Back From The Brink

So this increase in my Ejection Fraction from 20% in August 2007 to 30% in November 2007 is an interesting exercise in my thought process. Good news to be sure, but the up, down, up thing is sometimes a challenge.

I understand it is not unique to chronic, dangerous diseases. We read every day about Cancer patients going into remission and then having the Cancer come back. Although this is not really the same, the never knowing if, is something all patients like us must learn to deal with.

So I am grateful to be sure. I had begun thinking about the heart transplant that seemed inevitable (if I was so lucky) in the near future, and was trying to take care of the rest of the body so I could hopefully still qualify. My doctor and I had discussed the timing and he had some parameters in mind to tell him when it was time to do it.

I had not told very many folks how bad I was, of course, that does no good and people just get freaked out anyway. I could see myself shrinking before my eyes at that time, though, and my doctor said he did not know what to do.

Turns out he figured something out, because almost immediately after he experimented on me with the Ranexa, I started to feel better. I am grateful for his innovation, because Ranexa is not indicated for CHF patients, but his research had led to conclude it might help one of my issues.

Now it is time to rebuild some of what was lost in the drop from October 2006 to August 2007, when I dropped from 35% EF to 20% EF.

Hospital Visit

So I got home from a business trip to Germany a couple of weeks ago and I woke up the next day with a fever and flu like symptoms. It was the weekend so I decided to wait it out and on Monday I started to feel better.

On Tuesday I woke up feeling worse, with fever, aches, I could not keep anything down, and also stomach pain. Long story short, I ended up going to the emergency room at 5 AM because the pain was so bad and I was starting to get shortness of breath.

They put me on oxygen and IV’s to replace fluids and did a bunch of tests for the fever, stomach pain, and also my heart. I was too out of it most of the time, but it appears they were very thorough.

Good news is they said it was a virus, with a secondary infection for which they gave me antibiotics. It was a big scare, of course, but some really good news is they did an Echocardiogram on my heart and ran my BNP.

The echo showed my BNP had increased from 208 in August to 256, which is not a big deal, and my EF had improved to 30%. 30% is not great as you know, but I was dropping like a rock for several months there so any improvement is a win from that perspective.

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.

Fear

So of course, this is one of the big ones. I will try to address the topic of fear in this entry in several dimensions without turning this in a book (grin). Everyone has fears. Any one of us could meet our end any day by many different ways. I accept that as a valid point. This entry, I hope, will describe some of the specific fears of patients with Heart Failure, and communicating the issues of those with Heart Failure is the point of this blog.

The first fear most of us face is, will this kill me and how long do I have? When health professionals are candid, that admit that this is a debilitating and degenerative disease with no known cure.

One of the first studies most of us read has this message; “Median survival after the onset of heart failure was 1.7 years in men and 3.2 years in women.” This comes directly from the Framingham Heart Study, the definitive study accepted in the medical world, although the data is starting to get old. A link to this reference is just below.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=PubMed&Cmd=ShowDetailView&TermToSearch=8319323&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

Then there is also this accepted fact of science that comes from the May 15, 2003 issue of the New England Journal of Medicine: “Symptomatic heart failure continues to confer a worse prognosis than the majority of cancers in this country, with one-year mortality of approximately 45 percent”

So, we read this, and we get our first dose of reality therapy when it comes to dealing with what we have and understanding the seriousness. Cancer has an overall higher rate of survivability. So there you have it. Deal with it.

Another dimension of fear is the fear of the body giving out when you want to do some daily function. Like bathing. Or walking. Or being with someone you care about. Ask any Heart Failure patient and most will tell you they have good days and bad. Sometimes the bad days are predictable, when we over-exert ourselves.

Sometimes we start to feel okay and we tend to forget quickly that we pay a price and we do too much and then wham! You feel like you where run over by a truck. Sometimes this comes on without any real warning as well, and we never know when it will hit.

