My Cane

When I first came home from the hospital with my CHF in July of 2004, I could not make it across the room without help. Taking a shower wore me out for the rest of the day.

After a few days it became clear that I needed something to help me stand up. To get across the room without help. I used to bench press 360 pounds. Run 6 miles in Georgia heat during the summertime. Play tennis at noon time with a good friend of me.

As a good friend of mine used to say, "Them's the berries." It was time to admit reality, so I bought a cane. My cane has become a good friend. I don't need it everyday anymore, thank you. But on rough days, it helps me deal.

I have also bought one that collapses that so I can bring it on trips. Very cool. I used to be very ashamed of my cane. I used to hide it and sometimes I still do. But it is what it is.

Deal is what it is all about. I am so proud to be associated with the others on the Heart Failure lists ans Cardiomyopathy lists I am a lucky member of.

If you are dealing with CHF, Cardiomyopathy, or what ever you call it, I encourage you to do whatever you need to do to deal.

My best to you and yours,

David

Hope

So we buried my mother today. Sorry to bring this up because she had Alzheimer’s, not heart failure. But the whole process was about hope. Hope that one day no one will suffer from Alzheimer’s, or Parkinson’s, or cancer, or heart failure.

Without hope we have nothing. We project hope. We try to believe. Even if we fear our doubts will condemn us. We fear, and we have hope. Without it we have nothing.

I apologize for this post, but I am a mess tonight. Frankly, as I was sitting in the funeral mass today, I was thinking there is a good chance I am next. As you have read, I am not doing very well lately. I apologize, but that is what came to mind.

I know someone very well who recently lost a father and then a brother, back to back year over year. I can’t imagine the pain that family feels, although I imagine it better than I once did.

One of my brother in law’s did a eulogy today about my mom. It was amazing to hear a brother in law cry when talking about the fact that my mom was one of those persons who improved the world by her existence and her positive influence on others. I pray that one day I may be worthy of her.

I have hope for all those who suffer. I also pray for everyone who does.

Technology is our Friend

My mother passed away yesterday after a difficult battle with Alzheimer’s. I know someone who recently lost her father after a nasty fight with Parkinson’s, and yet another who recently lost her father to Lung Cancer. I mention this for two reasons. One is that this is on my mind, and two, because I want to say that one day I hope that technology will put an end to this kind of suffering.

Every day I see people suffering with Heart Failure and the various side effects and even from some of the treatments they have to endure for the disease. I mentioned in my last entry that in some cases we know that Heart Failure is a more fatal diagnosis that Cancer, but we have hope that people in other times did not.

Technology is our friend. Technology is giving most of us with heart failure a better quality of life, and in some cases, life itself, that we would not otherwise have.

Speaking of my own case, I know that without the Carvedilol (Coreg), Digoxin, Lisinopril, and Spironolactone, I would have had a heart transplant or worse by now. In fact, I also have another heart condition called heart block. I was diagnosed with this the year before my Heart Failure was diagnosed. In my case I have something called three degree heart block, otherwise know as complete heart block.

Without my pacemaker I have no heart beat.

They call persons with this situation pacemaker dependant. My son told me this qualifies me to be an official cyborg. Pretty cool, huh? Since my heart failure, they upgraded my pacemaker to something called a bi-ventricular pacemaker with an ICD. When I received this device in September of 2004, it had been approved by the FDA for only a few months.

Recently my doctor prescribed another wonder medicine for me. Apparently my heart not only does not contract properly, it does not relax effectively either. He calls this a “stiff heart”. Perhaps it is one of the reasons my EF has dropped from 35% to 20% from October 2006 to August 2007. In any event the medicine is called Ranexa and ever since I started taking it I have started to feel better. Not better as in cured, but it seems to have stopped or at least slowed the precipitous free fall I as experiencing. It came none too soon, frankly.

Here is a medicine that is not yet widely approved for Heart Failure, but is usually prescribed for Angina. One of the effects of the drug caught the eye of my heart failure specialist and he asked if I wanted to try it on his recommendation and I said yes. What an amazing thing.

There are many more examples of breakthrough technology in the works for us, including promising results with stem cell therapy, and now some really amazing findings in the world of molecular biology, such as this study on calcium and CHF.

It seems that mankind is learning at a rate as never before in the history of the world. Every day I see new breakthroughs and news studies striving for breakthroughs. I have been using an amazing web tool called Google Alerts. These let you set up your own key words and then they automatically email you whenever they get a hit. I have several alerts set up, including “heart failure”, “cardiomyopathy”, and “stem cell nonischemic”. At times I have spoken to my doctor and I have known about events before they did.

My parting thought for this entry is hope. Hope for everyone who struggles with this disease, or any disease. Hope also for those who have loved ones suffering.

I am very grateful.