Being the spouse of someone with liver disease is like being a nightwatchman, both in the literal and figurative sense. I started to be woken up to Garry scratching his skin, to him breathing erratic, to his legs jumping, or to the touch of his skin being so hot. I began sleeping with my arm on him like I did to my babies when they were new. I felt like no doctor was taking it serious enough. They couldn't find answers but I was watching him get worse.
After the first emergent situation, I started going with him to all of his appointments to be another voice and another set of ears. My husband is not a worrier and he took it all as it came but I felt I needed to push a bit. I wrote a running list of symptoms as I noticed them day-to-day.
His local gastroenterologist finally sent him to a specialist in Vancouver, who put in a referral for a liver transplant assessment. At home, after seeing him again, his gastroenterologist also put in a referral for a liver transplant assessment to rush the process.
That was August and that put our world into overdrive. The process to even see the transplant clinic required numerous blood tests, an echocardiogram, x-rays, a CT scan, etc. And, it requires him to get all immunizations again and all dental work done prior to transplant so that there is no risk of infection. That was not even the hard stuff.
In September, after all this preparation, we travelled to Vancouver General Hospital- Gordon and Leslie Diamond Health Care Center to be specific, for two days of appointments at the Solid Organ Transplant Clinic. That consisted of so many parts and brought our waves of unreal feeling into hard truths.
That morning we saw a psychiatrist, a social worker, and a dietician. The hardest part was the social worker appointment, although very much needed to wade through the practical aspects. She told us of the ins and outs of insurances, costs of living in Vancouver for 3-6 months, which is mandatory, the realities of it all and all the practical parts- like how much after care is needed and how much medication you will be on. She told us of every paper to get together and to get a will written.
I was done after this. Garry is stoic but I am sure he was too. It was too too much to take in at once, especially with thoughts of four kids in the mix. We had some lunch and took a walk in the gardens for some space.
After lunch we saw the coordinator who gave us the run down on actual transplant information. She was surprised that Garry was still working and we told her we were trying to wait until these appointments to gage timelines, etc. She told us about the risks with Hepatic Encephalopathy and urged him to take that step. She explained about how waiting for a cadaveric transplant works and how the list moves depending on a match and severity of need. She told us that you have to have a bag packed and ready to go in an hours time, and that 25% of the time it is a dry run and you may not actually get the liver you are called for.
The rest of the afternoon was with the transplant hepatologist fellow and transplant surgeon. The fellow took his history again and told us it all looked good to be put on the transplant list. The surgeon had a different thought and told Garry that he was not getting a liver transplant. At first we thought he was making a weirdly cruel joke after this long day of preparation for just that. He said he had to figure some things out but he may be able to do a shunt procedure that would be like a bypass to get blood flowing out of his liver. We went back to the hotel with a whole new set of questions running through our minds and mouths that evening.
A dentistry appointment for the next day was cancelled so we got some extra rest before heading to an anaesthesia consult.
For the last appointment, we met with the transplant coordinator again who had not gotten the surgeon's notes. She answered our new questions and put our paperwork on pause, which she said can be done over the phone. She told us that the rest of this process happened on Thursday, when the transplant team would meet to discuss each patient and come up with a plan.
We went home and waited. We started the process of filling out a million forms for disability with unknowns hanging in the balance. The next week we received the phone call on a message one morning. The verdict was that Garry was not discharged from the transplant clinic and they were ordering further investigations- to see a hematologist and get a new liver biopsy done at VGH, and then come back to the liver clinic in 4-6 months.
We were used to the back and forth, it has been our norm, but this was a disappointment with no mention of the shunt procedure and just more question marks. Garry was deemed a very interesting case. That is something you don't want to be his gastro doc tells us, and we know since we have been pulled back and forth in all directions.
So, that gets us to now, and the part where we were at the end of our strength and needed to let help in. We are not in the new norm part yet.
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