Our Story
The Diagnosis
In November 2010 my precious daughter, Ellen, was seventeen years old and she was the image of good health. She ate well and exercised three to five times a week. Even more amazing was the fact that she was kicking butt on the Tae Kwon Do floor as she proudly wore her first degree black belt.
But, one day she came to me and announced: “I feel like I could go to bed and sleep for days”.
I knew something was not right.
I promptly took her to a doctor. The doctor was shocked when she tried to listen to Ellen’s heart! She immediately hooked her up to an EKG machine. Her heart was beating at 180 beats per minute. The average for her age is about 60 beats per minute.
Ellen was sent to a Pediatric Cardiologist who then took her to the emergency room. While there they attempted five different techniques to bring the heartrate down but to no avail. She was then transferred by ambulance to a larger hospital where she spent ten days in Pediatric Intensive Care.
Then came the diagnosis: Hypertrophic Cardiomyopathy or HCM
I soon learned that Ellen's heart disease was extremely complex. The disease affects the heart muscle. It causes a thickening of the heart muscle, left ventricular stiffness, mitral valve changes and cellular changes. I did not realize our hearts have an electrical system but, HCM can cause the electrical “firing” of the heart to be very chaotic.
The Symptoms
In Ellen’s case, the left ventricle was thickened thereby making it difficult for blood to flow efficiently in and out of the heart chamber to accommodate the other organs. Over time she experienced just about all of the symptoms that are typical of this debilitating disease. These included sudden cardiac arrest, congestive heart failure, shortness of breath, fatigue, fainting and heart palpitations. She ended up having atrial fibrillation (a-fib) one hundred percent of the time.
The doctors informed us there was a strong possibility that Ellen would have to have a heart transplant within a few years. This was devastating news for our family!
And so, just like that, the battle began.
D-Ribose Therapy
In the beginning I discovered an Orthomolecular Therapist from the Netherlands. The most beneficial product she introduced to us was D-Ribose. This is a white powder that provides energy to the muscles (the heart being the largest muscle in the body) thereby improving the energy levels and abating shortness of breath. This was extremely useful during times of physical exertion when an increased amount of energy is required. I recommend Bulk Supplements Pure D-Ribose Powder (500 grams) or Now Foods D-Ribose 750mg, Veg-capsules Bio energy, 120 count or Now Foods D-Ribose 1500 mg chewable tablets, 90 count. It is quite normal for a heart failure patient to use 15-20 grams per day.
Genetic Testing
Early in 2012 we sought a second opinion from the Mayo Clinic. The Mayo Clinic evaluation included genetic testing. The geneticist told us that Ellen’s particular mutation had not yet been discovered and that we should try again in a few years. The testing was beneficial from the aspect of being able to rule out numerous genetic disorders and diseases. These were no longer a concern. Upon leaving the Mayo Clinic we were encouraged to continue with the previous therapies.
Magnesium Therapy
As the arrhythmias worsened, my research brought me to a doctor in Hawaii. She wrote a book about increasing your level of magnesium. It was called The Magnesium Miracle by Dr. Carolyn Dean. The book focused on the fact that magnesium is a mineral needed by every cell in the body. It is responsible for over 300 biochemical reactions. A sufficient amount of magnesium helps the bones remain strong, promotes normal muscle and nerve function and helps to maintain a steady heart rhythm.
The majority of magnesium is found in the tissues, organs and bones with the highest concentrations being in the heart and brain cells. This explains why a magnesium deficiency would affect the heart (as in arrhythmias) and the brain (as in anxiety and depression). Only one percent of magnesium stores are found in the blood. When your doctor checks your blood (serum) magnesium levels, you are not getting a clear picture of the magnesium in your tissues, organs and bones.
A solution to this is to request an RBC (red blood cell) magnesium test through your doctor so you get a true picture of the magnesium level in your body. Just remember the amount of magnesium in the blood does not correlate with the amount of magnesium in the rest of your body. A blood (serum) magnesium test can come back “normal” when, in fact, the rest of your body could be depleted of this most important mineral. Doctors are only trained to check the magnesium in the blood. If you find yourself frustrated trying to convince doctors to cooperate with you regarding the RBC magnesium test, checkout RequestATest. They are the national leader in affordable, direct to consumer lab testing. You print off a receipt, take it to the nearest lab (they will tell you what lab is closest) and they do the test for you – very simple.
