I just lost my mom in her long battle against cirrhosis caused by hepatitis c and alcoholism. She was fortunate enough to receive a liver transplant in 1995. She was at UCLA for eight months and then transferred to a rehab center. She was given a second chance and was fairly healthy until last year. I know that the average life expectancy for liver transplant patients is ten to twelve years. When she got sick at Christmas, the family knew she probably wouldn't live too much longer. However, the doctors kept telling us that her liver was okay and that she would get out of the hospital and live for quite some time.
The following scenario was repeated every few weeks. The doctors would decide to do a parenthesis. They would remove four to six liters from her abdomen. My mom's condition would improve considerably within a couple of days. Her mind was clear. Her breathing was good. She was ready to leave the hospital. Then the ascites would build-up again. Her breathing was limited, eventually leading to the insertion of a breathing tube. Her abdomen would swell up bigger than it had previously and she would get infections throughout her body. We would confront the doctors once more as we thought the end was approaching. They would again tell us that she was going to be fine. They kept telling us that her liver was working okay. When we would confront them with questions regarding the ascites, they would dance around the topic. This took place for the five months.
Then all of a sudden, they transferred my mom to a long-term acute care facility. This happened one week after her doctor told me that I would be bringing her home within the next three weeks. They told me that she would be on dialysis three times a week for the rest of her life, but that her liver was working okay.
The doctor at the new facility was hopeful during the first week of my mother's stay. Then, they did two parentheses in a week. The fluid would just come right back. At that point, the doctor told us that there wasn't anything more they could do for her. He asked us if we just wanted to make her comfortable. We decided that would be for the best.
I'm wondering if anyone else has gone through this scenario with the hospital? I know that doctors aren't miracle workers and that they can't predict exactly what's going to happen. My concern is that my mom went through a horrible five months of pain and suffering that were unnecessary. I'm not bitter about my mom's passing. I know that she's not suffering anymore. I'm more upset that she had no quality of life at the end. I feel as if those doctors kept her hopes up that she would one day come home.
So sorry in the loss of your mother. You did the best you could for her and the doctors probably did also. Yes, her pain is over now. You can be thankful for that. Didn't they doctors give her morphine? Please accept my sincere condolences.
So sorry to hear about your recent loss. As a health care worker, I agree that none of us don't have the ability to predict outcomes. I've sent a 98 yr old home after therapy, and lost others who looked as if their chances were better.
I think that it's hard not to be angry with someone now, but it sounds as if your mom just continued to have problems after they would fix one, something else would go wrong. I'm not trying to defend the hospital although it might sound that way. I was very angry and hurt when my mother was hospitalized for an elective hysterectomy, complained of chest pains prior to surgery according to nursing documentation, then slipped thru the cracks with the anethesiologist. She sufferd a heart attack during surgery, then her final one the next morning while I was at her side. My mother was 59. I wouldn't have wanted my mom to suffer as yours did, but I wish I had more time to say good-bye.
My heart, truly, goes out to you, and my grief over my mothers death is renewed talking about this.
no fun. me and my siblings watched my mom go with lung cancer. it lasted many months, just like yours. she was tough though, just as i am sure yours was too, she managed to still smile and laugh the whole time. as far as the doctors and the extra five months,
even if they knew she was on the way out, what were yall gonning to do, just pull the plug? i dont even think thats legal. and and far as giving false hope, i wouldnt be surprised if the hippocratic oath allows them to do that. when the medicine bag is empty and they have no other choices, exploring hope is the only
option left. until that person quits breathing, there is always hope that
some type of miraculous recovery could occur. if i was a doctor, i wouldnt know if i could tell someone, "there is no hope, you will be dead in 2.5 hours". i think doctors truly tell you what they think the odds are and then nature may take any path from there. up or down. dont be bitter, it sounds like your mom received
the very best medical care and im sure they medicated her towards the end for pain. it all worked out. move on to your next phase in life, thats what she would want you to do.
It wasn't until they moved my mom that we felt she was getting the best care. Even her new doctor told us that he felt the doctors had given up on her at UCLA. He was very open and honest with us in regard to her condition and treatment.
To expand a bit. I'm not bitter that I lost my mom. It was time and I know that she's no longer in pain, emotionally or physically. While she was at UCLA, I defended the doctors for the longest time while the rest of my family got angry and frustrated with them. ALMOST all of the information I would receive came from nurses, who btw were absolutely wonderful. The doctors were next to impossible to reach. We would request family meetings or try to make appointments with the doctors to no avail. Then, we would go speak with the patient advocate. After a phone call from her, we would finally get to speak with a doctor. The doctor would just keep telling us that my mom was fine or okay, even though we knew that she wasn't.
I'm wondering if because UCLA is a training hospital, they were using her as a training tool. I think that's what causes my frustration. You know how your intuition tells you something, it's usually right. My intuition tells me that the doctors weren't giving us the full story. Once, I received a phone call from the hospital telling me that I would be bringing my mom home within a few days. The day I was suppose to make arrangements for her, she just quit breathing (due to the pressure from the ascites on her lungs). She ended up back in ICU for over a month. They also kept telling us that the ascites was not building up because of her liver. They didn't know why the ascites kept coming back. It just seemed like they were maintaining her but not keeping her comfortable.
I wrote about my mom's false hope because she truly believed she was going to get through it. She thought she would be coming home and back to her old self. She and I made our amends and I'm glad. However if she'd know that her time was near, I think she would have made amends with my brother and my aunts. I feel for them. I'm glad about the extra time I had with my mom. I'm sad that the rest of my family didn't get what I got.
I am so-so sorry about what you've gone through. I love my parents so much and I'm just thinking about how much pain you must be feelling. Sometimes our medical system just stinks, but there again, we have to realize that where there a humans, there will be misjudgements made by those that have been predestined to be in care of us. Once again, I'm so sorry.
I agree with Cajun, I hope you can come to peace with your mother's passing...must of been very difficult for you and your family as well...I always think death is the hardest on those left behind, you mother certainly does not have our concerns -and that has to be a blessing....be well...
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