Living with heart failure and love to camp? Here are 6 tips for your next adventure

julian-bialowas-ilkTnuMunP8-unsplash.jpg

 Camping has long been associated with health benefits such as lowering stress and improving emotional and physical wellbeing. It gives you the opportunity to swap bustling city life for the relaxing pace of nature, to sleep under the stars for a weekend, or perhaps a little longer.

 Lucky for us, Canada is home to a plethora of campsites with fantastic facilities. This means you don’t have to go far from home to immerse yourself in the great outdoors and spend quality time connecting with friends and family.

 If you or someone close to you has recently been diagnosed with heart failure, you may be wondering whether or not you can go on camping trips. The answer? You certainly can. Living with heart failure doesn’t have to hold you back from enjoying the things you love. You can still live a full life when you effectively manage your illness and recognize your symptoms.

 There’s still plenty of time to reconnect with nature and embark on a camping trip this summer. Before you go, we’ve rounded up six tips to help you get organized and ready to enjoy a refreshing break outdoors.

 Invest in quality camping equipment

 Comfort must be a priority during your camping trip, and investing in quality equipment can help ensure this. Visit stores such as Mountain Equipment Co-op or Canadian Tire and ask staff for product suggestions that best suit your needs. Start with a spacious, weatherproof tent, an air mattress, an adequate temperature sleeping bag, a camping stove, and go from there. Organizing the equipment you’ll need ahead of time gives you less to worry about during your trip. 

 Choose a campsite with plenty of shade

 Extreme heat can put your health at risk, regardless of your age. It can cause undue stress on the heart as your heart may not be able to work harder to regulate a cool body temperature. For this reason, it’s best to choose a campground and campsite with substantial tree coverage. This means your sleeping and cooking areas will be shaded from the sun, keeping you cooler for longer. 

 Pack medication coverage

 Before you depart for your camping trip, it’s important to make sure that you have enough medication with you. Carrying these items in a backpack will allow you to easily access them when you need them. If it helps, you can set reminders on your phone to alert you of the time to take your medication. It’s helpful to have a letter from your doctor in your bag at all times which outlines your prescribed medication and the dosage.

 Be prepared for weather changes

 Before your trip, be sure to check the weather forecast so you have a general idea of what to expect. During summer, think of packing light, comfortable clothing for during the day and warmer items for nighttime. The weather can change in an instant in the great outdoors so it’s key to have all grounds covered. Bringing a sun hat will give you extra protection from the heat during daytime activities and a toque will provide warmth at night. Sunscreen and insect repellant should also be at the top of your packing checklist.

 Focus on healthy eating

 It’s not always easy to maintain your regular diet when you’re away from home, but a little planning ahead of time makes a big difference. Perhaps you’ll want to prepare snacks and staples such as rice or pasta before you leave and cook everything else on the campsite — the easiest way to make a nutritious meal is the best option. Ensure you’re getting enough fluids and stop by a store near the campsite to buy water if there is no drinking water at the campground. Limit your alcohol consumption or avoid it altogether. If you’re diabetic, carry a source of glucose with you in case you experience a drop in your blood sugar levels.

 Assess hiking trails

 One of the wonderful things about camping in the wilderness is the abundance of nearby hiking trails. Trails are generally graded based on the level of difficulty so it’s crucial to assess the level of each one and read park notices before you commit to hiking a trail. Don’t feel pressured into taking part in activities that are beyond your level of comfort, and instead, focus on protecting your heart. If you need to take regular rest breaks in your tent or ask for help, be sure to do so.

 Embarking on a camping trip this season could be the break you need to recharge, disconnect from social media, and help your sleep cycle sync up with nature. Make sure to sit down with your healthcare team before you plan your trip to address any concerns you have, and remember to let them know the dates you’ll be away. After that, happy camping!

IF YOU’RE LIVING WITH HEART FAILURE, OR SOMEONE YOU LOVE HAS THIS CHRONIC ILLNESS, CLICK HERE TO VISIT OUR CLOSED FACEBOOK SUPPORT GROUP AND JOIN THE CONVERSATION.

 

5 factors to consider before exercising outdoors this summer

photo-1507761906261-d31a39975ce4.jpg

Summer brings longer, sunshine-filled days which entice us to spend more time outside. We appreciate the pleasant shift in the weather (especially after long periods of rainfall), howbeit, it’s necessary to exercise caution being physically active when the temperature and humidity rise.

