DCM/CHF…wth???

I wrote this in 2007 on another blog several years ago and wanted to share it with my new friends here:

I’ve been pondering what I would say in this blog for weeks now…I have always said that I’m an “open book”, but I find that sometimes I have a “hard cover”! LOL…so, in response to many questions and for those that actually read the blogs, I’d like to share something very personal that is happening in my life…many friends that I consider “family” are aware of my condition and I thank them for their patience with me and their love! I love you guys!!!

So, having said that, get yourself some coffee and get a comfy chair!…let me start at the beginning…and this is the LONG version! LOL!!! I worked corporate for ten years as the right hand to the owner of a very successful family owned insurance company. This company was, I considered, my first “real” job. I was hired in 1986 as a data entry clerk and quickly worked my way up to Administrative Assistant…really, I wore many hats, and if you’ve read my profile then you know that I am the epitome of the word “workaholic”. I learned so much from the man that ran the show. He was not only the owner, my boss, but also my friend. On my ninth year anniversary with the company, he passed away at the age of 67 from an acute myocardial infarction…yup, a massive heart attack! It really hit home for me, and I grieved the death of this man, for years, because I considered him family. We had a very close relationship and our connection was incredible.

Six months later, in the fall of 1995, at the age of 30, I became ill. I remember the stress that filled the air those last six months, as everyone was still trying to adjust to the fact that the boss had died. I had symptoms during those six months, that now, looking back, were so obvious! I had swelling in my hands, legs and feet, shortness of breath and fatigue. They say hindsight is twenty-twenty…it’s so true! I visited a doctor near work that told me that perhaps I was pregnant (just like a man!) and then proceeded to say that it was “my imagination”…oh I left that place really hot! And I mean PISSED OFF HOT! LOL…I left so angry, and disappointed that I had no answers to what was going on with me. Still I was persistent and made an appointment with my primary doctor that same day.

When I went to see my family doctor to find out what was going on, he diagnosed me with walking pneumonia. I had not missed work in almost three years and figured I must be at my “burnout” point (type A personality, remember?). I was sent home with antibiotics for seven days. After that week passed, I didn’t feel any improvement and called the nurse to see what I should do next. I was told to take another three days of meds and to return after that…I am a very good patient, despite my control issues! LOL…so I did what they told me and returned after the three days, worse than before. I was sent home, once again, with more medicine and a trip to the hospital for further testing.

All the while, days are passing and I’m home alone from work, unable to sleep lying down…I was sleeping propped up with pillows completely upright in my bed, because I couldn’t breathe if I laid down…and, of course, assumed that it would be over soon…after all it was only walking pneumonia! After almost a month at home with tests and doctors’ appointments I started having, what I thought, were “asthma attacks” (technically they are cardiac asthma attacks brought on by the stress the heart is suffering from not being able to squeeze properly).

I remember that it was holiday time and I had gotten my nails done, before acrylic nails were a big thing, in a really kewl black and white checker-board pattern the day before Thanksgiving!!! (LOL) ~ Thanksgiving, no less! ~ I decided I couldn’t go through another night with “asthma”…I felt bad enough to go to the emergency room! I had only eaten oatmeal during that month…oatmeal for breakfast, oatmeal for lunch, oatmeal for dinner! I shuffled from my bedroom…shuffled to the kitchen…shuffled to the bathroom, then shuffled back to my bedroom. My little farmhouse was only 1300 square feet, but it felt like 13,000 square feet…I was alone, tired and short of breath. I was recently divorced and had made a huge decision to get on with my life…I had just started seeing my current hubby (Joe)…and all I could think about was FOOD! FOOD!! FOOD!!! (remember I had been eating oatmeal for a month!)

I always laugh when I tell this part of the story…I asked Joe to take me to the emergency room, but to make a short stop on the way…ROTFLMAO! I wanted to EAT!!! So, off we went to Schlotzsky’s! Oh my God…am I crazy!!? That was THE BEST sandwich!!! Looking back, it was like my “last meal”…needless to say, I didn’t enjoy it for very long. Upon arriving at the emergency room, I lost my cookies…or rather my sandwich! It was not a pretty sight and to top it off, there was blood! Yeah, imagine my face when I saw that! Damn, my “last meal” with blood!!! I knew for sure that there was something wrong!!! I thought I was going to die! By the way, that’s a creepy feeling.

They ran the basic tests and promptly admitted me. This was the first of seven days…I had every test known to man run on me! Just because I was born in a third world country!!! C’mon!!! LOL…the doctors could not figure out what was wrong with me. The first diagnosis came back as an upper digestive problem…I did lose my sandwich upon arrival and there WAS blood! They rolled me into the operating room to perform a gastro-something-or-other to find out what the heck was going on. Results came back showing NOTHING! No ulcer…nothing! Back I went to my room. I was tested for blood disorders, immuno deficiency diseases, you name it…they did it!

