At the beginning of the road

Hi everyone…..my name is LeighAnne and I have Wegener's Granulomatosis. There, it’s out. Even though I don’t even know how to spell it yet, I’ve decided to start a blog and maybe everything I am going through will help someone else in the future. I’m not really sure where this disease is going to lead me yet, but, I have hope, love, support and wonderful doctors and treatments.

Let’s start at the beginning……..

For quite a long time (maybe 5 years) it seemed like I was ALWAYS sick. If it wasn’t a chest cold, it was a sinus infection or headache. So, what did I do? I took advils and antibiotics and made many trips to my doctor and many calls to work and school saying that I was sick. By the end of it all, I’m sure at least ¾ of everyone I spoke to thought I was a hypochondriac (you know, someone who thinks they have ailments when it’s all in their head). Well, at least I’m not a hypochondriac, though; I wish that was the case and not this stupid, stupid disease.

Anyways, in 2004/2005 I started going through a very stressful period in my life. I was sick all the time and trying to attend school. I was doing a very demanding program in College and couldn’t focus on it. Though I DID graduate, I’m certain I could have done much better. I’ve always been an ‘A’ student, but, unfortunately couldn’t pull it off in College. Anyways, the year before I graduated I went through a situation which wasn’t so nice. No matter who was to blame, it was quite stressful on all involved. This situation caused me to move out of my apartment. Now, why am I telling you this? Well, because that’s when the most noticeable symptoms started.

The “Traveling Pain”

My joint pain, which a friend of mine and I later dubbed “traveling pain” started in the summer of 2005. I was sitting at the beach with my two nieces when I started to feel excruciating pain in my ankle. It was almost as if I had fallen down and sprained or broken it (Yes, it was THAT bad). I couldn’t even get up from the spot I was sitting. So, I rubbed and rubbed and rubbed it and finally hobbled over to the car to drive home….luckily it wasn’t my “driving foot”. Anyways, the pain persisted throughout the night and I even started to get a fever. I didn’t think anything of it, but, figured if it still felt like that the next day I’d go to the doctor. Well, I woke up the next morning and the mystery pain was gone. Wonderful! Weird, but, I was glad. Until a couple of days when the same sort of pain returned, however, this time it was in my wrist. The pain was so weird and intense that it was like someone had snapped all the tendons off in my wrist and I couldn’t even move my fingers. This time I did go to the doctor, he told me I had a tendonitis. But, like the ankle, the pain went away in a day or so. I was cured once more. That’s when it started to get really odd. The traveling pain seemed to travel more frequently and to more parts of my body, almost always affecting my joints. I can remember sitting at my fiancé’s (B) cousin’s wedding and wanting to get up to dance but, my knees and ankles were in so much pain I couldn’t move. I would just grin and bear it. I had bought a pair of really pretty shoes and a really pretty skirt to wear, but, I remember going to B’s Mom’s house to change in to something longer and more comfortable because my ankles and knees had swollen in to large melons. That was when I said enough is enough.

I went back to the doctor and he did a bunch of tests. He thought I had rheumatoid arthritis, but, I didn’t have the RF factor in my blood at the time, so, he kind of ruled that out. He sent me to an internal medicine specialist, but, by the time I got my appointment (winter of the following year) my symptoms had gone away. He basically felt up my legs and stuff and said there was nothing there. I think we all came to the diagnosis that it was a virus. I was done with it, and it was a good thing to. Little did I know that the constant sinus headaches and chest infections had all that much more to do with the disease. I was at my work term at a very prestigious local company and they were very understanding about the amount of time I had missed, but, missing time was something I hated doing. I even missed the last day of work before Christmas because I had one of these horrible chest infections. Then, the summer of 2006, I started having more chest infections and sinus pain. I was working with a big company on a 6 month contract and had to call in sick quite a few times. I didn’t know why I couldn’t feel better! Anyways, let’s fast forward to when it all came out in the wash.

Traveling Pain Returns

In November of 2006, my traveling pain came back. This time it was like it was all out of whack. I’d be affected at more than one joint at a time, and the pain was much more severe. I had infection after infection after infection. I had recently started a new job and started missing time from there as well. Though it was only a part time job, I still had to inconvenience them with numerous appointments, sickness etc. etc. Little did I know my immune system was just preparing for an eruption. I saw SO many specialists and had SOOOO many tests. However, March 26th was the day it all went helter skelter.

It started with a very bad chest infection. I know the date because it was also the first day of my new job at a big, wonderful company. It was so bad that I actually had to go home on my very first day because I couldn’t breathe and thought I was going to pass out. So, I went to my family doctor that night who gave me some biaxin (an antibiotic) told me I had a bit of something on my chest and said I should be fine to return to work in a couple of days. However, it didn’t get better. While I kind of “felt better” the chest congestion was still there…and then the bleeding started. Every time I coughed, it would be a wonderful mixture of mucous and blood (sorry so graphic). This persisted for a couple of days before it started to turn in to more blood and less mucous. Finally, it became just blood. I was coughing up blood for over a month when I finally decided to go to the doctor. I had missed another day at work, and had to see the only available doctor on that night. Today, I’m thanking my lucky stars that I did. This is when I first met Dr. H, the one I now think of as my angel doctor. I complained about the blood and also mentioned my traveling pain. I kind of brought it up to her in a round of about sort of way. Pretty much starting it off with…..”Okay, you’re probably going to think this sounds weird and think it’s all in my head BUT……” Then I started on with my traveling pain story. Instead of brushing me off, she showed nothing but concern. She ordered a blood test right away and also sent me in for a chest X-Ray. She also told me it was very important I get the tests done, which most doctors don’t do.

