moms liver disease

Hello,

Hope some one can help me. My mom just passed from liver disease, caused by hep C virus. She was only 59 years old! She was such a sweet and innocent lady, and I am not just saying that because I am her daughter.

I don't exactly know the cause of death, the doctors never tell you the truth. But after she was tapped from the abdominal area, her hepatologist told me that her creatinane level is a little elevated and she should decrease her diretics medicine, Lasix and Aldactone. We planned a trip to India, she wanted to visit family, and hasnt been in 7 years. She figured she might go now instead of going after transplant (if she gets one). I asked her transplant doc if its wise to take her, and she advised not to because of infections.....infections can happen anywhere....so I went to her primary doctor, and he said it is safe for her to go. Before leaving the primary doctor saw that the Ascites was very bad, and told me she will be very uncomfortable and doubled her dose for 3 days before the flight. She normally takes only 40mg lasix and 100mg Aldactone. So we doubled it for 3 days, she was very uncomfortable during the 18 hrs plane ride to India! During the entire trip ( 3wks) she didnt go outside, watched carefully what she ate and drank, and was normal. But I did see that she was losing alot of weight, and her belly was getting bigger and bigger from the Ascites. I was helpless due to the fact that we were in another country and I didnt want to take the risk of sending her to a foreign hospital. There was a day when she was shivering severly and shaking....I wanted to take her back home to the US immediately, but my cousins assured me that every thing will be okay. Later in the evening she was back to her norm, and everything seemed okay. When we returned back to the US, we both were so relieved and happy to be home....then 4 days later she asked me to take her to the ER, because she didnt feel so good, her blood pressure was very low, she was lathargic. When we got there immediately they took blood and xrays of her lungs. Some of the Ascites gets behind her lungs( she had been tapped there at least 2 times, in the last yr)

So when he tapped her, her lung calapsed, and then there was air trapped and they had to remove the air. they usually remove 5 liters of fluid from her lungs, which they also did that night.

After removing the fluid they put a tube in her...Plural Evac? it was a long tube that lead to a box that measured the fluid. So she ended up in the CCU for 2 weeks before being transfer to the Transplant hospital where she stayed a week and a half. The Transplant team said due to her condition, her body wasn't stable enough to get a transplant, so they temp took her off the list. I was so scared for her life....she was in and out, she said she couldnt sleep at night. her ammonia levels were very high, they were giving her lactalose to remove the toxins.....she was also getting plasma....her doctors, labs and charts/reports was saying her body's failing but when I talk to her she's awake, eating three meals a day and talking to me. I didn't know what to believe. She asked me for a kit kat bar and a pepsi......then one day the doctor pulled me over aside and said he doesnt think my mom will survive much long. Her liver and Kidneys are failing and her blood pressure continues to be very low. I was devastated, she is the only family I have....I love my mom so much. I have an older brother, but he lives in Canada. He couldnt be with us, he wanted to but it was not in his hands. Thank god I had my boyfriend with me and mom, he was so supportive to both of us during the entire time. My mom asked my what are the doctors saying, I never told her the truth, I just said please get better so we can go home.

on 27Feb 7am my mom was gone...fortunately, the residency doc called me 430am to tell me that my mom was not going to make it, she will go in the next 10 mins or so....me and my boyfriend rushed to the hospital (UDMNJ) and got to the room to see her sitting on the bed waiting for me. I was in tears, my mom asked me what happened? I said nothing, I was worried and just got emotional. We had to step out, the nurse was cleaning her....I asked the doc, why the false alarm....he said she doesnt have much time. They gave her another pressure for her low blood pressure and she came back. We went back in the room , she asked me for some water and I told her dont worry, she will be coming home soon. I held her right hand while my boyfriend held her left....20 mins later she looked up and slowly her breathing became low, and then her pupils dilated.  

everything happened so fast, i didnt know what to do!? i am so sorry she had to go so soon. i am still not over her death.....i keep thinking maybe if I didnt take her to india the transplant team could have observed her and  prevented from her liver and kidneys completely failing. was it because of the increase of the diretics for 3 days???? or maybe after India i should have taken her to the hospital immediately instead of having 4 days go by???? What could I have done to prevent her organs from failing? and how did her organs...especially her kidneys fail so soon?

Please if any one can give me some insight...

Hello Ranji, and welcome to the forum.

What a sad story you have shared, of the last months of your Mother's life.

I can see that you are in the stage of wondering what you might have done differently that would have changed the outcome.

If you take some time and read back through our posts, you will discover that liver disease is individual for each patient...when their time comes, whether they can come back after a major set back. You will see that some overcome the odds and have a successful transplant even though they have kidney problems. Some do not.

