Diary of a “Dialysis Diva” – Part 1

Part 1 – 2021

In March 2021 I got COVID which was painful. More painful was the fact that at the same time, very suddenly I was diagnosed with failing kidneys. My family doctor got me an urgent appointment with a Nephrologist at the Kidney Clinic in Etobicoke and this was the start of my journey towards where I am now. 

When I asked the doctor how come this has happened so suddenly, he replied “we don’t know – it could be one of many causes”. Not a very satisfactory answer but there was nothing I could do. I’m not a person who ‘googles’ symptoms because of the information overload, so I decided to rely on the specialist. I’ve had diabetes for twenty years but it is under control and not everyone who has diabetes develops kidney failure. However according to the National Institute of Diabetes and Digestive and Kidney Diseases, 1 in 3 adults with diabetes has kidney disease.

My GFR at the time of my diagnosis was 17 – normal should be 60. A glomerular filtration rate (GFR) test measures how well your kidneys are carrying out their filtration function. Because early kidney disease often has no symptoms, a GFR test is a valuable tool for monitoring kidney function. Your creatinine level can provide information about your kidney function, but it isn‘t the same thing as your GFR. So, to find out your GFR, your creatinine test results are plugged into a math formula with other variables like your age and sex. The result is known as your estimated GFR, or eGFR.

According to my tests, my creatinine and potassium levels were very high. After the initial shock, I went through a stage of denial, where I decided this can’t be happening to me..maybe there is a mistake. I sent my medical results to a doctor friend in USA thinking that maybe they could diagnose something different and better. My friend told me that whatever is being done here is good and at this stage there is nothing new they could offer. However, he did recommend that I opt for hemodialysis at the clinic or hospital. 

I had come to terms with the diagnosis and decided that I’m not going to let this get me down. I will deal with it with my usual optimism and cheer. My cheerfulness had different effects on people around me. For my immediate family it was a boon because they had never seen me down or depressed. For extended family and friends, it meant “Raheel can overcome anything – she’s a warrior”. 

Okay I decided to take the challenge and run with it. Dialysis here I come!

I asked if there is any medication I can take and the answer was no. In that week a dietician and pharmacist spoke to me in detail and the dietician recommended I follow a special diet. I was given a list with foods that are high in potassium like potatoes, bananas and tomatoes which I eliminated from my diet. I was also provided with many brochures with graphics and details about kidney function and explaining what CKD (chronic kidney disease) is all about. 

Doctor also told me to monitor my blood pressure and sugar levels very strictly because both of them (if too high) impact the kidneys. 

Every month I had a blood test and saw the doctor. My GFR was slowly reducing and the doctor told me that my two options were: dialysis or a kidney transplant. Dialysis removes toxins from the blood when the kidneys cannot. 

My husband and sons immediately offered their kidneys but all three of them were not compatible. As my family and friends started hearing about my CKD, there were all sorts of suggestions. One of them was to go abroad and get a transplant (apparently for a large amount of money people get transplants easily in countries like Pakistan, China and Turkey). But my doctor clearly explained that the Canadian health care system will not take responsibility of a procedure done outside the country so follow-up would be complicated. I decided not to ‘buy’ a kidney – yet. 

By end of 2021 I was fully diagnosed with kidney failure and now it was a waiting game on when the dialysis would start. I am eternally grateful to the health care system where I got absolutely the best care and support. There is a Kidney Clinic in Etobicoke (close to my house) where there are doctors, nurses, social workers and support workers. The nurse showed me the dialysis center and explained the different kinds of dialysis available for CKD patients. 

Hemodialysis is ongoing dialysis (3 to 5 times a week) that cleans your blood. The hemodialysis access is in your arm. 

Peritoneal dialysis is daily dialysis that collects waste from the blood by washing the empty space in your abdomen (peritoneal cavity). The access is in the stomach and can be done at home. 

The staff at the Clinic were big on home dialysis and encouraged it a lot because according to them home dialysis can be done at night and is more flexible in terms of time. 

I was never in favor of home dialysis because I am very technically challenged and my hubby faints at the sight of blood so I could imagine two patients 😊 

I opted for hemodialysis at the clinic and preparations began. In November last year I had a minor surgical procedure done on my left arm called a ‘fistula’ …An AV fistula is a connection that’s made between an artery and a vein for dialysis access. The access point must be durable enough to withstand dialysis treatment several times a week without collapsing.

The fistula has to ‘mature’ so it takes months. Meanwhile I decided to use the time I had before dialysis to travel and I did. My symptoms were tiredness (I figured at age 73 tiredness might just be the age 😊 so I slowed down a bit but otherwise did things normally. 

I also partied like there is no tomorrow. For our 45th wedding anniversary we threw a huge party for all our friends and family. My guests were quite amazed to see me in full form – somehow, they expected me to be sickly. “You don’t look like anything’s wrong with you”, “how come you are so full of life and energy, yet you tell us you have CKD”. Well, its all in the mind my friends and my mind had decided not to let health issues get me down. After all, I told myself, it would be much worse.