Nightwatchman #liverdiseasesucks (Part Three)

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.

And Then There Was More. #liverdiseasesucks (Part Two)

2017. Worst summer in BC history? Maybe. Fires were everywhere and the smoke was densely settled into Kamloops, grating on our nerves and bodies. My little guy was not doing well in it all and my husband, Garry, was working out in it at the Copper Mine. I just wanted some relief from worrying about keeping my family healthy, even inside the house. Smoke winter I started calling it. Like a depressive end of winter, stuck inside feeling, dark and suffocating.
Our vacation time came and we escaped to Vancouver where the air smelled like cedar and the wild ferns grow. All six of us wandered through Othello Tunnels on the way, explored the Vancouver Aquarium, and searched for treasures at Crescent Beach with Grandma. It was a huge relief to be out of the smoke.
Garry was not feeling great though and after we got home, just in time for the smoke to finally clear, he was not waking up for more than a few hours at a time. The bleeding had started again. He went into emerg at the hospital twice and was given a prescription antacid but was getting worse still with no one listening to him. He called me while I had taken my daughter's ninth birthday out- he was heading back to the hospital when I got home.
The terrifying started again. I joined him at the hospital. He was sort of out of it. He had lost too much blood. The doctors in emerg asked him so many questions and brought in two internal specialist doctors who were way too blunt with the results of an ultrasound that he had had before our holidays. The result: liver cirrhosis. But, he thought he didn't have liver cirrhosis- it was tested. (One biopsy didn't work, but one came back on a scale of 1.1- all good.) They assured him he did have it and he would have a barraging of tests. (They did not realize he had already had all these tests at the beginning of all of this.) After that Garry was rushed by ambulance to Kelowna, to the nearest gastroenterologist on call. They started him on a blood transfusion on the way. He received five units of blood and a unit of platelets. That part scares me. It is way too much.
He was diagnosed with Gastric Antral Vascular Ectasia or GAVE for short. A disease that causes blood vessels in the stomach to dilate and bleed. It is concurrent with cirrhosis of the liver. After that Garry has had to have a scope and cauterizing procedure done every six weeks to 2/3 months by his gastro specialist. He also had another blood transfusion in the Fall after throwing up a blood clot.
This is our new reality. Treating bleeds. A great thing about the human spirit is that if you experience something long enough, it becomes normal. And so, this is was our new norm.

At the Beginning. #liverdiseasesucks (Part One)

Four years ago this all began. My husband, Garry, hit a ram (a mountain sheep) on the way to our son's soccer tournament. He called way too soon after leaving home and I knew right away something was wrong. The truck was wrecked and the sheep was dead, but they were fine. They got a ride into Ashcroft to get checked out and after being cleared to go, carried on to soccer. I met them down at the field with the rest of our kids. My son was a little shaken about the sheep, but thank God they were okay.
A few days later Garry started to have stomach pain where the airbag had left a bruise and then there was signs of bleeding. Our family doctor ordered some blood tests and found that his blood was off. His red blood cells were low and his platelets even lower. Garry explained that he often felt like his limbs were not getting enough oxygen and that is exactly what was happening. She told us that these things were not usually found until someone was really sick. This was a good thing to find early. But, why were his counts off? That year or two was a bit terrifying in parts- you never want to worry unnecessarily, but test after test began to be ordered. Ultrasound, a million other blood tests. Words were thrown around like liver cirrhosis and bone cancer (that makes me sick to my stomach even writing it). Garry's spleen was also enlarged and so it pointed to a blood disorder, which often is a result of something else, or liver cirrhosis. Garry began seeing both a gastroenterologist in Kamloops and a hematologist in Kelowna. They found nothing conclusive in all the tests. Even two different liver biopsies and a bone marrow biopsy and he seemed to have dodged a bullet. Both the blood and liver specialist ordered blood tests every six months to watch him just in case, but nothing was moving, and eventually they told him they didn't need to see him anymore. We went on with life. We moved to Kamloops. It was no longer worrisome, since nothing serious ever showed up. It was our norm.

Thoughts on Joy.

Thoughts on this everyday morn.... When did we forget how to dance?

I was six years old when I learned how to dance. To really dance. Breaking free from any insecurities and realizing that we could rejoice until giddy under the praises of a loving God. No one shamed us, no parent stopped us- in fact they joined us. In a church whose identity became confused after throwing off all boxed-in legalistic ideologies. A church who through prayer, prophetic, and praise lost their denominational rights. What a thought, and one that gives me joy- to be so wrapped up in Jesus that no one can label you by a regulation.
Anyways, in that church (that sought the Lord) I learned how to freely dance. In my home sometimes I still freely dance. But, in the church we have lost our joy. It is so infrequent that every prophecy spoken out seems to be reminding us that God really loves us. He loves us. We cling to these songs of the same, but we are once again bound up with insecurities about who we are and how we come across. We are so worried about looking loving enough from the outside, that we have forgotten that we are loved wholly inside. We dance out of joy and we rejoice when we feel loved. When our souls are fueled by love and secure creativity. When did we stop being creative? When did we stop being expressive? When did we lose our ability to dance?
I learned to dance again when I was sixteen. In a church that drew in all types from all different walks of life. It ended in a mess of human chaos but it was not all for nothing and I refuse to forget that anymore. It was a time that reminded us to dance together. A human or two, or three, they failed us, but God in our midst, He caused us to dance.
I long for a place that facilitates the joy that brings us to dance. We have spent so long pleading on our knees, and God has heard us over again. I pray that this year we will hear the songs sung over us and it frees us to openly and physically rejoice. I hesitantly say this as my body is tired but I know that this year is already marked with joy. There are some good promises in the works.... and God never fails.