But the stages of your mother's illness are quite the same as others...it is the speed at which they cause the body to fail that varies.

Many have ascites or fluid by the lungs. Some have life threatening bleeding from varices in the esophagus that she did not have.

The treatements your mother had are the standard protocols and medications.

Since your mother received excellent care at the transplant hospital and just didn't get strong enough before her transplant time came, maybe over the next months you can think what a wonderful gift you gave her taking her to visit to her family in India. To move away from family is very difficult and returning "home" to visit is very important in your culture. She had the opportunity to enjoy her family and friends and they had the opportunity to say goodbye in a proper way...face to face.

It is a wonder she was well enough for the trip and it is a miracle that she was so alert during her last days. For that you are lucky. We have members here who report their loved ones can't recognize them or are very confused and aggresive. Or in a coma like state.

My partner had a liver transpant a year ago at 62. So far he is doing well. After his surgery, the doctors told Mike that if a donor had not been found, he was in his last days. Before he went under the anesthesia he told his nurse that he was prepared to die or live...no matter which way, but he knew he could not continue as he was....so sick for so long.

Even now, after surgery, he has Hep C. That has not changed, becaese it is a blood disease that damages the liver...not a liver disease that goes away when the damaged liver is removed. He had a tumor and that is gone, but the body, once it makes a tumor, can often make another because of the Hep C. So we know that Mike is not free of problems....he just has more time for living. We don't know how much. None of us knows OUR time.

I am sorry that your mother did not get strong enough for the transplant. But it would be good if you stopped beating yourself up. Do you know that if you took her to hospital in India that they may not have been able to help her? There is different kind of donor program there. Most liver transplants are from living donors who give one liver lobe to a sick patient. I don't know if these procedures are safe, but the Internet discusses this type of program which is different from the cadaver donor model generally used here.

I think your long description of the stages of her decline are important for our members to read. It describes in great detail what can happen, and often does happen. The spouses and children of our patients often ask what they can expect...and this is very clearly what they can expect.

My heart goes out to you. I hope, over time, you can begin to focus on the wonderful years you had with your Mom and how she helped you become the strong woman you are today.

Hugs,

Carol

You gave your sick Mother a gift. You took her home to see her family and say goodby. She knew the end was near and that is what she wanted the most. If there was a chance of a transplant, the doctors would have urged her to do that instead.

I took my daughter home on a plane when she was very sick with Cirrhosis. I prayed she would do OK because she had no choice. She swelled lot. Probably because of the altitude. But that did not make her SICKER!! She was already sick.

I lost my Mom suddenly and didn't get to take her to her "heart place" and didn't get to hold her hand before she left. I know many will second guess what you did. And you will too. That is part of grieving. You loved your Mother and did what was right.

Hello Ragini,

I am so sorry for your loss. I too, have recently lost my mom. She passed away the beginning of April. She had been hospitalized since mid-February. My mom did not have liver disease, but her medications hurt her liver. She had necrotizing pancreatitis, but what ultimately caused her passing was liver failure and kidney failure. She was in a coma-like state her final days, with very high ammonia. She was on Lactulose and Xifaxan. She had been on high doses of Lasix and aldactone. Like you are experiencing, I have been through a million "what-ifs", and in the end, the outcome cannot be changed. You need to know that you were a loving daughter and did all that you could for your mom. You traveled with her to visit family and see her country. You held her hand when she passed. She knew how much you loved her, and you know how much she loved you. You will need to focus on that so you can find peace in a heartbreaking situation. I know that is what I am trying to do for myself. Some days I can do it, other days it is very hard.

Be gentle with yourself.

Emma

Post Edited By Moderator (hep93) : 6/9/2012 6:52:16 PM (GMT-6)

Ragini, My Mike had a similar experience. He had total organ failure. I thought we had a longer period of time but unexpectedly his blood pressure crashed... kidneys etc. Please understand. You did everything possible. You're in shock from losing your loved one. Stop all the rushing thoughts. Cry. Vent. Let it out. But honor your mother in memory. Honor the beautiful love you shared. It will be hard. But eventually the pain will get better. It's been two years now. I mourn Mike daily. I carry his love with me. I feel him with me. I'm so sorry for your loss. Sandia

Hi, Ragini. Thanks for checking in with us. Just know that the pain will diminish over the coming months, but you will always miss her.

The transplant process may seem unjust at times, but with so many people needing organs, it's the only fair way to allot them. A patient has to be sick enough to qualify for an organ, but well enough to survive the surgery and recovery process.

I hope you will treasure all of your mother's good traits and the time you spent with her.

Hugs,
Connie