Exercise helps strengthen your heart so that it works more effectively. It increases the force with which your heart has to pump blood to all parts of the body, and it helps promote a feeling of well-being, adding to your quality of life. The Heart and Stroke Foundation explains that when exercise is planned and controlled, it can strengthen the heart muscle just as it does for other muscles.

 On the other hand, when exercise is unplanned or excessive, it strains the heart’s ability to adapt. It’s vital to discuss your physical fitness plans with your doctor or nurse as each individual with heart failure has unique needs and limits, and your physical activity regime has to be designed around what will work for you.

 During summer, you may have to alter your exercise program to ensure that your heart failure symptoms don’t worsen as a result of undue, heat-related stress. With that being said, here are five things to consider before exercising outdoors this summer:

The time of day

Whether you’re going for a walk in the park or joining an outdoor yoga class, the time of day affects you during summer. To avoid periods of hot, humid, and hazy weather, some experts advise exercising when it is cooler outside; early in the morning or late at night. "Exercise at the time that's most convenient and the place that's most comfortable for you,” Dr. Adolph M. Hutter, professor of medicine at Harvard Medical School, said in a Harvard Health article.

When the temperatures rise between 12 and 3 pm, staying indoors or inside an air-conditioned facility will be a better, safer option. Having heart failure shouldn’t restrict you from doing the activities you love, but it does require a little compromise and dedication to managing your illness. 

How you feel

If you’re feeling unwell before exercising, don’t force yourself. Instead, be realistic and reschedule or find an alternative. Listening to your body will help you make the best decisions for yourself at that time. If you’re feeling up to doing physical activity, drink plenty of fluids to stay hydrated before, during, and afterwards. Harvard Health suggests sports drinks if you sweat a great deal as they contain electrolytes — minerals such as potassium, sodium, and magnesium, that can replenish what you lose from sweating.

“If you take medications for high blood pressure, especially diuretics, ask your doctor if you should adjust your dose on days you plan to be outside in the heat.” During exercise, if you feel dizzy, nauseous, have a headache, experience rapid breathing and heartbeat, or extreme thirst, immediately move to a cool place and drink water. 

The clothes you wear

Your body is not used to extreme heat at the beginning of the summer, and you are also not acclimatized if you don’t exercise regularly during hot weather. Because of this, Health Canada states that it’s important to know what the temperature is outside so that you can modify your physical activity as needed. The clothing you wear is also salient during summer to ensure your comfort and prevent overheating.

Wearing lightweight, light-coloured, breathable apparel, and a broad-brimmed hat will help protect you when you’re outside and help keep your body temperature regulated. Darker colours attract more heat from the sun so it’s best to avoid wearing them during peak sunshine hours.  

The air quality

Before you leave your house, check the Air Quality Health Index (AQHI) in your area. Health Canada reports that pollution tends to be higher during extreme heat. When active, you are more sensitive to air pollution because you breathe deeply and allow more air to enter your lungs. If you are in an area where mosquitoes are active, make sure to protect yourself with insect repellent and follow the manufacturer’s directions.

Time to recover

Be cautious not to overdo it when exercising outdoors this summer and allow your body to recover after exposure to heat. Feeling tired the following day usually means you over-exerted, which is not something you want to happen. It’s imperative to allow the heart to rest and ‘catch up’ with the body’s demands on it. As the Heart and Stroke Foundation puts it: “Resting does not have to be sleeping. It can be a quiet time of listening to music, relaxing, or reading.”

Consequently, energy conservation helps your heart by saving up energy for activities you plan to do the next day or the next week. This might include planning a vacation, preparing for a family visit or a project at work, or organizing activities with your loved ones. Whatever the task, only do what you feel is within your limits, one thing at a time.

IF YOU’RE LIVING WITH HEART FAILURE, OR SOMEONE YOU LOVE HAS THIS CHRONIC ILLNESS, CLICK HERE TO VISIT OUR CLOSED FACEBOOK SUPPORT GROUP AND JOIN THE CONVERSATION.

3 tips for balancing work and maintaining good health with heart failure

Each individual will experience heart failure differently, depending on their symptoms and the frequency with how they affect them. As a result, you can’t predict how things will be following a heart failure diagnosis. But many patients can and do lead a full and normal life when they manage their illness and focus on self-care.