Finally, my mother (whom worked at the hospital), called on her doctor friend, a pulmonologist, to check me out. He did…and guess what!? He found the problem…he listened carefully to my heart and asked if anyone had ever told me that I had a heart murmur. I told him that I was aware of it. He immediately had an echocardiogram ordered to see for himself…well, there it was! My HUGE heart, barely pumping…barely squeezing blood!!! This was much more serious than a heart murmur! I was diagnosed with congestive heart failure (CHF) brought on by dilated cardiomyopathy ((DCM) an enlarged heart). That night a cardiologist was assigned to me. The cardiologist told my mother and Joe that they needed to be prepared…I would either get better and go home OR get worse and die. HELLO!!! I was gonna what? Well, they didn’t tell ME…I found out a year later when I was reading my medical records! And my prognosis was not so wonderful…survival rates for people that have suffered CHF/DCM is 2 to 3 years! Needless to say, by the grace of God, I got better and got to go home after spending a week hospitalized.

The recuperation time was so slow and tedious. I was tired all the time…obviously, unable to work! I had to leave my very cushy, well-paying, job. Couldn’t drive, wash clothes, or do any of my normal everyday things…I moved in with my mother for nearly six months while I recuperated. I felt so frustrated! It took the entire six months before I felt good enough to be alone…seriously!!! I was on heart medications from 1995 until 2004, when test results showed the ejection fraction numbers, which measure the squeeze of the heart, to be within normal range. I was taken off of the heart medications and told that my case was “resolved” and had no need to continue being treated for heart disease or conditions.

Well, here I am, again…looking back, this time, I noticed symptoms returning about a year and a half ago. They were very gradual! I know my body very very well, and when something is wrong, it speaks loud and clear. I was experiencing fatigue, became tired easily, getting poochy around my abdomen, unable to concentrate (that didn’t help with the ADHD! lol), lost my appetite and missing work…and I was the boss now! In January of 2006 I got pneumonia, then bronchitis followed in March, June and August! We closed our antiques and collectibles shop on August 12th and for the first time in a long time, I felt so relieved to be done! It was like a huge boulder was lifted from my shoulders! I loved my shop, but it was taking its toll. During this time I went from weighing 132 pounds to 115 pounds!!! I wanted to lose some weight, but not like this! LOL!

On January 16, 2007, I was admitted into the hospital for a heart catheterization to check the status of my heart since I had had surgery in December and was feeling “not so normal” since then. The results were grim. I was now in advanced heart failure due to dilated cardiomyopathy, once again! However, this time things were worse…the damage from the first bout had left signs of a battle roughly fought! Thinned heart walls, weak squeeze and the ejection fraction was 13% ~ it was 25% the first time! A “normal” heart squeezes at 55% or better!

During this procedure I was found to have a serious variety of arrhythmia known as fibrillation. “The muscle cells of the heart normally function together, creating a single contraction when stimulated. Fibrillation occurs when the heart muscle begins a quivering motion due to a disunity in contractile cell function. Fibrillation can affect the atrium (atrial fibrillation) or the ventricle (ventricular fibrillation); ventricular fibrillation is imminently life-threatening.” And of course, I HAD VENTRICULAR FIBRILLATION!

“When ventricular fibrillation occurs in the ventricles (lower chambers) of the heart; it is always a medical emergency. If left untreated, ventricular fibrillation (VF, or V-fib) can lead to death within minutes. When a heart goes into V-fib, effective pumping of the blood stops. V-fib is considered a form of cardiac arrest, and an individual suffering from it will not survive unless cardiopulmonary resuscitation (CPR) and defibrillation are provided immediately.” The cardiologists decided the best thing to do was to install an ICD (implantable cardioverter-defibrillator), since I was at high risk for sudden death…although the 2007 model is what I got, and is a combination defibrillator and pacemaker. Now, I was feeling like I was going to become part of the “Borg”!!! LMAO! It is my “personal paramedic”!

They recommended that I be interviewed and qualified for a heart transplant immediately! So, since January 19th, I took tests, was probed, checked and re-checked to have the opportunity to receive a heart in case I relapsed. I am currently being treated aggressively with the most current medications on the market and am responding quite well. I will have to share some of my fotos.

I wanted to share this with you, because so many have asked why I’m not around for long periods of time or for days on end…well, now you know. I have good days and bad days…I have happy days most of the time, but am now experiencing sad and angry days. I’m trying to cope as best I can with the resources I have…I’m not angry at God or want to place blame anywhere…I am angry at my body! I feel betrayed. I have always been so conscious of my eating habits (vegetarian for over 30 years) and am very active…exercise, water and sex! LMAO!!! I have met so many wonderful people that have shared their stories with me and feel blessed that we have crossed paths. THANK YOU for being such great friends! I LOVE YOU! MMMwwuah!!!

