Our Story About Kidney Disease
We're Transplant Patients | Renal Dialysis | Michelle's Second Transplant
Register Your Wishes
COVID Restrictions Remain for Us
Business Protocols | Masks Required | Medications Require Special Care
Many folks have been able to return to near-normal conditions. This is not true of transplant patients, including Michelle and I, because we're more vulnerable.
Solid organ and hematopoietic stem cell transplant recipients have a higher risk of severe COVID-19 disease and risk of hospitalization, intensive care admission, and death than the general population. Due to reduced vaccine effectiveness caused by immunosuppressive medications, it is common for vaccinated transplant recipients to get COVID-19. This is called a breakthrough infection.
— COVID-19 therapeutics in transplant patients
Changes to My Business Protocols
I've made significant changes to my business protocols, including restricting on-site and in-shop services.
Clients can arrange to drop off computers for servicing or get support via email, phone or virtual meeting software.
Few Visitors
Based upon advice from the Transplant Clinic, we do not permit non-essential visitors inside our home including my clients.
Masks Required
Because masks are more effective when worn by everyone, we require visitors and clients to wear a mask as well as being fully vaccinated.
On-site Protocols
When I feel safe doing on-site visits, I must ensure that certain protocols are followed and that any locations I enter are safe.
I am unable to meet in smaller spaces with either insufficient air flow or too many people including when performing on-site or in-person services.
Thank you for understanding.
Why We're More Vulnerable
Transplant patients are more vulnerable than most.
Our anti-rejection medications are immunosuppressants — they suppress our immune system so that our transplanted organs aren't rejected.
Reduced Protection from Vaccines
We are both fully vaccinated and continue to get boosters as recommended by our transplant clinic.
However, vaccination provides much less protection to transplant patients than the general population.
Despite three doses of vaccine, some transplant recipients will continue to have a poor response, about 40% to 50% of the time compared to the general population and could remain unprotected.Because of this, it is critical that household contacts and healthcare workers be fully vaccinated and that extra cautions should still be taken.
— Kidney Foundation
The Consequences Severe
The consequences of being infected with even the “mild” variants of COVID-19 can be severe.
When pre-existing conditions are mentioned, that includes transplant patients. Immunosuppressants make us far more likely to become severely ill:
Compared with the general vaccinated public, [organ-transplant recipients] are 82 times more likely to get breakthrough infections and 485 times more likely to be severely ill.Should they get infected, their risk of hospitalization is a coin flip. Their risk of death is one in 10.
— The Atlantic February 2022
I've since read reports from clinics stating that one-in-five transplant patients infected with COVID-19 have died.
Wear a Mask
We require everyone to wear masks and keep their physical distance so that we can stay safe.
Our transplant clinic team mandates that we only meet with people that are fully vaccinated and wearing a suitable mask as one of the “extra cautions” mentioned above.
Several scientific studies have concluded that mask use helps control the spread of COVID. One of the most recent was published in the peer-reviewed journal, the Proceedings of the National Academy of Sciences (PNAS), this spring. It analyzed mask-wearing in several countries and found that it was associated with a notable reduction in transmission.
— Toronto Star June 11, 2022
Our Outside Activities Restricted
We MUST continue to restrict our activities in order to avoid being infected with COVID-19. We quarantine at home, except for medical appointments and blood work. Other outside activities are severely restricted.
[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
It also means we've been unable to attend in-person church services or eat inside a restaurant. Shopping trips are for essentials and completed as quickly as possible.
We were fortunate to have help from friends that supported us by picking up groceries and other essentials when conditions were especially unsafe for us.
We're Transplant Patients
My Story
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 would be significantly shortened.
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 and have meant significant continuing restrictions in our activities.
Michelle's Story
In 2002, I married Michelle, also a kidney transplant. It is unlikely we'd have been able to marry if we both 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 first kidney transplant was on December 4, 1979.
Michelle's Transplant Failing
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 a second transplant.
The average wait time is too long because not enough people are registered as organ donors in BC.
Being on dialysis was challenging because her energy level was low. She was unable to do much of what she had been capable of when her kidney transplant was fully-functioning.
My New Role as Caregiver
Earlier in our marriage, Michelle did most of the cooking, cleaning and many other tasks.
As her caregiver, I had to take over the daily tasks that she was no longer able to manage. I also accompanied her to her dialysis sessions where I assisted Michelle as well as other patients and staff.
I did this while working to maintain Russ Harvey Consulting.
Caregivers Have an Important Role
Many families are suddenly forced 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.
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.
The organ was retrieved later that afternoon and around 9:00 p.m. we knew the kidney was viable.
The Surgery
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.
Recovery
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 or 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, then wait for the VGH lab on the ground floor to open to do 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 then the drain to her new kidney.
Later clinic 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.
On February 21st our friend, Lenna, brought her car over from Victoria and, after packing up our belongings, food and other items we'd acquired while in Vancouver, caught the 5:00 p.m. ferry home.
A few days later, Michelle and I had our Christmas celebration, opening presents that had been waiting under the tree prior to our rushed December 23rd trip to Vancouver.
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
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 all 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 were conducted by phone or virtual meeting connections.
While we both have to be careful, Michelle was even more vulnerable as a first-year post-transplant patient.
Our freedom continues to be much more restricted than for most people, even though mandates have ended and most people think that the pandemic is over.