More than half a million Canadians are living with heart failure and there’s currently no cure for this chronic illness. While the illness typically affects people later in life, it can affect all ages, and each patient case is unique. In a recent blog post, we spoke about raising awareness of the signs and symptoms of heart failure, and this is especially important as early diagnosis of heart failure ensures optimal treatment.

Discovering that you have heart failure is not an easy diagnosis to take on board. It’s natural to feel worried about the future and how things will plan out. However, it’s important to take things one day at a time to avoid undue stress on the heart or lead to feelings of anxiety or depression. We’ve rounded up some tips that can help you find the balance that works for you during your journey with heart failure.

Assess your work situation

 The University of Ottawa’s Heart Institute explains that not everyone who is diagnosed with heart failure needs to stop working. “In fact, continuing to work may help you feel better by offering challenge, time with other people, income, improved health and mood.” Nonetheless, it’s best to wait until your symptoms have stabilized and your medications are optimized before you consider returning to work. The type of work that you do will also affect when you return to work.

If you work in an office you may be able to return to work sooner than if you have a stressful or physically demanding job. The University of Ottawa’s Heart Institute recommends returning to work gradually as it will be less tiring if you start working part-time, at least at the beginning. “Your doctor or vocational counsellor can help you determine if and when you are ready to go back to work and if you are able to return to your regular job.”

At work, listen to your body and take regular breaks to get fresh air, walk around, and stay hydrated. It’s important that your employer understands your situation and that you find the right system for you. Similarly, if you are self-employed, allocate time for breaks in your schedule and only take on the level of work within your capabilities. Strong working relationships and communication with clients and employers will make things a lot easier.

 

Schedule time for exercise

Heart failure can change the types of muscle fibres in your body and decrease the number of fibres for endurance. Thankfully, exercise allows the body to become more efficient in its use of oxygen. “A muscle that is exercised regularly uses less oxygen to do a job than one that has not been exercised,” as reported by the University of Ottawa’s Heart Institute. Making exercise a part of your regular routine can help you feel better and reduce some of the symptoms associated with heart failure, such as shortness of breath and fatigue.

You don’t have to do strenuous workouts for exercise to be valuable, and walking is one of the most effective exercises for improving your health. Swimming and doing yoga are also fantastic exercise options that can help lower your blood pressure when practiced regularly. Make sure to start and finish all exercise sessions with slower walking for warming up and cooling down, while also staying hydrated. 

 

Look after your mental health

If you feel helpless and you are struggling to cope with heart failure, please, don’t worry — you are not alone. Ongoing feelings of anxiety or depression can interfere with your relationships and daily activities which is why it’s important to talk to your doctor, nurse, social worker, or loved ones, if you are feeling this way. Identifying what causes you stress and developing therapeutic plans to manage those times can help. You can find out more about therapeutic ways to cope with heart failure here.

Seeking support from heart failure networks and sharing your story can also help you to understand that others are going through a similar experience. Our closed HeartLife Foundation Facebook Support Group is always there when you need it. Online resources and support options are also available from the BC Heart Failure Network.

Remember to make time to focus on self-care and finding the right balance that works for your unique personal journey with heart failure.

IF YOU’RE LIVING WITH HEART FAILURE, OR SOMEONE YOU LOVE HAS THIS CHRONIC ILLNESS, CLICK HERE TO VISIT OUR CLOSED FACEBOOK SUPPORT GROUP AND JOIN THE CONVERSATION.


Meet Jillianne Code

HL_Apr15_5.png

A HeartLife Story

Accepting the inevitable truth is seemingly simple. As a patient recognizing the outcome of heart failure if left untreated was as simple as it comes – I could die. What's complicated, what's hard, is living with it. Is figuring out how to live with it. Figuring out what facing your own mortality means.

My story is long. My experience with heart failure vast. I can state the simple facts of what happened to me as I have done many times.

Simply. Plainly. My heart failure journey is as follows.

