08/16/2024
When my husband got the news that he was in need of a liver transplant and we proceeded with speaking to all of the doctors and specialists involved it became very overwhelming. Not only did he have to be on a wait list, we had to start planning what we were going to do. There were requirements that had to be met before even being wait listed and the biggest one for us, was accomidations. We had to agree that we would live in Vancouver for a minimum of 3 months or they would not preform the surgery. A support person was required for the full amount of time while in Vancouver, and that was myself. We did speak with a social worker from the pre-transplant team who confirmed accomidations were tough to find, could be expensive and provided some suggestions. We were surprised that there were more accomidations for the other organ transplant and cancer patients but only 1 unit for liver transplant patients.
We put feelers out there to see what would be available, however with a transplant you can't make reservations somewhere because the transplant is short notice. A day or two at the most. So for us, we live in the Interior of BC roughly 470km from Vancouver one way. We knew we could commit as we had enough credit on our cards to pay for what we would need while down in Vancouver, it was the only way we could do it.
When the call comes in its all about getting ready to go. Trying to fit what a person may need for 3 months into a suitcase is tough. When our call came in, we booked flights to Vancouver for the next day and I was able to book a room at the Easter Seals. My husband was admitted the same day we arrived and prepped for surgery the next morning. Once the donor liver arrived at VGH and observed by the surgeons, it was deemed not usable and the surgery was cancelled. We flew home 2 days later. Once home, we tried to absorb what just happened and were suprised when the next call came in 2 days later. Again, we booked flights for the next day, I contacted Karen at the Happy Liver Society which was full but was placed on their list should it become available. I was fortunate to get a room again at the Easter Seals at least for a few nights. My husband was admitted and his transplant took place the next day on Nov 11, 2022. Easter Seals does not book by the month it is more for short stays for people coming in for treatment or appointments at $75 per night & $10 for parking if needed. That gave you a room with 2 single beds, bathroom, tv, small fridge and cooktop. My husband had his transplant and due to complications he under went 2 more life saving surgeries that same week. He was in hospital for 5 weeks and Easter Seals juggled their rooms and were kind enough to be able to extend my stay for that time while my husband was in hospital. It was not a given that I could stay that long and had to check in every few days to see where things stood. This was stressful but I was thankful to have a roof over my head. When it came time for my husband's discharge, he came back with me to Easter Seals and right away we both knew it just wasn't the right set up for someone who had just had 3 major surgeries.
Fortunately, the 2nd day after discharge, we got a call from Karen at Happy Liver and the Stacey House was coming available the next day. We were beyond happy. Karen herself came and picked us up and took us to the apartment. It was a huge sigh of relief when she opened the door and here was a fully furnished 1 bedroom apartment with a fully equipped kitchen, bathroom, a living room with a TV and couches, and a bedroom with a proper bed for sleeping. There was a small private patio and it was so quiet! It felt like home and somewhere I knew my husband could recover comfortably.
We knew we could stay as long as he needed and due to a few more complications we stayed for 4 1/2 months. Having flown down, my transportation each day to and from the hospital was by taxi or uber. A minimum $15 each way everyday. Being that my husband was a transplant paitent I tried to avoid buses and places were there there were alot of people. Groceries also were by delivery as I needed to stay with my husband 24/7. The Stacey House had everything you could need. The laundry room was right down the hall, a handicapped washroom, a big kitchen & area to gather in for when/if family comes down, garbage/recycling and the residents treated you like they knew you forever. They would stop by to see if we need anything, drop off goodies or just a friendly smile and wave while passing in the hallway. Having it wheelchair accessible was also nice too, for his walker to be able to fit through the doors. The best part, it was $50 a night with free parking.
It was a hard decision to know when to leave. We had the OK to go, however it was the uncertainty if we had to come back down what would we do. As we knew, there were more families like us that needed the Stacey House too. After discussing it with the doctors further we booked our flights for home and left in early April.
Unfortunately our story doesn't end there. Throughout April 2023 my husband was in & out of our local hospital 4 times. The last time he went in they discovered that his liver was failing due to complications. Within the next hour of this discovery we both were put on an air ambulance and flown back down to Vancouver. We had the clothes we were wearing, jackets and my purse. No clothes, medications or essentials. The ground ambulance picked us up at the airport and my husband was admitted. I frantically began phoning hotels for a place to stay for that night. This was May 2, 2023. I found a room on Granville not to far from the hospital for $189 + taxes per night and booked 2 nights. By this time I had already contacted Karen at Happy Liver by email to let her know we were back and should Stacey House become available we would be super happy to take it. When I left my husband that night, tired and overwhelmed I got to the hotel, settled in and ended up injuring my knee. I waited until the next morning before calling 911 and later on found out that I had broken my partial knee replacement that I had had just over a year before. I was picked up by ambulance waiting 6 hrs for it to arrive. I could not move the pain was unbearable. I was filled with so many emotions. I was taken to VGH and then transfered to UBC the following day for a reconstructive full knee replacement.
While I was dealing with my health issue, my husband had been told he would need another liver transplant, however they weren't sure of when that would happen. So I am in UBC for surgery not knowing if my husband would be in for surgery too and if I would get to see him again. Just before my discharge 2 days after surgery, I began calling around for another hotel to stay at close to VGH. The cheapest I could find for a basic room cost over $2100 for 8 days. I was sad, disappointed, worried and definately not what I had wanted to do but I was on a walker, barely able to walk and was desperate for a place to stay. Again, no vehicle, so I relied on uber, taxi and delivery service to get some basic necessities, clothes & food. At the same time, back and forth to the hospital each day to keep my husband's spirits up while he waited. I had been in communication with Karen regularly and on day 7 of my hotel stay, she called to say Stacey House would be available in a couple of days and I was beyond relieved. It wasn't until July 8, 2023 that there was a match and my husband went in for liver transplant #2. Knowing that we would have a good place for both of us to recover lifted off some of the stress. Once my husband had a few days of recovery behind him I flew home to get a few more of our belongings and our vehicle not knowing how long we would be down for this time. Having our own transportation made getting around easier, but instead of ubers and taxis the expenses became gas and parking. Even with accomidation and transportation the expenses still kept coming in as we were still paying rent and utilities back home. This stay in Vancouver lasted 6 1/2 months. It was November 2023 and we couldn't afford to stay any longer in Vancouver and received the approval to go back home. This time it was driving, but needing to stop and get a hotel 1/2 way. The decision to leave was very hard, alot of what ifs crossed our minds, but we had maxed out our credit cards so the choice was made for us.
It hadn't really occurred to us that a person could possibly have to go through more than 1 transplant, and financially it hit us extremely hard. Both my husband and I are on disability, however we made just over the provincial allowable limit for housing assistance. There was no way financially we would have made it through transplant #2 without the Stacey House and the help from the Happy Liver Society. In talking with other patients and support people and hearing about where they were staying, some in hotels, some in their vehicles, it was disheartening but we totally could understand. Our year in Vancouver cost roughly $25,000 plus our regular & annual expenses at home. Even once home, we are still receiving ambulance bills for 2023.
We are forever grateful to everyone who have been involved in my husbands journey. It has been a rollercoaster ride to say the least. He is still trying to recover with some challenges along the way. I know I can say for sure, more accomidations for liver transplant patients are drastically needed and the Stacey House is the perfect example of the ideal accomidation.