One last fear I want to express is the one that any patient faces when they have a chronic disease with a high mortality rate, and that is the fear is leaving your loved ones behind without knowing they will be watched over and cared for without you there. This fear can be exacerbated when one has small children, or has loved ones or friends that depend on you to be there for them.

In my personal case, I am lucky enough to have great friends who are on the list of persons to call “just in case” I am not able to be there for one of my children, who struggles with her own chronic disease.

I don’t want to close this post on a negative note, so let’s just say this fear thing is not something that controls most Heart Failure patients that I have met. Almost without exception, I have seen amazing bravery from old and young alike. I have heard that real bravery is not an absence of fear, but the ability to face and deal with fear. I am grateful to be associated with these people.

Some of my upcoming topics will be a bit more uplifting, they include Hope and “Technology is our Friend”

Thanks and my best wishes to you.

My BNP

Sorry to all who may be waiting on the BNP answer. The doctor’s office originally sent me the wrong results, so this has been delayed in reporting.

The good news is that my BNP is only 206.6 as of August 3, 2007. This is up from 96.6 in May 2007, but it is way better than it could be given the fact that I have dropped in my EF from 35 % to 20% in 9 months. So I am very grateful for this test result.

I still plan to pursue the stem cell route, and will send my results off to the doctor in Germany that I visited in June of this year, and I will also purse the doctors my friends have recommended.

We shall see.

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.

Gaining Weight

My body seems to be trying to gain weight lately, in spite of my increased exercise program. Sometimes it seems random, and my metabolism just seems to stop for a while, and then just as randomly, it comes back.

This could be some water weight, as I tend to retain water after a busy day or the days I exercise, and then it comes off naturally if I rest enough. It does get frustrating sometimes.

I plan to raise my focus on this even more, as I have focused on trying to get these extra pounds off recently and my efforts have not been effective enough.

Third Anniversary of Heart Failure

July 16, 1007

I was not going to write again today, but I looked at my calendar, and today is the third year to the day when I went into the hospital dying of heart failure. It is ironic that I decided to start this blog today, and not on purpose.

When I was originally diagnosed in July of 2004, my Ejection Fraction was around 10% (normal is 60%), my BNP was over 2000 (normal is less than 100), my lungs were filling with fluid, my kidneys were failing, and I could not breathe without oxygen. They put me through the tests to qualify me for a heart transplant as they believed I would die without one.

I could not walk across a room without help.

I was 50 years old at the time with low cholesterol, low BP, and very fit just a few weeks before, able to go 45 minutes on an elliptical machine on high. I was not overweight but sort of on the thin side and I did not smoke.

They call my disease nonischemic cardiomyopathy. This means there is no apparent cause. They say they think a virus attached my heart. But they don't really know.

They put me on Coreg, Digoxin, Lasix, Spironolact, and Lisinopril. I also had to change doctors to find a heart failure specialist. Now I have two cardiologists, one for Heart Failure and one for my bi-ventricular pacemaker / defibrillator.

To make a long story short, three years later, some days I can function okay, and can tolerate working. I have some days where I actually feel pretty good.

There is new technology coming to help us, like the stem cell research being done in trials to help repair the heart muscle. Technology is our friend.

I plan to try to publish some others stories here eventually. Perhaps anonymously. They deserve their privacy, but I don't want this to be all about me, although some of that can’t be avoided. I do want it to be representative of all those who suffer with CHF.

My best to you and yours,

David

Monday Morning

July 16, 2007

This is the first post of this blog. I hope to be able to communicate a bit what living with heart failure is like. There are many articles and publications on cancer, alzheimers, diabetes, and a number of other chronic diseases, but this is an attempt to communicate for those who suffer every day with heart failure.

The fact that my heart failure was not caused by a heart attack does put me in a minority category and there is not as much research on this version as others, so that makes this journey even more interesting.

Anyway, this is not meant to be morbid, I am a very lucky man. I have two wonderful children who and doing well, good friends, and a really wonderful and supportive lady friend.

Later this week, we will start with some daily experiences. My best to you and yours.