Personal Accounts
The personal stories included here follow the example of Lynn Brown who led the way in raising the awareness of the dangers of Gentamicin.
Click on a name to read their story.
Our Stories
LAURA - TORONTO: 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 pic 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 soloution 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 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 could be your 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 dyalisis. 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 hosptial 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.
When my husband phoned me that day he was telling me that I needed to take care of something with my son at school and I told him that I cannot handle it right now as I had just found out that I would not be able to walk without falling over for quite a while.
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 damn 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. I had to ask my husband to pick up anything I needed and I hated that, I hated the loss of independence.
So I adjusted. I registered with the city transportation for disabled so I could at least get out. It made me feel human to go out and just wheel slowly through the mall. 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 I had started to proceed with my lawsuit. Dealing with lawyers for two years made me hate them almost as much as doctors. $10,000.00 later and only two weeks until my deadline for filing was up 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. He told me he could try and get me twenty five thousand for pain and suffering but I would have to repay all of his costs. And of course the lawyers for the doctors and the hospital would say it was lupus that caused my kidney failure and not standard of care. Did I want to be stressed out even more no was it worth it probably just so it would not happen to anyone else? We decided not to go through with it. In truth I wish I had filed criminal charges; at least then I would of had the satisfaction of seeing their names in the paper.
I went into a downward spiral of depression. I don't drink but I had lots of pills for my lupus and I got through the day on Tylenol 3 and Ativan. Irony is surviving death only to turn around and try and take your life - which I tried shortly after. Of course it did not work and despite the insistence that I was not an addict I needed to clean up my act and learn to cope without medication. I often wonder if wobblers had been around then would I have been feeling so alone, so desperate? I often described it as my family kept telling me to get over it but I felt like I was stuck in that place of anger, frustration, and feeling useless.
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 and I never shied away from telling about my feeble attempt at suicide or my lame drug use because I am not the first nor will I be the last to have the same thoughts or actions. 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 it will put me into renal failure right away.
When they told me they were going to remove the knee and put a spacer and I could not walk on my leg I looked at the surgeon and said that will not be possible. When he asked why I told him I have no balance I had trained myself to walk again and only a professional eye will you see the gait.
I had septic arthritis and I had no choice; he had to do the operation and a week later said let's see if you can hop. I wondered if he was the one on pain medication. One hop and I fell over and he said that won't do; you will have to spend the time here and in the rehabilitation hospital until those infections are gone. For 7 months I sat in hospital beds and tried hopping until I tore the meniscus in my other leg. I rejoined wobblers again and did not feel so lonely. I became a study for every graduating med student that year. One day a med student came in and I told him my story. Thinking good, he will learn something, the next day I was taken aside by the head of the rehabilitation hospital and told that if I feel desperate I should seek his help and then it dawned on me the only words the med student heard were the ones where I said I tried to take my life. I looked at the doctor and told him not to fear; I was not going to hang myself with his ratty curtains.
I spoke with a social worker and for the first time in all the years since I was damaged my anger was validated. Sometimes that is all you need someone to listen and really care and understand what it is like to walk in our wobbly shoes. I am well, my husband and I travel with my walker and 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 and 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.
