Length of this trip

I was recently asked by a friend of mine how long I have been on this journey, and I realize I have not written on that topic, short of anniversary posts. This story was originally too long and boring, so I have shortened it.

Part One

In February, 2002, I started getting some strange symptoms of an aching in my chest. My doctor has done a full physical and treadmill on me less that 9 months before and my heart was perfect then, so he told me I was working too hard and to take some aspirin.

The next marker I noticed was when I was on vacation in July of 2002. I went out to run on the beach and noticed that I had no wind, and my heart was beating abnormally hard after just a short while.

In February of 2003, I went back to my regular internist because I continued to feel lousy. This time my internist did an EKG and read the results. He came back into the room and said, “Mr. Connelly I have having my nurse drive you to the hospital right now, and I have scheduled emergency surgery for tomorrow morning for you to receive a pacemaker.” At that point, my life was changed forever.

That night, alone in bed in the hospital the night before my surgery, I made my peace with God and prepared myself in case of death. Ever since that moment, I have not been the same person. I had let go of my fear of death.

Muscle Atrophy

So my last couple of posts have been related to muscle atrophy and I read something earlier today where someone mentioned their experience of muscle atrophy as a result of CHF.

I just sent a post to one of the mailing lists I belong to concerning this to see if others with CHF have experienced this.  I am very curious to see what reaction this gets.

My guess right now is that this may not a well known issue because most persons with CHF are older instead of young and it is not so noticiable.

Slow Degeneration

In reference to my last post, my legs are probably 25% of their original strength and my upper body, 50% of original.   I tried to use the 30 days of no travel in Dec. and Jan. to build back up, but it seems to have been almost to no avail.

There are some stem cell studies supposed  to start in Feb. near where I live and I hope to get into them when I return from this trip.  Technology can be terrific.  At least it provides hope.

Leg Pain

When I was initially diagnosed with CHF, it seems that I lost a great deal of muscle mass all over my body, as if whatever attacked my heart, attacked the rest of my muscles.

I find that if I get the opportunity during the day to lie down and put up my feet, my leg muscles (what is left of them) ache.  The more I do, the more they ache.  It almost seems this is happening because of the process of replenishing them with blood causes at least some of this.

I don't seem to have this issue with my upper body.  I think I will bring this issue up with my doctor next time I am there.

Hot Flashes

When I was initially in the hospital in 2004 with heart failure, the nurses warned me I would be subject to hot flashes, as many CHF patients are.

I have have many during the last few years, but last night was the worst.  For some reason, around 2 AM I got really hot.  Just sticking my foot out of the covers was not enough this time.  I ended up having to take all of the covers off me for a couple of hours.

It was very cold outside, so I am sure it was not because of hot weather.  In any event, I was grateful when they went away.

Degenerative Arthritis

My degenerative arthritis in my hips and back is becoming almost as much of an issue as my heart failure and my heart block.

I live with increasing pain every day.  I take MSM, Glucoismine, Chondroitin, and fish oil, but I can't take any pain pills other than Tylenol, which is almost useless.

My wonderful wife is encouraging me to get hip replacement surgery, which I have been putting off because of the heart tramas from last year.  It feels like the proverbial rock and a hard place.

Guess I will have to figure something out.

Stem Cell Hope

Yesterday I spoke to a research institution that is recruiting patients for stem cell studies for heart failure patients.  This is the first one in the USA that I know of that includes non-ischemic as well as ischemic cardiomyopathy.  My wonderful wife also called another study that sounds hopeful as well.

I visited a doctor in Germany last year trying to get into the only non-ischemic study in the world but I did not qualify at that time.  Now it appears that we may have choices.

It is ironic that after I wrote what I did yesterday morning that this would happen yesterday afternoon.  

Feeling hopeful at the moment.