Dad Needs Liver Transplant in California!

Update: Cardiac Surgeon just visited. Dad's blockage is too much for him to withstand a liver transplant. And with all the rest of his conditions. Failing Kidney, liver, Ascities, overall weak body. The doc says a bypass surgery would have a 50-60% mortality rate. He said he's not closing the door. He will confer with his colleagues about doing stents or some other option that would be safe enough (benefit over risk) to get his heart ready for a transplant. If no other option is possible I would take 50-60* mortality rate over certain death from inaction. He is ordering an esophogial cardiogram to get a diff look. and He said to give him two days to figure it out. This keeps getting more funky every day... Hang in there pops

Mehran,

This is terrible news.

Is your Dad well enoughto participate in the decisions that need to be made in the next days?

Are his intentions clear about his end of life intentions?  At some point you have to figure out the risks and rewards of continued interventions.  You will want to do as much as he wants to do to prolong his life, so long as prolonging life is consistent with the quality of the life it offers.

Does he have the proper DNR documents in place?  Are you all in agreement?

Have you let any family members or friends from near and far know how ill he is so that they might visit before any 60/40 decisions are made.  He may want to see folks..folks may want to see him, etc.

I hope that he rallies in the next days.

I lost both my parents when they were relatively young (54 and 65) and it was dreadful...they were both so ill.  My Mom was not ready, was frightend and desperately clung onto us at the nd. My Dad was ready, telling us all he had had a good life, loved us, wsa proud of the adults we 3 had become, but he was prepared to go. Frankly it was easier with Dad, once he let go...and that we TALKED about it together.  We were all better prepared and knew we had done all we could for him and that he was not longer suffering.

Praying,

Carol

Mehran,
How are things going?

Sending hugs and prayers your way.

Barbara

Mehran,

I am sorry to hear your Dad is too ill for the transplant. Sounds like he has a lot of systems breaking down at once.... And that you have a team that is looking carefully at ways to make him comfortable.

One resource you might look into is Hospice. They do more than just the last days care most people think about them. Some of our members have had a lot of help.

By us there is a group called Granny Nannies...but each area has home health agencies. Sometimes churches have experience dealing with these needs and might know of someone who does this for families. Making a good match is important.

Re Medicare, I will be interested in hearing how that works out. My experience is that you first need to be determined to be disabled. Then you don't get Medicare until you've been disabled for 2 years on their "program"...so he'd be 65 by then anyway.

Mike has been trying to get that Medicare early thing for a long time, but no luck.

Keep us posted on how things are going. YOu say that he is getting dialysis for the kidney problems. Are they doing any intervention for cardiac problems?

Hugs,
Carol

Hi Connie and Carol,

Dad has been getting social security disability for about 5 months now. Patients with renal disease and on dialysis can get on medicare early, its an exception. We are in the process of getting the paperwork filled out correctly etc. To have the final paperwork filled out he needs to be already started on an outpatient dialysis program. So we are waiting for that.

Liver tumor - interventional radiology only does outpatient and will not see my dad while he's inpatient..... So when we get discharged, we will make an appointment to handle my dads tumor.

Dad can't get discharged until he is able to sit up in a chair for 3 hours straight in a chair (requirement for outpatient dialysis) Right now he can't do it. 2 1/2 hours has been his max.

Heart etc - Seems like their plan of care for his heart and liver now is just "maintenance". It's kind of been on the back burner with this whole kidney problem being in the front . The kidney and liver team have both expressed the number one priority is to get my dad discharged (yeah it sounded bad/wrong to me too). I've been sick for the past week and haven't been on top of things like I normally am. My mom is with him most of the time now. I think they plan on using lipitor and fish oil pills? It's sad but I know clearing clogged arteries isn't an overnight thing and I am not really sure how long my dad has.

He has mentioned that he wants to go home instead of a nursing home, so we are looking into the logistics of home healthcare. To be honest I'm pretty bummed about this and have been doing things to distract myself rather than be there for him 100%. I've been praying for the strength to handle this all right and do whats best for my family in the coming year.

I wish I would have had the foresight to research all these things required for liver transplant before he was too weak to have them fixed. Maybe we could have gotten him a bypass and worked on his lung function before he got too weak. I hope someone reading this in the future can learn and maybe it will save a life.

Hope you all are having happy holidays. Thanks for lending an ear :)

Mehran, thanks for updating us on your dad. Is he getting "early retirement" as opposed to disability? Even so, I believe he would need to wait two years from time of application or approval until he could get Medicare. I first started getting SS as early retirement at 62, but only got one or two checks. I had finally gotten approval for disability. Since it had taken them 2 years to approve me, I got my Medicare coverage right away. What a God-send that was.

Perhaps you've been told of dialysis that can be done at home. This would certainly cut down on travel, so it's something to discuss.

