Diary of a “Dialysis Diva” – Part 2

Part 2 – 2022

In January 2022 I turned 72 and was ready physically, mentally and emotionally to face the challenges of Chronic Kidney Disease. I was nicknamed “Dialysis Diva” and I got purple highlights in my hair to prepare me for the future. 

My GFR was slowly declining and I knew it’s only a matter of time before I start dialysis.

I started speaking to some dialysis patients to get an understanding of what was in store. It was interesting to learn that everyone has a different experience.  I also read the brochures provided to me and while they were detailed, graphic and technical, there was really no explanation about unexpected complications. 

At the end of May, my Nephrologist said its time and I got my first appointment for hemodialysis on June 20 at the Reactivation Care Centre in Etobicoke. They have only 10 patients there at a time and its clean and comfortable. 

My dialysis days were Monday, Wednesday and Friday at 12 noon which worked really well for me. My husband took me the first day and came in with me – quite concerned at the all the machines. I could see he was already queasy so I told him to leave and come back to pick me up. The nurses were very friendly and proceeded to prep me. I was placed in a comfy chair which reclines and given a blanket. They told me that dialysis patients feel cold and its normal. 

When I saw the size of the needle they were going to use in my arm, I turned queasy as well. I’ve always had a phobia for needles and this was a big one. They explained every step in detail and said they will use the needle in my arm with the fistula. While my fistula was not fully developed i.e. my veins were still small (I’ve always had problem giving blood due to the tiny veins). The poke was very painful but I gritted my teeth and bore it. Less than an hour into dialysis I got very nauseous and started throwing up. The nurses were calm and said “sometimes people have a reaction”. They told me that some peoples bodies react to the procedure. So, they stopped the dialysis after one hour and I went home still feeling nauseous and quite disturbed at how badly this had gone. 

I knew I had to go back on Wednesday and the thought of the needle made me very anxious and nervous. I’m not an anxious person by nature but I headed for my second dialysis in a state of nervous tension which raised my blood pressure. The second day was no better – I was still nauseous and although I took ginger chews and gravol with me, I still threw up. Also, the arm where they had put the needle was beginning to get purple. But they poked me anyway reassuring me that it will easier with time. The vascular coordinator Rodolph came to see me and suggested I use an anesthetic cream on my arm before I came to numb the area. The Nephrologist also came and said it would help so he gave me a prescription for a cream. It’s not covered by OHIP and is expensive but I was ready to do anything to alleviate the pain of the needles. Now they were using two needles and I cringed every time they touched my arm. 

I saw that other patients had two tubes hanging from their chest and these were being used to attach the dialysis tubes. I asked why I could not get that system and was told that its not the preferred way as its external and can get infected. They preferred to keep trying the needles. 

Next time I used the cream (Emla). It helped a little but the vein problem was still there. They could not find a vein big enough to use so they poked me at different places and it was very painful. My nausea was also there so the first week they could only do two hours of dialysis.  By this time my arm was black, blue and purple all the way from my elbow to the top. It was sore and painful. The nurses suggested that maybe I did something at home for the bruise but it turns out the needle had hit something outside the vein which caused a hematoma. They were always very apologetic but had to do what they had to do – which is poke me! I was not happy. It’s hard to stay optimistic when you are in pain and know it’s going to happen again. 

The following week I was still nauseous so Rodolph suggested I be moved to the main Humber hospital where the machines are more advanced. Rodolph met me there and took me in. It’s a huge place with about 50 patients on each side. 

On Friday July 22 I came to the hospital. Hubby was still driving me and picking me up, very concerned about the pain. The bruises on my arm were getting worse but they tried to put the needles and each time it was a challenge. I was getting very concerned at the ongoing pain and bruised arm. 

On July 27 they sent me for another ultrasound on my arm to see the condition of the fistula. They showed me the results which of course made no sense to me with my lack of medical knowledge but they said the veins were narrow. I begged them to try and find another way.

On August 5, they called me into the hospital early in the morning and performed a minor procedure under local anesthetic to inset a catheter into the space between my right shoulder and breast. They call it a ‘tube’ – its essentially and exterior port with two tubes hanging from it. I was pleasantly surprised that the same afternoon they were able to use it for dialysis and for once I was able to get full dialysis which is four hours. 

I was so happy that I brought chocolates for the staff. I kept wondering why they hadn’t put in the tubes earlier but have never received a satisfactory reply. They transferred me back to the Kidney Clinic and I started coming in three days a week for four hours. The nurses welcomed me back with a smile and I felt at home. By now I was driving to and from the clinic on my own and my only challenge was how to spend the four hours. For an “A” type personality who thrives on being on the move, the four-hour stint took some getting used to. 

I decided to divide my time between reading, writing and dreaming. A visit to the library and I was all set. There is no Wi-Fi at the clinic but long chats on the phone are possible. I also chat with the nurses who come from various parts of the world and organize ‘sock’ contests. 

I devised little experiments to make things easier. The skin under the tubes was getting a rash due to the tubes pressing into the body. So, I brought gauze squares and will put a little Vaseline on it to ease the itch and adjust it under the tubes. The Vaseline makes it stick to the skin and eases the rash. 

I now look upon my dialysis as the ‘new normal’ and have adjusted it to fit my life. My only challenge now is to figure out how to travel and I’ve discovered that there are dialysis clinics all over the world. The Canadian government covers part of the cost for overseas dialysis and I’m planning my first trip at the end of October as an experiment. 

My son who owns a restaurant (East Side Mario’s) in Milton decided to sponsor a walk for kidney. It’s a great start to something I want to do every year and I proudly walked in the rain with friends and supporters. I’m now ready to be a friend to someone who is new on dialysis so they have a better understanding of life after CKD 😊