We kept a photo journal. to remember. These are the pics of the decline of liver disease, and the new beginning of building back up after liver transplant. Taken along the journey beforehand, until three months post-op. From October to January. Complications, glimmers of hope, help from community.... all of it.
This was the scariest night ever. I watched Garry go from belly pain in emerg, to severe pain, to shaking, to this. It has been hours, and in this moment, I am eating soup that tastes like an amazing borsch. Our people have already rallied. Grandma and Grandpa are at our home with the kids. My friend has brought me a bag filled with soup, teas and a mug, and some other needs. The scent of the tea from her kitchen calms. The nurse who is watching over Garry like a hawk has brought me some cheese and crackers too as I had not eaten and am shaking from low blood sugar. We are not alone in this. This was the beginning of this more intimate state of need. I sat in a chair all night watching and waiting for a plan, and for a bed to open up wherever the doctors decided he was going.
I had been sleeping in ICU every night. Garry's brother and sister came up to help with the kids, and his Mom was driving in too. The hospital sleep chairs are very hard and Garry really needed our strength beside him. We took turns staying. This lasted all of the fight long.
Little things like this were encouragement to me. I had this picture of these big pink clouds in my mind and felt like this pointed to the day we would fly out and he would finally get his liver.
This was a fight. Garry was paused on the Transplant list until his infection cleared. One of our nurses turned out to be from our liver transplant community. Her dad had a liver transplant and so she was such an encouragement to us, knowing what we were going through. A mom from our church turned out to be cleaning our room, and rallied with a nurse who also is in our church, to pray together for us. The messages on my cell phone never stopped dinging. Food for our family, money which greatly helped with having to buy food at the hospital, prayers of encouragement; all coming through. At this point I was praying that he would be well enough to see our kids.
The kids were able to come for a few minutes. I had taken a picture beforehand to show to them at home so we could talk about all the things Dad was hooked up to and calm fears. Some other family was able to stop in too.
These garden spaces in hospitals are essential. It is life giving to be able to take a breath in nature.
Enough said. It is cheaper if you pay for the week and no one wants to be worrying about tickets when your mind is set on the person you love and the stress that comes with that. Also, always take a pic of where you parked because when you leave the hospital, exhausted, you will not remember where you parked each time.
A place to find some healthy food and a calming atmosphere. Also, to be able to step outside the hospital but still be close by to get back within an hour while waiting on the doctors rounds.
This fight made us stronger. It is really an honour to love someone through sickness. It will change you in ways you cannot imagine. Compassion is essential. Partnering with the busy nurses serving day to day is also essential.
I cannot even imagine how Garry felt just holding on.
This was one of the most trying days. His heartrate spiked all of a sudden and stayed like that all day. Liver disease means watching your body fail until your gift of life finally comes.
The Meal-Train help is a life-giving action. To have your family taken care of and being able to focus on the fight takes a load off of one's mind. It also speaks deeply of love and of help being there.
I just thought Garry looked good in these pjs. The light was deceptive. His skin color was getting worse and worse, and he was very unwell. We were stuck in a room shared by four people. The bed beside us was rotating with hard circumstances and Garry could not sleep, which was needed desperately. I called out to my praying three and the next morn was surprised as the bed had been replaced in the night with our friend. She was a gift and she prayed on the other side of that curtain, even in her own sickness, the rest of the time for Garry. She was released the same day as Garry.
Being at the hospital was starting to be unbearable, with only little respite like this; being wheeled out to the sunlight.
Then we got to go home. It was so nice to be in our own home with our own kids. Garry had never had all this fluid come off for years and we knew that something was very wrong. We did not know if it was the new heart medication or other ones, but he was lethargic and so being home was short lived. This is the case with liver disease from all those we know. You approach the edge of death before you get to live again.
It felt safer here. It was not the meds fully affecting Garry, but Hepatorenal Syndrome.
This time we had a semi-private room on the general ward. Garry's mom and I went back to staying through the night. It was so much quieter and one nurse even helped to keep a quiet room for us. We are so thankful for those who go above. He desperately needed sleep to survive.
Blood is life.
We tried everything to get food into Garry. He could not eat. Everthing tasted awful to him and he felt sick all the time.
Prayer and our people is what got us through.
There are many parts to your blood. He was given them all, over and over.
Eventually Garry had to have a feeding tube put down his nose and throat. It was awful for him and made him gag. It had to go in this way because of risk of infection, but there was also risk of bleeding from varices in his throat. This was the first form of life support that kept him from wasting away anymore; a 24-hour drip. After a few days, he was ready to get it out and just go home. When you do not have an end date to know when a donor liver will come, even the strong have a breaking point. I asked him if he could just hold on two days and then we would make a decision.
The Head of Transplant's nickname is Buzz. This sign had stuck out to me for two nights and this night I stopped and took a pic. The next morn this doctor would call Garry to Vancouver.
That night some family came to visit Garry. Also, a friend who is a pastor came and prayed salvation over Garry and told him to ask for big things.
At home I had a discussion with the kids that Daddy could not live much longer without a new liver. We all cried and we had a prayer time together. I prayed that we could hold on two more days. My son prayed, "No God, one."
I had been painting and praying over Garry and sensed that my painting was done. It was of a sunrise. I showered and went to sleep in clothes knowing/feeling this is coming.
The next morning we got the call. Garry's mom called me and I raced to the hospital. Garry was taken by ambulance to the airport to meet up with the air ambulance.
You cannot imagine the hope restored in this moment.
