Mackenzie’s Story

My name is Mackenzie.  I am eighteen years old and I have recently been diagnosed with ANCA positive vasculitis and Wegener’s Granulomatosis.  I am currently being treated with cyclophosphamide chemo treatments and high doses of steroids.  As of now, my body is responding well to my treatments and I am hoping that it continues to respond. This has been a long journey since the start of my sickness in January, but I have stayed very positive through the journey thus far.  I am going to continue to stay positive and keep a good outlook on everything.

My family and myself, like mostly everyone out there, did not know anything about vasculitis and autoimmune diseases or how serious this sickness was until I was diagnosed with it. We have decided as a family that we want to help spread the awareness of vasculitis in anyway we can.  Also, I would like to share my story, what I have been through and what I am still going through everyday. I want to help in any way that is possible, not only to help me and my family be able to cope with everything that’s going on, but also to help others that are going through the same thing, and inform people what vasculitis is and how serious something like this is. I want to make a difference in anyway possible and get my story out there!

The first weekend in January is when my life began to change, and at a bad time as I was competing in one of the biggest beauty pageants of my life  – something I had worked for since I was a little girl. My mom got a phone call from the doctor saying I had pneumonia and a really bad sinus infection, but being the strong young lady that I am, I didn’t let that stop me from what I had worked for. I pushed myself to do what I wanted and I did very well for as sick as I was. I am very proud of myself even though I didn’t win. Competing in something that big while being that sick and doing as well as what I did shows a lot of strength. As days went by, I was getting sicker.  I wasn’t getting any better and the doctors just keep saying it was pneumonia and a sinus infection, but the medication wasn’t making me better at all.

I was a very active, bubbly, talkative, ambitious young lady – the captain of my cheerleading team and involved in student council. All that came to a halt on January 16th, 2013, when I was cheering at a boys high school basketball game and started getting some leg pain.  I didn’t think much of it – just thinking the joint/leg pain was coming from just activities or from where I had been sick – not thinking anything major of it at all. When I got home from the game, I sat down on the couch to watch a 30 minute TV program, “Pretty Little Liars.”  When the program was over, I went to get up off the couch to find that I couldn’t walk at all.  I could barely stand on my legs.  I was having such bad pains.  So my parents immediately decided to take me to the emergency room.  They ran many tests trying to figure out why I was having these pains and to figure out what was going on. The doctors said there was a blood clot in my left leg and that I still had pneumonia. They didn’t give me any more medication for the pneumonia, but gave me blood thinners and sent me home. No one still knew why an active 17 year old girl had a blood clot in her leg without any type of injury.  Like any worried parents, my parents took me straight to my pediatrician to see what was happening to me. By the time the doctor came into the room and my mom started telling him everything that had been going on, the doctor got a panicked look on his face and told us he was going to have to send us to Rudy Memorial Hospital because this was way beyond something he felt comfortable knowing how to treat.  I of course panicked and started crying – all of us being scared not knowing or having any idea what was going on or wrong with me.

In a few short hours we were in Rudy Memorial Hospital and seeing different teams of doctors, all of them running tests trying to find out what was going on. Lots of tears were being shed by my family and myself,  but after six long days in the hospital,they said my INR level had gone down enough that it was safe for me to no longer be in the hospital. They didn’t think my blood clot would move or anything. But I still couldn’t walk and was very sick with what they still thought was maybe some pneumonia. I was home for 18 days getting worse every single day. It was to the point that I was having to use a walker to get around my house and my mom was having to shower me. I couldn’t go to school, so what I used to think would be the greatest year of my life –  or one of the greatest years of my life – my senior year – I was missing out on because I was laying at home very sick, not being able to be out making lifelong memories with my friends.

But after awhile my body decided it couldn’t take it anymore. On the 18th day of being out of the hospital, I could no longer do it. I could not push myself anymore.  I was to the point that I was throwing up blood, and my tongue and throat felt like they were swelling shut. It was one of the scariest things  I have ever experienced.  I honestly thought I was going to die.  In a panic, my parents yet again rushed me to the hospital. I remember on the way there looking at my mom and telling her that I was going to die – that my body honestly felt like it was shutting down. I truly didn’t think I was going to make it. By the time we got to the hospital and they started running tests and doing all these different things to me that I don’t even really remember because I was so out of it, they figured out that my hemoglobin had dropped all the way down to a seven. This meant I was losing blood from somewhere, but they couldn’t figure out where. They decided I was going to have to have a blood transfusion because I did not have enough in my body. While the transfusion was taking place, the doctor came in and told my parents I had one of the worst cases on pneumonia they had ever seen and they wanted to send me back to Rudy Memorial Hospital, hoping they could figure out why I was still so sick and what was happening to me.

