tHe haPPy grOUch

tHe haPPy grOUch

Saturday, June 15, 2013

Later Tuesday afternoon (after writing my last blog), we received some disturbing news from the kidney specialist in Bangor, which may have prompted his move to Mass General on Wednesday.

The kidney specialist told us that Dad's kidneys were breaking down due to a couple of reasons- the proteins that are released when there has been a heart attack and muscle decomposition, and from his liver failing. The kidneys can recover from the protein damage, but not unless his liver starts functioning. He said that 20-30% of patients see success with the treatment that Dad's receiving (supportive meds, proper nutrition, etc). When asked what happens to the other 70-80%, his answer was- they get a liver transplant, or die.
Dad is not a candidate for dialysis because of his overall general health (he's far too sick to tolerate dialysis). And according to Bangor (which was later confirmed by the liver team at Mass General), he's also not a candidate for a liver transplant. Transplant centers require that you abstain from alcohol use for a certain amount of time before you can qualify. And he has several other health issues that prevent him from being a candidate as well (the heart, the kidneys, etc)...

Wednesday was a whirlwind.. No, it was worse than a whirlwind. One minute we were waiting to hear back on a potential transfer to Boston. The next minute it was- they have agreed to a transfer, and are waiting for a bed to open. Then it was- There is an open bed, he's leaving in a half hour.
Troy, me, Dawson, Logan, and Mom all rushed to the hospital to say goodbye to him.
That's when last-minute plans were formulated for me, Troy, and Sharla to follow him down.

Dad was not excited about going, But when he got there Wednesday night, we were all fairly impressed with the staff, the patient care, the attention, the supposed plan...
And the plan since Wednesday night has been very similar to the plan in Bangor. After seeing the liver team yesterday, the only difference has been a change in one medication. (They were giving steroids in Bangor to try and assist the liver healing, and they just changed it yesterday to something else in Mass because he didn't seem to be responding to the steroids). That is also when the liver team told him and Mom and Sharla that he was not a candidate for a transplant.
The plan is basically supportive therapy (medications, nutrition, and physical therapy), and wait for his liver to (hopefully) start functioning properly. Everything else depends on it. Just wait...

Yesterday, the attending doctor on his floor told us that patients can recover from this, but that it will take a long time. It took a long time to get this sick, it will take a long time to improve.
Same as in Bangor.

Everything is the same as it was when he went in that horrible night. His "levels" are all the same (kidney and liver enzymes, white blood count, etc). He is still very ill, exhausted, and very confused. He still can't get out of bed. He is so yellow... (yesterday, he told his doctors he could just wash that off)...
There has been no improvement in two weeks.

We are all frustrated, exhausted, depressed.
One of the things that bothers us the most is Dad being alone there, unlike in Bangor, when we could all just go visit every day, whenever we wanted.
Sharla is frustrated as well.. she says- give it a few days and ship him back to Bangor. She thinks he is receiving the same care. And on the surface, it certainly appears to be the case. But what if it's not? What if Mass General can offer more than Bangor in the event that he doesn't get any better? Or heaven forbid, gets worse? I just don't know.

Side note.. On Thursday, the social worker for the floor came in to talk to dad. They talked a lot about his drinking, and about how sick he is... During one of his moments of clarity...
He talked about wanting to be able to do the things he loved again... his fairy garden, working on Bampa's tractor, restoring old cars.
He talked about his drinking.. He said- "I would drink a fifth a day. Fall on my face. My wife would help me to bed, and bitch at me in the morning. And I don't blame her. I was an ass."
He was crying.
So was I.

Leaving him yesterday was very hard. I cried off and on all the way back to Bangor. Mom and Sharla are there with him now, until tomorrow. But then what?
I wish I could afford to be there all the time with him. I am looking into different options, but none of them are ideal. Housing is too expensive, hotels are too expensive... There are some home-stay programs (much like housing a foreign high school student), but there is a waiting list and an approval process.
As long as Mom stays with Sharla in Portland, they can commute if they want, it's only two hours one way. Or they could take the train. But I can't stay there, Sharla's house is already full... Her and Gary and Avery, Gary's daughter and her two kids, and now Mom too.
Troy and I are trying to brainstorm ways to come up with extra money to at least allow us to get down there two-three days each week. But what about Dawson? What about the dogs? What about Kayli? At least maybe try to get me down there, so that Troy can be here for all the other stuff, for life that keeps going on when shit hits the fan... (Although the idea of traveling alone gives me anxiety on a very ridiculous level)... I guess I could drive to Portland, then take the train. Then come back the same night. But that's exhausting and costly too.
All the options just seem so unattainable...

Keep us all in your thoughts and prayers. Especially Dad.