At 27 years old I was misdiagnosed three times, until an echo revealed I had an ejection fraction (EF) of less than 10% and blood clots in my heart. I was given 72 hours to live, diagnosed idiopathic dilated cardiomyopathy – of unknown cause. With medical therapy, I recovered to 40% EF and a few stable years. Suddenly, I had 2 strokes where again, a large blood clot had developed in my heart , with 28% EF an implacable cardioverter defibrillator (ICD) was implanted. I had three more years of relative stability. I experienced sudden severity of breathlessness and swelling in my ankles, my EF was down to 13%, I was hospitalized and given IV inotropes (IV medication that helps your heart pump) and I was listed for heart transplant in September 2013. In March of 2014, I had emergency Left Ventricular Assist Device (LVAD; artificial heart pump) surgery as it was deemed I would not survive another 6 months, followed by a difficult surgical recovery with 3 severe gastro intestinal bleeds, 2 coils to cauterize the bleeds my intestine. After another 7 months of waiting, I had a heart transplant in October 2014. I spent 8 days in an induced coma because of post-operative complications to the surprise of everyone, and when I finally woke I discovered I had severe delirium and muscle atrophy. Given antipsychotics for the delirium, I started to regain my strength by learning to feed myself and walk again. The pathology on my original birth heart revealed chronic active myocarditis – of unknown cause. Two years post transplant, I started having upwards of 20 heart attack like pains day and night with a clear angiogram in March 2017, I was diagnosed with coronary vasospasm – of unknown cause. While visiting family, I had heart attack December 26, 2017, followed by two full metal jackets (complete artery stents), my transplanted heart had developed fast acting cardiac allograft vasculopathy (CAV) more commonly known as chronic rejection – of unknown cause, where I was medivacced back to St. Paul’s Hospital in Vancouver, where I was emergency listed for re-transplant. I waited two weeks in hospital, where a match was found and I was re-transplanted January 23, 2018. Put on more aggressive anti-rejection medication to protect from CAV, I was hospitalized with shingles for 3 weeks in June because of my more severely compromised immune system.

I am now almost a year and a half from my re-transplant.

Coronary vasospasms began again in February, 2019. 

Cause still remains unknown.

Does my ‘heart and soul’ exist independent of my physical heart? 

This is a question that I grappled with when I was first diagnosed. And to be completely honest, after you have received the gift of a new life from another person, in my case more than once, this question is renewed as you wake each morning, as you breathe in every extra breath you are fortunate to be granted. My mortality greets me every morning as I say “Not today”.

My hearts have all been gifts. From my original heart I was born with, to the two donor hearts that have extended my life. I live in gratitude, humility, and with purpose.

It is because of my donor hearts that I have lived to experience a life that is truly extraordinary, so can I say that my ‘heart and soul’ exists independent of my physical heart?

The real question is, why should it? 

The one heart that has always remained true, is the complete love and acceptance of my husband, family and friends. This is my ‘true heart’ the one that will never die.

My ‘true heart’ has only grown in size, as each new member joins our community looking for support that has truly transformed my own heart failure journey.

I now focus not on my mortality, but on the hope for living with heart failure that has become my HeartLife. 



Meet Sharon Bray

Mid-December 2008:  It was sunny day in Southern California. 

I leashed up our dog for a quick midday walk around the block.  We walked at a brisk pace, rounding the curve at the end of our street to slow down for the climb uphill on the next.  I said "hello" as we passed our mail carrier and turned the corner to head back home.  We had walked only a few steps when I felt a sudden rush of light-headedness, something I'd experienced for a couple of weeks and reported to my family doctor.  

"Don't worry about it," she'd advised.  "You're probably dehydrated.  Drink more water."  I stopped to take a breath, then everything went dark.  When I came to, I was lying face down on the sidewalk, bleeding from the chin, my dog obediently sitting by my side.  Somehow, I managed to get to my feet and walk home.  I was unnerved enough to call my husband at his university office.  

"A funny thing happened while I was walking the dog. I passed out..."  My head began to buzz.  “Oh….” I mumbled, collapsing on the floor. 

I heard my husband's voice, "Sharon?  Sharon? I'm coming home..."  A few moments later, the phone began ringing.  I managed to get to my feet to answer it.  It was a 911 operator telling me the EMTs were on their way.

"Don't send them, please," I said. "I'm all right."  But I wasn't. 

Within moments six — I reiterate — six very good-looking young male EMTs burst through our front door while I, embarrassed and confused, attempted humour.  By the time they got me on the stretcher and in the ambulance, I knew something was wrong.  I was admitted for observation and tests, and three days later, a cardiologist came to tell me that I had been diagnosed with heart failure.  "You mean a heart attack?"  I asked, panicky and teary-eyed.  I had no idea what heart failure was, and I was frightened.  The next day I was again transported by ambulance to a cardiac care center to have an ICD inserted in my chest and admitted to a different hospital for three more days.  New terms, including dilated cardiomyopathy, atrial fibrillation, and ventricular tachycardia were added to my medical record. 

