I am a 47-year old male and I have advanced heart disease.
This Blog addresses the issue of living with heart disease, its impact on individuals and society, its management, approaches to mitigating its effects, current trends in disease treatment, preventive strategies for stopping heart disease before it occurs, as well as current treatment and future developments.
Before continuing and for those interested, it may be useful to review information related to the heart and its arteries.
So here is my story:
I can remember when it all started in 2004 when I was 38. At first, I hardly paid any attention to the heartburn I would get while mowing the yard. I took little notice as the pain would stop whenever I rested and, because I did not work out at the time, no other opportunities presented themselves for me to note the discomfort.
In early 2006 I moved to Austin from Houston. By April of that year, the pain was a constant companion. Thinking I had some form of gastroesophageal reflux disease (GERD), I decided to make an appointment with a gastroenterologist as soon as I met with my new endocrinologist. The purpose of the endocrinologist meeting was to continue my treatments of Testim, a 1% testosterone gel I needed to address idiopathic (meaning for reasons unknown) hypogonadism, which is a fancy way of saying I suffered from low testosterone levels. My pituitary gland was not sending out high enough levels of hormones which would then circulate to my testicles, their job to create the testosterone so critical to male health. An MRI showed no growths on the pituitary itself, so the endocrinologist I was seeing at that time left it at that and started hormone replacement therapy.
So here I am getting a full checkup by my new endocrinologist. My blood results indicated a total cholesterol of over 600 and triglycerides of over 2000. I had seen these numbers before and been on cholesterol lowering medications, but never stuck with the plan. I was 22 years old when I first noted results this high and I was now 39. She asked some questions, which lead to me telling her about the GERD. She inquired into my willingness to undergo an EKG. I said no, I did not need one. She persisted and convinced me the test would only take 5 minutes to complete. I finally agreed.
When the results came, the nightmare began. My referral to a local cardiologist was immediate and the following week I was taking a nuclear stress test – which I failed miserably. I then scheduled the first of many angiograms to come. The following week I packed up a few items for an overnight stay and my wife drove me to the hospital.
An angiogram itself is not a scary procedure – at least not to me. You get a good shaving of the hair around the private area, wheeled into an extremely cold room, moved onto a table and covered in warm towels and pumped full of morphine. The cardiologist then enters and makes a small incision in the femoral artery and feeds up an angiogram or intravenous ultrasound catheter. I was awake during most of the procedure, but most patients find themselves fairly doped up and drifting in and out of consciousness. Being an engineer, I asked many questions until the cardiologist politely asked me to keep quiet. It turns out the procedure was turning out to be of a more complicated nature than usual. There is another approach gaining in popularity in the United States called Transradial Coronary Intervention, where the cardiologist enters the heart through the transradial artery via a hole made in the patient’s hand.
My left anterior descending artery (LAD) had an 85% lesion proximally, but was 100% blocked at the first septal perforator (septals are arteries that perforate the heart at 90 degrees off the LAD). The distal LAD was barely visible. Another proximal diagonal 3mm in diameter was 70%-75% blocked. My circumflex artery gave off mid and posterior marginals (diagonal arteries off the circumflex artery) with a 40% proximal lesion in the mid-marginal. My right coronary artery had a 40% discrete mid lesion and gave of a PDA (posterior descending artery) and LV branch and then collaterized with the LAD, but poorly. That one word – collaterized – was the difference between life and death. You may not know it, but the heart has its own bypass mechanism. If a blockage occurs slowly enough and worsens over time, the heart will grow new arteries to bypass the blockage. These new arteries are called collaterals. The process is angiogenesis. It is good for heart disease, but bad for cancer. On the heart disease front, doctors are working on new ways of encouraging the growth of collaterals. One of these – EECP – uses blood pressure cuffs on the legs and times their contraction and release with the heart’s rhythm. This information provided via an EKG feeds back to the blood pressure cuffs. There is also continuing research that centers on targeting the heart directly with vessel growth hormone. It seems this bypassing ability works better in humans over 50 – I guess I was lucky. On the cancer front, doctors try the reverse, by stopping angiogenesis from occurring, the cancer starves for a supply of blood necessary for the cancerous cells to survive. Doctor’s are working on ways of stopping angiogenesis for cancer patients.
It turns out during the procedure I had a second heart attack. I suffered my first heart attack sometime during the previous two weeks. I was informed later of some damage to my heart muscle (this damage eventually repaired itself within a year). I don’t recall the heart attack during the intervention, but do remember hearing the doctor calling for intracoronary nitroglycerin and adrenaline. By the end of the lengthy procedure I had five Cypher drug eluting stents in my LAD from the proximal lesion all the way to the apex (bottom tip) of the heart. The Cypher stent elutes a drug which is an immunosuppressant. The purpose of this drug is to slow down the scarring process and retard in-stent restenosis, where the scarring can reach such a level that it re-occludes the artery. It was 5/9/06 and I was scheduled to come back on 5/30/06 – the second procedure delay due to the use of 550cc of contrast. Further contrast could damage my kidneys.
