Hello to you all. It helps to read your stories...so I hope mine can be of some help.
My father is 58. Last year, he suffered a heart attack( 2 stints) and started entering stage 4 kidney failure. He was always a heavy drinker (30-35yrs). Before the heart attack, he knew of his kidney issues and diabetes, but continued to drink and ignored what his drs where telling him. After the heart attack, he stopped drinking, but they noticed his liver was severely damaged and he was enetring end stage liver failure. Cirrosis child class b. He never let me know of his liver failure, though I figured with the heavy drinking, kidney failure and congestive heart failure that his liver had to be in bad shape.
Exactly one month ago, He was found on his bedroom floor. Blood sugar at 17, he was slipping into a comma. he was in ICu for 2 weeks and they weren't sure if he would come off of the ventalator..but he did. Shortly after, the hospital suggested hin for the TIPS procedure. I had already read about it, but questioned if he was too far gone for it to be effective. they life flighted him to a hospital in a different state. When he arrived, they confirmed the worst.
Due to Hepatorenal syndrome( kidney and liver failure), the congestive heart failure( severe right heart failure causing pulmonary hypertension in his lungs) he was not a candidate for TIPS. In fact, they said he would need a liver, kidney, heart and lung transplant at this point which would be impossible to manage due to too many organs in failure and too weak to be considered for transplantation of any of those organs...there's nothing they could do but try to make him comfortable.
His ammonia levels remain high even with lactilose 3 timesa daily and now his bowels have even stopped functioning( 5 DAYS NOW). He did have a ferocious appetite up to 2weeks ago, but that was due to how much energy his body was burning off just trying to function. Now, in the last week, he barely eats or drinks anything. they have tapped his lungs and belly 20= times over the last year, but now, his belly is larger than ever..yet there's no fluid to remove( the liver has expanded and they can't get the fluid out. The liver is absorbing it. His legs are 4 times the size that they ever were. His privates are severely swelled as well. they could barely manage to get a cathiter inserted and even when they did, he's only putting out 300 cc daily. Everything is shutting down. Only the left heart is functioning. he's sleeping alot, but it's restless sleep. tugging and pulling on bed linens and clothing, talking , shouting in his sleep. Skin is discolored, complete loss of all muscle tone. I've been told a week or two at best...yet they've been saying that for a month now.
In the last month, we've been in 3 hospitals, 30-40 specialists and today, they are sending him home with hospice crisis care because they feel it's not much longer and that's where I know he would want to be. He's been in denial about his condition all along. "when I get through this" started most of his converstations until I screamed at his doctors to be truthful with him instead of "we're looking into it buddy...everything looks good!" meanwhile, those same drs are telling me to make sure all his affairs are in order.
My step mother( she and I have always had a strained relationship) yesterday blamed me for his condition worsening. She said by having his drs. explain why hospice is needed and that transplantation is no longer an option...I'm helping him to give up...die faster. I know she is grieveing and she is in denial that he may live another year( I still thought it was a vicious attack upon his only child still in his life)...even though he's displaying the classic last stages of life. that really hurt. I'm trying to help him the best way that I can. To give him closure and not keep him guessing as to when the miracle cure is arriving. I don't want to lose my father, but I want him to have the dignity and respect he deserves by having a peaceful passing. he worked hard all his life and was six months away from his retirement when this all started a year ago. His job was a huge part of his life and really he began to give up when he knew he couldn't work anymore.
I don't now what to think or do. I feel terrible I pulled down the wall of denial for him, but someone had to be honest with him. Anyone out there struggling with that aspect?
My prayers to you all. This is one of the hardest diseases to watch someone suffer from. I just want his suffering to end. it's too difficult to watch.
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