I'd become a heart failure patient.

No one had fully explained what heart failure was, what caused it, how it progressed, and or how it was, ultimately, associated with hospitalizations and mortality.  I'd already had a brush with near death as a teenager, and perhaps I was unwilling to accept what being a heart failure patient meant.  The brief and reassuring annual follow-up and doctor's oft-repeated "you're doing fine," allowed me to stay in denial.  I worked with cancer patients after all, many of them with terminal diagnoses, and I was humbled by their strength and courage.  The irony, of course, was that the seven weeks of radiation therapy I had undergone in 2000 as part of the treatment for early stage breast cancer was likely the culprit behind my heart failure.

That was over ten years ago, and as someone who continues to live with heart failure, I'm doing relatively well.  Two years ago, my husband and I returned to Toronto, and I had the good fortune of becoming a patient of Dr. Heather Ross, MD, a remarkable cardiologist and leader in heart failure care.  The level of care and information I now receive has increased substantially over what I experienced in California.  It was, I admit, a bit of a shock to discover that my heart failure had worsened, that I have thromboses are on a heart valve and lead wires of my ICD, and he number of medications I take more than doubled.  Periodically, I take a break from reading the research on heart failure, because it can easily depress me, igniting those little shadows of fear, the ones about early mortality.

But all in all, I am one of the lucky ones.  I dance (not well, but enthusiastically); I spend time with my Toronto granddaughter; I walk often, albeit not as fast as I once did, in this wonderful multi-cultural city, taking in the music, arts and culinary delights it offers.  I continue my work with cancer patients, better able now to understand the fears that come with a serious illness like cancer or heart failure.  I've served on a provincial committee on heart failure care and am now part of the Patient Partner program at Toronto's UHN.   And I write, exploring the lived experience of heart failure — not just the physical one, but also the literary, emotional and spiritual ones, just as I ask the cancer patients in my writing groups to explore the impact of cancer on their lives.  I have been creating a blog for this purpose (www.heartmusings.ca), hoping it might inspire other heart failure patients to write and share their stories.

I intend to live as fully as I can for as long as I can, caring for my heart as best as I can, but not taking myself too seriously either.  Laughter is also one of my medicines, and if you were to pass by our apartment door on most days, you might hear me belting out the beginning lyrics of a Johnny Cash song,  "I keep a close watch on this heart of mine..." ("I Walk The Line," 1957).

Meet Jackie Ratz

Before I share my story I must take a moment and thank HeartLife Foundation of Canada for supporting me. I was fortunate to find HeartLife early after my diagnosis of heart failure. I am so grateful for the information, opportunities, and sponsorship of my local projects. 

To hear my heart story, I first have to go back to 1994 when I was diagnosed with Non-Hodgkins Lymphoma at 24 (almost 25). I had been sick on and off for awhile, getting treatment for everything from bronchitis to allergies and pneumonia. I was misdiagnosed for about 8 months. During that time, I was loosing weight, having to sleep almost upright as I would cough when I tried to lay flat and was experiencing night sweats - all of which was being shared with my primary doctor. Finally, I was taken seriously by a different primary doctor (my doctor was on vacation) and he immediately sent me for a battery of tests. A chest X-ray showed there was a tumour (shaped like a small orange and lemon linked together) in my chest that was putting pressure on 25% of my heart. I was scheduled for an urgent MRI the following day. Right after the MRI was performed, I was told I would not be leaving the hospital. Instead I found myself in ICU for 5 days. I had a biopsy the day after the MRI to determine the type of tumour. I had to remain awake for the biopsy as my blood pressure and heart rate were too unstable to put me out. They also had to keep me at a 45 degree angle as I would start to cough uncontrollably when placed any lower. My circumstances did not make it easy for the doctors to help me. The results of the biopsy was clear: cancer stage 3. It was also determined that the cell type I had should respond to radiation so that was planned immediately, the doctors wanted to get pressure off my heart ASAP. The good news was that my cancer was caught it before it had metastasized. Based on the tumour location and cell type, my odds of survival were 40% at this point.

