The Transplant is Coming. #liverdiseasesucks (Part Six)

We are through to the other side of transplant and Garry is healing. The hard and busy battle and being away from home has kept me from writing this story, but it is maybe better to tell the rest of the story from this side of things. There is hope and joy after the stormy parts....
We were not home from RIH for long, only five days, before we knew we needed to go back to the hospital. Garry was so weak and feeling lethargic. He started talking practically about last wishes and I was worried the same way.
When we got there to emergency he was hardly able to stand and was readmitted. He had developed Hepatorenal syndrome. Essentially his kidneys couldn't bear the weight of keeping up with his failing liver, and they began to fail too.
Garry ended up back on a general ward, and thankfully to a more quiet room. At this point he could barely stomach eating anything and was wasting away more, with only enough willpower to walk a few steps to the bathroom. A feeding tube was the plan. This was one of the hardest things to bear. He pushed through for a few days and then wanted to take out that feeding tube and go home, anything for relief, but knowing that this was to sustain him. The doctor's were trying to keep him on that transplant list and stable, and also giving him daily blood transfusions. I asked him if he could just hold on for two more days. Surviving through so many medical interventions without an end date is very hard.
I went home that night and had a serious talk with our kids. We had talked with them at every progression, as it was important to us to be forthright with them. I told them that Daddy could not live much longer without a new liver. They already knew but saying it out loud brought a ton of tears and we had a prayer time together asking God for two more days, to which my son said, "no, one."
A pastor friend of ours had gone to the hospital that night and prayed with Garry too. Garry's mom was on night watch duty (as we had been rotating staying with him on a constant again).
The next morning just after my alarm went off, Garry's mom called and said to come right away, that the call had come and there was a viable liver. I had slept in clothes to go knowing it might come and yelled out the news to wake everyone as I ran out the door. After I got to RIH it was only about half an hour and Garry was loaded on a stretcher and driven by ambulance to the airport, so we could take an air ambulance flight to Vancouver.
When we arrived at Vancouver General Hospital, we met Garry's family at the door and they joined us up at pre-op on the transplant floor. The liver specialist came in and told us that Garry was the backup and that they might be sending him back home later if he did not receive the liver. This was devastating and we pleaded our case that Garry needed to stay even so. And stay he did, after they saw how sick he was.
Garry was admitted to the transplant floor and we hoped hard. We waited that day and evening and it was a dry run, where he did not receive the liver, but someone else did. Being on the transplant floor and being in Vancouver felt like such high standard of care and we were both still relieved to be there. Garry was even in good spirits and said he could do this for another week. He had some good laughs with his brother and sister the next day, and more blood transfusions to keep him going.
After that, it all went further downhill, and because of internal leaching of blood the doctor sent Garry to the HAU (or step down unit in ICU). He was put back on oxygen too.
In the HAU we literally begged the transplant team if they could open up a call across Canada for a liver. It was November and our two sons were celebrating birthdays this month and Garry could not die.
By the end of the day the transplant surgeon came back, telling us there was a possible liver. The surgeons would let us know if it was viable by the next afternoon, and if it was, the surgery would take place that next evening/night.
After this potentially good news, the night was horrible. Garry was so sick, shaking with nerves and couldn't calm or take anything for it, and I slept on two hard chairs pushed together, praying he would make it through.
That next day, November 13th, we waited for word again. Less willing to shout the news out just yet. Not trusting that this was it. Garry's mom arrived that afternoon and we all waited together, knowing the team of surgeons were explanting the donor liver sometime that afternoon. By that evening Garry's kidneys were crashing and he was potentially going to be moved to the ICU and put on dialysis. At seven o'clock we were told that we would know within the hour if the liver was viable, but before that even was resolved the doctor decided Garry needed to be moved to the ICU. Regardless, he would be prepped if it was a go, and if not, put on dialysis. We were told to say our goodbyes because he would not be awake when we saw him on the other side and would be on a ventilator. I realized later on that he was literally being put on life support, but my mind was still holding for that transplant and did not even think about it in that moment. They took him away and knowing we were still waiting on a verdict, I was heading straight to the ICU to find the family waiting room and wait on the call. Before we even found the family room, I got a call on my cell to come, that the liver was viable and they had tried to stop the nurse before she left, but she was already in the hall. From death would come a life....