The Call that changed everything

On May 15th, I got a call at home from my doctor. She told me my chest X-Ray came back and it turned out there was pneumonia on my chest. She gave me some anti-biotic to pick up right away and made a follow up appointment to see her the following week. Then, I got another phone call from the doctor. She was so concerned about me that she phoned a respirologist (lung doctor) to get his opinion on my ‘pneumonia’. This is when she found out my blood tests had also come back and my RF was up, my ESR (sed rate) was up and my white blood cell count was up and my Sinus CT Scan was back and I was blocked BLOCKED with infection. The lung doctor advised her to put me on a stronger lot of anti-biotic, gave me a bunch more blood work and said I should be feeling better on Tuesday (this was a Friday).

Well, I went back to see her on Tuesday and was NOT feeling better. You could almost say I was even feeling worse. This is when she started to get really concerned. By this time, my eye had become involved. It was red and painful. Also, I had a rash on my arm. So, let’s get this straight, I had a really bad sinus infection, I could hardly walk or even turn a door handle, I was coughing up blood, I had a very painful and red eye, my arm had a rash on it and I overall felt like crap. My doctor called another lung specialist that night (the one on call) as well as an internal medicine specialist. Both doctors told her to continue treating me with the anti-biotic. They figured the pneumonia was causing the blood. So, she let me go that night with a yaffle more prescriptions and gave me the best advice possible. “IF IT GETS WORSE OR YOU CONTINUE TO FEEL CRAPPY PLEASE GO TO THE ER”. Okay, so maybe those weren’t her exact words, but, she really put the fear in me that something else could actually be wrong and don’t hesitate to visit the hospital if I continue to feel bad. Friday I felt icky, Saturday I felt ickier, finally, Sunday morning I told B that I’ve had enough of it and needed to go to the ER. That’s when the world wind of information started.

In the ER

The doctor at the ER was lovely. He sent me for blood work and a chest X-Ray. He even went over all the blood work and tests I’ve had over the past few years. I think he knew something was up, but, wanted to do some investigating. He came in to my room at about 5:00 that evening and told me, my Mom and B that he suspected I had something called “Wegener’s Granulomatosis”. He was going to get an internal medicine person down right away to see me. As soon as he left the room I started to cry. He was so nice and thorough, but, he did say some scary things like “chemotherapy”, “admit to hospital”, and “kidney failure”. B left the hospital to pack me a bag and decided to have a look on the internet. BIG MISTAKE. A lot of sites on the internet basically say the outlook is grim, but, you need to know how to filter the information. That night, I had to get a CT scan angiogram (they had to inject dye in to my veins and it makes you feel like you’ve peed your pants). This is when they confirmed I had a lot of hemorrhaging on my lungs and these little nodes called “granulomas’”, something which is very typical of Wegener’s patients. So, throughout the week (the week from Hell), I was thrown so much information that my head started to spin. I learned about the drugs I was going to take, their side effects, the outlook for my disease. I tell you, it’s not the most pleasant thing to have to go through, but, I keep telling myself it could be so much worse.

The road to remission

So now, I’m on the road to remission. I’ve started the first batch of drugs which have completely muted my symptoms. The drug I’m taking is called prednisone. It is a steroid which can have some very serious side effects. They make me feel so good, yet they’re so bad. I love ‘em, yet I hate ‘em. Well, I can’t say I hate them yet, they’ve done nothing but good for me so, we’re going to hope it stays like that.

This past Friday I had to get a kidney biopsy. This is something I wouldn’t wish on my worst enemy. I could feel the needle going in and I could hear it piercing through the layers of fat and tissue. It’s an experience I’m trying very hard to forget. With that being said, I can say it wasn’t THAT bad. Sure, it hurt a little when the freezing needle went in, but, all in all I think it was the thought of one of my organ’s being poked and stuff coming out of it.

Yesterday, I had an appointment with my nephrologist (kidney doctor) and that’s a new blog all in it’s own. From that appointment, I got my “Girl in the Bubble” name. I’ll explain later the week.

Tomorrow I start my chemotherapy. It’s a drug called cyclophosphamide. I’m super scared about that, but, I know it’s just to make me better. While this disease is not curable, it’s treatable. So, that’s what I need to go on.

The Point of it All

So, what’s the point of this blog? Well, I pretty much would like to document whatever goes on throughout my treatment. Also, I’d love for my information to help someone else in the future who is newly diagnosed. Wegener’s is a VERY rare and VERY serious illness and unfortunately it’s one that most people haven’t even heard of (unless they’ve watched “House”).