After the intervention, I began a regimen of Plavix and aspirin (81 mg) and told I would probably be on Plavix for life. My cardiologist also said I had diffuse disease in all of my arteries – 40% blockages in most of them. However, a silver lining does exist. It seems that is possible to reverse plaque buildup by lowering your total cholesterol below 100. One can see that study here.
Here are the before and after shots of my first angiogram and PCI.
See that small artery stretching down from the blockage point? It’s new and probably what saved my life.
On 5/30/06 I returned for the second time. For this procedure, the cardiologist used and IVUS (intravenous ultrasound) catheter, allowing for a better picture of what is going on. Three Cypher stents opened the conduit from the proximal to mid distal right prior to the PDA. The IVUS showed the stents where not fully apposed (positioned correctly – a benefit of using IVUS vs. standard angiography), which lead to additional balloon dilation. The vessel was 85% blocked at its worst site with diffuse plaquing throughout the rest of the artery.
I went home, waited two weeks and then started exercising like my life depended on it – and it did. It would be almost a year and three stress tests later before the real nightmare began. I already had 8 stents and thought I was doing well. When I got the call I had failed my last stress test I remember the sinking feeling in my stomach and the look on my wife’s face. I thought I had beaten this uninvited guest. I was wrong.
On 7/3/2007 I went to the emergency room with chest pain. This procedure was also split in two, but this time I did not leave the hospital between the two interventions. On day one two Cypher stents addressed a 95% lesion in the mid and mid to distal right coronary artery.
On the second day I had one Cypher stent placed in the LAD where the blockage was 75% in the mid section, one in a diagonal off the LAD with 85% long lesion, and another placed in the LAD because of plaque movement from the diagonal. I also required a JoStent to address a very large aneurysm in my LAD that was just about to burst. I had survived to fight another day, but at a price. During the first procedure on 7/3/07, while doped up to the hilt on morphine, the interventionist asked me if I wanted bypass or stenting. I, of course, preferred stenting. Who wants to have their chest cracked open? I was unaware of the minimally invasive bypass surgical procedures that were available and it was only later that I learned the consequences of the decision to stent. My LAD was now fully stented – stem to stern – a full-metal jacket in the jargon of the interventionist. I could never have bypass surgery done on my LAD without a risky procedure to remove the stents – something even worse than a standard CABG (coronary artery bypass graft surgery).
At first, I was understandably upset about this turn of events. It is one reason I have started this blog – to inform patients, to intimately involve them in any decision that will affect their current or future health. The patient’s role takes on the form of a personal advocacy. My cardiologist is known to be aggressive in the use of stents and he did save my life. He is also well respected in the cardiology community and across multiple disciplines in the medical field. From my endocrinologist, to my urologist, to my family doctor, and all the other patients I come across in his practice, the word is this guy is top-notch. Also, he places thousands of stents a year and practices as a patient advocate (he has a law degree, electrical engineering degree, and is an M.D.).
Can I blame my cardiologist for not informing me while I was in a sober state at a date before my second intervention about the potential for a full-metal jacket? Perhaps. But I prefer a more positive approach and attempted to understand what I could do to assist others in understanding their own condition and what factors contributed to my current dilemma with a fully jacketed LAD.
Let us look closely at the culture of the M.D. From the moment they enter medical school, through residency, additional education for specialized fields and on to their practices, the are subject to a strong study and work ethic unseen by many of their patients. Dealing with hundreds of patients, insurance, running a business, and dealing with hospital administration, it does not surprise me that often a lack of communication between doctor and patient can occur concerning some aspect of their care. A good doctor will minimize this, but nothing is perfect. That is why it is up to you – the patient – to become as educated as possible about your own disease so the correct questions and subsequent answers mitigate the effects of what is left unsaid as much as what is said. You are part of the staff responsible for your own care. Doctors are human beings. They are not perfect. They can make mistakes and it is often due to overwork and stress. I feel it is my responsibility to assist my doctor to ensure that all bases are covered. That way, we both benefit.
My stent count was now 14. The IVUS also indicated luminal plaquing in some of my old LAD stents of 20%-30%.
Here are the reports for the procedures mentioned above:
Now the roller coaster ride began. It was during the next five (yes, I said five) procedures (8/3/2007, 2/26/2008, 2/27/2008, 3/25/2008, and 7/16/2008) that my stent count grew to 25. I have a mixture of Cypher and Endeavor DES stents (some are stents within stents), and a JoStent covered stent to address my LAD aneurysm. Following are the reports from these procedures. My next stress test is in early December 2008. Here is hoping that I am finally done with stents.
Shortly after my last intervention, my cardiologist ordered a new test – called a TEG test. The purpose of this test is to judge the effectiveness of Plavix on platelet inhibition. Below is one page from the test with the conclusion that “There is 20% platelet inhibition”. The rest of that paragraph states that 75mg of Plavix offered no clinically significant platelet inhibition. One of the most important uses of Plavix is to prevent in-stent thrombosis, which can occur soon up to many years after the intervention – often with deadly consequences. I will be talking a great deal more about this in the blog, but it is this late in-stent thrombosis which has become the drug eluting stent’s Achilles’ heal – although the rate of occurrence is small and considered acceptable. It is controlled mostly with dual antiplatelet therapy, both aspirin and Plavix. Because of the lack of platelet inhibition on 75mg of Plavix, my dose increased to 150mg/day. The second page below is from a TEG test performed about 1 month after starting the 150mg/day Plavix regimen. Note the platelet inhibition is 82.2%, which is right around where it should be.