The ambulance ride that Sunday to another hospital where they opened the radiation lab for me was surreal. Everything happened so quickly - this was day 3 after not being diagnosed for 8 months. As I was marked and prepped for the radiation, the conversation around me was about how they could perform the radiation without me coughing. This was critical or they would hit my heart. The decision was made to have me sit full upright and not not move a millimetre during the procedure. The blast of radiation was successful and the tumour responded by shrinking almost 20%. Next up was 9 months of chemotherapy followed by 1 month of daily radiation. By the time all the treatments were completed, I was facing my 26th birthday, grateful to be healing and on the road to recovery. The only repercussions of the treatments discussed with me, was the likelihood (80% odds) of loosing my fertility. After 10 years followup and testing, I was finally told I was cancer free. The relief and joy I felt that day is burned into my memory. I had my life back. 

Fast forward 22 years to 2014 and my heart story starts. I was not feeling well after a particularly stressful period. I thought it was the flu: nausea, achy and tired. No pain. I had been having times of afib for months (actually, for years, but very infrequently) but did not recognize or know what it was back then. I had an appointment with my primary dr for my annual physical coming up so I thought I would see if I could move it up. As luck would have it, I was able to get an earlier date. It could not come soon enough as the overwhelming fatigue was brutal and, thinking it could be cancer, my anxiety over what was going on was building. 

After discussing my symptoms and reviewing my blood work, my doctor hesitatingly agreed to an EKG. She felt strongly that it was not cardiac related, that an EKG would rule out cardiac concerns. Well the EKG revealed I had suffered a heart attack. The shock of this was more difficult to comprehend than my cancer diagnosis at 24, as I was sick for sometime I had mentally been preparing. This was different as it was so sudden. Unexpected by not just me but my doctor too. I was so relieved it was not cancer, yet so afraid of what heart disease would mean for me.

An appointment with a cardiologist, and subsequent testing, determined I had chemo induced cardiomyopathy. My ejection fraction (EF) was 40% at the time (normal is 55-60%). When the cardiologist heard my cancer history and my treatment formulary, he said,  “You are right on time.” He explained we now have long-term research that confirms the “red devil” chemo drug (along with other types too) has repercussions on internal organs (especially the heart) approximately 20 years later. 

The risk of organ damage was never mentioned to me. I now see it makes sense, since the chemo damaged my reproduction very quickly. Why not other organs, too?

I received my CRT-D device in 2017 when my EF dropped to 30%. My list of heart pills has grown to 6 different medications over the years. From the time of my heart disease diagnosis, I had been searching for information and support online, but receiving my CRTD inspired me to start my own FB group called “Canadian Women with Medical Heart Issues.” I’m grateful that lead me to HeartLife Foundation and many other opportunities. 

As of 2019 my EF now is about 25%. The biggest physical challenge is fatigue. A recent breathing stress test shows I have a diminished breathing capacity (I am at approximately 50%)  so I struggle with shortness of breath as well. It has been a pretty quick slide from Heart Disease to Heart Failure for me. When I was originally diagnosed my cardiologist thought I would be stable for 5 years or so, but unfortunately that was not to be my story. I am borderline for consideration for advanced therapy (transplant). I am hopeful this can be keep at bay for a few more years with medications, exercise, diet & stress management BUT if the time comes it’s comes. With the support of family, friends and on-line communities like HeartLife and Canadian Women with Medical Heart Issues, I will preserver.

No one knows what the future holds for them. I had 20 plus years without major health issues and 20 beautiful years with a career I loved. I was able to travel with work and my wonderful husband, to experience so many life adventures. I would not have had any of that if the doctors had not been aggressive with my treatments back when I was 24/25. I am grateful and blessed. 2018 was a big year for me as I went on long term disability for heart failure, I turned 50 years of age, and I worked on reinventing who I am through my passion for advocacy and patient engagement. It has not been easy and it has been a tough few years but I honestly would not trade any of it. We are a sum of all our life experiences and my life is beautiful. I am hoping that 2019 will be a year of making a difference for women with heart issues locally and nationally. I’m looking forward to it. Thank you for reading. 


Meet Antonella Mazzoio

Antonella.jpg

Something special happened to me two years ago.

I'm here to say that I received the most precious gift of life. A new heart. I am so happy to be here today. I'm a 54 yr old woman that is happily married to my husband for 28 years. I also have a beautiful 27 year old daughter.

