Dear Papa Bear,
This particular issue has been on my mind for a long while, and today I can no longer bear the thought of this daily. I’m not too sure whether you’re the right person to talk to or whether there’s any way you can help, but I don’t really have anything to lose so I thought I might as well try. (You might want to grab a cup of coffee, as this will take a little while to explain. Also, it’s a bit heavy, just thought to warn you before you read further.)
I’m an 18 year old furry from the not-so-sunny land of Wales. I’m known by my friends and family for being a pessimist and sadly that couldn’t be more true. I have a medical condition which means I was born with only a single ear. Obviously, that means I cannot hear as well as other people, but also, I was bullied a lot while I was growing up. The option was presented to me to have a prosthesis attached to implants to make it look like I had two ears to help me “fit in”, and another implant that poked outside of my head to attach a hearing aid, so I could hear. For the most part, this worked as intended and was a great help, however this was not to last.
Back in October 2015, due to the growth spurt in my teenage years, a layer of skin had grown over all of my implants, and the hospital decided they were going to sort out the implants for my prosthesis first. They cut away at the skin around the area to uncover the implants again, then grafted a piece of skin from my thigh to replace it.
Soon after, a new model of hearing aid was introduced that involved a magnet under the skin. The doctors presented this to me as a solution to fix my hearing aid implant as it being covered by skin would be okay, and I wouldn’t have to worry about having it uncovered. After a bit of looking into things, they discovered that the hearing aid implant I currently use (installed in around 2008) was too old and therefore couldn’t have a magnet attached to it. So they said I’d need to have another implant a little further up. This would be an exact repeat of the surgery performed in ‘08, and they said as the procedure would only take around 30 minutes, I would most likely be discharged the same day I was admitted.
And here’s where we get to my problem.
After that surgery in 2015 to uncover my prosthesis implants, everything was fine, until about a week after.
Unbeknownst to me, a small section of graft was not bonding with the surrounding tissue, leaving a small pocket. At around 3am that night, it started to bleed heavily, and despite both me and both of my parents being medically trained, we could not stem the bleeding. The paramedics were called as I was going into shock and I was losing consciousness. Although it seems like half of the event was never recorded in my memory, my parents told me I was saying things like “I’m going” or “I can see my great grandparents”. I was rushed off to hospital and I remember my mother praying on a rosary, as the doctors took a sample of my blood and assessed what happened.
The thing is, they found nothing. Their response was “we can’t find a reason why this happened, but for some reason, it happened.”
After two days in hospital, I was discharged again, and after another bleeding episode a few days later that we managed to take care of ourselves, that was the end of it. I was told by my parents that three were told I was very lucky to be alive. The whole near-death experience was extremely traumatizing.
The scary thing is that no-one ever found out why. I have a few guesses, but that’s all they are—guesses.
I’m going in for this new operation in the autumn and all I can think about is the same thing happening again, and me not being so lucky this time around. I’ve been living this past year (since January) in a downward spiral, believing in my heart I only have a few months left to live. I’ve been assured by everyone around me (including my conscious self) that I’m going to live through it, but it’s just not getting through deep down. A voice inside of me just keeps saying “you’re going to die”. Depending on the grades I get at results day on August 16th, I could have finally realized my dream of studying engineering at university, but have it snatched away from me at the last second. That’s what I feel like will happen.
My impending death is all I can think about right now, and it’s just getting worse and worse with each passing day, so ... what do I do?
Glyn (age 18, Cardiff, Wales)
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That is quite a story, and I am sorry about all you have had to go through. It is quite amazing that medical science has progressed to the point where they can help you with your ear and hearing issues. Medicine, though, is also sometimes referred to as the "medical arts" for a reason. Medicine is not just about knowing anatomy, physiology, epidemiology, etc. Even now, doctors and researchers are still struggling to grasp that every individual is slightly different than everyone else in how their body reacts to medicines and medical procedures, as is apparently the case with you.
I'm sensing a reason you are frightened is that you might have a feeling of powerlessness. That can certainly happen when one has been faced with a life-threatening event such as the bleeding problems you have had. Being nervous about another procedure is perfectly understandable and normal. There are a couple things I would suggest: 1) ask to speak with your surgeon and talk to them about the procedure and ask them what they have learned from what happened the first time and if they are going to do anything differently with a second procedure (do not let up until ALL of your questions are answered), and 2) contact the hospital where the procedure was performed and ask to talk with a hospital counselor. Speak to them frankly about your worries and fears. I'm not sure about Wales, but in the USA this is called presurgical counseling.
It is very important, too, for you to realize that patients have rights and your decisions on how to handle your health are paramount. They are YOUR decisions, not the doctor's. Often, patients simply bow to whatever their doctors say without question. They fail to ask questions. They fail to tell doctors when they believe the doctor is not listening to their needs or if the doctor is dismissing their symptoms too readily.
You can ease your mind by realizing YOU are in control, not the doctor. The doctor works for you, not the other way around. One thing this means is you are in control of the schedule. If you are not comfortable with the surgery scheduled for this autumn, then tell the hospital you wish to cancel or postpone it. If I am reading your letter correctly, this is not a life-threatening need right now. That is, you will still be able to live and function without the surgery. Do you feel that you will be able to attend university? I am guessing you can, and if you have trouble hearing lectures, make sure you sit in a front-row seat (you can also record lectures and listen to them later with the volume turned up); if you need a hearing aid in the one ear, get one.
Only after all your questions have been answered about the surgery and you are mentally and emotionally prepared for it should you schedule a date. In other words, don't push yourself because pushing yourself about deadlines will only increase your anxiety levels.
You, Glyn, are ultimately in control of your own health and body. You have the right to be comfortable and well-informed about any medical treatments and surgical procedures involving your own body.
Hope that helps reassure you.
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