If your RBC magnesium test is low (normal is 6.0 – 6.5) then you should begin to supplement with additional magnesium immediately. Remember, some 95% of Americans are deficient in magnesium because we do not get enough greens in our diets, the minerals (such as magnesium) are depleted where our food is grown (i.e. farm soils), and reverse osmosis drinking water is devoid of minerals!
One way of supplementing is with oral supplements. In my research I found Magnesium Orotate by Advanced Research. Look for Nci (Dr. Hans Nieper) Magnesium Orotate 500 mg (200 tablets) for the best value. It is proven to be much more bioavailable than other magnesium supplements. On the contrary, if you struggle with too many pills as my daughter did, there is transdermal magnesium which is magnesium absorbed through the skin. If you would like to read about it the book Transdermal Magnesium Therapy by Dr. Mark Sircus is very informative. The most pure magnesium I found is called Ancient Minerals Magnesium Oil (large spray bottle) or Ancient Minerals Magnesium Bath Flakes (6.5 lbs.to start). The oil can be sprayed on and rubbed all over morning and night. The bath flakes can be used in a foot bath for 30 minutes at a time 3 – 5 times a week. After 4 -8 weeks I would check the RBC magnesium levels again. You know to back off on the supplements when your bowels become very loose like diarrhea. Just remember it takes years to become deficient in this mineral so replenishing your body may take a while. Ellen always felt very calm and sleep seemed to improve with increased magnesium.
Pacemaker / Defibrillator Therapy
In February of 2012, doctors placed a one lead pacemaker in Ellen. After a short time this had to be replaced by a two-lead pacemaker with a defibrillator. Fainting and light headedness were symptoms that led up to the change. The pacemaker made the heart beat more consistent and the defibrillator restarted the heart when there was a cardiac arrest event.
Potassium Therapy
By the summer of 2013, Ellen was really struggling with the potassium chloride. This was part of the doctors’ medication regiment. She took a diuretic due to the fact that fluid continually built up in her body because her heart was not strong enough to pump it through. The diuretic led to excretion of important minerals like potassium. Low potassium can cause many electrolyte imbalances and arrhythmias. The big problem was that the potassium chloride nauseated Ellen and it was difficult to keep it down. Along with the potassium chloride the blood thinner would also come up. There is more on potassium therapy in a section below.
Blood Clot, Stroke, and Feeding Tube
On November 10, 2013 Ellen threw a clot and had an ischemic stroke. This happens when a blood vessel supplying blood to an area of the brain becomes blocked by a blood clot. Her arms and legs were twitching and she grunted, unable to talk. When we tried to get her out of bed we realized her right leg and arm were not working. It was a nightmare of the worst kind! The enemy just tripled his army and the battle raged on.
The stroke presented a new set of challenges. Ellen’s right side was paralyzed. She had to wear a brace on her arm and leg at night and one on her leg all day in order to walk. She preferred holding on to my arm as opposed to using a cane. From then on she would also use a wheel chair to go places. For the balance of her illness she could not use her right arm and her right leg had very limited movement. She was gradually able to talk and her full smile eventually returned which we were so thankful for. Her smile defined her. Some additional issues that were complicated by stroke included using and maintaining a feeding tube, numerous urinary tract infections and bowels that did not move efficiently.
The feeding tube (g-tube) went straight into her stomach. There is also a j-tube which by- passes the stomach. The g-tube presented multiple problems in itself. A daily challenge was making sure it did not get clogged and keeping it clean to avoid infection. One product that helped with the cleanliness was MesoSilver. This is a colloidal silver, the benefits of which are many. It kills every known pathogen including bacteria, fungi, viruses and parasites. An exact diagnosis of a condition or disease is not necessary for self-treatment. It does not kill the beneficial bacteria in the gut. It does not allow pathogens to develop an immunity to it and it has no undesirable side effects. You cannot overdose on it. It has a strong healing quality and it heals without scarring. Lastly, you can use it orally (tastes like water) or topically. MesoSilver is a natural mineral supplement in the form of nanoparticle colloidal silver. Eighty percent of it is actually silver particles making it a true colloidal silver verses ionic silver. If you ingest large amounts of ionic silver with a silver concentration of 100 ppm (parts per million) and above, it can cause a permanent blue discoloration of the skin. For the greatest effectiveness, you want to look for a product that has most of the silver content in the form of nanoparticles, not ions. I did the research. The MesoSilver helped fight infection and kept the entry of the feeding tube clean and healthy. The doctors were always amazed at how good it looked, even after a year and a half (two to three months is a typical length of time to have a feeding tube). Go to the Purest Colloids web site to read more. It comes in liquid, spray or gel form.
