20^th Anniversary of the Myocarditis Foundation

On March 5, 2005, the Myocarditis Foundation received their official IRS nonprofit approval letter. Dr. Cooper and I had been working on all the background materials for several years prior to making the application. I benefitted from Dr. Cooper’s knowledge about Giant Cell Myocarditis when my Critical Coronary Care Team from Columbia Medical Center in New York consulted Dr. Cooper regarding my case in September 2001.

I arrived at Columbia via ambulance in catastrophic heart failure and cardiogenic shock after being transferred between two other hospitals that did not know how to care for me. Dr. Cooper’s reputation in the field of cardiology was well known through his published research and speaking engagements. His specific area of interest was Giant Cell Myocarditis.

I was privileged to be met as a direct admit to CCU by Dr. Mario Deng, a relatively new member of the cardiology team who had experience with my rare diagnosis. The diagnosis of GCM was made quickly, the treatment recommended by Dr. Cooper was initiated and but by the grace of God, I survived until the transplant and beyond to this day 24 years later, so far.  I survived in large measure because Dr. Cooper’s research recommended a treatment protocol that allowed the inflammation in my heart to subside.  The treatment acted as a bridge to transplant. My gratitude for his intelligence, his gifts, his compassion, and his commitment to help patients with a diagnosis that was almost certain death.

I contacted him several weeks after I got home and said, “What can I do to thank you?” He said we needed to start a foundation, to be a resource for patients and families, to raise money for research and to educate the public about this disease. The Myocarditis Foundation was born.

To date over a million dollars has been raised and awarded to mentored scientists to study myocarditis. Our hope has always been that they would become life-long researchers.

Throughout the remainder of 2025, the Myocarditis Foundation will be celebrating this important milestone. In coming months, I will interview the founding members of Board of Directors, the Medical Advisory Board, prominent researchers, grant recipients, patients who survived and family members whose loved ones did not, each one sharing how the Myocarditis Foundation influenced their journey. Each story will be shared in our various forms of print media and website. Please join us as we reminisce and honor the medical professionals who further defined the science of myocarditis and Giant Cell Myocarditis over 20 years and the members of the Myocarditis Foundation staff who walked with us through our crises.

Medications: They Make Me Crazy

For your own enlightenment, read the pharmaceutical company’s package insert of one of your drugs. If your pharmacist doesn’t automatically give it to you when you pick up your drugs, ask for it. The very last section is entitled, “What are the ingredients…” of your medication. For my new osteoporosis drug those ingredients are corn starch, magnesium stearate, microcrystalline cellulose, and sodium starch glycolate.

In a study published in Science Translational Medicine in March 2019, it states, “Inactive ingredients in oral medications are generally poorly appreciated and many include materials associated with adverse reactions in patients.” These inactive ingredients are called “excipients”. They are not expected or intended to have a direct effect but instead are added to alter the physical properties of the tablet, to facilitate absorption, or promote stability, taste or appearance. The study, done at Brigham and Women’s Hospital and M.I.T., analyzed the inactive ingredients found in 42,000 oral medications that contained more than 354,000 inactive ingredients. The magnitude and scope of toxicities of inactive ingredients that can act as allergens is currently unknown, making a hypersensitivity reaction possible. How can our healthcare provider know what we’re reacting to?

What happens to these ingredients in the body? Where do they go in a body that is already compromised by less than perfectly functioning organs? We know that most of our medications are excreted in the urine and/or metabolized by the liver. But as I read the package insert, the studies imply adverse events to active ingredients, not inactive. Given all that I know now, I need to be convinced that I really need these new drugs before I take them; and by the way, I do.

When I’m scheduling a vaccine, I read the insert looking for aluminum because I’m allergic to the metal. In vaccines, when aluminum is included with the ingredients and is then listed as “adjuvanted”. Adjuvants increase the immunogenicity of vaccines, or to make them more potent. That’s how I got myocarditis 24 years ago, so as a rule, I avoid all adjuvants. Not sure that’s sound thinking but it is what I do.

I also look for whether the vaccine is a live virus. We should never get live viruses nor should our pets. When going to the vet always make them aware that you are immunocompromised. Also, should you be a Latex allergy, beware of preparations that list latex as a component of the multidose vial or the prefilled syringe.  Then I choose the preparation I can have and search pharmacies to find out where I can get the one I want. I also consult my transplant team who access the hospital pharmacologist for their advice.

I need a pertussis (also called whooping cough) vaccine because I no longer have antibodies to the disease from the previous vaccine received years ago. However, the vaccine preparation is only available with tetanus and diphtheria, and it is adjuvanted, so I can’t have it. Pertussis is on the rise over the last several decades primarily in babies and children, however adults can carry the disease to the children; important information for grandparents. Being vaccinated for Pertussis is a risk for me whether I get it or I don’t.

If you have allergies to any medications or vaccines or any of its components, inform your doctor. Don’t take the medication until you are comfortable and have all your questions answered. Finally, trust your instincts.

KEEPING FIT WHEN HOUSEBOUND

I don’t know about you, but I’d much rather be outside walking for exercise than being housebound. It’s a challenge to dream up exercises that we can approach with enthusiasm while remaining indoors due to ice, snow and bitter cold temperatures. However, no matter how unpalatable, keeping the transplanted heart healthy must be a priority in our lives. Inactivity is simply not an option.

According to the Mayo Clinic, exercising regularly helps you control your blood pressure, reduce stress, maintain a healthy weight, strengthen your bones and increase your physical function. With the benefits in mind, let’s get started.

WARM UP

Start slow and assess your tolerance to the exercise. If you feel shortness of breath, heart irregularities, dizziness or nausea, stop exercising. If the symptoms don’t go away, contact your doctor.

STRENGTH TRAINING

I always start with dumbbells, as weight resistance builds muscle. I think I use light enough weights that I never seem to build muscle, but at least I’m not losing ground, and that must be okay. Weight resistance also builds bones which is important to fight osteoporosis-a side effect of long-term steroid use. We are always fighting muscle atrophy which is a side effect of our steroids. Another benefit is that muscle mass utilizes more calories than fat at the same body weight. As a post-menopausal woman, exercise helps ward off weight gain that comes with age.

AEROBIC EXERCISE

I’m never excited to get on our treadmill, until I turn on the music, then I forget how incredibly boring it is. The handrails are a must for me as I’m so unbalanced, a consequence of childhood scoliosis and old age.  It’s a good idea to let the folks who share your domicile know that you are on the machine in the basement, so they can check on you. Be sure to use the clip-on safety feature which automatically turns off the treadmill if you fall.

If you’re on the couch watching television for the evening, make sure to get up and walk around the room every hour to get the circulation moving. Pay attention to time spent inactive as well as to hydration.

I have transplant friends who are runners, both before and after heart transplant surgery. God bless them. Keep it up. I never was a runner; just make sure you are doing something.

STRETCHING

Flexibility: keep it as long as your can. Lack of flexibility leads to limitations of activity. Limitations in flexibility lead to greater inactivity. Whether it’s yoga, modified yoga, or floor stretching, do your best to remain flexible.

COOL DOWN

Make sure you cool down, allowing your heartrate to return to normal. Be cognizant of your ability to tolerate whatever level of activity you are trying to achieve.

SUMMARY

In my younger years (now considered a Senior), I was quite an athlete, in my own estimation. I always pictured myself as being one of those tanned (no longer appropriate) and muscled Seniors running errands around town in my tennis skirt. My reality is much different, but I can’t complain. I’m healthy and strong intermittently, if unbalanced with a medical record as voluminous as the old Encyclopedia Britannica.

New Year’s Resolutions You Can Keep

I wrote last year at exactly this time to let you know I was going to check in and see how you made out keeping the resolutions I proposed last year. Well, as you know, change is not an event but a process, so yes, I’m still working on them. How about you? For 2025, I’m adding a new one: take time to notice the needs of others around you. I am of the belief that no encounter is an accident, rather it is a chance to change the world, one good deed at a time.

The blog printed last year bears repeating, just in case you missed it. Enjoy, and have a very blessed 2025:

New Year’s Resolutions You Can Keep

January 2024

I never met a New Year’s Resolution I could keep. And it’s not like I could forget it as it was always the same: Lose weight and exercise more. That is until I found an article online and have adapted it to heart transplant patients like us, but I think there is something in it for everyone. The dictionary defines “resolution” as a firm decision to do or not to do something. Reflecting on the past year makes us want to do the New Year better. However, life is full of twists and turns, which affect our ability to stay committed.  See if you find any of this helpful.