Below is my latest lab work. Note the VAP cholesterol test (a non-fasting cholesterol screening). Total LDLs of 33, with a total cholesterol of 99. As most of my heart’s arteries are diffusely blocked with soft plaque (not calcified), these numbers are good news as I may be at the point where reversal of plaque buildup may be occurring. Finally, some good news! Also note the low C-reactive protein number (high sensitivity CRP) of .5. CRP is a measure of inflammation and many cardiologists now consider inflammation to play a key role in the development and progression of heart disease.
Now for a little more of my background. Since the age of 24 I have suffered three major clinical depressions – each of which can contribute to the advancement of heart disease. After moving to Austin, I was blessed to find a psychiatrist who correctly labeled my affliction as an unstable mood disorder and stopped the antidepressants and initiated clonazepam – a mood stabilizer. I have never felt better mentally. I also suffered a major physical collapse in 2002 after trying an ACE inhibitor for blood pressure control. I did not recover for 4 months. I did smoke for about 10 years and quit about 6 months ago – this time for good. I exercise almost every day and have my own little pharmacy of pills:
Plavix (150 mg/day) – Now Effient (10mg/day)
Aspirin (325 mg/day) – Now 80mg/day
Norvasc (5mg twice/day for blood pressure)
Testim 1% gel (Hypogonadism) – 10g/day (equivalent to 10mg of testosterone)
Tricor (145mg/day for Triglyceride control)
Crestor (20mg/day for cholesterol) – now 10mg/day
Clonazepam (1mg 5 times/day for mood stabilization)
During all of this – adventure as I like to call it – I became as educated on the subject matter of heart disease and heart disease treatments as possible. During my own research, I visited many interesting sites and I list them in the right side bar of my blog (www.lumponablog.com). I also learned a great deal. For example, I was unaware that minimally invasive heart bypass techniques were available and that some hospitals (which I found are on my insurance) can perform multiple bypasses using a DaVinci robot and require around six small holes for the instruments to be guided into the chest cavity. There are also minimally invasive procedures done on a beating heart. I also learned that diffuse three vessel disease such as mine is better treated with bypass surgery. My first PCI aside (I was having a heart attack), had I known this information, I might have chosen a different path. When I asked my cardiologist about the mortality rate of CABG surgery, I was told it was around 1-2%. Turns out this is true as a national average, but individual hospitals often beat this rate and can be as low as .2%. It is my intent to provide readers of this blog as much information about the support groups, informative sites, and developments related to heart disease as possible. It is also my intent to use this blog to lobby local, regional, and ultimately national hospitals to allow every patient access to a non-PCI and nonsurgical cardiologist to act in the patient’s best interest. This provides each patient with access to both cardiac surgeons and interventionists, enabling the patient to make an informed decision concerning their treatment. I intend on using my experience and knowledge to ensure that you or a loved one is best enabled to take part in the decision making process. I intend to cover as many types of heart disease as possible, not limit myself to atherosclerosis. My wife’s father died at age 52 of cardiomyopathy due to a heart virus. Heart disease includes valve issues, problems with rhythm, enlarged hearts; the list is long.
Ah, youth – wasted on the young, missed by the old. I am not sure the etymology of the phrase: “You are only immortal, for a limited time”, but I first heard these words in a song titled Dreamline, from my favorite band, Rush. The meaning to me now is more obvious than ever. In my younger days, my entire life stretched in front of me much like the vanishing point in a perspective drawing, or that point on the horizon where the sky meets the earth. I knew that one day I would reach that point, but existentially it still felt like there would just be some other distant vanishing point magically appearing, and so on, ad infinitum.
At some point each of us faces our own mortality. I am not talking about the intellectual obviousness that we will all die one day, but that knowledge felt in your bones that you’re on borrowed time. Even after the death of my mother, the fact of my own transience escaped my immediate notice. Somehow, somewhere, I just felt immortal.
I can only look on these recent developments as a blessing in their own right. Before and after the surgery, I prayed regularly. I prayed for a job outside Houston; it happened. I prayed my wife and I would find a wonderful house to live in; we did.
I credit my beautiful and wonderful wife, her mother and stepfather (who is an associate pastor) for bringing me into the light of God and Jesus Christ. It has been a wild and wonderful ride from Atheism, to Agnosticism, to Buddhism, Zen, and finally Christianity. I hope to share that journey with you on this blog as well as present the latest information on heart disease, its causes, treatment, and prevention.
It is good to still be among you, and I cherish every breath and every moment I am allotted on this earth. What will happen to me as time passes – who knows? But let’s take the journey of discovery together.
If you wish to comment on this story, you may do so here. To your health!
Still alive and kicking,