On Thursday, July 4, William had an anxiously anticipated appointment with the transplant clinic. I went along, and we were both hopeful, perhaps even certain, that the news would be positive. The doctor was running late. We waited an hour. And when she eventually entered the examination room, our hopes were crushed. 

The transplant team determined that William's health was too high-risk for a kidney transplant.

The reason provided is the same impetus his kidneys dramatically failed more than a year ago --antiphospholipid (AN-te-fos-fo-LIP-id) syndrome. Antiphospholipid syndrome is when the immune system mistakenly attacks its own cells. This can cause blood clots to form continually. This syndrome is significant to nephrologists because it can cause various kidney problems, including blood clots in the main kidney vessels and the narrowing of the kidney arteries. 

This means William's immune system will attack a new kidney as well. There is no long-term research on drugs to treat this issue following a kidney transplant. As a result, the transplant centre determined that William was an extremely high-risk patient. What does this mean moving forward? He continues with dialysis indefinitely. Dialysis is what keeps him alive. 

William anticipated that a kidney transplant could return his life to normal. Dialysis has been challenging physically, emotionally, and psychologically. A kidney transplant meant freedom.  The vision of it has shattered. What worries me moving forward is William's hopelessness as he mourns the loss of a healthy body and a life where he may eat and drink without care. He's stated that he feels he's being punished for being a "bad person".

What I've learned from my own life and walking alongside William in our days together is that we cannot always control our lives, whether due to circumstances or our own choices.​

Did you know that peritoneal dialysis patients have a high risk of inguinal hernias?

Abdominal wall hernias are a common concern for people on peritoneal dialysis (PD), affecting 12% to 37% of patients. These hernias not only cause pain and alter the appearance of the body, but they can also trap dialysis fluid, reducing the effectiveness of the treatment. Low body weight with muscle loss, as well as kidney stones, have been linked to an increased chance of developing a hernia. Although high pressure inside the abdomen isn't always associated with hernias, it can exacerbate them over time and increase the likelihood of their recurrence following surgery. That is why hernias should be surgically repaired as soon as possible.

William will have hernia surgery on April 16, his birthday. This has to be done. Fortunately, hernia surgery is now only a day surgery. He has to be at the hospital by 6:00 AM. 

For the first four to six weeks after surgery, William needs to avoid strenuous activity, exercise, and heavy lifting. 
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Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. ​

A year ago today, William was in the Cardiac ICU. He was tethered up to tubes, wearing an oxygen mask, and looked fragile. He lost so much weight that a year later, he still hasn't gained it all back. He was dealing with blood thinners, a blood transfusion, ultrafiltration dialysis, severe edema on his feet, fluid in his lungs and a mitral valve clip procedure for his heart. Physicians were trying diligently to save his renal function, as his heart and lungs were severely compromised. William was also on leave from his job, understandably. 

It's difficult to imagine that a year has passed since our kidney failure journey began. While the damaged kidneys remain in William's body, they’ve impacted the entire family. When we schedule family events, William's dialysis management and fatigue must come first. He is still physically weak and finds it difficult to exercise, but he perseveres. He’s returned to work on a part-time basis. 

During his hospital stay, we were grateful for the kindness and encouragement of everyone around us. It was amazing!

We’re still waiting to hear from the transplant clinic, and we keep chugging along.
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Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. ​

A bad day is like swimming through jello; you can't move or focus because of the intense exhaustion and brain fog. William will spend the day sleeping. When he eventually wakes up, I can see how challenging it is for him to summon the mental and emotional energy needed to engage with the world around him. "Kidney brain" is a real side effect for dialysis patients. 

He also has nausea and appetite loss during these days. His lack of appetite is concerning because, since being ill, he has lost a significant amount of weight.

This is the truth of dialysis: there are many bad days. 

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Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. ​

​A month into the new year, William is cleared to proceed with his kidney transplant after undergoing all required tests. That is terrific news for the beginning of 2024!

He has gone back to working part-time from home to enable him to accommodate his dialysis schedule; he is still having good days and bad days, but his kidneys are holding on. As of right now, we are waiting on word from the transplant clinic. We have adapted to a new normal in which his dialysis regimen and the erratic nature of his exhaustion dominate our lives. We make every effort to keep our spirits up in the face of this. William benefits from going back to work part-time in this way.
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Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. 