In order to keep the feeding tube from clogging and to drastically increase the nutrients provided to Ellen, I chose a feeding tube formula called Liquid Hope produced by a company called Functional Formularies. Liquid Hope is a whole food based formula that is organic and nutrient dense. It contains numerous plant-based phytonutrients along with high quality protein. I loved the fact that there were no added sugars or even fruit which made it appropriate for cancer patients who must avoid these things. Compare this to high fructose corn syrups and highly processed ingredients (not even real food) found in formulas that hospitals recommend. They always allowed me to use my formula in rehab and the hospitals (there were eight all together). You have to be your own advocate and insist on it. I truly believe this formula contributed to her longer than expected life span. Liquid Hope is currently covered by Medicaid / Medicare and may be covered by your insurance when accompanied by a letter of medical necessity from your doctor.
The urinary tract infections were brought on by the lack of mobility. There were about five of them. Because the rest of her body was so compromised, one of these infections could land her in the hospital. I finally discovered CranRich Super Strength Cranberry Concentrate: we did one capsule (500mg) morning and night and we never had another urinary tract infection.
The bowels not moving efficiently also had to do with immobility. When the digestive system became backed up, it was very painful. One thing that really helped was a product called MagO7. It is the ultimate oxygenating digestive system cleanser. MagO7 is an oxygen delivery mechanism meant for colon cleansing and general colon health. It is not intended to be used as a magnesium supplement. MagO7 is very beneficial when a person is immobile and things tend to get backed up as with a stroke/heart patient. Look for Aerobic Life MagO7 Oxygen Digestive System Cleanser in powder or capsules.
Rehabilitation, Supplements, Potassium
After two weeks in intensive care Ellen was released to full time rehabilitation. This lasted about seven weeks and was utterly exhausting for her because of the heart problems. While there we tried a regimen of supplements recommended by a popular Integrative Cardiologist. The idea was great but not realistic for someone with congestive heart failure. Every ounce of liquid was accounted for and swallowing all those pills put her on fluid overload which occurs when the circulating volume in the body is excessive or more than the heart can effectively cope with. This results in heart failure, which usually manifests as pulminary edema and peripheral edema.
Soon after the stroke occurred the realization hit me that the potassium chloride caused the stroke. Her body needed it because the diuretic got rid of it but, her stomach could not tolerate it. Due to constant nausea and vomiting, the blood thinner did not stay in her system long enough to protect her from blood clots. I began to search for an alternative to potassium chloride since this was all the doctors had to offer. It was a pleasant surprise to come across a product called potassium orotate. The book The Curious Man, The Life and Works of Dr. Hans Nieper was very informative. Dr. Nieper along with Dr. Franz Kohler discovered the orotates. During their extensive research, they found that the orotates pass through the cell’s double layered outer membrane and are decomposed for utilization by the inner components of the cell. Potassium orotate is the most effective potassium transporter to the cell.
We gradually replaced the potassium chloride with potassium orotate. I recommend potassium orotate from Advanced Research by Dr. Hans Nieper which is available in 175 mg capsules and 200 veggie caps per bottle. This would require less pills to be opened and remember these are very bioavailable. The capsules can be divided up during the day and taken by mouth, opened and put in a smoothie or, as we did, poured into the feeding tube along with the food. When you are switching over make sure to have potassium levels checked often so you can maintain the appropriate levels. This works very well as long as the potassium requirements are reasonable. As more potassium is required, as is the case with heart failure, it is not humanly possible to open that many capsules in a day. We reached as much as 150 capsules in a day. I was thankful we could make this potassium work as long as we did. I realize this sounds like a lot of work, but you will do anything for your child when you see them nauseated and throwing up as often as I did. There was never a problem with the stomach and potassium orotate. I found a potassium ion meter from Horiba that allows you to monitor your potassium levels at home. I chose to do this because going to the lab to run the test became exhausting. The meter is called the B-731 LAQUA Twin Compact Potassium Ion Meter.
Hydrogen Peroxide Therapy
Two other products that seemed to bring relief during the time following the stroke were Food Grade Hydrogen Peroxide and essential oils.