1. Commit to working on relationships with your tribe, be that your family, or close friends, folks that are important to you. A famous Gallop poll done in 2020 revealed that American citizens reported their own mental health at an all time low. I think we transplants are at an even greater risk for our mental health to be compromised due perhaps to PTSD caused by a sudden detour in our lives from myocarditis, from side-effects of our meds, from fear of an uncertain future, from frequent illnesses or uncertain finances from the cost of our care. Don’t isolate when it’s medically allowable for you to be in community; stay in touch; let yourself receive support when offered, and freely give it away.
2. As much as possible, grow comfortable with being flexible. I optimistically pay for tickets for plays, concerts, trips, entertainment every year, and end up giving them away when I get sick. Little things used to throw me: a long wait for a test, my required meds not coming into the pharmacy on time, or serious traffic on my way to a clinic appointment. As transplants, we must be committed to taking meds on time, scheduling and keeping appointments, making sure we eat right and exercise daily. But stuff happens; some things you just can’t control. Forgive the universe for the intrusion and move on. Don’t allow yourself to be a victim.
3. Slow down; take time to rest, refuel; give yourself a break. Treat yourself; sleep in. We’re so overscheduled in our society today that we don’t have time to even think. Spend time caring for you, doing what you love. I love to bake for shut-ins or make a meal for someone who is in need. When my grandchildren are coming for a visit, I like their first awareness when entering my home to be to smell a special dessert baking in the oven. It makes me feel satisfied. Take your dog for a walk; he’ll love it.
4. Speak in hope. If you find yourself being negative, turn off the TV, put down the newspaper or your phone. Count your blessings. Encourage others. Sing. Volunteer for an organ donor organization. Do more listening than talking. Live with gratitude. Count your blessings. If you can’t graduate to a more positive mindset, talk to your doctor about medication or perhaps counseling. It’s always good to learn more about what makes you tick. Get rid of emotional baggage. Meditate. Pray for others less fortunate than you.
5. Be kind. Reach out to others you know are hurting. I believe that there is always someone out there who is worse off than I am. Nothing makes me feel better than to do something for someone else. Clean your closets, donate items to an organization that helps the poor or abandoned or endangered animals.

Well, you have another chance to get behind a few resolutions that could change your life. Believe me, you are worth it! Happy New Year!

I Feel …

I just got out of the hospital again for yet another respiratory virus. Seems like my lungs have taken quite a hit in recent years.  Currently, I have a million drugs coursing through my system. I feel fragile, emotional, grateful and alive. I can breathe again. Coming off another steroid taper, I feel hyper, impatient, and anxious to get back in the game. I’m tired of being in isolation. My hospital room though private, did not let in daylight even with the shades up because my tower was adjacent to another tall building 6 feet away. The plastic pillow made me sweat. I couldn’t wait to get home for a shower. I’m always half tempted to burn my bathrobe and slippers upon discharge. But at least I had a private room. The situation could always be worse, as so many of you already know.

Though this sounds a lot like complaining, it really isn’t. The quality, professionalism, cheerfulness, compassion and attentiveness of my nurses was remarkable. Smart too. They were busy, active but not overburdened. There are good things happening for nurses on the front lines these days, post COVID. The unit Physicians Assistants and Nurse Practitioners didn’t hardly ever give me exactly what I wanted but every time, they gave me something close that I needed. I don’t like anyone messing with my drugs but MY Transplant Physician, Dr. Latif. If they make even minor changes, everything goes a little kerflooey like my blood pressure or blood sugar and it takes a few days to normalize. Dr. Latif has gotten me this far with her constant attention and innate good judgement. She’s now a member of our family.

The food in the hospital is not as bad as it used to be. I know that doesn’t sound like a ringing endorsement, but I mean it as a compliment. The people who deliver the trays are kind and make every effort to get you what would make you happy, like an extra cut of coffee.  However, eggs without salt just don’t cut it, not their fault. Fish in the hospital is simply a hard no.

The bottom line is I love New York Presbyterian Hospital/Columbia-my second home.

I wouldn’t let my husband visit except briefly for lunch daily for fear that he would get sick. I forbad my kids from visiting at all. They have kids and jobs; they don’t need to be side-lined by an esoteric respiratory virus. I’m fine on my own, knowing I’m being supported by the prayers and well-wishes of those I hold most dear.

The juggernaut is of course the ER, a necessary portal to pass through to get admitted. Though the care is exceptional on the part of all thing’s personnel and medical, from x-ray, to lab, to medical staff, the cleanliness factor leaves much to be desired. Sometimes it’s no soap, sometimes no paper towels, sometimes no toilet paper, sometimes a wet floor-which is too ghastly to contemplate. I end up praying that God will protect me from all the pathogens I don’t already have. They certainly need to do this better. I know they can.

This is my favorite time of year, Thanksgiving and Christmas. I have so much to be thankful for. I’ve spent lots of holidays in my hospital, which is devastating to my family, but though not preferred, has been survivable. Thanks to all who simply show up to do their job. Bless them.

I Didn’t Know…

23 years ago, I didn’t know anything about myocarditis.

23 years ago, I didn’t know if I would survive it.

23 years ago, I never expected to be an organ recipient.

23 years ago, I didn’t know if there would be enough organs for me.

23 years ago, I didn’t know that living as a heart transplant would be so hard.

23 years ago, I didn’t know that my being sick would be so much harder on my family than it was on me.

23 years ago, I could never have imagined that I would live for 23 more years.

23 years ago, I had no idea that having myocarditis would open my world to include so many incredible health professionals with a heart for healing.

23 years ago, I had no idea how often and in how many ways I would be blessed with this second chance at life.

23 years ago, I didn’t know anything about pediatric myocarditis. Knowing this meant that I was given the privilege of getting to know so many wonderful people in the worst season of their lives. My heart continues to suffer with them.

23 years ago, I didn’t realize that I would visit my pharmacist more often than I’d visit my friends.

Things are not the same now as they were 23 years ago. Doctors are more educated about the disease. There are more medicines, more diagnostics, more devices to treat the critically ill, and more published research is available leading to more lives saved. Praise God!

Who knew that it would take a pandemic to make “Myocarditis” a household word.

Who knew that in March 2025 the MF would be celebrating its official 20^th Anniversary… a labor of love.

Identity

I tell random people that I encounter that I’m a heart transplant. Maybe I want people to know why I’m not like other people. Why I can’t fly, why we don’t travel, why I can’t drink, why I can’t eat rare meat, why I don’t feel well on any given day, why I’m not smiling, why so much of my time is taken up with tests and appointments, why I’m nauseous, why we cancel plans, and why we don’t make plans until the last minute.

In a way, however, there is also an element of accomplishment for living this long post-transplant, surviving not physically, but mentally. The irony, I’m happier than I’ve ever been in my life.

Yet when I hear from other transplants that they are not doing well, my heart goes out to them, some suffering from depression, others anxiety or fatigue. I’ve heard, “I feel like giving up”. Myocarditis may have taken away their health, their sense of well-being, their joy, or their hope.  I feel compelled to respond.  Here are my thoughts: being a transplant is a fight, and it requires an almost athletic commitment to positivity. The same way you commit to a physical program to keep your heart healthy, you must commit to a mental program to not despair. Yes, we live on the edge. No one knows how long this heart will last or whether the myocarditis will return, which it has been known to do. But we have each other, a community of patients like ourselves, and one way of making it through is sharing our struggles with each other.

Continue to eat healthy, exercise and drink water, but also figure out what makes you tick, what makes you happy, what gives you peace, and feed that too. For me, it my faith, my belief that no matter how long I live, that I am living out the purpose for which I was created right now.

I enjoy writing, learning about theology, spending time with my children and grandkids, cooking and mission work. I serve in a variety of volunteer roles for organizations I believe in. It took a while, but Candace got her groove back. I’ve become a better person. It’s a journey, not a destination. I love sitting in the backyard and listening to the sounds of life:  to birds singing, leaves rustling, small animals scampering, the sound of wind chimes in the breeze-all a connection to the Divine.

Don’t give up, reach out, for professional help, if necessary, at the very least to your transplant physician. Tell the truth. Let them help you. They are working hard to keep you alive. Talk to the parents who lost children to myocarditis at one of our Myocarditis Foundation Family Meetings.  They never got the chance to experience the hardships we face, while they continue to deal with their loss every single day.

Life is hard; being a transplant is hard; loss of those we love is much harder still. A diagnosis of myocarditis is a difficult road. Yet, we can’t give up.

Alternatives to Heart Transplant? You Have Options

In a 2020 article published in Duke Health Magazine by author Morgan deBlecourt, the subject of alternatives to heart transplant surgery were explored. Heart transplantation may not be the best option for everyone. For one thing, mechanical devices buy you more time: for the heart to come, for the myocarditis treatment to work, for the heart to heal or for you to decide what is the right option for you. If you are older than 70 years of age, you may not qualify at every institution. Sometimes older hearts in excellent condition are given to older candidates on the list. Some patients may be too frail or too sick to survive the surgery. A history of or current diagnosis of certain types of cancer is another contraindication. Fortunately, there are other alternatives.