The Transplant floor in Vancouver is a place of rest and healing and was so encouraging to be in. Garry was only a backup for the liver we had been called for. It was terrifying to hear we might be sent home but when they admitted us to VGH instead, there was relief. We waited to hear if he would get that liver that night and prayed for favour. We had that favour with an open bed and a sleep chair ready, which we were told by the nurses was lucky.
Garry's family was here with us. We had support at home and in Vancouver, for us and our kids. Good all around.
When the morning came and we had no news, we knew that someone else got the liver. Garry said he felt like he could do another week here in Vancouver, his spirit lifted, and I felt an unspeakable joy that there was hope to come. We had lots of laughs as a family, prayers as a couple, and a rest here.
That day we also got a note from a stranger, with whom we had a mutual friend. This person told us that they had been watching our day unfold on our journey page at the same time as their liver-needing friend; from getting a call for a liver, to pre-op, same blood type O. Their friend, a mom of three, received the liver. They then asked if the team that supported her through could now pray for us. We both said yes. Garry and I felt better knowing a mom, similar to us, had gotten the liver. (And, on a side note, she has become a dear friend.)
Garry went downhill and moved where he could be monitored for bleeding, kidney decline, and was put on oxygen.
It is here that Garry's sister and I teamed up on one of the transplant surgeons, poor fellow. I went for a breath of air and to pray, and she talked to him about Garry not wanting to be put on a ventilator or go on like that. I got back and caught the end of it and asked them when it was time to open up a cross-Canada call, and begged them to do something more, stating that he had two sons with birthdays this month and he could not die now. Later that day, this Fellow Surgeon and the woman who would be Garry's Transplant Surgeon the very next day, came back with news of a potential liver. A family was willing to donate their loved-one's liver.
Quiet mind, praying heart. Care-givers, make sure to also take care of yourself for just little moments. Especially, before you plead for your husband's life.
PS- Humor helps even in the darkest of places.
In parallel moments on this day, the transplant surgeons were harvesting the donated liver and making sure that it was viable, while Garry's kidneys were shutting down. He was on higher doses of oxygen and needed to be moved to the ICU to be put on dialysis. Within the same hour as we waited to hear anything hope-worthy, the ICU doctor decided that Garry needed to move. After we said our goodbyes and Garry asked me to pray, the nurses wheeled him down the back hall, and the transplant team called with news that the donor liver was viable. He would go straight from the ICU to the operating room and receive his redemptive liver.
This is what it looks like to put trust in a team of surgeons, and higher trust in a good God.
Garry was on 24-hour dialysis for six days. Getting litres and litres of fluid off of his body
When you have fought a long fight and the transplant comes, you take a deep breath, but there is still work to do. Healing starts here. It is hard to see, but your people need you, collectively.
They let Garry sleep, rest, medicated that first day to give him time to heal. The nurses told us that outcomes are better the sooner they wake up. We took turns, as a family, sitting with Garry one on one. It was hard to be there and harder to not be there. The family waiting room was right outside the door and we stayed close-by there for most of the time until it was time to sleep.
Garry did so good, so good, and he got his breathing tube out after a few days. This was the best.
Side note.
So grateful.
There are 25 doctors for us to thank at VGH, RIH, and KGH..
There are twenty-four noteworthy, incredible nurses to thank, as well as, four physiotherapists, two dieticians, and our transplant team nurse.
We are not naming names of anyone but ourselves in these stories, as to keep this personal, but we have a list; and that of family, friends, and community too.
Places like this are invaluable when you are living out of a city away from home.
Custom made wheel chair. Garry had to be lifted by a pulley to sit for the first time. Little by little, building back life.
The mundane things become joyous, the normal soothing.
He can eat! And it tastes good.
He made it to his son's birthday. With the breathing tube out, this was the first call home from Daddy. It was a celebration on both ends. I took a pic for the surgeon who we pleaded with. I saw him in the hall later and interrupted his conversation to share this pic with him. He gave me a big hug of thanks. It was mutual. So much thankfulness.
This room was filled with many families, different stories. It was good to be able to wait here while not able to be inside ICU at certain times, or to rest but remain close by.
When they move your bed, you know you are improving.
Healing is weird. You don't always trust it. Garry was moved on up to the transplant floor and I finally felt like this was where I could take a breath. It felt safer to Garry in ICU where it is one on one with your nurse. It was time to partner with the nurses, and Garry, and be closer again. I stayed with him after this for the remainder. At this point in the journey I needed him too. It was bonding to wait on doctor's rounds together, lean into the plan of everyday individually together, cheer over his progress, pray over him when it was needed, and watch shows in the eve a little after shift change when exhaustion wasn't taking over.
Food is life too.
It is dramatic how quickly one can decline in a hospital bed. These pics were important to remember for Garry, especially as brain fog and memory loss are a big part of end stage liver disease.
The dreaded feeding tube came out, sooner than the dietician was actually wanting. They let it go, thankfully.
Color returns so quickly. Stoic gentleman.
Changes in the right direction.
Happy and healing.
The work is not done. We are still now in the balancing of meds stage. Immunosuppressant medications are life long.
It was a climb back up.
There is perspective of what good means from this side of things.
Moving rooms farther away from the nursing desk means you are healing further.
These beds are few and necessary.
Serious business. Reminders of life.
It is like bringing a new baby home, the feeling of vulnerability leaving the hospital.
Had my boyfriend over. Haha!
So good to be in a real home. There are generous people in this world.
Gaining some strength.
This man looks amazing.
This is the Solid Organ Transplant Clinic. It's where we have our team of doctors, transplant nurse, social worker, dietician, and pharmacist. On this day they agreed we could go home. Labs and monitoring continue but home is healing.
Healing up well. It will take time still, but it is good.