This past week there has been some progression in the transplant process. We've had two meetings with the transplant clinic. Here's a summary:

Step One
Registration and testing: William has been registered and has a couple more consultation tests to complete. A living donor transplant is the gold standard for treating renal failure, and the surgery department provides a dedicated area for living donors and recipients.  

New followers to this website who could be interested in volunteering and giving selflessly can speak to former donors from the Centre for Living Organ Donation. Former donors will share their personal stories and answer questions. 

Once William is on the transplant list, a letter is sent to him. If a person chooses to donate anonymously, their name is not disclosed. A receiver gets moved to the top of the list.

There are three different types of deceased kidney donors. 

1. Young (wait time is 6-7 years). These are people who died before the age of 50, and whose kidneys are in high demand.
   
   
2. Mature (wait time is 4-5 years). The donor age is over 60, or over 50 with the following risk factors:
   a. Donor history of hypertension
   b. Stroke as the cause of death 
   c. Serum creatinine level greater than 1.5 mg/dL before kidney removal (indicating the extent of renal damage) 
   
   These kidneys don't have the same longevity as the standard criteria for young deceased kidneys. When weighed against the risk of continuing on dialysis, some patients will benefit from this type of kidney transplant.
   
   
3. Risky (wait time is 4-5 years). It isn't about the quality of the kidney, but about the donor's medical or social history. Is there a past history of low-risk cancer in the deceased's medical history? Did the deceased test positive for a treatable illness? This may expose the recipient to a very low (less than 0.5%) chance of contracting hepatitis B or hepatitis C infection. There may be no one who can provide information about the donor's background, previous blood transfusions, or recent surgery.
   
   However, the kidney is in good enough condition to be considered for transplant. The transplant team won't provide a kidney that does not function properly.

Step Two
As a result of the anesthesia and other medicines, the recipient meets with the transplant surgeon and a cardiologist to ensure that the patient's body will endure the operation.

For the recipient, the surgical procedure will last 3 to 4 hours. A patient is admitted to the hospital for at least five days, during which time they attend a medication workshop. Staples at the incision site stay for two weeks after surgery. Recovery will take at least two months, with follow-up appointments scheduled 2-3 times per week. There will be fewer follow-up appointments as the new kidney settles in the body.

Furthermore, because the recipient cannot drive while recovering, someone must drive them to their appointments. The medication required in years to come will be more costly, necessitating the need for private coverage. Outside-of-country travel must be postponed for a year.

While a living donor transplant is the gold standard for treating kidney failure, recipients must take anti-rejection pills for the rest of their lives. Missing even one dosage is fatal since it starts the renal rejection process. Side effects include an increased risk of certain illnesses due to a weakened immune system, an increased risk of infections, diabetes, cancer, and bone weakening.

In the end, the best option is a living kidney donor. Any volunteers who have already filled out the donation form will be contacted soon. If several donors come forward at the same time, the donor who is most likely to be the recipient's match will be tested first. If this donor is deemed unsuitable by the living donor team, then another donor will be tested. The most common causes for declining possible living kidney donors are:

• the existence of medical issues and,
• donor withdrawal. After completing their work-up, these potential donors withdrew their consent, resulting in a major waste of resources.

For these reasons, having multiple volunteers is key to finding a donor. 


Because of his comorbidities, William is at a higher-than-average risk of transplant complications; yet, a transplant offers his greatest chance of living a longer life. 

More volunteers are needed now more than ever to fill out the donation form. From the short video I made, I've been trying to get as many people as possible to understand that having numerous volunteers is vital for finding a donor. I would appreciate it if you could share this website with individuals in your social networks (again).​

Being a living organ donor is an incredible act of generosity and selflessness.

