.What lung condition led to your need for a lung transplant?
I was diagnosed in 2010 with IPF (Idiopathic Pulmonary Fibrosis)
When were you placed on the transplant list?
I was placed on 'the list' in June 2016 and received my transplant on July 5, 2016 at age 68.
Did you know you'd spend about three months in Vancouver post-transplant?
We did. Being on a pension and my wife, Doreen, working at the time, made it a tough decision. My wife had to leave her job to be my 24/7 caregiver and this lowered our monthly income. She was not eligible for unemployment insurance. Somehow we needed to figure out a way to make it work.
Once on 'the list' you can get ‘the call’ anytime. Without knowing when 'the call' would come, how did you plan?
You really can’t book accommodation ahead of time. If you have family or friends living in the Vancouver area, it’s easier to find accommodation on the fly - but difficult if you're less familiar. 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 trailer so we could live in that but we couldn't 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. Thankfully it did.
Can you speak to some of the hardships you faced ?
We worried about our home being looked after in our absence. I was also concerned about making a will 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 difficult.
Doreen, as caregiver, can you tell us what the experience was like for you?
It was very hard and very scary. Before we got 'the call' I was always listening for his breathing. During the night was the worst because I was always scared to sleep in case his breathing would stop. When we finally got 'the call' the real preparation began, starting with getting Friedrich to the airport in Williams Lake. Next I had to arrange for someone to take our trailer to Vancouver and find a place to park it - all within 24 hrs.
Seeing Friedrich for the first time with all the hoses, tubes and wires in his body was frightening. Then came learning to take care of him - the needles and medications - it was almost like a “crash course” in nursing! Proper nutrition played a big part in his recovery, too.
Before the transplant, he would take care of the bills etc. but after his surgery I had to manage things. I would go back to Williams Lake for a weekend at the end of each month. With all the time at the hospital, it can be hard to find time for oneself and it does take a toll. After a few weeks I had my routine down pat and could relax a little more.
Then came time to go back home where I no longer had the support of the team at VGH. Life was different, but soon enough I got into a routine of medications and meals back home. It became our new normal. We informed our family doctor about Friedrich's transplant and new care. There were some ups and downs, but things were not as scary anymore. Being caregiver is a huge role.
How much did it cost you both to stay in Vancouver?
We were in Vancouver for about five months post-transplant as I was placed in GF Strong Rehab for a couple of months rehab after my transplant. The total cost was approximately $18,000 to $20,000. Most of that money was spent on gas going back and forth from Peace Arch RV Park to VGH. Then, there was the daily hospital parking of $18.75 per day. Parking costs sure add up! We also spent a lot of money on gas for hospital clinic visits post-transplant.
We brought our trailer to Vancouver so we didn’t have a mortgage back home but we did have trailer pad rental fees while in Vancouver. Even before my transplant, we shouldered a lot of costs travelling from Williams Lake to Vancouver, Prince George, Kelowna, and Kamloops for pre-transplant tests. It was expensive.
What advice would you offer future lung transplant patients and caregivers?