My Journey into Chronic Kidney Disease aka ride of a lifetime.

Perfectionism Gone Wrong

Hi, my name is Loretta. I come from the Celts: I inherited the same stubbornness and never say die attitude. I am a strong, resilient woman, mother, wife, grandmother, sister, friend and have pride in my nursing skills and knowledge. I am a woman of faith. It is me that my friends, family and patients turn to for resources, for care, love, advice and comfort. My friends and family value my knowledge, experience and my humour. I keep things going and ease tensions. I am an initiator, collaborator, as well as a “take charge” kinda gal.

So, when I was diagnosed with CKD (chronic kidney disease) about 28 years ago, I saw this as a new challenge to control and perfect. After all, I was an RN and that is what we do!  I had also just had my first and only child whom I was still breast feeding when I got the word. I am not sure if it is because I was an RN that I received the diagnosis the way I did, but it was pretty blunt. I had been having “tingling” in my back when I went to my GP who promptly referred me to neurology which was sometime away. 

At the urging of my mom, I sought a second opinion from her GP. He was baffled at my symptoms and physical exam so he ordered a bunch of labs tests which included a simple urinalysis. Not long after, I received a phone call with the news that my protein in my urine was “off the scales”, I knew that was not good! but I still didn’t think of CKD.Well, the next thing I know I have an appointment with a nephrologist. I went to this appointment alone. There was no softening of the news, no delicacy: You have CKD and you will need dialysis or a transplant. What an intro into the world of CKD!!BAM! As an RN, this really didn’t shock me, as I knew from my studies that this was the course of action, no biggy I thought. In retrospect, I wonder how having a RN there to explain things in a more comprehensive or “caring” way would have done? A conversation that would give me some idea of what this new diagnosis was going to mean for my life.

Shortly after diagnosis I became very ilI and was admitted to hospital in Edmonton and then transferred to my home town of Ponoka. I was in hospital for 3 months. I was so ill that my RN friends thought I was going to die. I was so short of breath with the anasarca that I couldn’t finish a sentence. 

The most vivid thing for me was laying in the hospital bed at night and literally crying out to GOD. I was terrified that I was going to die! My body had betrayed me and was now so full of fluid that I couldn’t function, I couldn’t care for my 1 year old daughter, I had to stop breast feeding her which is something I never had to time to grieve. I had no shoes that would fit because my feet were so swollen and painful.I bargained with God, I told him that his plan sucked if I was dying. I guess my prayer was heard.

Still relying on my own strength, knowledge and perfectionism to manage my CKD. I watched my own numbers, measured, logged, and compartmentalized my life. 

A year later, I went to see my GP once again. I sat in his office and stated that I don’t understand why I feel the way I do? My “numbers” were all in range, so why do I feel so tired? I was frustrated. My GP leaned forward and locked his eyes with mine and in the most meaningful and caring tone he said, “Loretta, you have chronic kidney disease”. That was all l needed to make me breakdown emotionally. I cried and cried because I finally had someone recognize the impact of those words and that diagnosis and convey that!  He took the time to make me realize that the “numbers” don’t really add up to the whole. It was only then that I started to question why me??? I had always lived a healthy lifestyle, I did all the “right” things., but now realized the true impact of having a chronic disease that despite your best efforts will progress and end in dialysis or transplant or death. 

I did get to end stage renal disease and by the Grace of God, I got a pre-emptive transplant and continued to live life to its fullest. I got 20 years out of that transplant: much more than what I was told. When I got the “call” for the transplant I was shocked when I arrived to find the nephrologist tell me I’d be lucky if I got 5 years out of it and did I still want it? I thought to myself, “of course I want it!!!, what kind of a question and attitude is that? Do you realize I just dropped everything in my life to come here for this? I brought my young daughter out of her class, packed a few things and drove here on my own to receive this! 

20 years later, the graft was failing. By this time, I had a great relationship with my nephrologist and we could talk freely. She had come to know me well and she respected my knowledge both as a RN and as a patient who knows her own body. When I had questions or thoughts about what was going on physically or medically, she would listen and respond in a way that was a conversation. As my graft failed, we had more intense conversations about my medical management with the immune suppression and that of transitioning to dialysis. She allowed me time to wrap my brain around the whole transition and didn’t rush the decision to stop the immunosuppression for fear of rejection and yet another operation. 

That baby girl that I bargained for from GOD was now grown up and soon to be married! Such a joy and very emotional time in my life. My daughter’s father had died just the year before and now I was the only parent she had. I knew my kidney function was degrading and a I found myself  back at GOD’s bargaining table: God please let me make it to my daughter’s wedding and after that, I don’t care what happens to me. Graciously, this was granted. I was able to be a part of the wedding planning, and of course walking my daughter down the aisle. I dressed to the nines, I had a blast, I danced & danced, even when it was just me on the dancefloor. I was exhilarated! What a blessing that day was. 

Two weeks later, I was starting peritoneal dialysis. There was no more bargaining to be done. So, on July 3rdI started my first dialysis session with a wonderful RN who was respectful of my knowledge and comprehension as a fellow RN. I felt very grateful that my new partner in health was on my side and truly worked with me. She showed empathy and concern for the transition I was going through. 

Fortunately, I was familiar with “doing” PD as a RN, so I was able to go home and carry on with the treatments. My planned freedom on PD was soon not so free and I was advised that I needed to have the PD catheter removed, another put in & a central line for the healing time. I was so anxious and frightened to have a CVC and go on HD because after my transplant I had had to have plasmapheresis which did not pan out as planned. In addition, I was still working as a RN and was feeling so exhausted. 

My nephrology team was understanding. The healthcare team recognized my fears and anxiety with the placement of the CVC as my last experience was terrible and painful. I felt very cared for and felt that they had understood my feelings and needs. The next step was starting HD: my first time was filled with trepidation because of what I had experience with plasmapheresis. 

The machine revved up and away we went. To my great surprise and huge relief was that HD was going very well! 

However, on the third run, I had an emotional breakdown and just started to cry and cry as I sat trapped in the chair. It was the cumulation of all I had been dealing with, suppressing, perfecting, controlling. Low and behold there was a caring soul on duty, a HD RN that saw my distress and came and sat with me. She tried to reassure me, she was empathetic, she cared, and she was taking the time to just be with me as I continued to cry and was unable to articulate anything of sense. I felt defeated. I felt I had no control anymore.  That RN’s time, gestures, non-verbal’s, and the few empathetic words was a huge blessing to me that night. I don’t know how long I may have been in distress if she had not come along with her nursing art. What a long way I had come in my “journey” with this emotionally and physically exhausting disease. I will never forget how those few minutes spent with me when I was so “done” sharing in my weakness, my vulnerability, my exhaustion, and my loss & grief comforted me more than any other healthcare experience. You see it only takes a few minutes of your time, but it makes a HUGE impact on us, those that are in your hands when we are at our worst.

What I’d like you to take away from my experiences is that “healthcare” is at its pinnacle when the humanistic properties are crafted or intertwined into care in busy and demanding wards, ERs, specialized units, etc: those of stopping to empathize, SHOW caring by touch, non-verbal’s like engaging in meaningful eye contact. Meeting the patient exactly where they are at, putting yourself in that place, if only for the next 15-30mins, how would you want to be treated or valued?

Thank you.