I am a Canadian wobbler who was damaged Jan–Mar 1999. At this point I do not like to consider myself a victim but rather a survivor. When I think back to the day I was diagnosed with renal failure due to gentamicin it is like a bad nightmare. I had been receiving gentamicin since January 1999 due to a kidney infection; it was a time when cuts were made to beds in the hospital and I was there for my first two dosages and sent home the next day due to the lack of beds.
My family room became a hospital room, medication delivered and filling my fridge and home care nurses coming and going. This went on for weeks; once a week they would come and take my kidney function but other than that no other tests were done. Two weeks after being on gent I went to my family doctor and told her I did not feel quite right and as usual it was put down to stress.
The second month into receiving gent I still had the kidney infection. My arms were black and blue from IV sites giving out; I had gone through two PICC lines and finally a Hickman was inserted in my chest. Once that was done one of the homecare nurses told me that's good — now she can give me the gent even faster. What was to be infused over 1 hour was given in about 15 minutes. In the second month the doctor brought me into hospital for two days and added vancomycin and IV solution and I did tell him I did not feel as woozy with the added fluids so that was added to my family fridge. By the end of February I started to notice if I was watching TV I had to hold my head between my hands to concentrate and I told my husband I feel like death.
I will never forget the tail end of my gent and vancomycin cocktail days. I went to take a shower and when I went to rinse my hair I fell right out of the shower. That afternoon the homecare nurse came to give me my medication and it would not go through. I had to go to my local ER and have them check out my Hickman; however, I could not stand up and could not see straight, so when my spouse got home I asked him to watch the kids and I went to the hospital by cab.
They took some tests and in a very casual way told me that I would have to see someone because my kidneys were only half functioning. Feeling panic I asked why and the doctor said it could be my lupus. When I asked if I could stay in the hospital overnight till the urologist came the next morning they said "no dear because you did not come in complaining of kidney problems you came in because of your Hickman." When I asked why I was falling all over they told me probably an inner ear infection.
I took the cab home and the homecare nurse was there and I told them what they said about my kidneys and the nurse took the IV out and said that is it for now otherwise you will need dialysis. This was a Thursday evening and I left messages with the urologist for the morning saying it was urgent; however he never returned my call. I spent the day waiting for a return call from the urologist or my family doctor then I finally phoned my rheumatologist. I could not get an appointment with him until the following Monday as he was fully booked.
My rheumatologist says he will never forget the day I came in and 'bounced off his walls'. I plunked down hard into the chair and had no idea why I could not sit down gently anymore. He asked me what had been going on. After my tale he asked "Has anyone ever told you about this medication?" I told him the day it arrived the home care nurse took the sheet out of my hand and said you do not want to read this; it will scare you for no reason.
As he went on I felt like an idiot. He asked if anyone had been taking peak and trough testing and I said no, they were only doing kidney function which at the moment was a creatine of 163. He told me he felt these medications should never be administered outside of a hospital as they are toxic, can destroy the vestibular system and cause kidney failure. Then much to my surprise he arranged for a cab to take me to the ER and said he would meet me there after his appointments were done. I was expected at the ER, admitted immediately and given steroids and hydration. Three hours later I was told they had tried everything but I had gone into gent-induced renal failure and they would be moving me upstairs to be evaluated.
Years later my daughter would recall it was the only time in all my years of not being well that she had seen her father break down and cry because when she asked if I was going to be okay he could not give them an honest answer. That night the nephrologist came by and confirmed the renal failure and said if things did not turn around they would start dialysis the next day. The neurologist came by and examined me and I recall her saying "Good God, the only thing the drug did not do to you is make you deaf!"
That night I was in a state of shock. I was 41 with two young teenagers and lying in a hospital bed wondering why the cure for a kidney infection just about killed me. The next morning gave me better test results: as the gentamicin had been discontinued my creatine was going down a few notches. By the afternoon the levels were again better, but my kidneys had been damaged and I still had the infection with very low potassium levels. So for the moment I lay there taking a different medication for the kidney infection; the best news was there was no need for dialysis.
A few days later the doctor came by and told me that I would remain there for a while. When I said I lacked the ability to stand he told me the vestibular damage was permanent. When I asked about rehab he said there is nothing that can be done. Keep in mind this was early 1999; perhaps they did not have anything then. Then he told me what happened to me was nothing short of criminal and I think you know what needs to be done — i.e. sue.
I was in the hospital for over a month until my doctor had made arrangements for home care to come in my home and he insisted that I could not go unless I used a wheelchair. So home I went with a walker and was fitted for a wheelchair. This was my new life. The first week I was home I stepped out on my front steps and fell over and broke my ankle. If there had not been a man cleaning the carpets I think I would have sat out there on my walkway until the kids got home from school. Life as a new wobbler and at home was a learning curve. I could not drive anymore as the doctor had notified the government that I had a condition that made driving dangerous for me.
So I adjusted. I registered with the city transportation for disabled so I could at least get out. At home I was getting used to cooking with a walker and setting the table with a tray on the walker. Laundry was brought downstairs and I would do it slowly during the day. I fell over so many times in my bedroom in the middle of the night in the first year I lost count.
My husband found Lynn Brown for me and she was a Godsend. To know I was not the only person out there with this was music to my ears — of course back then there was not the online site. I phoned Lynn regularly but had started to proceed with my lawsuit. Dealing with lawyers for two years made me hate them almost as much as doctors. The lawyer told me if I lived in the US I would be so much better off but in Ontario the law was if you have loss of income you can sue but if you have monthly income you cannot. I had been receiving a pension since the age of 32 for my lupus. We decided not to go through with it. In truth I wish I had filed criminal charges; at least then I would have had the satisfaction of seeing their names in the paper.
I went into a downward spiral of depression. I joined the wobblers online in 2002 and it gave me an avenue to share thoughts and stories and ask even what seemed to be stupid questions which were greeted with an open attitude. In a year I would go on to help Lynn Brown welcome wobblers and share my story. I hung up my wobbling advice when I moved in 2005.
In 2008 I became a new wobbler all over again when I found out I had two nasty bugs sitting in my prosthetic knee. When they told me vancomycin was needed I did not like it but my doctor was right in saying as long as it is not mixed with gentamicin I will be fine — the latter I can never take again as it will put me into renal failure right away.
I am well now, and my husband and I travel with my walker. What was once a horrible time in our lives has faded. Life gives us the wisdom to know that it does get better over time and we are all survivors. I thank those that I met through wobblers who touched my life — Lynn, Gary and too many to name — and I hope I made a difference in theirs when they needed it the most.