Winning an important battle

My heart is getting better. There is no need for an implantable defibrillator.

Oh, Happy Day! Really, few words describe the mix of relief and joy I am feeling. This song actually sprang into my head when I got the news Friday, and I'm not really a gospel guy. Click on the link and enjoy. Then come back and read the rest, OK? Thanks.

The test results show evidence that my heart muscle has improved since the last echo back in March when I was diagnosed with sarcoidosis. Back then, my heart was so weak that a cardiologist at Northwestern Medical Center wanted to install a defibrillator. I decided to try a pharmaceutical regiment, exercise, got serious about quitting smoking and other lifestyle changes. All that is paying off.

I am winning a battle, in a long war.

“I know they were talking about defibrillator and stuff like that, but at this point, you do not – I repeat - you do not need anything like that at this time.”

The cardiologist told me to keep with up with my heart medicines - carvedilol, lisinopril, hydralazine and hydrochlorot. He also said he would speak to the rest of my docs about reducing prednisone I am taking to control sarcoidosis.

I am excited. I know healing takes a while. I have tried hard not to give myself deadlines (One to two years! I can't help it!) and I still have a ways to go. But this is a significant development. I am excited about it and relieved. For the past eight months, I have been wondering whether sudden cardiac arrest would claim me and what it would do to my family. I thought long and hard about having the defibrillator installed. I came very close to asking for the procedure in August when I moved back to New Jersey.

However, I held off because I believe in the human body’s ability to heal and my ability to overcome. I believe that God helps those who help themselves. I am thankful to my family and friends for helping me get through these challenging times.

I’ve a ways go: Sarcoidosis is still affecting my heart and lungs. When - will - it go into remission? What will a CAT scan of my lungs, to be done in late November, reveal? What organs might it strike in the future?

What is the correct dosage of prednisone and methotrexate that will continue to control sarc without dangerous side effects?

Will I ever get off of these pharmaceuticals for good?

That is my ultimate goal.

I don't take this win for granted. It will fortify me for the challenges ahead, and I know they are plenty. I am ready for them.

But today, I celebrate winning a battle.

Good-bye, for now, to favorite food

This is a photo of me and one of my most favorite foods, a hot dog.

Not just any hot dog. A Texas Weiner. There is a rich history behind this tasty treat.

My good friend Charlotte Fiorito shot this photo on July 27, my birthday. I turned 44. That day, I also said good-bye to to hot dogs in an effort to save my life.

Hot dogs are loaded with fat and sodium. I am taking prednisone to reduce symptoms of heart and lung sarcoidosis. A major side effect of prednisone is weight gain through the retention of water and sodium. It is difficult to say good-bye to the foods you love when you are on prednisone because another prednisone side effect is insatiable hunger. Prednisone patients are ravenous 24-7.

The last time I had hot dogs was July 27. I ate a Texas Weiner with Charlotte while we were on a remember-back-when tour of Plainfield, N.J. That Weiner touched off a craving. I had to have more hot dogs. Later that night (or early morning July 28?) while my folks were asleep, I raided the basement freezer for more.

“This is crazy. I really should not be eating this,” I thought to myself as I nuked the dogs, pulled the relish out the fridge and got the rolls ready. “This is crazy,” I said as I slathered the buns with mustard and relish, put the dogs on and “This is crazy…”

Can’t think full mouth…

After eating those dogs, my lower legs swelled so badly I had to lie down and prop up my feet to reduce the swelling. I was actually afraid to check my blood pressure. It would have been too depressing. If I stand a chance of beating this disease and controlling the prednisone side effects, I thought to myself, I have to rein in this appetite no matter what.

Diet and exercise became the goal. I’ve been walking with my dad and lifting weights every day at least five days a week. I walk a few miles every day and lift weights five days a week.

I won’t weigh myself just yet. I have an important doctor’s appointment on Sept. 8. They can weigh me then. Last time I was weighed was three weeks ago and I was 306. I am now trying to gauge success by how my clothes fit. They are getting loose, which is a good sign. I also gauge success by blood pressure reading results. When I moved home, my readings were in the 150s/90s range, with a new in the 170s/110 (that was at wake up…sleep apnea)…Now the readings are in the low 130s/80s, with a couple in the 120s/70s range. The readings are much closer to the 125/85 my doctors want me to maintain.

(This photo shot on Aug. 20, 3-1/2 weeks into working out. Shirt, pants are no longer tight!) I’m feeling better. I am moving better. I assume I am losing weight. We will see on Sept. 8.

It’s tough to say no to hot dogs. We as a nation consume billions of them. They will be front and center at the majority of cookouts this Labor Day weekend. How can one resist. The key, for me, is moderation. I have not had one in more than a month now. I can do one. It will not kill me. After that, the only dog in my life is Tobie, my parent's beloved golden Labrador.

Cutting oneself some slack

(I shot this today while following my dad along a trail in Lakewood, N.J.)

Thursday, I had a blood pressure reading of 120/80 – the lowest my blood pressure has been in more than a year. My doctors’ goal was to get it to 125/85. I beat that.

Good for the heart and good for the mind. I was worrying a lot about the heart. This development is especially exciting because I am still on prednisone for my pulmonary and cardiac sarcoidosis. I am walking three miles a day and lifting light weights. I am sure that, combined with a reduction in the amount of prednisone I am taking – helped lower the blood pressure.

