A few days after Ray's surgery, he had to go back to ICU to be re-intubated. It was a very scary time. He was heavily medicated, fighting pneumonia and there was the possibility that his diaphragm was paralyzed. It was about to be Christmas – a time he loved and was going to miss again.
What type of lung disease did Ray live with before his transplant?
Idiopathic Pulmonary Fibrosis.
When was he actually placed on the transplant list?
After 1-2 years of specialists in our own community, Ray was eventually referred to Dr. Khalil at Vancouver General Hospital and then onto the lung team. He was advised in early 2016 that he would likely be looking at a transplant but was completely against it.
From December 2016 to January 2017, he was hospitalized and we were told that his oxygen level had deteriorated. He was then transferred to VGH and underwent numerous tests that were required for pre-transplant placement. These tests revealed another obstacle. Ray’s body was creating an abnormal amount of antibodies – that would make finding a match that much more difficult. He was on oxygen as needed.
In November of 2017, Ray was officially placed on the list. He had struggled with the weight requirements due to his declining energy and prednisone. We were told that he would remain on the list for 2 years – it seemed that Ray likely didn’t have 2 years, but we certainly didn’t “hear” it.
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.?
Yes. We had family in the Vancouver area and Langley that we could stay with. It was also discussed with my employer that I would receive compassionate care benefits. We felt we had time to put money away and establish some kind of reserve of funds.
Once you are on the transplant list you can get the call anytime. What did you do to arrange your accommodation, etc., while waiting?
I don’t know how prepared we “would” have been as the call came December 15, 2017 – exactly 1 month after Ray was listed. Needless to say; we were in shock! Ray was out Christmas shopping with his little oxygen tank, and I was the one at home that received the call. Sadly, the opioid crisis was providing donors and a near perfect match had been found! Ray was sent via helicopter and I just about made the 5 pm ferry to meet him at the hospital and walk with him to the OR.
Please tell us some of the hardships you faced through being displaced from your own home for that period of time?
Ray’s surgery went very well, however given that he had not adequately used his lungs for so long (short shallow breathing), his diaphragm had become weak. A few days after the surgery when he was in the 12th Floor Step Down unit and had to go back to ICU to be re-intubated. It was a very scary time. He was heavily medicated, fighting pneumonia and there was the possibility that his diaphragm was paralyzed. It was about to be Christmas – a time he loved and was going to miss again.
It was at this time that I felt I needed to be closer to the hospital for my own sanity. I was beginning not to remember how I drove home each night. We had a list of places, so I started looking.
This setback meant a longer recovery period for Ray once he was able to recover and return to 12th floor. He was weak from all the time spent in bed.
He also reacted badly to one of the medications used to promote sleep and it caused heart issues. It delayed the removal of his trachea and there was talk about his potentially needing a pacemaker. This did not have to happen once this particular medication was stopped – it was our questioning and insistence that prevented an unnecessary surgery.
Can you tell us what it was like to have gone through this experience from a caregiver’s point of view?
Don’t be afraid to ask questions! The doctors and nurses are amazing, but they are not gods. If you have a thought or question, voice it. Trust your gut.
Utilize the help that is available, talk to a social worker, support groups and spiritual advisors. The family care office on the main floor was amazing. You should talk about your feelings, but with safe people as not everyone understands what you are going through. Keep active – there are pools and walking areas close by and easy to find. While in hospital, help with your transplant recipients’ care (changing beds, tidying up, personal hygiene, etc. Do what YOU are comfortable doing). It makes you feel useful and helps staff.
Take breaks to recharge yourself. It’s a long haul and for some may result in a form of PTSD when the dust settles. Be gentle on yourself. It is an incredibly emotional, physical, mental and spiritually draining event for the caregiver too.
Could you let us know approximately how much it cost you for the time you spent while in Vancouver after the transplant? How long was that?
$14,000.00 for 5 months.
Do you have any suggestions on what could be done to help others from out of town that may go through what you and Ray have?
If you have a Vancouver address, change your vehicle insurance temporarily. If you have a place close to the hospital AND Vancouver insurance, you can apply for a parking permit from City Hall. This will save you money on parking!
There are some landlords that will try to take advantage of your vulnerability – be strong and pick your battles. Having a family member initiate a GoFundMe account or any type of fundraiser event(s) will help. Folks are very generous, often just want to help and every dollar counts! Don’t be too prideful to accept the help.