The hardest was keeping our mortgage and household bills paid, while also paying to live in Vancouver. My wife was going home to check on things once every week or, two. We had the big expense having to pay for the ferry back and forth. Our youngest daughter was able to look after our dogs but it was so heartbreaking to be away from our pets. We had never been away from them for that length of time.
What type of lung disease did you live with before your transplant and when you were diagnosed?
In September 2013, I was diagnosed with Idiopathic Pulmonary Fibrosis and in July 2016 he received a double lung transplant. Prior to becoming ill, I worked as a delivery truck driver on Vancouver Island.
That must have been pretty scary on its own. When were you actually placed on the transplant list?
I was placed on the transplant list in June of 2015. I first met with the lung doctors in August of 2014. At that time I was told about the importance of losing weight and a series of pre-transplant tests I would be taking. They were also looking for any other health issues that would need to be addressed before I could qualify to be on the transplant list. I did have a few issues that were taken care of, but the hardest of all was the weight loss. It was difficult to work out while packing an oxygen tank. I was only able to do a little at first but through determination I did it! I started out small and did as much as my illness allowed.
Were you aware that when the time came for your transplant you would need to spend at least three months in Vancouver for post-transplant recovery? Were you also aware that you would have to cover all the costs on your own such as, accommodation, food, gas, parking, etc.?
When I was placed on the transplant list, we were briefly told about some of the issues we would be facing. I knew that I would need a care giver for the entire time while in Vancouver. Fortunately, Glenda’s job gave her medical leave. We then had an appointment with a social worker who would give us more information on what to expect. We were asked if we were prepared to live in Vancouver for at least 3 months, or more, after the transplant. They estimated how much the costs would be for accommodation, food, gas, parking, etc. We were also told that if we were unable to cover these costs we could possibly be taken off the list. Some information was given to us for grants and applications for financial assistance. But when we looked into those, we found that we didn't qualify for any of them. We were basically quoted $20,000.00 to $30,000.00, if not more for the recovery time in Vancouver. This would depend on how long we would have to stay post-surgery. There was also the added stress of how we were going to maintain our household in Nanaimo while recovering in Vancouver.
We all know that once you are on the transplant list you can get the call anytime. What did you do to arrange your accommodation, etc., while waiting?
The social worker gave us a list of possible options for accommodations to check into along with contact numbers and pricing. These places were good at giving you information and approximate costs. But, without an actual date of when I would show up, I had to cross my fingers and hope that, when I arrived, accommodation would be available. I had to hope that I had the money to pay for whatever was available. In 2016, the rates in Vancouver were $2500 to $3500 a month for a hotel suite or furnished apartment. That was within the area of Vancouver General Hospital.
We had no idea how we were going to do it without losing our house. Word spread throughout our family of what we were up against. We have a family member living in Surrey. She called and offered to let us stay there as long as we needed. We would just have to buy our own groceries, as she worked out of town and would only be home for the occasional weekend. So, we got a break on having to pay rent somewhere, but that’s where the gas for the travelling 5 days a week for follow up to VGH made up for it. We had to pay for the hospital parking every day, as well. We also had to eat out a lot due to the long days spent at the hospital while travelling back and forth.
Please tell us some of the hardships you faced going through being displaced from your own home in Nanaimo for that period of time?
There was no way to really prep anything because you never know when you were going to get “the call.” You pack a bag and catch the next ferry over. The next few days are all about the surgery and being in the hospital room. Getting settled and acclimated to being there takes a few days.
The hardest was keeping our mortgage and household bills paid, while also paying to live in Vancouver. Glenda was going home to check on things once every week or, two. We had the big expense having to pay for the ferry back and forth. Our youngest daughter was able to look after our dogs but it was so heartbreaking to be away from our pets. We had never been away from them for that length of time. It was very hard having our immediate family and friends so far away, too, we sorely missed that support. Thankfully, we developed a transplant family from the other patients and care givers attending the clinic while we were there. They are all still a special part of our family.
Approximately how did it cost you for the time you spent in Vancouver after your transplant? And how long a time was that?
It cost us approximately $18,000.00. And this was without having to pay rent. We got the call July 12th 2016 (best day ever!) and were able to leave Vancouver the first week of October. The transplant went very well, with no major rejection issues or, other health complications that required us to be in Vancouver any longer.
Do you have any suggestions on what could be done to help others from out of town that may be going through what you and Glenda have?
From diagnosis, try to start putting money aside! I hope people have friends and family members that can put on events to help raise money, like we had. Or, have a family member or friend in a service group that raised money for us, as well. Again, I don’t know what we would have done without their help.
First, ask family or friends if they have, or know anyone that you could stay with while in Vancouver, with no time line of when you will arrive or leave. That becomes a big blessing. If not, a benefit of staying close to hospital is not having the stress of having to drive in mainland traffic, just ask Glenda! But, there again are the rent prices. Staying close to the hospital could save on gas and parking. If you have to use the hospital parkade for the first few months, buy a monthly parking pass, it does help. You are able to come and go from the hospital without getting charged each time.
For the first year after surgery, save money for travelling to Vancouver for follow up appointments. For the first few months it works better to go the day before and stay overnight (hotel/motel). This way, you to get to the hospital early enough to have tests and x-rays required for clinical appointments. In addition, you’re not there all day having to catch a late ferry or, if staying a distance outside of Vancouver, driving home late having to face rush hour traffic. That’s stressful enough on its own.
The bottom line is to have a place for out of town transplant patients and care givers to stay that doesn’t cost a fortune.