Taking care of your new heart after a transplant is a lifelong effort, so some people may not want to make the adjustments. Adjustments in lifestyle such as abstaining from tobacco and illegal substances, limiting alcohol, attending frequent follow-up appointments, and taking anti-rejection and other medications must be made. Plus, frequent heart biopsies and annual cardiac caths or nuclear PET scans can be stressful. Maybe your heart transplant center is not nearby.

Implantable ventricular assist devices (also called VADs or LVADs) are mechanical pumps that help your heart supply blood to the rest of the body. They can extend a person’s life for years, either as they await transplant, or as a destination therapy. Thousands of patients die every year waiting for a heart. There simply aren’t enough donor hearts to go around.

Advances in technology have made LVADs smaller, more portable, and more viable as a final treatment. One of the newer models is the size of two AA batteries. Most people with an LVAD can get back to living life a pretty close to normal.

For someone like me, who has likely aged out of consideration for a second heart transplant when/if this one fails, some type of mechanical device might be an option. I see two problems for me: I am noise sensitive therefore the mechanical “whirring” sound made by the device might be annoying to me and secondly, at some point, I would be required someday to turn it off. That would be a difficult decision to make. Though for the chance to live longer, to spend more time with my family, I think I would endure just about anything.

Another option might be a “Mechanical Heart Device” which would replace the functioning of the whole heart. Initially developed as a bridge to transplant, research in ongoing to develop a device to permanently replace the heart. The good news is that an artificial heart would not require the patient to take immunosuppressive drugs, thereby eliminating all the risk we take for potential damage to our other organs.

Other options include surgery and/or medical management, which might delay the need for a transplant, buy you more time. Your Heart Failure Team will advise you regarding the option that’s right for you.

PHILANTHROPIC GIVING: A SERIOUS MATTER

The following statement was made in a Forbes magazine article entitled: “What’s Next: Trends in Philanthropy for 2024”, written by Eileen Heisman, President and CEO: National Philanthropic Trust.

“Donations trended downward following the pandemic and the cost of operations increased due to inflation.  As we enter an unpredictable giving cycle due to the 2024 elections and economic volatility, organizations that are already stretched will continue to struggle.”

And there are more and more registered nonprofits competing for the same dollars every year. According to the NJ Center for Nonprofits, in 2023 there were 52,000 nonprofits from NJ registered with IRS. There were 1.41 million nonprofits in the US in 2005, when the MF was officially granted tax exemption. In 2023, there were 2 billion nonprofits in the US.

Nonprofits are funded by individual donations, corporate grants, fees for service and fundraising events by organizations and individuals. Donations are down, corporate grants are scarce, and nonprofits are hosting fewer fundraisers. However, during the Covid pandemic, the Myocarditis Foundation was in the greatest demand ever. We received over 100,000 hits on our website, as the relationship between COVID and myocarditis and COVID vaccine-induced myocarditis became apparent. We were there for you with accurate, up to date information. However, we are not and never have been a fee for service organization.

The literature reports that donors will give to the organizations they care about, to support the issues that mean the most to them. And they will support the organizations that offer them something they need, be it support, information or education. The Myocarditis Foundation is a nonprofit I care about and therefore has received my designated nonprofit dollars consistently over many years. Why? Because I don’t want other people to suffer like I did. That’s what I care about. I believe the MF will end this disease.

My Co-Founder, Dr. Leslie Cooper from the Mayo Clinic, consulted on my case while I was a patient in New York Presbyterian Hospital/Columbia Medical Center more than 20 years ago. Knowledge gained from his past research contributed to my survival. I helped started the foundation to honor him.

The Myocarditis Foundation has never overspent, wisely applying funds to our mission, including awarding over one million dollars in research grants, and relying on our Board of Directors to volunteer to meet our needs.

The Myocarditis Foundation has amassed a team of doctors from all over the world with experience in myocarditis, known for their published research, their teaching and mentoring of young fellows who are training for a career in cardiology specializing in heart failure, and constantly fight for equity of funding for myocarditis research grants amid other deserving rare diseases. Their collective knowledge and experience allow us to pass on to our clients the latest, most cutting-edge information available.

Tragically, if your loved one did not survive myocarditis, it could be because we don’t yet have all answers, or perhaps because the disease progressed faster than the treatment could be administered or perhaps it developed silently without notice. As I said before, we still don’t have all the answers, but we surely have made progress. We need your help to get there.

Nonprofit giving is a serious matter.  When choosing what nonprofit you will support, think about donating to the Myocarditis Foundation. In an era of unprecedented hospital closures, longer and longer wait times for needed hospital visits and tests, and the need to travel farther for specialized care, all which adversely affect myocarditis outcomes, it is more important than ever to support the MF that is fighting on the front lines on behalf of a disease you care about.

Today’s article is an appeal for funding to honor the physicians, researchers, doctors and nurses whose contributions to the victims of myocarditis cannot be overstated. Please give generously to the Myocarditis Foundation today.

Sincerely,

Candace Moose

CAREFREE

Despite the notion that summer is a time to let down your guard, being carefree does not apply to heart transplants. At least we’re not wearing masks this time of year (except in very public places like hospitals and airports). I think the biggest issue this summer is hydration given this heatwave, and secondarily sun exposure.  But there are so many things we need to be cognizant of. To name a few…

This heatwave is particularly dangerous for us. Years ago, as a relatively new transplant, I ended up in the hospital with the norovirus, suffering from dehydration, a severe migraine and toxic Tacrolimus levels. I worried that my heart would over-heat, causing myocarditis. It was fairly easy to treat the dehydration, not as easy to resolve the migraine and weeks before for my Tacrolimus level returned to pre-virus levels. It confounded my doctors as to why while I had been instructed to stop my meds, my levels did not go down but continued to rise. It didn’t make sense, to lose everything from your GI tract and the Tacrolimus level kept increasing. It was the result of my hospitalization that the team learned about this seemingly incongruous phenomenon. Tacrolimus toxicity can present as acute renal failure.

So, my warning is beware of dehydration, no matter the source, the weather or a virus; seek medical care if you become dehydrated. Make sure you have water with you everywhere you go and keep drinking, even if you are not thirsty. Pay attention to how much fluid is going in and how much is coming out. Always take water with you on a plane, in case there is turbulence, and the pilot does not allow the refreshment cart to be passed.

Likewise, stay inside mid-day-don’t be out in the heat of the day or the most intense sun. Wear hats and eye protection. I have blue eyes that are more sensitive to the bright sun. We’re already at risk for secondary cataracts which can be caused by steroid use, so protect them as much as possible. Wear sunscreen; reapply every few hours. Skin cancer is a huge issue for the immunosuppressed. I’ve had five Moh’s procedures for squamous cell carcinoma. A brochure in my Dermatologist’s office reported that we have a 600 times greater incidence of skin cancer than the normal population. Get your check ups regularly.

Hot tubs are not for you. The bubbles aerate bacteria in the water that can cause a lung infection. You must be wary of public pools as well. Observe the other folks in the pool for skin or lung infections. Since COVID, I never went back to public exercise.

Oh, and don’t forget to have fun. The cold weather will be here before you know it!

LAUGHTER IS THE BEST MEDICINE

Laughter is good for everybody. All the experts agree. It certainly is easier to swallow than some of our pills. It promotes good health, strengthens the immune system, reduces pain, reduces blood sugar, and reduces stress. According to Psychology Today, “recent studies show that laughing with others releases endorphins in the brain. Spreading endorphin release through groups promotes a sense of togetherness and safety. Laughing activates the release of the neurotransmitter serotonin, the same brain chemical affected by the most common types of antidepressants. And most importantly to us…laughter protects the heart, as research has shown that laughter has anti-inflammatory effects that protects blood vessels and heart muscles from the damaging impacts of cardiovascular disease.”

Did you know that women laugh 126% more than men? I’ll let you draw your own conclusions from that statistic – maybe the men they are with are just funnier. Dr. Michael Miller, cardiologist, recommends 30 minutes of exercise three times a week for cardiovascular health PLUS 15 minutes a day of laughter.

According to an article published by the Mayo Clinic entitled, “Stress Relief from Laughter? It’s No Joke”. Can you imagine a doctor ordering giggles and guffaws? The article goes on to say that laughter enhances your intake of oxygen-rich air.

This is going to sound crazy to you, but truth to tell, there was a time in my life when I was much too serious. So serious in fact that I prayed for the gift of being funny. You’ll have to ask my family for input, but from my perspective my prayers were answered.