I’m trying to lose weight because I have obstructive sleep apnea, too, which makes blood pressure soar. I sleep with a CPAC - short for continuous positive airway pressure device (a mask attached to a tube attached to a small, quiet motor - but I want off of it. I am trying to lose weight even though prednisone is working hard against the goal.

Oh, I should give you an update: The pull-ups thing was a miserable failure. I gave it my best shot, but my body was too weak to make good on that promise. I sulked for a while about that and then accepted the fact that I would have to start from scratch to rebuild myself.

My goal is still there. The method is now more practical. Crawl before walking. Walk before running. In New Jersey, I started with a 1-1/2 mile walk. Now I am up to three miles. Every day. I walk with my dad and/or Tobie most of the time. I walk an additional 1-1/2 miles at night with my mom. Tobie’s in tow, too.

My dad caught me obsessing about my weight the other day – prednisone rage. My frustration was off-the-hook. I knew it and could not help myself. I was obsessed with the feeling of failure and futility. “From where I sit, this is a good day,” he said. “Your blood pressure is normal for the first time in a year and your clothes are fitting differently, and you know it.”

He was right. My clothes were looser. I was standing taller. My ample belly…was finally starting to shrink. The water retention, the back fat (prednisone really stinks)....it will go as I continue reducing the prednisone...

Dramatic change will not occur in a weeks or two months. I have to be patient and diligent.

And I have to cut myself some slack.

Lord, please help me get 10 pull ups

For some reason, I find myself thinking about my college days (daze). It's a mid-life thing….OK mid-life crisis thing. Hate to admit it, but true.

I guess some things can’t be avoided. At a certain point in life, you realize that life is probably half over. Time to re-prioritize goals. Pull ups are on the immediate horizon.

Back in the day, in my late teens and through my 20s, I was fit. Not rippling muscle fit, but much firmer and very strong. But we age. At some point, it just becomes especially challenging to keep fit, especially if in these times when most of us have desk jobs, an unlimited number of processed foods enticing us and all sorts of diversions to take our minds off of working out in any form.

Right now, I walk, anywhere between 1-1/2 to three miles a day, depending on how I feel. I just need to do more. I have no illusions about being a pure athlete. The NFL has no use for 40-something tight ends. However, in my quest to conquer sarcoidosis, I am committed to getting in getting to the point where I can do at least 10 pull ups – hopefully by July 27. My birthday. I'll be 44 (Gotta figure out how to illustrate this story line. Guess I’ll shoot a little video as proof of success or failure).

Last week, a dear friend of mine from my middle school and high school days found me through facebook.com and said hello. She has a vibrant freelance photography business, a loving partner, beautiful cats. Charlotte, everything you told me, it all sounds great and I am so happy for you.

Charlotte was the one that made me reminisce about times when I did not get winded or tired (I meant to ask her if she remembered our marathon bicycle rides from back in the day). It was in the dorms on at the Temple University Ambler, Penn., campus that I actually wowed folks with the number of pull ups I could do. I felt like I could do them forever.

I was not a jock. Always an artist; specifically a writer and cartoonist. But I to defray expenses, I was always on the prowl for jobs and they were manual labor gigs delivering paper routes - UPS truck packer (sorry about those packages, folks); carpet cleaner; mover, stuff like that.

I was always fit and lean. I'm six-feet, three-inches tall (I thought it was 6-2, but Northwestern nurses find the extra inch. I'm claiming it but I thought we shrank as we got older).

The battle with pulmonary and cardiac sarcoidosis has definitely made my weaker. I acknowledge that I am better now after treatment, but the road to recovery is long. And I need benchmarks, so I have the intermediate goal of pull-ups.

Back in the day, the pull-ups routine – besides keeping me in shape – was a straight-up “chick magnet,” my way of demonstrating strength and virility. I know that.

Now, pulling off 10 solid pull-ups is a marker of success along a long road to wellness. And the goal of building muscle and losing fat. I'll eventually add push ups and squats, just using my own weight. But today, we do 1-1/2 miles, some pull ups (which actually might mean me just hanging from the pole until my system recovers from the shock of my desire to actually do something).

Bottom line is this: I need a physical challenge. The drugs that are suppressing my sarcoid symptoms, prednisone and methotrexate suppress the immune system. A sweaty gym might not be the best move right now.

But I have a deck that is a perfect personal obstacle course. I am turning it into a jungle gym for a 43-year-old kid. I'm also eyeing a little outdoor playground on Ashland. Seems like a fun place to play.

Try not to laugh too hard if you see me there just hanging from the pull up station.

I am doing well with weight. Folks on large doses of prednisone gain weight I did, but began working immediately to fix it. My size-42 jeans are starting to sag in the ass. Awesome.

I have a crazy goal of getting back into size 34 or 36 – crazy, I know. But the pants, they are beginning to sag. So I am going for it.

Weight loss has many benefits. Obesity fuels so many diseases that slow down people. Even limited weight training helps, too; stronger bones and muscles, revved up metabolism; improved self image.

I'll never be 180 pounds again, but I can get to a better weight for my frame and heart. So, I am going for it.

The late, great NFL defensive end Reggie White - one of my favorite athletes - died of complications of sleep apnea and sacroidosis in 2004 at the age of 43. I was diagnosed with sarcoidosis in 2005, but it was dormant back then. It became active and raged for a year before being properly diagnosed in March.

I am cool with it and up to the challenge of getting well.

Lord, please help me get just 10 pull-ups.

What exercises do you do to get/stay in shape?