Sunday, July 12, 2009 Herb Brooks at fault?

Friday was the two-week mark since my last bout of coughing blood. That was actually the longest stretch I've had since this whole thing started in April. I think we were all thinking that maybe, just maybe, I was starting to heal and that the end was in sight.

How wrong we were.

Last night, it started up again. About thirty seconds after my head hit the pillow, I heard a gurgle in my chest and up came the blood. Sleep after that was near impossible.

I am so disgusted, disappointed, frustrated, and angry that this is still happening. At first, the docs didn't want to do anything because any intervention is possibly life-threatening. Now, they want to send me to Toronto to see if something can be done, because apparently three months is really long to still be bleeding (no kidding). Part of me likes the idea of getting this thing fixed so that I can go back to work, but another part of me is scared to death because they could end up killing me in the process and I'm just not ready to kick the bucket.

Then again, who ever IS ready...?

Thursday, July 9, 2009

An Introduction to my Life

Two years, eleven months.

That’s how old I was when I was diagnosed with a hole in my heart. That’s how old I was when my life changed forever.

I don’t really remember that time in my life. I recall bits and pieces – being carried by my father past a huge statue of Big Bird and into the children’s hospital, laying in the hospital bed with a little girl next to me – but I don’t remember much else. I suppose that’s a blessing, since I never suffered the emotional turmoil of having my future change in an instant.

The hole in my heart is a ventricular septal defect (VSD), which is a hole between the two lower chambers in my heart. It is the most common heart defect and almost always picked up within the first few months, if not days, of birth. I, however, slipped through the cracks and was undiagnosed until I was almost three. My doctor declared me to be a happy and healthy baby, even when my parents asked her whether I had a problem with my heart because they could feel it pounding when they put their hands on my back.

It was only when my brother was born with the exact same heart defect that the doctor looked in my direction and told my mom that he wanted to check me out too. I can’t imagine what she went through that day, learning that both of her children had heart defects requiring surgery, not knowing if we would survive.

Thankfully, my brother received drugs to help with his congestive heart failure and had surgery to close the hole. He is now grown, an engineer, and relatively healthy, except for a little something he received from the blood transfusion during that surgery that saved his life…but that’s a different story altogether.

My parents had hoped that I would also enjoy a normal life post-surgery, but things didn’t exactly go as planned. The surgery was scheduled for just weeks after my third birthday, but someone mentioned to my cardiologist that he should check to see whether the VSD had caused damage to my lungs – pulmonary hypertension. A quick lung biopsy confirmed that doctor’s fears; the VSD had caused irreversible pulmonary hypertension (something they called Eisenmenger’s Syndrome), and I would not survive a surgery to close the hole in my heart.

My entire future changed with that diagnosis. My parents had hoped for a healthy child, and I was anything but that. My diagnosis meant that I would eventually require a heart and lung transplant. In the meantime, my activity would be limited and any exercise would make me turn blue because not enough oxygen was getting to my tissues.

As the years passed, my oxygen saturation levels dropped. Healthy people run around 98% or higher, but I now find myself in the 70% range when I am at rest. Walking for a few minutes drops that number to the low 50s.

Thankfully, my life has been pretty uneventful until now, at least as far as my Eisenmenger’s goes. I have spent little time in the hospital, and I have spent plenty of time in school – including university. When I was first diagnosed, the doctors predicted that I would not survive to see my 18th birthday without a transplant; I am now 27.

Now, things are a bit different. One thing that people with Eisenmenger’s have to deal with is a little something called hemoptysis, which is a fancy medical word for ‘coughing up blood’. I dealt with it when I was 16, and it lasted for about a month and wasn’t too bad. This time around is a different story. It started about three months ago, and I have been hospitalized 7 times. I have been told that it doesn’t usually go on this long, but the doctors don’t quite know what to do because of the risks associated with pretty much any intervention. Meanwhile, I have coughed up about 2000cc of blood in three months. Not pretty.

I have started this blog because I wanted some sort of outlet for my feelings. I have talked my head off to my mother about what is going on and she is as empathetic as they get, but I still feel the need to do something more. I need a confessional – to tell people what I am feeling, uncensored. I want to tell people what it feels like to grow up with this syndrome. I want to get all of this ugly stuff off my chest, even if that ‘stuff’ is not politically correct. Hopefully someone will read this and understand. Hopefully I am not alone.