Something Good

My Heart Failure Specialist game me a new medicine on my last visit to see if it would help with my coping skills with the Heart Failure. It is called Ranexa and it is not usually prescribed for patients with non-ischemic cardiomyopathy.

I have been taking this for two weeks now and I am happy to report that this medicine seems to be working for me. It is not meant to make me better, but to help me to not feel awful all the time.

One thing that Heart Failure patients report, and I am no exception, is that we all feel pretty awful most the time. We have good days and bad, good days are only tiring, bad days many of us feel like something has drained us of most of our life and we can have some or all symptoms below;

Mononucleosis-like fatigue,
Muscle soreness and weakness,
Arthritis like join pain in various locations, including back, hip, and knees
Sever muscle cramping in my legs, and sometimes my left hand
Fluid retention
Shortness of breath,
Dizziness,
Heart Palpitations,
Hot Flashes,
Cold Chills.

I plan to ask permission of some other to post portions of their posts on this blog, so a broader point of view can be expressed.

I also want to send kind thoughts to all those who suffer with Heart Failure, and humble thanks to those who have helped my family and me so much over the past few years.

My next post I plan to discuss fear.

Waiting on Test Results

It has now been 16 days since my last cardiologist visit and I am waiting on the blood test results a bit anxiously. The number I am waiting for in particular in the BNP number, which is a measurement of the amount of stress the heart is in and a key indicator as to whether the researcher in Germany will take me into his trials for adult bone marrow stem cell treatments.

This phenomenon of my heart function dropping so quickly for no known cause is admittedly disconcerting.

I think this anxiousness is typical of any patient awaiting results, and for me it is not a stressful as some other test results, but it is still important to me.

I guess we will see what we will see.

News

I went to my heart failure specialist on Friday, Aug. 3, 2007, for my usual testing and blood test, exam, etc. My Ejection Fraction continues to drop, this time to 20%, down from the 25% measurement in May 2007.

This is a continuing trend as my EF was 35% in the October 2006 measurement.

That gives us a 15 - 20 percentage point drop in 10 months.

This is baffling to my doctor, as he says I am "optimally treated" with the industry best practices for prescriptions as well as having a bi-ventricular pacemaker with an ICD.

We discussed the point at which transplant begins to be a factor, and he said we are not ready yet, and there is no real formula. It is really a factor of when they deem I have a better chance of survival as is, or with a transplant.

Action steps moving forward are to get my blood test results, and package up the echocardiogram and other results, and send them to the stem cell researcher I visited in Germany in June.

Then I had the conversation with my children, and we are working on a plan for contingencies while we can. We don't want to have certain conversations under acute situations.

I am grateful for my wonderful children and how they are working me. I am a lucky man.