THE DIAGNOSIS, PROGNOSIS & TREATMENT

I was diagnosed with CHF/DCM, congestive heart failure brought on by dilated cardiomyopathy. In order to understand what is going on you need to know what this means.

“Dilated cardiomyopathy or DCM or congestive cardiomyopathy is a condition in which the heart becomes weakened, the left and/or right ventricular systolic pump function of the heart is impaired, leading to progressive cardiac enlargement and unable to pump blood efficiently. The decreased heart function can affect the lungs, liver, and other body systems. DCM is a disease of the myocardium (the muscle of the heart) in which a portion of the myocardium is dilated/enlarged, often without any obvious cause. About one in three cases of congestive heart failure (CHF) is due to dilated cardiomyopathy.

People with cardiomyopathy are often at risk of arrhythmia and/or sudden cardiac death. Dilated cardiomyopathy is the most common form of cardiomyopathy and one of the leading indications for heart transplantation. DCM occurs more frequently in men than in women, and is most common between the ages of 20 and 60 years. DCM also occurs in children..

In English that means, that the heart muscle becomes weakened, because as is my case, the left ventricular pump function (the squeeze) is impaired ~ and no, they don’t know what causes this impairment ~ making the heart “grow” in size, thus unable to pump blood efficiently. The pericardium, is a double-walled sac that contains the heart and the roots of the great vessels, fills with fluid causing congestion. The heart is where the blood is “oxygenated”, that’s why other organs, such as the lungs, brain (memory) and liver, are affected in this delicate scenario.

The “cause”, or etiology, in my case, is unknown. “For many affected individuals, dilated cardiomyopathy is a condition which will not limit the quality or duration of life. A minority, however, experience significant symptoms and there is sometimes a risk of sudden death. Evaluation by a cardiologist is recommended to confirm the diagnosis and to assess the outlook and particularly the risk of complications. In some patients symptoms of left- and right-sided congestive heart failure develop gradually. Left untreated ventricular dilatation may be present for months or even years before the patient becomes symptomatic.

Generalized enlargement of the heart is seen upon normal chest X-ray. The electrocardiogram often shows sinus tachycardia or atrial fibrillation, ventricular arrhythmias, left atrial abnormality, and sometimes intraventricual conduction defects and low voltage. Echocardiogram shows left ventricular dilatation with normal or thinned walls and reduced ejection fraction. Cardiac catheterization and coronary angiography are often performed to exclude ischemic heart disease.

Years ago the statistic was that the majority of patients, particularly those over 55 years of age, died within 3 years of the onset of symptoms (stage 5 of CHF) – and such figures can still be found in some textbooks. The situation has improved dramatically in recent years with drug therapy that can slow down progression and in some cases even improve the heart condition. Death is due to either congestive heart failure or ventricular tachy- or bradyarrhythmias.

Patients are given the standard therapy for heart failure, typically including salt restriction, angiotensin-converting enzyme (ACE) inhibitors, diuretics, and digitalis. Anticoagulants may also be used. Alcohol should be avoided. Artificial pacemakers may be used in patients with intraventricular conduction delay, and implantable cardioverter-defibrillators in those at risk of arrhythmia. These forms of treatment have been shown to improve symptoms and reduce hospitalization.

In patients with advanced disease who are refractory to medical therapy, cardiac transplantation may be considered.

Treatment depends on the type of cardiomyopathy, but may include medical therapy and implanted artificial pacemakers. The goal of treatment is often symptom relief, with the underlying condition unaffected. Some patients may eventually require a heart transplant. Treatment of cardiomyopathy (and other heart diseases) using alternative methods such as stem cell therapy is commercially available but is not supported by convincing evidence.

In order for a patient to be recommended for a heart transplant they will generally have advanced, irreversible heart failure with a severely limited life expectancy. Other possible treatments, including medication, for their condition should have been considered or attempted prior to recommendation.

The progression of heart failure is associated with left ventricular remodeling, which manifests as gradual increases in left ventricular end-diastolic and end-systolic volumes, wall thinning, and a change in chamber geometry to a more spherical, less elongated shape. This process is usually associated with a continuous decline in ejection fraction.

Healthy individuals typically have ejection fractions greater than 0.55. However, normal values depend upon the modality being used to calculate the ejection fraction. Damage to the muscle of the heart (myocardium), such as that sustained during myocardial infarction or in cardiomyopathy, impairs the heart’s ability to eject blood and therefore reduces ejection fraction. This reduction in the ejection fraction can manifest itself clinically as heart failure. The ejection fraction is one of the most important predictors of prognosis; those with significantly reduced ejection fractions typically have a poorer prognosis.