In the midst of the critical phase of my illness, I laughed one time, tears running down my face type of laughter. Let me set the stage. I was in a Critical Cardiac Care room directly in front of the nurses’ station with tubes coming from everywhere. The past weeks that seemed like years, many critical events occurred, lots of concerned faces, deeply meaningful conversations with loved ones, tears, and handholding. I had no contact with anyone except those who came into my room though I observed family members of other patients who walked past my room with familiar sad expressions. The room next to mine seemed to get the most attention, with all levels of medical professionals rushing in and out, 24 hours a day, so I decided to pray for this very sick patient.

Weeks went by and my prayers continued as I waited for my heart to arrive. One day the decision was made to get me out of bed to walk with much assistance for myself and equipment around the unit. I peeked into the room next door, the object of my persistent prayers, only to discover it was the Staff Breakroom!! I started to laugh and couldn’t stop. It was like a vacation from suffering.

Moral of the story, though our medicines, tests, visits, results, and devices are terribly important, make time to laugh. Did you hear the one about…..?

BLAME

Everything that’s gone wrong with me for the past almost 23 years, I’ve blamed on transplant drugs. It seemed a safe and convenient place to store my complaints. Now that I’ve “crossed over” to older age, I can’t do that anymore. Now my health issues are more than likely due to my advancing age. This is actually a good thing, a really good thing. I never expected to live this long. Truthfully, I rarely gave my escalating number of rotations around the sun a lot of thought, trying always to live in the moment, to appreciate the Gift of Life, until the aches and pains started to escalate. Everything seems to not only becoming more painful but all the great moments, like the Christmas season, seem to be passing more quickly than ever.

There are many benefits to getting old though, like grandchildren. We’re respected for being the oldest people in the room., though technically deficient. I’m not sure if it’s wisdom, or just experience, but I definitely think we share an over-whelming desire for peace. My husband and I chose to retire near our children and their families so we could be part of their daily lives and trials. I want them to remember me. Relationships with them and others mean more with each passing year. We’ve forgiven ourselves and others who disappointed us. People hold the door for you. Wait staff serve you first. Random people help me up and down steps. My transplant doctor is now my friend. I look forward to clinic visits so we can catch up. I’ve whittled down the organizations to whom I devote my time and attention to the church, The Myocarditis Foundation, and a variety of missions. My goal is to leave the world a better place.

Truthfully though, blame is a terrible place to live, and it is unhealthy. There is no healthy place to put it. I understand grief, though I’ve not experienced it like far too many of our myocarditis families; our hearts go out to those who didn’t survive this disease long enough to receive a transplant. As I say this, I can name the children who I never met and their parents who I’ve met over the years and whose stories appear on our website: myocarditisfoundation.org as victims of the disease. It’s simply heartbreaking.

Through the efforts of the Myocarditis Foundation’s advocacy, research, support and education programs, and the work of many others around the world, we know a lot more about myocarditis than we did twenty years ago. The word “myocarditis” is now part of mainstream vocabulary. Maybe one of the first measures of our success will be that transplanted victims of myocarditis live to old age. Another measure of our success will be the availability of more treatment and diagnostic options; catching the disease early, getting those affected in the hands of doctors who know how to treat it, and initiating treatment early enough in the disease cycle that the heart can be preserved.  The final measure of our success will be an eradication of the disease. Help us get there as soon as possible.

HOSPITALITIS

None of us can ever forget our initial trip to the hospital for myocarditis. I think fear was the most pressing emotion for all involved: family and patient alike. Staff tried to allay our fear with reassuring words, but they fell on deaf ears. Deep down, I knew whatever this was, it was a game-changer. The question was, would I be able to face it. I remember thinking that I just didn’t think I would die so soon. My overriding concern was not for myself but for my family, leaving them behind. I had no idea what the disease was or how much history, innovation, and bravery had contributed to my survival.

All the medical stuff that subsequently happened was a difficult journey, made bearable by the compassion of the staff who choose to take care of the most complex patients. Across the board, every level of staff, every diverse function of staff, all were wonderful to me. I embraced their kindness. I gulped it into my lungs like oxygen, fueling my ability to cope. Lots of routine visits, tests, medications, crises averted, and more than twenty years later, I end up with many hospitalizations over the recent 2-3 years, thanks to COViD and lots of circulating viruses, which have disproportionately affected those of us who are immunocompromised.

Have things changed in medicine over these past two decades? Yes of course. The use of Nurse Practitioners and Physician Assistants has taken a lot of pressure off both doctors and nurses and contributed greatly to the comfort of the hospitalized patient. All that I have met, have been extremely knowledgeable and professional, not to mention, they are available off shift, throughout the night to address issues as they arise. The Myocarditis Foundation, under the leadership of Executive Director Gen Rumore, has made a concerted effort to educate Nurse Practitioners about myocarditis as their observation and insight is often the first member of the medical team to recognize untoward and unusual cardiac symptoms and bring them to the doctors’ attention. This program is an extension of the Foundation’s mission which is to educate medical professionals about the disease.

I’ve managed to be hospitalized twice over the Christmas/New Year’s holiday. When there was not a single car parked on Fort Washington Avenue outside my window, yet there was always adequate staff in-house to care for me, for everyone. One Christmas Day I had the television on the channel that pictured a fire burning in a fireplace while playing Christmas Carols, watching to snow fall outside my window. It was the best I could do to celebrate my favorite holiday.

The COVID pandemic continues to create problems for hospitals, necessitating procedural flexibility, like housing two patients in an Isolation Room intended for one.  All changes in protocol were necessary to care for the overwhelming caseload of infected, seriously ill patients. It will take years of retrospective studies to fully understand this crazy pandemic and how it affected the world. The fall out will likely include the closure of many hospitals, I fear mostly in economically disadvantaged neighborhoods, after caring for the uninsured. Many have opined that our medical system was broken, even before this happened. Equity in medical care of all economic strata should be our goal.

With each respiratory virus, I was discharged as soon as I started to improve, sent home to convalesce to prevent me from acquiring a different, hospital-based infection. Also, the bed was desperately needed for the patients in the ER who had been waiting for days for a bed upstairs. I remember being conflicted regarding whether I felt well enough to manage my disease at home versus staying in their very excellent care but at risk to picking up something new and quite possibly worse. The decision was mine; but of course, I always chose going home to be with family with the proviso that I could return at any time if I deteriorated.

My prediction is that hospital care and medical care, will continue to change in coming years as money becomes more scarce and hospital administrators try desperately to deliver a high standard of care with fewer resources as insurance companies and the government try to limit options by controlling spending through withholding treatment approvals.  Myocarditis patients in profound heart failure require what I’ve always described as the use of “every tool in the toolbox” in order to survive. I pray that these cutbacks in hospital services will not affect the innovation, discovery and delivery of medicines, devices, services, and staff who are needed to care for very sick myocarditis patients. We transplant patients live because of the “The Hard and Glorious Journey” (as stated in the “Heart Transplant” research article by Dr. Stolf, published in 2017) undertaken sequentially by creative and skilled physicians over more than 50 years, each building on each other’s discoveries, bringing us to where we are today, leading to longer survival. Meanwhile, the Myocarditis Foundation will continue to fund research utilizing your donations, to guarantee that innovation with the goal of finding a cure, will continue.

SEASONS OF DISCONTENT / LIFE OF JOY

Looking back on almost 23 years of transplant life, I can almost put the issues I’ve faced into three sequential buckets.

The first seven years were rejections: 5 severe and roughly 10 of lesser grade. Lest you think I was incapacitated in-between those episodes, I wasn’t. They were some of my best tennis years. They were also the years of my son’s wedding and the birth of my first grandchild. Tumultuous yes, however, in perspective, incredibly wonderful. Exactly what I had prayed to live to see.

The next seven years could be placed in the bucket of palpitations/arrhythmias/AICD changes. Never did they exactly figure it out, but one day these unpleasant episodes just stopped. And during these times, there were lots of medication changes and subsequent side effect management.  My bloodwork is never completely normal, but I have more than 20 years of data to prove that I am normally abnormal. Again, on the home front, these years were also amazingly wonderful; another wedding, more grandchildren, singing in church choir, travel, physical fitness – happy to be alive.

These last 7 years could be characterized medically as more complicated which has mirrored my personal life. Frequent hospitalizations with great diversity of infectious agents, the passing of significant and beloved family, cancer treatment of family and friends very close to me, as well as celebrations of 50 years of marriage and crossing the line to old(er) age. It never occurred to me that I would experience life as an older person; I never dared dream that I would be referred to as “Mam” (madam), stand crooked, walk with a cane, go to bed early, eat dinner at 5 pm, but I do, and I feel blessed to do so. I benefitted from the advances in our understanding myocarditis and transplant medicine over that time. Time to think of my legacy.