I discovered Food Grade Hydrogen Peroxide by reading the book The One-Minute Cure by Madison Cavanaugh. A very easy read, she describes how to use food grade hydrogen peroxide as a therapy which kills viruses and other pathogens by oxidation. Not only does it kill diseased cells, it also revitalizes the healthy cells. With Ellen I used the inhalation method which is described in the book. It consists of placing the food grade hydrogen peroxide in water in a vaporizer or humidifier that runs all night at the bedside. This gave relief for breathing issues or shortness of breath. The product I use is One Minute Cure: 35% Food Grade Hydrogen Peroxide. A second book regarding oxygen therapy that I find to be very interesting is Anti-Inflammatory Oxygen Therapy – Your Complete Guide to Understanding and Using Natural Oxygen Therapy by Dr. Mark Sircus. I came across this book in the last few months. I always wondered if more intense oxygen therapy would have been helpful. He has a different approach to getting oxygen in the cells. He addresses many important topics about your health and the health of your oxygen deprived cells.
Essential Oils
The use of two essential oils in particular provided relief from breathing issues and digestive issues. The company I chose was doTERRA. Their essential oils do not contain contaminants, pesticides, chemical residues or artificial ingredients. These naturally occurring essential oils are found in the seeds, bark, stems, roots, flowers and other parts of the plant. For relief from breathing issues "Breathe" is the chosen essential oil. It is proven to alleviate respiratory discomfort and cleanse and soothe the airways. It has a pleasant aroma calming to the senses and is perfect for nighttime diffusion allowing for a restful sleep. We used a few drops in a diffuser next to the bed. DoTERRA sells the diffuser but you can also get them at places like the Vitamin Shoppe. For relief from digestive issues (which we had a lot of) "DigestZen" is the chosen essential oil. It provides soothing digestive relief, aids in the digestion of foods and maintains a healthy gastrointestinal tract. We applied directly on the stomach area and the bottom of the feet which addresses the stomach.
Electric Arm Brace and CIMT Therapy
My goal was to get Ellen's heart better, or get a heart transplant first and then deal with the stroke issues. I jumped ahead with researching - what could help with her paralysis? One thing I came across that was worth mentioning was the MyoPro. It is a Myoelectric Arm Orthosis made for individuals with stroke, MS, ALS, brain and spinal cord injury and other neuromuscular disorders. This arm brace is designed to enable individuals to self-initiate and control movement of a partially paralyzed arm using their own muscle signals. It uses simple surface EMG sensing technology. When the user tries to bend the arm, sensors in the brace detect the weak muscle signal, which activates the motor to move the arm in the desired direction. With the brace, a paralyzed individual can perform activities of daily living including feeding, reaching and lifting. It has been cleared by the FDA since 2007 and has been used to assist in the home since 2010.
A second intervention that I discovered was a type of therapy called Constraint-Induced Movement Therapy or CIMT. This type of therapy teaches the brain to “rewire” itself following a major injury such as subacute and chronic stroke, acquired brain injury, traumatic brain injury and multiple sclerosis. Research carried out by Edward Taub, Ph.D. and collaborators at the University of Alabama at Birmingham has shown that patients can “learn” to improve the motor ability of the more- affected parts of their bodies and thus cease to rely exclusively or primarily on the less-affected parts. This treatment has significantly improved the quality of movement and substantially increased the amount of use of a more-affected extremity in the activities of daily living for a large number of patients. I was in the process of searching for a therapist closer to home trained in CIMT. I also purchased a textbook called the Handbook of Pediatric Constraint-Induced Movement Therapy (CIMT) A Guide for Occupational Therapy and Health Care Clinicians, Researchers and Educators. I thought I might do the training myself. For additional information about CIMT, you can visit the CI Research Group webpage at the University of Alabama at Birmingham website.
Stem Cell Therapy
Ellen had her stroke in November 2013. By January of 2014 Ellen, her dad and I were scheduled to get on a plane bound for Argentina so she could have stem cell therapy administered to her heart and brain. Since the cost of stem cell therapy ranges from $15,000 to $40, 000, this would have been financially impossible for us without a grandfather’s and a church's extreme love and generosity. This was a huge undertaking both financially and physically. On a positive note, the results she experienced were a drastic reduction in shortness of breath episodes. From the moment she returned from stem cell surgery she could lay flat and breathe easy. I am not recommending that everyone run out to another country and get stem cells. In fact, since our experience I found out about a U.S. based doctor who is extremely knowledgeable and trustworthy. His name is Dr. David Steenblock and he is part of the group Personalized Regenerative Medicine. This group consists of highly experienced and innovative medical professionals who dedicate themselves to giving the very best care possible. Their specialty is with the treatment of patients struggling with a wide range of chronic degenerative diseases and medical conditions. They take a variety of adult (non-embryonic) stem cells harvested from disease-screened umbilical cord blood and placenta, the amnion, plus a patients’ own bone marrow and fat tissues then administer these in ways that will best insure they will reach the diseased tissues. They are located in San Clemente, California. Insurance does not cover stem cell therapy because it is not currently approved by the FDA in the United States. You should also know that stem cell therapy is not a cure all. It definitely relieves some of the annoying symptoms but it lasts about 8-10 months then will need to be repeated. If it were FDA approved, the therapy could be administered on a regular basis just like any other ongoing therapy. Dr. Steenblock wrote the book Umbilical Cord Stem Cell Therapy, The Gift of Healing from Healthy Newborns. He has also written numerous scientific articles and contributes to several national consumer health magazines.
