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Our Story About Kidney Disease

Life experience with dialysis and transplantation

We're Transplant Patients | Russ's Story | Michelle's Story
Register Your Wishes | COVID Restrictions | Site Policies

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COVID Restrictions Continue for Us

Many folks have been able to return to near-normal conditions even though COVID remains. This is not true for those that take immunosuppressant medications. We continue to have significant restrictions on our daily activities.

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We're Transplant Patients

Both of us are renal transplant patients. On this page we tell our experiennce with dialysis and renal transplant covering more than 40 years. You can jump to Russ's story or Michelle's story.

Medications Require Special Care

Because we're on immunosuppressants (anti-rejection medications) we have to be more careful than most people.

This is an issue we take seriously and has meant significant and continuing restrictions in our activities.

Restrictions became stricter with COVID-19 and we continue to remain mostly isolated at home with less freedom to socialize with visitors or attend public events.

Russ's Story

I spent almost a year on a pre-dialysis diet then began more than two years on 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 spending nearly 2½ years on dialysis, I received a kidney transplant on April 17th, 1996 when my brother, Todd, donated one of his kidneys. This was literally the gift of life!

I no longer needed to schedule my activities around four daily sessions of peritoneal dialysis and my diet restrictions were greatly reduced.

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 unlikely that either of us would be alive today.

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Michelle's Story

Michelle's first kidney transplant was on December 4, 1979. It remained stable for almost 40 years.

Her First Transplant Fails

Michelle was told that her transplant's health was declining in 2016.

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

For over two years 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 when her transplant was stable, 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 and serving as my mother's caregiver until her passing.

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 adds 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 (VGH) via BC Ferries as soon as possible for a kidney transplant.

Checking in at VGH T4D

Upon arrival at Vancouver General Hospital, 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 have to return to Victoria where Michelle would resume dialysis until another suitable match was found.

The organ was retrieved later that afternoon but it was around 9:00 p.m. before 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. Besides the normal recovery from surgery, the kidney she'd received was badly bruised and would take additional time to heal.

Discharged on New Year's Eve

Michelle was discharged from VGH 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, directly across from VGH Emergency. Alfred and his grandson, Clint, both made our stay much easier.

Vancouver Transplant Clinic

In the following two months, Michelle (using a walker) 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.

Once blood work was completed, we'd 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 6:30–11:30 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.

Our friend, Lenna, brought her car over from Victorian on February 21st and, after packing up our belongings, food and other items we'd acquired while in Vancouver, wecaught 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 the second week of March. Michelle's March 10th clinic was the last one to be held in person. Clinics were henceforth conducted by phone or via virtual meeting until my first return to an in-person clinic on December 12, 2022.

While we both have to be more careful than most people, Michelle was even more vulnerable as relatively recent post-transplant patient.

Today, 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 (it's not).

About Kidney Disease

We hope that our story has helped you to understand some of the challenges of living with kidney disease.

We encourage you to take a look at the information on this site about kidney disease and the BC Organ Donor Registry.

You can do a lot to ease the wait times for transplants, starting with registering as an organ donor.

Register Your Wishes

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.

A kidney transplant is the best form of treatment but it can be a very long wait for a suitable organ — if you are eligible.

Register You Wishes

Please fill out the organ donor registration (you can do it online in just a few minutes).

I can't emphasize enough the difference it can make in people's lives and to their families.

Live life. Pass it on.

One organ donor can benefit over 75 people and save up to 8 lives. That's 8 lives that are greatly improved when one person chooses to be a donor.

• It is far more likely that you'll require a transplant than become a donor — even if you're registered.
• Transplantation is supported by all major religions and the process is respectful of the donor body.

Verify Online

Not sure if you're registered? Verify online with your Personal Health Number.

Other Provinces

Not a resident of British Columbia? Links to other provinces are on the Health Canada Organ and tissue donation page.

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COVID Restrictions Remain for Us

Visitor Restrictions | Business Protocols | Masks Required | Why We're More Vulnerable

Many folks have been able to return to near-normal conditions. This is not true for transplant patients like Michelle and I because we're more vulnerable due to immunosuppression.

We MUST continue to restrict our activities in order to avoid being infected with COVID-19. We mostly remain at home, except for medical appointments and blood work. Other outside social and group activities are severely restricted.

Changes to Business & Visitor Protocols

The advice from the Victoria Regional Transplant Clinic is to restrict the visitors permitted inside our home, including clients.

We are permitted approved social visitors that understand our risks and are willing to follow our safety protocols.

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

Because masks are more effective when worn by everyone, we require visitors and clients a suitable mask while inside or in close proximity. More about mask suitability….

 

Changes to My Business Protocols

I've made significant changes to my business protocols because prolonged close contact is unsafe for me.

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. I require both of us to wear suitable masks when performing on-site or in-person services. Thank you for understanding.

Clients can arrange to drop off computers for servicing or get support via email, phone or virtual meeting software.

Please call or email to make arrangements.

Suitable Masks Required

Covid spreads in the air like smoke. At least half of Covid transmission happens before people develop symptoms — or even if they never develop symptoms — so people frequently spread the virus without knowing it. That's why layered protection — the combination of masks, tests and ventilation — is so important.
— Theodore Pak, Lara Jirmanus and Andrew Wang

Our transplant clinic team mandates that we only meet with people that are wearing a suitable mask when indoors and to maintain social distancing when outside.

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

There is more information about choosing a suitable mask on my COVID-19 resource.

Why We're More Vulnerable

Transplant patients are more vulnerable to infections than most, requiring us to restrict activities.

[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

Our anti-rejection medications are immunosuppressants — they suppress our immune system so that our transplanted organs aren't rejected. Twice-daily doses also reduce our ability to fight infections and diseases such as COVID-19:

Immunosuppressants are drugs that prevent your immune system from attacking healthy cells and tissues by mistake. Healthcare providers prescribe immunosuppressants to treat certain autoimmune diseases and prevent organ or stem cell transplant rejection.

 

These medications also increase your risk of infection because your immune system isn't working as it should.

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 Can Be Severe

The consequences of being infected with even the “mild” variants of COVID-19 can be severe.

When pre-existing conditions are mentioned regarding COVID-19 precautions, 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 read reports from clinics early in the pandemic stating that one-in-five transplant patients infected with COVID-19 have died. Thankfully that ratio has decreased and newer treatment options are available to us, but the risks are still significant.

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