Through it all, it has been my honor to serve the Myocarditis Foundation in many capacities, to meet so many wonderful people like you, to become acquainted with talented and caring physicians from all over the world who are also committed to serving patients and families like you and me. I am grateful for the service to our foundation of folks like Gen and Joe Rumore, who currently run the day-to-day operations of the foundation as Executive Director and Chief Operating Officer respectively. It is the same for us all, the Board, Dr. Cooper, Dr. Price and the Medical Advisory Board, members past and present, that serving the foundation is much more than a job or a volunteer effort. It is a calling; one we didn’t pick, but that picked us. We share this legacy.

Someday there won’t be any need for a foundation like ours, the day we collectively find a cure. What a glorious day that will be. The MF has been the driving force in progress in understanding this disease and we will not leave our post until we are no longer needed. Consider making a recurring donation, hosting a fundraiser or leaving a legacy gift. We cannot do this without your help.

Trust that we are working, have been working and will continue to work on the disease that disrupted, detoured, complicated and in the cases of some families, tragically destroyed their lives.

In the meantime, let me leave you with this story about giving that I found in multiple sources on the internet, slightly revised:

“Once upon a time there were four people: Everybody, Somebody, Nobody and Anybody. There was an important job to be done. Everybody was sure Somebody would do it. Anybody could have done it, but Nobody did it. Somebody got frustrated about that because it was Everybody’s job. Everybody thought Anybody could do it, but Nobody realized that Everybody did not do it. It ended up that Everybody was sure Somebody would when Nobody did what Anybody could have, and Everybody should have.”

Fundraising for myocarditis, a previously unknown disease, has been a challenge through the years. We are grateful for Everybody who has given over the years. The foundation just received a Platinum Transparency Certification from Candid, formerly Guidestar, so you can be assured of our effective management of donations. Fundraising events throughout the pandemic all but ceased. Grant money also remains challenging as corporations narrow their giving to specific geographic areas or populations. Everybody thinks Somebody else is giving. We need you to be the Anybody who did! Giving feels good. Join us and choose to make eradication of this disease your legacy too. It will bring you great joy.

New Year’s Resolutions You Can Keep

I never met a New Year’s Resolution I could keep. And it’s not like I could forget it as it was always the same: Lose weight and exercise more. That is until I found this article online and have adapted it to heart transplant patients like us. The dictionary defines “resolution” as a firm decision to do or not to do something. Reflecting on the past year, makes us want to do the New Year better. However, life is full of twists and turns. See if you find any of this helpful.

1. Commit to staying in relationships with your tribe, be that your family, or close friends, or folks you know from your house of worship. A famous Gallop poll done in 2020 revealed that American citizens reported their own mental health at an all time low. I think we are at even greater risk for our mental health to be compromised due perhaps to PTSD caused by a sudden detour in our lives from myocarditis, from side-effects of our meds, from fear of an uncertain future, from frequent illnesses or uncertain finances from the cost of our care. Don’t isolate when it’s medically allowable for you to be in community; stay in touch; let yourself receive support when offered, and freely give it away.

2. As much as possible, grow comfortable with being flexible. I optimistically pay for tickets for plays, concerts, trips, entertainment every year, and end up giving them away when I get sick. Little things used to throw me: a long wait for a test, my required meds not coming in the time I was expecting, or serious traffic on my way to a clinic appointment. As transplants, we must be committed to taking meds on time, scheduling and keeping appointments, making sure we eat right and exercise daily. But stuff happens; some things you just can’t control. Forgive the universe for the intrusion and move on. Don’t make yourself a victim.

3. Slow down; take time to rest, refuel; give yourself a break. Treat yourself; sleep in. We’re so overscheduled in our society today that we don’t have time to even think. Spend time caring for you, doing what you love. I love to bake for shut-ins or make a meal for someone who is in need. When my grandchildren are coming, I like their first awareness when entering my home, is to smell a special dessert baking in the oven. It makes me excited and calm at the same time. Take your dog for a walk; he’ll love it.

4. Speak in hope. If you find yourself being negative, turn off the TV. Count your blessings. Encourage others. Volunteer for an organ donor organization. Do more listening than talking. Live with gratitude. Count your blessings. If you can’t graduate to a more positive mindset, talk to your doctor about medication or perhaps counseling. It always good to learn more about how you tick. Meditate. Pray for others less fortunate than you.

5. Love your neighbors. Be kind. Reach out to others you know are hurting. I believe that there is always someone out there who is worse off than I am. Nothing makes me feel better than to do something for someone else. Clean your closets, donate items to an organization that helps the poor.

Well, what do you think? I’d love to compare notes with you at year end. These are a few resolutions I can really get behind. Believe me, you are worth it!

Vaccines

In my ongoing quest to learn new information about my disease, Giant Cell Myocarditis, so that I can be helpful to others who have followed me, Dr. Cooper put me in touch with a physician with expertise in immunology. The Center for Advanced Cardiac Care would like me to have two fairly new immunizations for diseases which could take me down if I contracted them. You may remember that I originally succumbed to GCM within two hours of being immunized with Typhoid and Hepatitis A, which were required for me to travel to Malawi to do mission work 22 years ago. For about ten years following the transplant, I didn’t receive any immunizations at all until SARS (the precursor to COVID) showed up, carrying an existential threat to people like me.

Thus began my lifetime pursuit of researching all immunizations being recommended by my physicians, reflexively given in Emergency Rooms for even minor injuries, or advertised on TV for people my age for the presence of an aluminum adjuvant. I read package inserts, consult pharmacists, have contacted pharmaceutical companies for product information, gathering intelligence to help me make my decision whether or not to have the vaccines.

What would have happened if I’d only had one and came back for the second at a later date? Who knows. I got short of breath when doctors and pharmacies recommended getting the flu and Covid vaccines at the same time this year. You can come back for the second one. You are in the driver’s seat.

The statistics were on my side 22 years ago. “The vaccines you are receiving have been used for years, worldwide, have been administered to millions of people, and are very safe”, my doctor said in August 2001. Turned out not to be true for me.

I just got off the phone with a retired Colonel in the US Army Medical Corps, a medical consultant in a variety of disciplines. She is an allergist/immunologist/Vaccinologist-Adversomics with encyclopedic knowledge of myocarditis, vaccines, and adverse events related to them. We talked about lots of other things too: the state of healthcare in the United States, vaccine-acquired immunity versus vaccines preventing severe complications of the disease, adverse event reporting of vaccine injuries, and immunological health. Some of the facts are sobering: the #1 cause of bankruptcy in the U.S.  is healthcare debt; the United States ranks 35^thin infant mortality in the world; not all adverse events are listed in the package insert.

Vaccine injuries should be reported. If your physician doesn’t report them, you can. I get my vaccines at one of the large pharmacy chains. You must sign a consent first. Read it carefully. At the same time, you should receive an information sheet which explains how to make an injury claim. Vaccine Injury Reporting and Compensation is a federal program administered by the US Department of Health and Human Services.  Before receiving a vaccine of any kind, please consult your post-transplant physician.

The expert I talked to opined the following: “Did you know that love, kindness and forgiveness help create immunological health?” I have long felt that a positive mind-set creates a healthy environment for a foreign heart to feel at home in your body. It was affirming to meet someone who thought the same way I do about health, though I never considered specifically immunological health.

Though immunized, I am currently fighting my way through the flu, trying to stay out of the hospital yet again. Now armed with new information about vaccines and learning that they can also play a role in preventing serious complications of the disease, I can hopefully slide toward an uncomplicated recovery at home.

In the New Year, I have a renewed gratefulness for doctors and researchers who devoted their lives to studying immunology, myocarditis, vaccines and other issues that affect our transplanted lives.

By Candace Moose, Co-Founder

Navigating the Emergency Room

For the 5^th time in the past two years, I was admitted to the hospital with yet another esoteric respiratory virus that hampered my breathing. I have tons of medications that have been prescribed for me to manage my asthma symptoms at home, but when my PO2 drops to a certain level and my tidal volume falls beneath my doctor’s allowable range, I must go to the Emergency Room.