Normal Complications. #liverdiseasesucks (Part Five)

And, so we are here. At home still and again. Recovering from the hardest month yet. It is October 2019. September consisted with a trip to emerg every second week. September was one year off work for Garry, and one year since being referred to the Transplant Clinic in Vancouver. The catch to receiving this life-giving liver is that you have to be the sickest to be next in line for transplant. I am ever watching, ever wondering, if we are at this point yet. I know the stages, the signs. My old, good, wonderful friends who have been through transplant have made us well aware. Our new, welcoming, liver mentor friends have told us all of their stories. We know it has to get worse to get better. We are finally now at the worst.
Another two weeks had passed and Garry was having abnormal (for him) pain in his abdomen. You get used to the disease developing little by little, and at this point it was hard to decipher what was emergent to investigate and what you just deal with. After three days we decided a trip to emerg again was probably a good idea. It went downhill quickly from there. We spent one week in ICU, and I really do mean we as I was not leaving him alone morning or night. And then, we spent another week and a half in hospital in order for Garry to be stable enough to come home. All the end stage liver disease symptoms that he has not dealt with yet showed up; varices, ascites, infection...
Through this journey it has felt like the heat has been turned up progressively and that we are being prepared in each new wave of hard. This seventeen days in our hometown hospital was just the same. Family stepped in, friends lent their arms, and so many others came close with meals and prayers. We found a rhythm that we wished we had done already in Vancouver, but now are prepared to overcome. Kids had a home base and were able to be in their own safe spaces with my mom at our house, and they unknowingly and increasingly needed that. Garry had his mom and sister, rotating in and out with me to lessen the burden and give him support wholly. And, just when it felt like too much to sustain any longer, Garry was released from hospital to come home.
Now, we know the silver lining is that he has been pushed to the front of the list, and we are stronger and more prepared once again as we take a breath. It is full care now, as Garry is very weak and needs more caregiving as an outpatient, and this in itself is building our understanding of what is yet to come.
I am writing these stories very simply to let anyone in, and especially those who will have to walk this journey after us. It is Garry's story within our family and so I have purposely left out some details for him, but we both want it to count. There are also intertwining stories of hope-filled gifts of uncanny circumstance that have gotten us through, that we can share over tea when we have a minute.

One more year in. #liverdiseasesucks (Part Four)

The last two years have all blended into one in my mind. Two summers ago we stepped into this medical hardship. One summer ago we stepped into transplant preparation. I wish I had kept up writing but life at present is like a full time job, emotionally and physically, to keep up to all the protocol that goes along with disease.
Garry completed all the doubled up tests his transplant team required to be put on the transplant list, and still no findings of the cause of his liver disease. He was put on the transplant list just before Christmas which opened up a whole new part of this all that we were not prepared for quite yet. It was a relief for both of us to be put on pause again a week later. Honestly, we knew we needed more time.
The transplant team in Van tried another direction after this but still to no settled end. Come Easter weekend Garry was back on the transplant list. We were so hopeful that it was coming. Things were lining up. Everyday was a good day for a liver transplant. We had more support and questions answered and were ready now for the whole family to be cared for.
With further disease there is often complications. The doctors continue to monitor everything.... blood, liver, heart, etc. That is where we are at; pressures are building where scar tissue is blocking blood flow. So Garry is back on pause. We are tired. Trying to rest in between so many appointments. Also, life continues for all family members. We have had other medical stuff to deal with and are juggling a lot of weight. We forget to ask for help because this is long. We are tired and hate the abnormal attention. We long for the mundane... summer lake trips, laundry folding, swim lessons, barbeques, and easy conversations. I owe a dozen people coffee dates but I am so tired. We need relief and respite. It comes in little bits, and then another hurdle it seems.
I am still hoping that soon we will be headed to the Lower Mainland for the final leg of this journey and onto recovery. Please pray for our whole family and for our whole selves- spirit, mind, and body. So many have been so kind and that is everything right now.

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.