So yet again, to Rudy Memorial Hospital my family and I went, scared to death not knowing what was happening to me at all – just hoping the doctors could figure it out before it was too late. The doctors came in and told us that I was bleeding from my lungs and kidneys, that it was not pneumonia. It was really a bleed and I was going to need to be moved to ICU. Of course we all started panicking and were extremely scared, but we had to stay strong and stay positive. So we moved to the ICU floor and started meeting more and more teams of doctors that were going to work on trying to figure out what was wrong with me and why I had this bleeding. After a few procedures, the doctors then came back finally diagnosing me with ANCA positive vasculitis and Wegener’s Granulomatosis disease.  Listening to all the doctors talk about this sickness and all the treatment options was very overwhelming for all of us, but fighting back our tears and staying positive was what we had to do. The doctors could not believe how positive I was staying. They kept telling me they loved coming into my room and still seeing a smile on my face with everything I was going through. But even though at times I wanted to breakdown and cry, I knew the best thing to do was put a smile on my face and stay strong because I am a fighter.  I may have this autoimmune disease, but this autoimmune disease does not have me. Yes, I Mackenzie,  have an autoimmune disease and this disease has and will change my life, but I won’t let it ruin my life. This is just a bump along my journey that I am willing to face.  One of the hardest parts for me was when they said I was going to have to get chemo treatments.  I found it scary at first and I was worried I would lose all of my hair and become very sick, but I have had several treatments now and I am responding very well.  I have lost hair but its just thinning – I haven’t lost it all.

When talking to the doctors we learned all the sinus problems, joint pain, weight lose/gain, fatigue, headaches, night sweats and all the problems/symptoms that I had been having for the last two years were really more than likely the start of my sickness. It just took this long for it to actually attack my body.  It’s something that could have been stopped before I got so sick, but so many people don’t know about vasculitis  – it took me to get so sick to know that I even had such a serious sickness.

When I was able to come home from the hospital, I was still very sick and everything was very overwhelming –  not only because of everything that happened, but just being able to understand everything that was happening and how fast it all happened. It went from one day me just being my normal happy, bubbly self to almost losing my life – it’s just crazy. After my medication started working and my body started getting used to the chemo and the steroids, I started getting all these side effects from them, which were hard to deal with and are still a struggle for me to deal with today. I gained a lot of weight in swelling from the medication, got a moon face, fatigue, headaches, and a few other problems that I am still dealing with today. All I can do is keep a smile on my face and stay positive and keep being strong. Being my senior year and missing all this school is for sure not what I always dreamed that my senior year would be like.  I always thought it would be the time of my life, but I have spent most of my senior year in hospitals, doctor’s offices, and at home missing out on all the great lifelong memories that my classmates are off making.  Yet I am not giving up and letting this disease beat me. There is more out there than just high school and I am sure that I am destined for greatest. Going to my senior prom with a moon face from my medicine wasn’t how I dreamed it as a little girl, but I still went and had a great time. Like I said, this disease will not beat me.

Now, in a few weeks, I will be graduating from high school and I have realized my senior year is not as important as my health, and that everything happens for a reason. For some reason, I am supposed to fight this sickness and there may not be a cure.  I am going to stay positive about my disease because I am not going to let vasculitis have me. I am going to have vasculitis. Vasculitis will not beat me and I will stay strong.  I would like to thank my family, because if it was not for them, I would for sure not be as strong as I am today.  I know that I am not fighting this disease alone because I know they are right here with me everyday, every step of the way fighting it along with me. I hope to make a difference one day with my story or by being able to help others out there who are fighting vasculitis. I, Mackenzie, want to raise awareness for vasculitis, because people need to know “its more common than you think, more serious than you know.”

Published: May 2013

To read more stories, please visit the Vasculitis Stories landing page.