Our Story about Kidney Disease
Do you ever think about Organ Donation?
I didn't think about it much until my doctor told me my kidneys were failing.
An average of 15 people every day learn that their kidneys have failed and it can be a very long wait for a transplant — if you are eligible.
We're Transplant Patients
I spent almost a year on a pre-dialysis diet then began peritoneal dialysis (CAPD) four times a day. Not only did this consume a great deal of my life, but I was faced with the very real possibility that my life may not last much longer.
My Kidney Transplant
After waiting 2 1/2 years, I received a kidney transplant on April 17th, 1996.
My brother, Todd, donated one of his kidneys — literally the gift of life!
With this transplant, I no longer needed to schedule my activities around four daily sessions of peritoneal dialysis and I have far fewer diet restrictions.
Medications Require Special Care
Because I'm on immune suppressants (anti-rejection medications) I have to be more careful than most people. This is an issue I take seriously.
The Kidney Foundation manual, Living with Kidney Disease:
Children and adults with chronic kidney disease (CKD) and kidney transplant recipients are at higher risk of serious illness, including COVID-19. There is an increased risk of more severe outcomes for Canadians:
- Aged 65 and over
- With compromised immune systems
- With underlying medical conditions.
[P]eople who are immune-compromised — because of chronic illnesses, medical treatments or medications — are at much greater risk of both contracting and suffering more severe symptoms from infections, including COVID-19. Aggressive physical distancing is wise and total isolation probably a good idea, if you can tolerate it. — André Picard
The Kidney Foundation has a COVID-19: How to protect yourself resource page.
It has links to PDF posters for those in self-isolation including one for those with an organ transplant or on dialysis (look for the Resources and Useful Links section.
In 2002 I married Michelle, also a kidney transplant. It is unlikely we'd have been able to marry if we didn't have healthy renal transplants and probably neither of us would be alive today.
- My kidney transplant was on April 17, 1996.
- Michelle's kidney transplant was on December 4, 1979.
Both of us continued to enjoy stable renal transplants until 2016 when Michelle was told that her transplant's health was declining.
This resulted in a drastic reduction in her ability to enjoy an active lifestyle and I became her caregiver (while still acting as my mother's caregiver).
Back on Dialysis
Michelle began hemodialysis on November 8, 2017 — barely a month before her transplant's 38th anniversary on December 4th.
Michelle on dialysis, November 8, 2017
She spent Monday, Wednesday and Friday mornings in the Royal Jubilee Renal Dialysis Unit hooked up to a hemodialysis machine while waiting for another transplant. The average wait time is too long because not enough people are registered as organ donors in B.C..
Being on dialysis was challenging because of her low energy level. She was unable to do much of what had been capable of with a fully-functioning kidney transplant.
My New Role as Caregiver
As her caregiver, I had to take care of meals and other daily tasks that she was no longer able to manage. I also accompanied her to her dialysis sessions where I assisted Michelle, other patients and staff as I was able.
Caregivers Have an Important Role
Many families have to take on the role of caregiver, often looking after aging parents while their own children are still in the home.
Caregivers have an important role in keeping patients (including renal patients) healthy and out of the hospital. This reduces the strain on our health care system but does add to family stress.
Michelle's Second Transplant
While on dialysis on Monday, December 23, 2019, Michelle was told that she was going to receive another kidney transplant.
She was to have a short dialysis session then head to Vancouver General Hospital via BC Ferries as soon as possible for a kidney transplant.
Checking in at VGH T4D
Once there, Michelle began the process of meeting the initial admissions requirements, then we were taken up to Solid Organ Transplant on the 4th floor where she was assigned a bed.
The organ was retrieved later that afternoon and we knew that the kidney was viable around 9:00 p.m. We were aware that there was a chance the kidney would be declared unsuitable and we'd return to Victoria where Michelle would resume dialysis until another suitable match was found.
Michelle's initial late-evening surgery was cancelled by an emergency, but at 4:30 a.m. on December 24th she was taken to the operating room for her transplant. We'd both been up since 6:30 the previous morning.
During the post-surgery phone call at around 9:30, the surgeon described her surgery as “challenging” but successful.
I got to see her in post-surgery recovery late that morning. Her new kidney was doing a great job of cleaning her blood and creating urine.
Michelle then began the long process of healing and restoring her strength.
Discharged on New Year's Eve
Michelle was discharged from Vancouver General Hospital late on December 31, 2019, with the expectation that we'd stay in Vancouver for up to 3 months — until the transplant team felt she could be managed by the Victoria Transplant Clinic.
The First Two Months Post-Transplant
We were very fortunate to stay in a furnished one-bedroom suite on the ground floor at Oakway Manor, on 10th Avenue West, across from VGH Emergency. Alfred and his grandson, Clint, both made our stay much easier.
Vancouver Transplant Clinic
In the following two months, Michelle and I would walk to the Gordon and Leslie Diamond Health Care Centre, across Laurel Street from Vancouver General Hospital, and wait for the VGH lab to open for her blood work.
We'd then head up to the fifth floor and report to the Vancouver Transplant Clinic where she would see a nurse and nephrologist (renal doctor) as well as any other required consultations such as the pharmacy to renew her anti-rejection medications.
This took much of the morning (from about 6:30 until 11:30 but sometimes longer).
For the first while, we went to Transplant Clinic twice a week — Tuesday and Friday mornings. During this time her staples were removed and the drain to her new kidney.
Later this was reduced to once a week on Wednesdays until the stint had been removed and the doctors were satisfied that she was no longer is danger of rejection.
The Return Home
On February 19th we were told we'd be able to return home to Victoria. We packed up our belongings and the food and other items we'd acquired while in Vancouver and returned home on the February 21st 5:00 p.m. ferry with our friend, Lenna, who'd brought her car over to take us home.
Michelle had her first appointment at Victoria Transplant Clinic on March 10th at which time she ceased to be a Vancouver Transplant Clinic patient.
We're thankful for the wonderful care before and after her transplant at VGH T4D ward as well as during the two months of post-transplant follow up at Transplant Clinic. The doctors, nurses and other staff helped us through a difficult time.
The Pandemic Arrives
We arrived back in Victoria shortly before the COVID-19 pandemic arrived in early March. Michelle's March 10th clinic was the last one to be held in person. Clinics are now conducted by phone or virtual meeting connections.
While both of us are more vulnerable that most due to the immune-suppressant medications required to avoid rejecting the kidney transplant, Michelle was even more vulnerable as a first-year post-transplant patient.
We quarantined at home, except for medical appointments (blood work, transplant clinic, etc.) and my rare trips to obtain food supplies. We were fortunate to have help in that regard from friends and church members that went out of their way to support us.
Wear a Mask
Because we are more vulnerable, we do not have visitors inside our house and wear masks when we're out. We also depend upon everyone else to wear masks and keep their physical distance so that we can stay safe.
I've made significant changes to my business protocols, including ending onsite and in-person services. Clients can drop off computers for servicing or get support via email and phone.