Alternative treatments are promoted by some, including food supplements Coenzyme Q10, L-Carnitine, Taurine and D-Ribose, and there is some evidence for the benefits of Coenzyme Q10 in treating heart failure.The majority of doctors doubt the effectiveness of these alternative treatments, but a few complement conventional treatment by suggesting Coenzyme Q10.”

REFERENCE SOURCES:
www.wikipedia.org
www.ask.com
www.britannica.com
and, of course, all of my wonderful doctors!

JULY 26, 2007

Hi y’all! An update on the progress of my heart transplant…
Mom drove me to my appointment with the cardiologists at the transplant center in Dallas, today…we were chatty cathies all the way there! We had a good ole mommy/daughter time! In case I hadn’t shared with you…my CT Scan of July 8th came back BEAUTY-FULL and all my innerds look good (sorry took so long to update that)! As of July 12th it is officially OFFICIAL that I’m on the heart transplant list! YIPPEEE!!! I think…lol ~ I’m in “Zone 2″…there are four tiers to this…here’s how that works, and I’m explaining it in very people friendly words! LOL…:
ZONE 1A = These are the most critical folks on the list…they are more than likely in ICU with heavy duty meds waiting for transplant. That also means, they cannot do much of anything, except wait! No working…no stress…no walking…nuttin!
ZONE 1B = These folks are next to critical…some are hospitalized also waiting, some are at home waiting. Also heavy duty meds! They cannot work, but can “function” somewhat on their own or with help ~ believe me, they aren’t feeling too hot and they most certainly aren’t running any marathons! Most do not work, but you’d be amazed at the human spirit! Stress levels must be low…you can do some walking and getting around. These folks usually do not move down to Zone 2, but it IS possible! They are usually moved up to Zone 1A.
ZONE 2 = (DAT’S ME!!!) Some folks on the list decide to work…some stay home to recuperate and test out the meds to see how the heart responds before taking on any heavy duty stuff…like a jay oh bee! ~ ummm, dat means no stress! Each case is different and the doctors tell you that you can try to lead a “normal” life, however you have to know your limits! That is kinda hard to do when you’re exhausted or overwhelmed every day…like I said, it’s different for each individual. Diet, rest and meds are very important. No gaining weight…very very very low sodium, very very very low liquids and, in my case due to my diabetes, no sugar! I can’t imagine having to go through this as the “breadwinner” in the family! OMG! That would be so freagin’ stressful!!! If these folks get better with the meds, they are moved down to Zone 7, if they worsen, they are moved up to Zone 1B and so on…you get the idea!
ZONE 7?/12?/something…(sorry, can’t remember) = These folks are sick, but their hearts have responded well to the meds…think of this tier as the “inactive” people. They’re not in dire need of a transplant, but if they get worse or worsen with time, they are moved up to Zone 2, then 1B, then 1A. They are leading “normal” lives…they work, exercise, watch their diet, etc!
Having explained all that, I gotta tell you that today my jaw dropped! LMAO…I was told that a donor heart was offered to the transplant center for me, but was denied because they did not like the “quality” of heart. DO WHAT??? Yes, peeps! I’m on the list for a transplant!!! YIKES!
They screen the donor heart and match it to the most appropriate person. What does that mean? Well, they go to each list and check compatibility ~ of course they start according to priority (Zone 1A and work down)…checking compatibility of blood type, age of the heart and heart size…they try to match each heart in size and type as closely as possible…dat means, that I couldn’t receive a heart that belonged to someone that was 6’4″ or vice versa!!! And, to many people’s surprise, the heart is not for life! The “life” of one heart is averaging eight to twelve years…then you get a second transplant, then a third…and so on!! *gulp!* There are rare instances where hearts have lasted 20 years…but that is NOT the norm!
Needless to say, today was a real “wake up” call for me…AGAIN!!! I’m in shock! Maybe in denial? Yeah, I think so…*she takes a deep breath* I can’t imagine being called right at this moment and being asked “Are you ready for your new heart?”!!!
So the whole way back Mom and I were so quiet…I realized that we were both in shock! I was happy, sad and scared all at once! I can’t tell you how overwhelmed I was that I still haven’t been able to cry. I know that’s a lot for my brain…maybe if it was someone else, I wouldn’t be so darn shocked!
Ok, now you have the update! I know that many of you are praying for me and I love you for that! I know that God hears our prayers…He has answered mine so many times, and I know that I am a truly blessed individual. I have faith that I have His favor and that everything will be alright.
God bless you guys! MUAH!!!

And Scarlett O’Hara said, “After all…tomorrow is another day.”

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