Hugs,
Connie

Update: Thursday the 10th we were transferred from kaiser sunset to woodland hills. Dad had severe hiccups for a few days and when we got to woodland hills his order in the computer for lactulose was a smaller dose than normal. Ammonia went up, hiccups were bad, dad begged for medicine, they gave him Thorazine. The thorazine dropped my dads BP to 50/30 and he was rushed to the ICU. They got his bp stable there and his ammonia back down eventually.

During this scare we came to realize, as a family, that this is too much for my dad to deal with. Espescially without hope for a transplant anymore. Over the weekend our goal was to have all the family come visit my dad and for my dad to get closure for one big resentment he had. My older half brother and dad haven't gotten along for years and my dad didn't want him to even visit, or for us to mention his name. My older brother need my dads(not his real father) forgiveness and to have his approval again. They made up and spent so much time together over the weekend. It was so healthy for both of them. My prayers were answered.

On Monday my dads belly was extended SO much because they were delayed on the paracentesis because of the move from sunset and the episode in the ICU etc. He was in agonizing pain all day til we got the para. After the tap he still had pain, horrible pain all night. He told me/my mom he can't do it anymore and I told him "alright dad, its ok, you deserve peace." We decided to stop treatment(Blood pressure/ammonia meds, dialysis, everything) and switched him to comfortcare. He was placed on a 4mg/hr Morphine drip. This knocked him out. I called my two bro's to make sure to get to the hospital asap Tuesday morning and they did. Doctor made rounds and said given his situation she gives him about 1-2 days.

----details of my dads passing, and my thoughts documenting so I won't forget-------
Around 4:20p in the afternoon, my brothers and I were in the room (mom had to goto the bank to get a cashiers check to mail out for our mortgage payment[which my dad usually takes care of] and to get us food). The only monitor still left on my dad was the heart rate monitor. My little brother and I noticed by dads breathing slow down, and start so sound like fluid was building in his lungs. Our initial reaction was to call the nurse, but we both realized we shouldn't. We encouraged eachother to be strong. My dads heart rate started to drop lower and his breathing got slower. I called my mom and told her to get here quick cus I think my dads leaving us. She said she was just arriving in the parking lot.My brothers and I all held eachother and held my dad and each said what we needed to say to him. His heart rate dropped to 0 and his breathing stopped. A thick bloody fluid oozed out of his mouth as he passed. Despite how it sounds, it felt peaceful. My mom got to the room about 10 seconds later and was feeling so guilty she didn't make it on time to be here when he passed. I believe it was gods will for her not to be there in that very moment. Maybe she wasn't ready to let my dad go and it needed to happen this way for her and him also. God has his reasons.

We spent about 2 hours talking with my dad, encouraging each other, reflecting, greaving. My Uncle mark arranged for an Imam to come pray for my dad(dad believed in a higher power, and was raised muslim) She came and prayed while we all surrounded my dad and held eachother. I had no idea what she was saying but there was such a powerful feeling in the room. Her voice was so soothing and she had a smile on her face that was so good to have for all of us. My uncle taught us to say (no idea how to spell it) "Baba Halal Am ko" which means father please forgive me for any pains/trouble I have caused you."

Arrangements are being made to have my dad prepared for burial by an Islamic mortuary. We reserved a lot for my dad in the cemetery near to my grandpa. They got along real well. We plan on having the burial on Saturday.

My dad was so loving. He loved me no matter what I did. He always showed us love; his whole heart and mind were always on us before himself. His love was truly unconditional. Only by feeling the love my dad had for me, can I relate to the love god has for me. Without my dad's example that wouldn't make sense to me. They would just be words in a book. I don’t have children of my own, but I gather from other Men that a father’s duty is to put food on the table, and raise his children to be able to make it on their own in this world. Dad, you went above and beyond your call of duty. More than we could ever ask for. We are strong, healthy men, with good heads on our shoulders. Thanks to you, we have bright futures with endless possibilities. Thanks Baba

 Sad to hear of his passing but glad to see you all are finding comfort in his memory . My feelings are that your father was successful at raising you and your brothers and very proud of you . I wish you and your family all the peace and happiness this world has to offer .

 Sincerely ,

Rick 

Mehran

I am sorry to hear your sad news.

I am glad his family was together in his last days and that old wounds were not carried beyond the grave

Carol

Mehran, I'm so sorry for your loss. However, you honored his request and I'm sure he felt everyone's love in his final hours. When your pain lessens, you might find healing in sharing your experiences with others who are just beginning the journey. Check out Caregivers Sharing on this forum.

Meanwhile, take good care of yourself. It's been an emotional roller coaster, so it's time for you to rest now.

Hugs,
Connie

Mehran, Thank you for sharing your beautiful story.. like your family and your dad... Mike and I had time to say good bye... it made the difference... my prayers are with you and your family...

Sandia