Going to the ER is always a traumatic experience for me. First, you never know how long you are going to be there. At my hospital, where the beds are almost always full, you could be there for several days. I always assume I’m going to be admitted, so I pack of suitcase with essential items: a mask, my phone charger, my bathrobe which can act as a blanket or a pillow, my meds, slippers, toiletries, bottles of water and some packaged snacks. In different parts of the ER there is no cell phone coverage, so during COVID, your family left you in the ER waiting room and then didn’t hear from you for sometimes days before you were transferred to a room upstairs somewhere. Meanwhile, no one is filling a pitcher of water at your bedside, but in my admission to the ER most recently, I found the ice machine which I could refill myself, so at least I was hydrated. First, I was placed in the hall, then put into a two-bedroom designed for one patient, with one call bell for the nurse and one TV control, which was already in the possession of the other patient. Oh, also when packing your suitcase, pack a whole lot of patience. As a nurse and immunosuppressed transplant patient, I was frightened of the variety and severity of obvious illnesses around me, but I tried not to let my mind wander to the “what ifs”. I keep reminding myself that I am in one of the most renowned hospitals in the most advanced country in the world. As grateful as I am, I think it could be done better.

However, let me reassure you that the ER is well staffed and everything that is ordered for your emergency care is delivered professionally and quickly. If you are still not okay, speak up, let somebody know. Your needs will be rapidly addressed.

Eventually, I was transferred to a private room upstairs because I was considered infectious. While writing this I realize now how insensitive I was not to realize I was the dangerous one to many of the other patients. Forgive me. When I arrived on the floor, I had been awake for ten days, coughing, taking medicine to help me breathe through the night. Laying down made me cough more.   It was 6 am. I did what any other self-respecting patient would do, and offered the very sharp Nursing Assistant who got me set up in my new room, the deed to my house for a cup of coffee. She was thrilled and asked to see pictures of what she would soon own. I said, “Oh, by the way, it comes with a hypo-allergenic dog and a wonderful husband.” She definitely didn’t want the dog and wasn’t sure she wanted the husband either. I told her she may want to wait to decide until she met him because he’s really good looking. We laughed every time we crossed paths over the next five days.

I’ve been at this for 22 years. It’s never easy but when you can start laughing at the little stuff, it helps to cope with all the big stuff that is not going right. In this flu, COVID, RSV, and virus-ridden holiday season approaching, I wish you health and laughter!

PS: If you need me, I’m available to talk. Contact the Myocarditis Foundation office. I’m pulling for you.

Sending all my love,

Candace

Never Forget

September is my birthday month. 22 years ago, on my birthday, I was in the Critical Coronary Care unit in northern Manhattan, catastrophically ill, receiving intravenous chemotherapy. The doctors were not sure I would live through the night. I remember every detail of that day, even so many years later. However, what was happening to me, was unimportant compared to what was happening downtown the following day.

The staff let my husband spend the night in the chair next to my bed because it was my birthday. Jim turned on the television the next morning, and we watched the planes hit the World Trade Center towers. All of a sudden, the chest pain I felt was not cardiac in nature, but rather a physical manifestation of grief for the overwhelming loss of lives that happened that day. I prayed for the country and for our President. Every year since, the feelings are the same. In the midst of our personal tragedy, 2753 souls perished following a stunning act of terrorism. The day devolved from there, revealing multiple coordinated attacks.

As a patient lying in a bed in one of the most revered medical institutions in the country, not only did I not know whether or not I would live, I also didn’t know if our country was at war. All of the other patients in the CCU were moved out of the unit to make room for survivors, I suspect as part of the city-wide Disaster Plan.

The authorities closed all the tunnels, bridges, subways and roadways leading in and out of the city and all phone lines were cut.  Jim was stranded sleeping on the floor of the Waiting Room for several days.  My family didn’t know if I had lived or died. My nurses however came to work every day past the roadblocks, past the military check points, away from their families, to care for me. I could never forget their professionalism, their courage, and their faithfulness.

I will never forget.

 Short Cuts

It’s a curious thing, being a transplant. I don’t know how to answer the often-asked health survey question, “What do you consider your current health status to be? “And the choices are excellent, very good, good, fair, or poor. If you’re asking me on a good day, I feel quite excellent. But am I? As a transplant, are you like everyone else, excellent in the absence of a crisis? When I go to an Emergency Room other than Columbia Medical Center, doctors are either scared to death of me or confidently casual. I’m afraid of both. They either over or under medicate, both have the potential to be life-threatening to me. I had a local ER instruct me not to come back, stating that their focus was not to treat a complex patient like me. I appreciated their honesty.

I’ve spent 50 years of my life being like everyone else, and 22 years being a “complex” patient. Things that normal people are casual about, I can’t even consider. I’m tossing around the idea that I may not travel by air anymore. Between crowded terminals and planes, I just don’t belong in such close quarters. I easily get really sick. Another example is drinking alcohol.  I used to enjoy wine, or a margarita. Now alcohol makes me sick. I’m on so many toxic drugs that my system just can’t handle it.

So many healthy people want to bypass signs of aging; for example, using dermatology medications and procedures to make them look younger. Or medical or surgical interventions for weight loss. We do put on weight when we age. We’re less active; in my case my fear of falling interferes with my independence. But wrinkles, and weight gain, and many other issues are normal conditions of an aging body. My astute five-year-old grandson observed that I was more jigglie and wrinklie than his mother. Can’t argue with that.

Aging as a transplant is a really good thing; the alternative, not so much. Potential transplant recipients go through rigorous presurgical physical, mental, social, and financial screening to determine if they can handle the transplant life. It isn’t easy, even though we make it look that way. There is no half-way. There are no short cuts. You’re either in or out. When issues pop up at this age, I’m never really sure now whether they are a transplant issue or one that occurs in the normal course of aging.

I spoke to a transplant cardiologist friend of mine who predicted that at some time in the future they would no longer perform heart transplants because artificial hearts and other mechanical devices will be perfected. No immunosuppressive drugs. That is really something to look forward to.

The Myocarditis Foundation emphasizes that heart transplants are not a cure for myocarditis but rather a treatment, the only treatment available for the sickest patients. Their work must continue until a better solution becomes standard of care. Please support the ongoing cause.

For me, as long as I keep my eyes on heaven and my heart focused on helping others, with my family, friends, and my Advanced Cardiac Care Team by my side, I’ll be okay. My Grandfather, who I adored, used to say I was “solid”. I never asked him exactly what he meant; solid physically (which I am) or emotionally (which I am also). I’ve been tried and tested, sometimes beyond my ability to cope at the moment, but I’ve rebounded, recovered and persevered. I wish you strength.

Mind and Body Connection

Years ago, when I was in CCU waiting for/hoping for an organ, in addition to all the heart failure drugs, I was placed on intravenous chemotherapy to treat the Giant Cell Myocarditis. Because I was afraid of it, I listened to a meditation tape via headphones, while it was being infused. I imagined the medication was coming into my body, and like Pac Man, was eating up the lymphocytes and Giant Cells that we not supposed to be there. I pictured stars and light being infused into my body to bring me health and healing. There was no other way for me to live as the medication was intended to try to keep me alive long enough to receive a transplant; a bridge to transplant, not a cure. Dr. Cooper’s prior research had revealed this truth. Sometimes we have to imagine and believe that the medicines that make us sick were prescribed to help us.

I believe that how we think about our medications, procedures, hospitalizations, and complications may affect the outcome. We stumble, we fall, we feel afraid, but we pull it together and get out heads on straight. Otherwise, the uncertainty, the constant threat to our existence, and the discomfort will overwhelm us and interfere with our ability to cope, and in consequence, interfere with our ability to experience the joy and gratitude for the extended life we have been given.

I make up stories about the pills I take daily. Some of them seem to sing. I have favorites, particular shapes or colors. I happen to love gummy vitamins because I get to eat candy without guilt. Conversely, the calcium supplements I don’t like. They’re chalky, large and dry, difficult to swallow. I usually figure out pretty quickly which new drugs I can’t tolerate. I got GCM because of an autoimmune reaction to vaccines, so over the years, I’ve had lots of reactions to lots of drugs which had to be discontinued. Your doctor relies on you to report everything untoward. Some of my common reactions: cramping in extremities, insomnia, weight gain, fatigue, nausea, etc.

Recently I was hospitalized for a serious viral respiratory infection. My treatment involved lots of steroids which are hard on your stomach. I fell the day I came home from the hospital and broke a rib, extending my recovery. I experienced gastrointestinal distress beyond my ability to cope, leading to a consultation with a gastroenterologist. He prescribed another pill. I didn’t have a lot of hope for this pill. In fact, five days into taking it, I wasn’t any better. But then I not only improved, I realized I was better than I had been for twenty years. I was amazed that a long-standing discomfort could be resolved, which put my head back on straight. I’ve been a much happier person since.

What We Wish Were True

One of my dearest friends sent me a book for Christmas entitled, “What We Wish Were True”. I didn’t get to the book right away, but the title alone prompted much thought. The book is an autobiographical narrative about a young mother, Tallu Quinn, who has been diagnosed with a terminal brain cancer who struggles to reconcile her faith with her advancing disease and early death.

