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.