Tuesday, April 15, 2014

Waiting Sucks

My wife of 37 years is sick. 

Her liver is failing her. 

While it does this, it causes her abdomen fill up with fluid. This has to be surgically drained every three to four weeks. It's been averaging around twelve liters each time. Last night they drained off fourteen liters. That's about thirty-five pounds of fluid.

Her doctor says that without a liver transplant, she has from between two to five years left. The catch is that for her to even get on the transplant list, she needs to lose a bunch of weight. In the neighborhood of a hundred pounds.

They've recommended bariatric surgery.

That's where she's at right now. They took her into surgery about thirty minutes ago. She'll be there for two to three hours.

Waiting sucks.

Before her surgery, her Doctor informed us that with her condition, this surgery is risky. She seems to have a fifty fifty chace of surviving. Not good odds in my book. But it has to be done. There's really no choice. Take a chance for a better life now or face an early death later.

Life sucks. Waiting sucks.

Her name is Ula Garrison. (pronounced yoo-la)

I'd appreciate it if you'd say a little prayer for her.


UPDATE: My wife is out of surgery after five and a half hours.

Her doctors say the next few days will tell the tale. If she tolerates the recovery and begins to heal, she'll be going home an a week or two.

Thanks for your prayers. We both appreciate it more than you know.

4/22/14: My wife is doing fairly well. She's up and doing some walking in the ICU hallways.

Her strength is improving. She will have another surgery, probably on Thursday or Friday to install a shunt between her liver and a large vein in order to redirect fluid from pooling in her abdomen. This surgery is fairly risky, so we are doing some serious praying.

She's had her second surgery to install a shunt that takes the excess fluid from her liver and directs it into her circulatory system, but it's not handling the volume of fluid she's producing... so theyre planning a THIRD SURGERY to take place in the next day or two. It's 4/27/14 right now. I don't know how she's able to take this abuse, because that's what it is, even though it has a purpose. She's bruised from all the incisions, blood draws and even the handling by the staff here at Salt Lake Regional Medical Center, even though she's getting excellent care here.

I'm not sure how much more she can handle before she just gives up.

4/30/14: She's had a third surgery to put in a second shunt because the first one isn't able to handle the volume of fluid produced by her liver. This surgery failed because the doctor wasn't able to attach the second shunt to her vein.

Now they're planning a fourth surgery to put in a different kind of shunt. A TIPS shunt.
The problem with this is that one of the side effects is that she'll suffer from memory loss and diminished mental acuity. It's not something we want but it is necessary.

5/2/14: The Doctor told us this morning that he's going to attempt to install the same type of shunt as in operation #3 but that he would insert it through the jugular vein. This was at 9:00 am this morning. Ula went into surgery at 11:30 am and is still there. It's 1:40 pm right now... More waiting.

2:45 pm: The fourth operation seems to have been successful. It will take a day or two to see if everything's working as it should. Then, if all is well, she goes to physical therapy and then home. The waiting may be coming to an end.

5/5/14: Just got word that Ula will be released from the hospital tomorrow. She'll be transferred to a physical therapy care facility for a few days, then to home.

It's been three weeks in the ICU as of today. This has been the longest three weeks of our lives. I don't want to do this again.

Home sounds real good right now... at least we can see the light at the end of the tunnel. I just hope it isn't a train!

5/14/14 After four weeks in ICU, she was finally transferred to a rehab facility for physical therapy. Her release date is somewhere around the 25th of May... then we're going home!

 Ula with her physical therapist

5/21/14: We received word today that barring unforseen circumstances, Ula will be released to go home on Monday, 5/26/14!

This makes us very happy. Ula has been in the hospital since 4/14/14. That's 42 days for a hospital stay that was supposed to be ten days max.

This has been a nightmare, but she's feeli g much better, she's stronger than she used to be and the symptoms of her cirrhosis are greatly diminished. That's something to be thankful for, at least.

Thanks to everyone for your prayers.

Here's hoping the 26th comes without any complications.

6/12/14: Ula had a major setback. On 5/24/14, she suffered extremely high ammonia levels. This caused her to lose control of her muscles resulting in her squirming and thrashing about constantly until she could be transferred to a hospital and sedated.

She suffered short-term memory loss, not even recognizing me. She was placed in a coma for five days until her body chemestry could be brought back to normal.

She's back in the rehab/physical therapy hospital to regain what she lost during the period of infection. This has been a difficult struggle for the both of us.

When she started this adventure, her weight was well over 300 lbs which was mostly fluid retention due to her liver disease. She weighed in yesterday at 229 lbs. Well over a hundred pound loss.

We still have a long way to go, but she is very close to being placed on the liver transplant list. Once there, we will have to find a place to live in the Salt Lake City area. Should a liver become available, we'd have to be able to get to the hospital as soon as possible. Living in rural Nevada isn't an option in that circumstance.

More to come.