She articulates many of the same things I felt during the catastrophic phase of my illness 22 years ago. The loneliness and isolation of a critical illness, the awareness of a failing body, the abject sorrow of leaving those you love, the unfairness of an early death, and the suffering caused by caustic meds and painful procedures. Yet through it all, and within all, the author held an acute perception of love surrounding her, and beauty in the most ordinary things.

I wondered, what do we wish were true?

Perhaps most of all for folks who are victims of myocarditis, we wish we got to live in a world without pain, suffering, and loss: when we didn’t have to fight with insurance companies to cover the cost of our meds and procedures, or when we weren’t continually grieving an empty seat at our table.

We wish we were healthier. We wish that those who have passed were still with us.  And we wish time would go backward to when life was simpler or happier. There is a big, bold black line between our pre-myocarditis lives and our post-myocarditis life, a moment in time when everything changed.

From a global perspective, we all wish there was a cure for myocarditis. We wish that cure had come in time to save our loved one or prevent us from suffering the pain of surgery or dealing with the uncertainty of waiting for an acceptable organ.

From a societal perspective, we might wish we weren’t having to cancel every event because a pandemic is looming and we are at risk of exposure due to immunosuppression, or we isolate because it seems we are the only ones who simply cannot not move on from our loss.

From a medical perspective, we wish drugs always worked, doctors were all compassionate, there were always enough nurses and beds available when we need to go to the hospital and that there were lots of drugs without deadly side-effects in the pipeline to help us.

But what is true?

That we have an appreciation for life, for ordinary things, for living in the moment, for the people we love, that we have an amazing capacity to embrace joy and that we live in a perpetual state of gratitude for our donor families.

That we have the comfort and fellowship of a family:  a church family, a work family, a friend group, and at the very least, a medical team that stands behind us at every turn.

That there is a sincere generosity of spirit, compassion, kindness, and community when in the presence or conversation with other myocarditis victims.  We speak honestly and openly to each other about our trials and tribulations and find comradery and support there.

While we try to cope with the reality of our lives and try to move on while not drawing too much attention to ourselves, the Myocarditis Foundation continues to work for a cure, funding research, keeping the public informed of new information on myocarditis, and supporting patients and families. While life continues to spin unpredictably around us, the Myocarditis Foundation is pressing on toward a brighter future.

Twenty Years

A lot has happened in the almost 22 years since my heart transplant; some indelible, some forgettable. 2001, 911 happened while I was in the hospital in CCU pretransplant in Manhattan. 2003, the space shuttle Columbia made its first and last flight. 2005, Hurricane Katrina hit the southeast United States. In 2009, President Barrack Obama was inaugurated. 2012, Queen Elizabeth II celebrated her Diamond Jubilee. 2019, Tiger Woods claimed his fifth Masters title. In 2020, John Lennon’s Imagine was remastered and released. 2020 was heavily defined by the COVID pandemic, impacting every part of our lives.

In 2001, Dr. Les Cooper and I started working on the Myocarditis Foundation, officially receiving IRS approval in 2005. From my perspective, one of our greatest achievements has been in making “myocarditis” a household word. Now in 2023, in part due to COVID, not only the word but a rudimentary understanding of what it means permeates our culture. Dr. Cooper could articulate all the medical advances. In summary, we accomplished, with your help, almost everything we set out to do, except find a cure. So, our work continues.

In the past almost 22 years, some of my newer doctors look like they are the age of my children, yet I continue to be impressed with their skill in the practice of medicine.  (This generation of doctors knows something about myocarditis.) Many of the doctors who have been with me from the beginning of my illness are now retired. Drug therapies haven’t changed much in 30 years. However, advances have been made in mechanical devices as well as in blood surveillance tools to monitor allograft health. New drug therapies without all the dreaded side effects, both long and short term, are on the horizon, but the approval process is very long.

Personally, these years have flown by; every year goes by even faster. For us transplants, the passage of time is both a blessing and a concern. Amy Silverstein passed away this week- 35 years out from two consecutive heart transplants, a few short weeks from the date her essay was published in the New York Times. If you go to her website, amysilverstein.com, she leaves a legacy of transplant advocacy which she describes as, “…an essential basis from which to address the longstanding unfavorable positioning and underfunding of research by NIH and FDA “. She suggests that you can impact research funding by sharing your #truthintransplant story with the largest organization of transplant professionals (American Society of Transplantation) by filling out the form on her website.

Maybe it is time for us to speak up.

The Gratitude Paradox

As so many of you are well aware, I’ve recently been hospitalized with a respiratory virus. Those most at risk to serious outcomes of this virus are babies and immunosuppressed individuals. It’s been a very trying time for me and my family, coping with both the illness and the side effects of the medications used to treat the illness. This is not an unusual occurrence for heart transplant patients. We are always at risk for infections, rejections, vasculopathy and cancer due to the immunosuppression. Every hospitalization forces us to confront our very existence.

On Tuesday, April 18, 2023, the New York Times published an Opinion/Guest Essay entitled, “My Transplanted Heart and I Will Soon Die”, written by Amy Silverstein, the author of Sick Girl. Amy has lived 35 years with two different donor hearts. She honored her hearts with “compulsive compliance” with the strictest interpretation of transplant protocols. Despite maintaining “sparkling cardiac health”, she is dying of metastatic lung cancer, a consequence of long-term immunosuppressive drugs. Her essay is a cry for better medications, greater life-expectancy from current protocols which she describes as antiquated and more attention to utilization of organs she feels are being wasted given current policies.

I’ll let you find and read the entire article if you wish. I would recommend it because she has a lot to say about the state of transplant medicine which impacts us all. She points out a pressure for transplant recipients to not express, much less demand medicines that allow for a longer, healthier life. She feels like this narrative discourages transplant recipients from talking freely about the compromising, life-threatening side effects of medicines we must take. She calls it “the gratitude paradox”.

My take on this is that besides our closest family and friends the “miracle” narrative prevents the public from really understanding how difficult being a transplant really is. It must be easy to live this way because we make it look that way. It isn’t. I am consistently unreliable in my attendance. I’m often in isolation at home for weeks at a time. And I don’t sleep well given the drugs. My family worries, my church supports me in prayer and my best friends thankfully text often.

Amy closes her article by sharing a conversation with her doctor, who sat in front of her crying upon sharing the diagnosis and prognosis of her cancer. With wry humor, Amy said, “I sacrificed my whole body for this heart. I kept her perfect to the end.” This forces me to say that it doesn’t seem fair.

It is anathema to my personality to see my transplant as anything other than a miracle. However, I can’t help but thank Amy for her last-ditch efforts to challenge the heart transplant system, to tell her truth, and for trying to make the transplant world better for those of us still fighting for every day and those to come;  I wish her Godspeed.

Life-Saving Transplant Drugs: The Bane of Our Existence

Every Monday for the past 21 years, I’ve “poured” my medications for the week into my 7 daypill dispenser. The dispenser is a lifesaver because it helps me track whether I’ve taken my drugs or not.  On any given day, depending on how healthy I am, I take a minimum of 17 pills in the morning and another 10 pills twelve hours later. I also have a cadre of “prn” meds to take “as needed” to help me through minor crises and a bunch of inhaled medications to treat an asthma exacerbation or respiratory issue. If you are new at this or the least bit confused about whether your symptom is minor or not, report it immediately to your doctor, and wait for instructions.

There are yellow warning labels on the side of the medication bottles that say, “May cause nausea (check), dizziness (check), diarrhea (check); or there may be other warnings, “Don’t eat grapefruit”, “ Don’t drive”, “May decrease effectiveness of birth control”, “Avoid pregnancy”, “Take with food or milk”, “Avoid contact with people with contagious diseases”, “Avoid exposure to sunlight”, “Check with doctor before drinking alcohol”, or “Do not skip doses”, to name a few. Take all those warnings seriously. Just for your own edification, ask your pharmacist for the pharmaceutical package insert, which lists whole host of other warnings, like “weight gain” (check), “insomnia (check) and even “psychosis” (sadly, check). If the side effects upset you, scare you, or leave you feeling insecure, call your transplant team.  The most important point I want to make is that if you are having symptoms of any kind, that are NOT listed on the bottle or the insert, it doesn’t mean those symptoms are not happening to you-report them to your doctor anyway and stand firm in your reporting. Medical practitioners are constantly learning from our experiences.

Pharmacists will often change vendors and buy the cheapest generic form of the drugs. I am assuming they are more profitable. Many of the drugs we take are manufactured in third world countries that may or may not behave the same inside of you. I get tinnitus, ringing in the ears, from some generic brands of drugs by the same name. You’ll have a fight on your hands with your insurance company if you insist on taking the proprietary drug made in the US, because it costs more, but sometimes you must engage. Your transplant physician will help.

