With me being on a pension and only my wife, Doreen, working at the time, this was a hard decision. She had to leave her job to come and stay with me. This lowered our monthly income as she was not eligible for EI. We knew that we would have to somehow figure out a way for this journey to succeed.
What type of lung disease did you live with before your transplant and when you were diagnosed?
I was diagnosed in 2010 with Idiopathic Pulmonary Fibrosis.
When were you actually placed on the transplant list?
I was placed on transplant list on June 1st, 2016. My transplant date was on July 5th 2016. I was 68.
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 incur all the costs on your own such as, accommodation, food, gas, parking, etc.?
We were aware that we would have to relocate to Vancouver for a minimum of 3 months and that we would have to incur all our own costs. With me being on a pension and only my wife, Doreen, working at the time, this was a hard decision. She had to leave her job to come and stay with me. This lowered our monthly income as she was not eligible for EI. We knew that we would have to somehow figure out a way for this journey to succeed.
Once you are on the transplant list you can get the call anytime. What did you do to arrange your accommodation, etc., while waiting?
You really can’t book accommodation ahead of time because you have no idea when you are going to get the call. If you have family or, friends living in the area it’s easier to find accommodation on the fly. It is difficult if you are not familiar with anyone or, the area.
We did look into furnished rental apartments, but the prices were way out of our financial reach. Instead, we started looking into a place to park our 26 foot, 5th wheel trailer so we could live in that while in Vancouver post-transplant. We wanted to feel as if were still at home. We could not reserve a trailer pad to put it on as we had no dates. So, we had to take a chance that it would all come together at the right time. And it did!
What hardships did you face through being displaced from your own home for that period of time?
We worried about our home being looked after in our absence. I was also concerned about making a will and finalizing papers and legalities in case things did not work in my favour. Having to raise enough money to be able to take care of costs while in Vancouver, as well as still paying for our needs back home was also difficult.
Approximately how much did it cost you for the time you spent in Vancouver after your transplant? How long was that?
We were in Vancouver for about five months post-transplant. I was placed in G. F. Strong Rehab for a couple of months after my transplant. The total cost for the five month period in Vancouver was approximately $18,000.00 to $20,000.00.
Most of that money was spent on gas going back and forth from Peace Arch RV Park to Vancouver General Hospital. Then, there was the daily cost of parking at the hospital of $18.75 per day for three weeks. The cost of parking at G.F. Strong for my wife to visit and be with me for all my hospital appointments was expensive. We spent a lot of money on gas for the twice weekly clinic visits post-transplant. We now had the extra trailer pad rent for the RV for a while but we didn’t have a mortgage at home, so that was a relief. Then, we had the added costs of trips to different places to have testing done for my transplant approval. For example, we had to travel from Williams Lake to Vancouver, Prince George, Kelowna, and Kamloops. It was very expensive!
Doreen - can you tell us what your experience was like as a caregiver having gone through this journey?
As for the caregiver’s point of view, it was very hard and very scary. I was always listening for his breathing… During the night was the worst for me because I was always scared to sleep in case he just quit breathing. I started to listen for it in your sleep. When we finally got the call, the preparation began. That meant getting the coordination done to transport Friedrich to the airport in Williams Lake to fly to Vancouver. The transplant team supplied the flight so he was medivaced. I had to arrange for someone to take our trailer to Vancouver for me and find a place to park it there, all within 24 hrs.
Then my journey began. Seeing him for the first time with all the hoses, tubes and wires in his body was frightening and worrisome. There was also learning part of caring for him with the needles and medications. It was almost like becoming a nurse with no training – or what I call my “crash course” in nursing. I had to learn how to give the needles for blood thinners, as well as learn the schedules for his medications. Nutrition played a big part in rebuilding his muscles and body back to some type of normal again.
Then, came the role of taking care of all the business by myself as he was the one who did it all prior to his transplant. I had to make sure all the bills were paid.
I went back to Williams Lake for a weekend at the end of each month to take care of things there. The home bills were paid and the house was okay. I was to be available for all the clinic appointments and daily visits to see him. The long hours of visiting and getting back to the trailer, while trying to relax and have some down time for myself took a toll on me. After awhile I noticed I was starting to burn out. I wasn’t eating properly or getting enough sleep. I had to be prepared for when he was able to come to the trailer for a weekend.
After a few weeks I had my routine down pat and actually started to enjoy the role of caregiver. I relaxed a little more and became sure of myself and what I was doing for his care.
Then came the time for us to go back home. I would be on my own to figure things out and so far away from what became my security zone back at VGH. Life had changed drastically. After getting into a routine of medications and meals back home, it became our new normal once again. Our family doctor had to learn about transplants and Friedrich’s new care. There were some ups and downs but things were not as scary anymore.
Being caregiver is a huge role but one can be ready for it if you have a support system set up ahead of time. Learn a bit of what is in store for your new journey. Learning what is involved with the care of a transplant recipient will make that journey less daunting.
It’s a journey well worth every learning curve you go through.
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 Doreen have?
The biggest expenses are a place to stay, gas and parking. Then, you need to count in all the added medications that are out of pocket along with vitamins and supplements. The biggest worry is being able to find and afford proper accommodation for your length of stay post-transplant. This varies with every patient.
There is no easy way to suggest what others can do to make things better other than the major concern of accommodation and parking for the patient and caregiver. A place for them all to live and stay together for emotional and mental support would be ideal.