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Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. ​

This post is about a change in dialysis methods for William. There are two types of home peritoneal dialysis: automated and manual. When William began his dialysis journey, he was on the automated kind.
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​The previous method used a machine called a "cycler" that filled and emptied dialysis solution into and out of William's body automatically while he slept. William can sleep through the fluid exchanges, but he was tethered for 8 to 10 hours. The dialysis solution collects waste products from blood vessels in the peritoneum, the lining of the abdomen. The fluid resides within the stomach and absorbs waste and excess fluid from the body. The solution and waste are then emptied from the belly into the empty red gas container. In the morning, the used solution is disposed of in a toilet or tub. The container is then cleaned with bleach and prepared for use in the evening.
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This YouTube video illustrates his previous nightly and morning routine: https://youtu.be/mYC5pnxOHiU
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Unfortunately for William, the automated machine method was unsuccessful. Despite following all of the manufacturer's and the renal clinic's instructions, the machine would beep multiple times during the night, waking both of us up. It was challenging to get a good night's sleep. Because getting a good night's sleep is important for one's quality of life, the renal clinic switched his dialysis method from automatic to manual. This means that instead of a machine exchanging fluid once a day, manual peritoneal dialysis employs gravity to deliver and drain fluid. In a 24-hour period, William's prescription requires him to perform three exchanges: morning, afternoon, and before bedtime.

An exchange has three steps using an IV pole:
STEP 1: Drain
The catheter is used to drain the saturated solution from the abdomen. This solution contains waste and excess fluid.

STEP 2: Fill
After the old solution is drained from the abdomen, the peritoneal cavity gets refilled with a new dialysis solution via the same catheter in the belly.

STEP 3: Dwell
Once the new solution has been emptied into your abdomen, William can go about his daily activities. During this time, the dialysis fluid remains in the peritoneal cavity. This is when and where dialysis takes place. The waste and extra fluid from his body via osmosis are collected by the clean dialysis solution.

The cycler machine was replaced with a Solution Warmer device, shaped like a small suitcase. This is intended to provide patients with a simple and efficient warming method for their dialysis solution before it gets delivered into their bodies. Because it's lightweight and portable, it's much easier to travel with than a cycler.

William needs to plan his days around this schedule.

​One year ago...

Our 21st wedding anniversary was on October 5, 2022. By this point, William was already dealing with health issues and the adverse effects of an assortment of prescription drugs. His mother's already precarious health deteriorated further, and she was brought to the hospital. In November, while coping with his own health and being an only child with no extended relatives on his mother's side, William managed her medical needs. Sadly, she died on November 25th. Finding the stamina, William organized a small burial and gathering to honour his mother's life. He was also having difficulty teaching on a reduced course load before William went on medical leave.

Today is our 22nd wedding anniversary. Six months from when he began dialysis. How our lives have changed! We could never have predicted this year twenty-two years ago. Despite all of our challenges, we have remained constant. 

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Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. ​

Autumn has arrived. My fave time of year: sweaters, fuzzy socks, and warm tones like vermillion, mahogany, rust and amber, ochre, and copper, wonderfully cooler temperatures for wearing gabardine coats. While I revel in this season, William begins to prepare for the agony of attempting to remain warm with his cold sensitivity. When the temperature falls below 0 degrees Celsius, his body shivers and his hands quiver uncontrollably.

Currently, he's wearing a light weight winter coat and sitting under an electric blanket set to the highest heat level indoors. He gets cold like this. He's currently doing this as a preventative precaution, and it's not even winter yet.

William wasn't always like this. 

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Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. ​

Many of the side effects of the medications William was prescribed in October 2022 caused him to lose his appetite. His month-long hospitalization in March exacerbated his weight loss. To stay healthy and strong enough to qualify for a kidney transplant (should he find a donor match), he must gain weight. However, having a desire to eat is proving difficult.

His renal dietician advised him to consume higher fat foods, such as 3% milk. So whenever I cook for him, I use more butter or encourage him to add high-fat, high-calorie foods like sour cream. His body's ability to gain weight has been a slow process. 

​If William meets the criteria for a kidney transplant and finds a suitable donor match, the only pills he'll need in the future will be anti-rejection medication. However, those pills aren't without drawbacks.

​From a previous post, I mentioned that William needs to limit his fluid intake. Fluid restriction aids the patient's health. Dialysis patients can either urinate infrequently or not at all. Dialysis must remove any extra fluid, and drinking too much fluid may cause buildup between dialysis sessions, resulting in the following:

• Headaches and fatigue
• Facial, hand, and foot swelling (edema)
• Breathing difficulties caused by fluid in your lungs
• Heart damage caused by excessive fluid stretching
• High blood pressure, which can result in a stroke

William recently bought a drinking cup with measurements painted on it. This greatly aids him in keeping track of the 1.5L (6.34 cup) of fluid per day that he is permitted to consume. 

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Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. ​