Dilemma on Stem Cell Trial

Many of the stem cell trials are in phase two now and opening up to more and more patients.  There is even one that I know that takes non-ischemic patients.

My dilemma is that recently, my heart has been very stable and I am able to exercise like I have not been able to for the last two years, but my hips seem to be much worse and I am constant pain now even on "good" days.

It seems hip replacement seems the higher priority.   I am still thinking on this.

Feeling Diminished

I had the opportunity to see an old friend and colleague this week whom I have know for 14 years.  I have watched him struggle with some life stuff, but he is now doing very well and seems to be truly a "man in full".

It reinforced my feelings and thoughts about how my world feels like it has shruken so much these past years.  I still work full time and I am grateful to have a job that gives me flexibility.

I was lucky enough to get married to a wonderful woman in December last year and she is amazing.

Still, I can't seem to shake this feeling of diminishment.  Too much water over the dam with this disease, it wears down all of us sometimes.

Numbness of Hands and Feet

It seems I have more numbness in my hands and feet than ever before.  It feels like they are asleep a good bit of the time.

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.