The biggest frustration with tracking the drugs is that the refills don’t come due on the same day necessitating frequent trips to your pharmacy. Lots of my drugs are on automatic refill but sometimes that doesn’t always work. Make friends with your pharmacist. Let them know when your refills are urgently needed, meaning you are completely out or let them know if you have a little leeway. Most drugs they can get by the next day, so plan ahead. We as transplants can’t afford to not take these drugs as directed. Our lives depend on it.

Candace Moose, Co-Founder of the Myocarditis Foundation

New Year, New You

They say it’s important to have goals. My primary goal these past 21 years has been survival, and secondarily to leave the world a better place for future generations. The clock starts again in the New Year for all maintenance protocols that quantify my health and verify that all is as good as it can be. So, scheduling begins: Dermatology appointments to rule out skin cancer, quarterly visits with my Transplant Cardiologists, Dexa Scan to rule out osteoporosis and follow up visit with Endocrinology, Mammogram to rule out breast cancer, Opthalmology to check for glaucoma and cataracts which are common side effects of transplant drugs, Interventional Cardiology visit to check defibrillator device, every five years with Gastroenterology to schedule a colonoscopy, to name a few.

The New Year is also a great time to re-evaluate and reset your diet and fitness goals. Depending on bloodwork and cath results, which determine whether your commitment to fitness and diet is required or imperative. I find it very hard for me to keep a fitness routine, as overuse of a repetitive exercise often leads to injury and a stint with Physical Therapy. It’s also very hard for me to keep a stable weight, given medication, balance issues, susceptibility to infections, and issues that side-line an exercise program, my best intentions to move are easily compromised.  The overall goal, however, is to just keep trying, adjusting, and adapting. According to the wisdom of Winston Churchill, “Never, never, never give up.”

Then there are New Year quality of life type goals: travel, hobbies, special celebrations, new jobs. I am the eternal optimist. I keep making travel plans that ultimately get cancelled because of the virus or injury or transplant issue du jour. But again, don’t give up. Keep trying.

My sister recently passed following a long battle with breast cancer. In those 36 years, she made every minute of her life count. She climbed mountains, hiked, camped, and kayaked as often as she could. I’m a hotel person, myself, not a camper. The moral of the story? Make it count. Do everything you can to become or get healthy. It’s a gift that requires work.

Holidays 2022

This holiday season I wish you peace, peace in your body, your mind, and your spirit. There have been times in my transplant life when things were not peaceful. Sometimes it’s due to medications; medications that don’t let you sleep, make you irritable, or make you hungry. Some holiday seasons are filled with worry; having had tests and awaiting results, getting test results that indicate one of your other organs is not peaceful or perhaps you feel unsettled about an as yet unidentified health issue.

Sometimes holidays are difficult because of life stressors that have nothing to do with being a transplant; loss of loved ones, financial instability, or relationships gone awry. Not all holidays are merry and bright. If they are not, and you need help, reach out; there are always staff, professionals, hot-lines, and emergency personnel available to help. Share with someone that your need help.

However, if you are good, reach out to others with a message of Holiday cheer. Make someone else merry. Help others; donate to Food Banks, volunteer, or walk dogs at an animal shelter. Nothing helps me forget about my own issues like doing something for others. Foster peace in your spirit and in your life. I believe it contributes to good health. Peace is a valuable commodity, perhaps the most valuable. So Happy Peaceful New Year!

Candace Moose

Co-Founder The Myocarditis Foundation

The Challenges of the Holidays

November 28, 2022

There is no question, the holidays are my favorite time of year. I love the lights, the decorations, the gift giving and receiving, the hustle and bustle, all the holiday-themed movies and of course the spirit of love that pervades the very air we breathe. However, the holidays present many challenges to victims of myocarditis. But try as we might, all holidays don’t work out as planned. For those who have experienced loss, there is always an empty seat at the table.

My first holiday after the heart transplant, to be honest, was a sad affair. I think we were all suffering from PTSD that would take years to resolve. I went home from the hospital on IV chemotherapy which had to be discontinued in early December because my white cell count was too low, which meant no family gatherings. We are a loud and ruckus group, my family, with a penchant for fun and overindulgence, so to add insult to injury, after all we had been through, a quiet affair with just my husband, son, and I, seemed unfair. Yet, I was alive, while others had not survived. Even today, as I hang ornaments on my tree, I think of the parents of Brad, Rhett, Andy, Danielle, Sarah, Michael, and far too many others, and it breaks my heart. Thinking of them motivates me give more of my time and resources to the Foundation.

17 years later, I was hospitalized in isolation during the holidays in New York, with an esoteric, contagious respiratory virus. When I looked out the window of my hospital room on Christmas day, not one car was parked either side of the street. It was apocalyptic. But it did snow, and that small thing lifted my heart. My husband was situated in a family hospital housing room upstairs. He too became desperately ill as the week progressed, diagnosed in the ER with a respiratory virus; not the same one I had, so we couldn’t see each. It was a comfort just knowing he was there. Our children and grandchildren missed us terribly, and we them. I remember turning on my TV to watch the burning log and listen to Christmas carols. I remember feeling so grateful that I had a family who loved me, even if from afar. The Holidays, a season of love, near or far, on earth and in heaven.

The emotional and physical toll a catastrophic disease like Myocarditis takes on both the patient and their families are immeasurable. The physical insult takes time to resolve but the emotional toll, especially for those who have experienced loss, is immeasurable. The Myocarditis Foundation is here for you. We have been working for many years to educate the public about this once considered rare disease. Help us collect data for publication by participating in our Emotional Toll study, conducted in partnership with the Mayo Clinic. Participation information can be found on our website: myocarditisfoundation.org or by calling our Executive Director Gen Rumore. Happy Holidays, dear ones.

My Good Life

October 25, 2022

Next month I’m headed to Mayo Clinic in Jacksonville, Florida, to visit my old heart, which resides in the office of my Myocarditis Foundation Co-Founder, Dr. Leslie Cooper.  I donated my old heart to his research when I was well enough to understand the contribution his research meant to my recovery. I remember asking Dr. Deng when I woke up after the transplant surgery if it really needed to be replaced. Somehow, after all I’d been through, I had trouble believing it had failed me.

For fifty years, I had depended on that heart, and it had never let me down. My father always said I wore my feelings on my sleeve, but the truth was, my heart took the lead in all decisions made in my life up to that point. My heart had served me well. It chose wisely my husband of 50 years. It guided me in my career choice of becoming a nursing. I chose a host of wonderful friends with my heart, and they chose me back because of my heart. Several people said to me after the transplant, “I can’t believe they had to replace your heart, because your first one was so beautiful!”.

Mine is the kind of heart that cries for joy: when an Olympian wins a medal, when a marathoner finishes a race, when an actor wins an Academy Award, when someone performs an unexpected, random act of kindness. Mine is the kind of heart that cries when people get married, or a baby is baptized. My heart believes that good always wins in the end.

I’m a believer in the power of love to save, to heal, to restore, and to forgive. The heart is the organ of love, in poetry, music and art. Yet in all those years, I’d never seen my damaged heart. And now is the time. I have a lot to thank it for. I expect the experience to be an emotional one, but a healing one.

The Aging Heart

September 26, 2022

October 1^st is the 21^st anniversary of my heart transplant. We call it our rebirthday, the day we were given a second chance to live. What a wild and wonderful ride it has been. I’ve done everything I could do over these past years to keep this heart healthy medically, physically, and spiritually, and I’ve been given so much. But the heart is aging anyway.

It’s curious to find myself at this point in life even though I knew all along that it was coming, that there was an endpoint. How do we deal with it? I suggest no differently than we’ve handled our transplanted life: with positivity, with courage, and with an understanding that we never were in control anyway. We stumble, we fall, we get discouraged, we struggle to hold up under treatments and procedures that make us crazy, cause us pain, or make us sick. Sometimes, the worst parts are temporary. Ask for help, be that for medication, support, or prayers from medical professionals, friends, and churches. Count on those you can count on in your life.

No one can really understand this transplant life except those of us who live it. But you are not alone. Your transplant team stands ready to stand with you. Don’t hesitate to reach out, in fact, fight to be heard if you must, but speak up.

Transplant is not the best answer to treat myocarditis. It was the only treatment available to us at the time. It was never intended to be a cure. It remains a temporary solution. More diagnostics leading to early diagnosis and more treatments administered earlier in the disease process before the heart is damaged beyond recovery, is the answer. Give generously to The Myocarditis Foundation. Help us fund more research.

21 Years as an Advanced Heart Failure Patient