Robert

I was diagnosed with Relapsing Polychondritis in August of 2002 after inflammation episodes of the outer and inner ear, nose and trachea. Looking back there were mild symptoms for about two years prior to diagnosis, however it was about two months before that things became obviously serious. Many long evenings were spent at after hours clinics and the emergency room. Each time I would be told I had allergies, bronchitis, infection, post nasal drip, and on and on. It was a very long and drawn out period of my life that I know most of those with RP can fully relate to. My problems first started with sore ears, and eventually the outer cartilage became extremely inflamed and painful. Then I developed a constant sore throat, and a barking cough. Soon I began have extreme night sweats, and would wake up in the morning in crippling pain from my chest to my ankles making it difficult to even roll over.

I was eventually referred to a Neumologist thinking that I had a lung related problem. It was a little out of his realm, but he happened to recognize the symptoms of Relapsing Polychondritis and through him I was referred to a Rheumatologist and ENT specialist who are both familiar with the disease. I was admitted to the hospital that day and diagnosed with a tracheal stenosis, immediately beginning treatment with prednisone as well as Imuran. Shortly after beginning medications the pain and fever went away and my ears returned to a normal state. However, the prolonged inflammation of my trachea had left me with a subglottic tracheal stenosis and narrowing of my left bronchi.

Due to the complexity of the stenosis I have had to travel to consult with doctors and surgeons hoping to find a way to better my tracheal situation. In December of 2002, I traveled to Laval University Hospital in Quebec, Canada to look into the possibility of a tracheal resection…which I know now should never be considered on a RP patient. I was admitted to the hospital and had a battery of tests performed. However, due to complexity of the blockage and the underlying desease, it was decided to be inoperable. At this point it was explained that eventually the dreaded tracheotomy would most likely be required.

For the next year and a half my case was passed around from doctor to doctor across the country. Finally in May of 2004 I traveled to Toronto General Hospital in Ontario Canada, to have a consultation with a thoracic Surgeon. It was decided that a dilatation procedure would be the first step. I then returned to Toronto in September of 2004 to have this procedure performed. The procedure went well initially, however, afterwards in recovery my trachea began to swell closed, forcing the surgeons to perform an emergency tracheotomy.

Finally in March of 2005 I was sent back to Toronto after agreeing to have a longer t-tube inserted. This new stent passes partially through my vocal cords so that the entire upper portion of my trachea is stented. I now have the t-tube capped 24 hours a day allowing me to breathe through my mouth and nose again, which provides much better humidity. The draw back to this stent is that while it is in I can only speak in a breathy/whisper, but it is the long term picture that I need to focus on. It has only been a short time since this last procedure, but my life has already greatly improved and I have gained back so much freedom and independence. I have to return to Toronto later this summer to be assessed and decide from there what the next course of action should be. This has been a long hard road for about six months, but I finally feel like we have taken a step in the right direction.

Growing up I was always very physically active and very much an outdoors person. I think I miss this the most. However I am trying to get back to it little by little, spending more time walking and just being outside. After developing tracheal problems I was unable to do many of the activities that I used to do. I was an avid mountain biker for years, and dream of one day pulling that bike off the garage wall and hitting the trails again. For the first two and a half years that I had RP, I lived a normal life with a few restrictions due to my breathing problems. I was able to hold down a full time job, which was exhausting at times but a great focus. Most people either didn’t know that I was sick or knew but didn’t realize how serious it actually was because I appeared so well most of the time, sometimes I might be asked if I had a cold or asthma when I coughed or was short of breath, but I flew under the radar other than this.

I think the biggest lesson that I have learned through all of this is how strong we really are. It amazes me the changes and challenges that we can handle when we have no other choice. For example, my biggest fear when I found out about my TS was a trach. Having to have a trach is something I don’t think I ever would have agreed to on my own, so in a way I am grateful that things happened the way that they did. The choice was taken out of my hands in order to save my life. It was a huge shock to wake up too, but I amazed myself at how well I actually accepted it and moved on. I now know that it is not such a horrible thing, mind you I would rather not have any type of prostheses in my neck. However if I were given a choice as to loose my site, hearing, be in a wheel chair or have a trach…I would choose the trach without a second thought.

I returned to Toronto in early December to have the trach removed and to have a Montgomery T-Tube stent inserted. This is basically is a trach/stent, made of a soft flexible silicone. It not only allows a safe passage for air but also stents the airway open in hopes that new tissue will form creating a wider more solid airway. However I soon developed edema above the t-tube at the very top of my trachea preventing me from capping the t-tube and making it difficult to speak. I was put on a high dose of steroids to try to control the inflammation but they only helped to a point.