“Let’s say that you have 15 years….”
The electro-cardiologist’s voice trailed off, but the unspoken end of his sentence was “to live.”
As in…Let’s say you have 15 years to live. Then you will die. At age 58.
And it could happen before then. You have a sudden-death heart attack.
Or you could die slowly; gasping for breath as your lungs slowly crystallize to the point where you can no longer suck in air.
I was not ready to hear that even though I was lying in a bed in Northwestern Medical Center’s critical care unit. I was wearing an oxygen mask and an IV. I’d lost count of the tests. I started talking to God, just in case. At the same time, I was reassuring my parents in New Jersey that I was fine. Tough job... I did not believe it myself. I called for help because I began dry heaving and coughing up blood after dinner with a friend.
I did think I was going to die, but I also kept thinking that I had come this far...if I had one more chance I would make the best of life.
Now I am listening to this 15-years-left-to-live shit. Damn. I’m 43 years old. I am told I look younger (mostly because I tend to shave off my gray). When you're in your teens and 20s and someone tells you "Well, 15 years from now, you could..." It seems like such a long way off. But now...
I don’t want fast or slow death, not right now and not at 58. I’ve got too much to do. So I’m going to fight. And I am drawing up a battle plan.
I have cardio and pulmonary sarcoidosis.The same diseases that contributed to the early deaths of ex-NFL great Reggie White and comedian Bernie Mac. At ages 43 and 50, respectively.
For clinical definitions of sarcoidosis, go
here.
My definition: It’s a chronic condition that somehow causes your immune system to fight vital organs, scarring them with a hard tissue that diminishes their function. The more scar tissue – technically called granulomas - a patient has, the worse off they are. For most sarc patients, it is the lungs that are affected. I have that.
It can also affect the heart, which my docs suspect is a problem, too because my left ventricle is dilated. It's being monitored because it isn’t pumping the way it should. There’s a chance it could cause a heart attack and we’re treating it, trying to arrest the damage with prednisone and methotrexate, and watching to see if it improves.
If it does not improve in the next six to 12 months I will have to consider having a defibrillator placed in my chest. I am trying to avoid that. I just feel I am too young for that.
I have thought long and hard about blogging about this. I have thought long and hard about blogging in general. It was never my thing. I am a seasoned journalist, with some 20 years of news reporting, writing and editing under my belt. I wrote my first professional news story when I was 17 and, as good journalists do, always strove for objectivity. I never wrote about myself. It was always about the situation and the subjects, the characters if you will, at the center of a situation.
Why would anyone want to read someone’s blog, I wondered, especially the stuff about “Today I ate eggs,” or “Let me tell you why my girlfriend hates me?” I have always tried to distance myself from the Me-Mes.
But a good friend of mine, Tim Via, who stood by me when I was hospitalized in March, explained to me the importance of stories with POV, a point of view.
How else can folks related to it if there isn’t a face on it? And what if you have something to share that can help someone? You don’t want to sit on that, right?
You’re right, Tim. I don’t want to sit on that. And I have a need to help myself. Writing for an audience is both therapeutic and cathartic. And it will keep my honest.
So, I make the following pledges in public. These are my six- to 12-month goals:
- Continue on the medications as prescribed by doctors, but work to get off of them
- Live a healthier lifestyle. No smoking or junk food (OK, a Wendy’s burger on occasion. A wedge of chocolate cake on occasion. Life is meant to be enjoyed after all).
- Moderation. Exercise, exercise, exercise. Every day. I will try to remember that we were built for motion, not sitting behind desks
-Be positive. Bad thoughts creep into one’s mind, especially when prednisone and methotrexate side effects kick in. But we can control our thougths, so I will strive to be as positive as possible.
Right now, I am reminding myself that I was so sick in March I could have died. Now I am celebrating the fact that I (almost) have smoking under control and am losing weight the prednisone, which keeps symptoms of the disease at bay but makes me want to rob a bakery of all its double-chocolate donuts (mmm, double-chocolate donuts…)
- Reduce bad stress. It is the root of all things evil. We tend to overlook stress in our lives, but it dosen’t allow us to think clearly, makes us self-destructive and is an obstacle to good physical and mental health.
I'm going to live life to the fullest. Hey, 15 years is not a long time and I have a lot I want to do. So, I'm writing fiction and trying to see as much of the beautiful city of Chicago I can possibly see. Also catching up with family and friends, reconnecting to what is important. And the most important thing is the people in our lives.
And I am planning to be here for years to come.
This is a lengthy introduction, but I wanted to say hello and tell you a little about myself. More to come. Thanks for reading and I am looking forward to your comments.
These are the drugs I take every day...