Prognosis
Before I go forward in explaining how the final days approached I want to say that not all Hypertrophic Cardiomyopathy cases are the same.
There are actually people who live with and manage the disease for many years.
There are others who are able to make it to the heart transplant and this gives them many more years of life.
Ellen’s case was unique in that the heart problem was one of the worst and most complicated that the doctors had seen. There are only 500 HCM cases diagnosed in the US per year, many of which are in adolescents. They waited too long to do the heart transplant because once she had the stroke her mobility decreased, her brain activity decreased, and her appetite drastically decreased. In order to get a heart transplant the body mass index has to be at a certain level and you have to weigh a certain amount in order for the surgery to be successful. If they are talking about a heart transplant I encourage you to do it sooner rather than later. Once again, you have to push the doctors and be your own advocate.
I share this so you can get a glimpse of the intense frustration and helplessness our family felt during the final days. When Ellen had an ongoing cough for a couple days, we realized it was different; it was more persistent. Her system also seemed to be backed up and her food intake was reduced drastically. She was sitting at the kitchen table and she began to feel tingling in her arm and hand (I thought she was having another stroke).
Then, the tingling in her arm and hand progressed to passing out! At that point I was on the phone with the 911 operators!
The ambulance came on the scene quickly and my kitchen was filled with about eight EMT’s. They secured her in the ambulance and proceeded to the nearest hospital. From the time we arrived there, it was only three weeks until she took her last breath.
The treatment started with an antibiotic for walking pneumonia. Then, her defibrillator started going off multiple times in a day. They informed us that the antibiotic can cause these episodes with the heart. But before they even allow that to get out of her system they decide they should put her on the 'big daddy' of all heart drugs (amiodarone) to see if it will control the defibrillator episodes (which is actually v-tach or ventricular tachycardia and is fatal without the defibrillator). She was on this heart drug which yes, you guessed it, has side effects of its own.
It drops the blood pressure so low that we need yet another medication to help with raising the blood pressure. At some point during this, after about one week, Ellen was transferred to the large hospital where her original doctors were located. In order to be on this medication that raises blood pressure, you have to be in ICU. There we were in ICU and for the last week to week and a half of her life, the doctor kept coming in telling my baby girl that she was going to die when the medication was taken off so when can they start weaning her!!!!????
It was horrible to say the least. I finally said “no more”! They had told her what was going to happen, just leave it alone! The most difficult thing was that Ellen was her same sweet self in between her episodes of being unconscious from the pain medication.
An hour before she passed she was eating M&M’s and drinking tea which were two things she never had due to the caffeine content. The party was on!!
A short time before she passed, knowing that her brother was in school full time, she was concerned about whether or not he had enough light to study by. That was just her, always thinking of others. Also, in her final hours she gripped my hand and said “thank you mom, for everything”. Those words held so much meaning for me. It was not just thank you for being my caregiver the past five years. It was thank you for giving birth to me, for helping me through my learning disability using any therapy you could get your hands on. For taking me from not reading to reading like gang busters! It was thank you for instilling in me moral values and strong spiritual convictions and for introducing me to Jesus who became my Savior and Lord of my life. For showing me the importance of community and a church family which were our support and our strength over many, many years. Thank you for making our family top priority and for allowing me the wonderful opportunity to know and love my grandparents who are far away along with my aunts, uncles and cousins. Thank you for teaching me from first grade through high school and for always being my number one cheerleader in accomplishments like obtaining a black belt in Tae Kwon Do and completing my college program with all A’s and B’s. Thank you, mom, for literally going to the ends of the earth and beyond to try and find something, anything to make my heart better. The battle was long and hard and I thank you for your endurance. Lastly, I thank you for being my best friend and my confidant, continually there for me in the highs and lows, in the good times and bad. Always with a love that was unwavering and true. Oh, that those four words “thank you for everything” could encompass so much, but they did, and I am thankful.