)
Dear Themiz,
You are an angel ( hugs). Sorry for not knowing all the details. I have a terminally sick son and my parents have tried to shield me from this. I was clueless of how serious it was until a few months ago. I reside in the UAE. Trying to get a visa and come see her. Apparently, she was sober and was evaluated. She didn't have 6 months so after she got really sick in rehab she was placed on the list.
Thank you for your kind words and big heart. People like you make this forum a better place.
Posted 9/13/2014 7:41 PM (GMT 0)
You have your hands and heart full, waiting. I am sorry to hear about your son. My heart goes out to you as you continue your journey. I do hope you can get a visa to visit your sister, but it is understandable your family shielded you. We do see many miracles of people like your sister on this forum. I can not say which way her situation will go as she is very ill...but know you are welcome to post and I do hope you will keep us posted as things progress with your family. Big Hugs to you, your son, your sister, your Mother.
Posted 9/16/2014 1:57 PM (GMT 0)
Themiz,
The doctors have asked for a meeting with my family. I will be with them on Skype. They say they want to discuss options. I'm freaking out. They keep telling us she is stable but no change. One of their options is to take her off the ventilator! She opened her eyes yesterday, squeezes Mom's hand when asked and follows my sisters with her eyes :( how can they ask that we take her off the ventilator? She's still on the list. Do you know of anyone who has been in a similar situation?
Posted 9/16/2014 1:58 PM (GMT 0)
What can we say to these doctors to convince them to give her a chance? My hands are trembling as I type this
Posted 9/16/2014 3:05 PM (GMT 0)
The doctors may want to see if she is able to breathe on her own, hence removing her from the ventilator.
Posted 9/16/2014 3:18 PM (GMT 0)
Thanks for the reply, David. They tried lower the dose of her anesthesia and she started to "over breathe". They put her in coma.
Posted 9/16/2014 3:23 PM (GMT 0)
I've been talking to Doctors here and they say that sometimes because doctors have to do an assessment every time a liver is available... They tend to want to illuminate the hassle of paperwork by asking those less likely to be taken off the list. This is cruel in my opinion and they are playing God.
Posted 9/16/2014 4:31 PM (GMT 0)
They wanted to discuss the option of DNR.
:(
Posted 9/16/2014 6:51 PM (GMT 0)
waiting,
What a difficult day for you and your family. I am so very sorry to hear your sister is so very ill. My husband had a surgical procedure today, and I was unable to read your posts until just this moment.

Sometimes people become too ill to survive a transplant. I see your sister is on dialysis, and her kidneys must be having problems. This happens with some. Sometimes people get too sick and the doctors do not think they will survive a transplant. Sometimes they get infections that preclude them. Just some of the things that can happen when getting sick enough for a transplant, but not too sick to survive the surgery.

With the shortage in donor liver's, those on the list must qualify on many levels. The transplant team can decide to take listed people off the list at times, for various reasons. It is an imperfect system, and I understand the frustration as a loved on of a person waiting for transplant. Please update and let me know how you are and what decisions are made. My heart goes out to you and your family. Big Hugs
Posted 9/17/2014 4:53 AM (GMT 0)
waiting,

I am sorry to hear how sick your sister is.

There are never enough donor organs for all those who need them. Good people die waiting every day. They must triage the organs available of those sickest in the territory, who has been tested and prepared for TP, who is most likely to survive? That is key. Who is most likely, at this one moment, of the sick people with the same blood type, to survive? Not God....I have come to understand they are more Solomon....you can't save half a baby!

I would hate to be on the board that has to make these decisions.

It is a public health crisis...what should we do? Encourage more to sign donor cards....young and old people must sign up. Educate people not to engage in risky behaviors. Encourage medical research to develop artificial livers, etc etc. Perhaps pursue more live transplants.

At this moment in time, there are finally new treatments for some liver diseases..but they cannot cure everyone.

I am so sorry it is touch and go for your loved one.

Hugs,
Mama Lama
Posted 9/17/2014 5:32 AM (GMT 0)
Waiting,

I also wanted to say how sorry I am to learn of your situation. I think it is very heartbreaking given she is only 35. Please keep us posted.

Wishing your family the best during this time
Posted 9/19/2014 9:05 PM (GMT 0)
Waiting ... I am so sorry for you and your sister. It is absolutely heart breaking. I think it was ML who said we should have an "opt out" instead of an "opt in" system for organ donation. Wish you didn't have to go through this and that your sister could get another chance. She's so young. Thinking of you and sending much love.
✚ New Topic ✚ Reply