I have Lupus, and I was diagnosed with it at the age of 19, which means it’s been 35 years since I was first diagnosed. I got married to my husband in 1991. Shortly after I had my daughter on February 14, 1992, she was born at only two pounds & one ounce, because of Lupus. Due to a clotting disorder that I have (anti phospholipid syndrome), I had a heart attack. It was 8 months later after I gave birth to my daughter and I got a blood clot, in my heart.

In January of 1992, I had to get a mitral valve replacement. I was only 28. My heart was now damaged from the heart attack. For 20 years, I was struggling with a sick and bad heart. As years went by, my heart was getting enlarged year after year.

In 2007, my doctor diagnosed me with Ventricular Tachycardia. Soon after I found out that I had this fast heart beat, I got an attack and went into cardiac arrest. I was implanted with a defibrillator/pacemaker shortly after. I was doing well with it for 7 years, until one day I had an attack where my defibrillator started shocking over and over. My heart finally couldn't take it any more — and I went into cardio arrest again.

I was rushed to RCH hospital and I was there for 2 weeks. I was transferred to SPH where a heart transplant team took care of me. I was in the hospital for 2 months. The doctors told me then that I needed a new heart cause my heart was only working at 15%. I was implanted with a heart pump (lvad) until they found me a donor. I waited 8 months and then I got a new heart.

I wanted to share this story with all my heart survivor friends, because I wanted all of you to know that miracles do happen. God is good!

I want to thank  all of the people who gave me a second chance at life.

First of all, the firemen and paramedics that were there to assist me at the time of need. My donor and the family — I would not be here today if it weren't for you. God for always watching over me. Dr. Cheung for my transplant. All of my cardiologist and heart transplant team. The wonderful nurses that took care of me, and my husband for being there, and never giving up on me. My daughter for standing by my side along with the rest of my family and friends. I'm so happy that your all in my life. I could have never gotten through this with out you. May God bless you all! ️️

We’re joining The Global Heart Hub to raise a red flag for heart failure

There are an estimated 26 million people living with heart failure worldwide. Typically, a healthy heart beats approximately 100,000 times per day. However, anything that affects the pumping action of the heart has an effect on our body and how we feel.

With heart failure, the heart cannot efficiently pump all of the blood your body needs, and it cannot fill or empty as it should. This, in turn, causes fluid to build up in your body, in areas such as your feet, ankles, legs, stomach, and also in your lungs; which can give rise to breathlessness. 

This chronic disease can take years to develop, or it can come on patients quickly, affecting both men and women in the same way. Although the majority of patients with heart failure are over the age of 65, the illness can be developed at a younger age. In fact, as many as one in five people over the age of 40 will develop heart failure in their lifetime, according to The Global Heart Hub — the first global non-profit organization established to provide a voice for those affected by cardiovascular disease. 

Early diagnosis of heart failure is crucial to ensure optimal treatment, and this can significantly benefit those living with the condition. That’s why we’re joining The Global Heart Hub and more than 20 organizations across 15 countries worldwide, to help raise awareness of the signs and symptoms of heart failure. On Friday May 24th and May 31st, we invite you to join us and raise a red flag on heart failure. By doing so, we hope to highlight the danger signs and symptoms of this rapidly rising cardiovascular disease.

Early symptoms and when to see your GP

Oftentimes, the earliest symptoms of heart failure are very subtle; and not everyone will have the same symptoms. Any one symptom of heart failure alone may not be a cause for alarm. However, if you have more than one symptom (even if you have not been diagnosed with any heart problems), you should seek professional advice from your GP. 

Sadly, awareness of risk factors and the signs and symptoms of heart failure, is low on a global scale. Reg flag symptoms include breathlessness, fatigue, and swollen limbs. The Global Heart Hub recommends watching out for the following heart failure signs and symptoms:  

  • Coughing/wheezing

  • Extreme tiredness or no energy

  • Loss of appetite

  • More frequent urination, especially at night

  • Rapid heartbeat or palpitations

  • Shortness of breath 

  • Shortness of breath, even when lying down

  • Swelling in the ankles/feet/stomach

  • Weight gain over a short period of time (> 2 kg over 2 days)

If you are experiencing symptoms suggestive of heart failure, please make sure to ask your GP “Could I have heart failure?” 

To join us in raising a red flag and raise awareness of the symptoms and signs of heart failure, simply capture an image or video and share it online using the hashtag #raisetheflag. For more information and helpful resources, visit The Global Heart Hub

IF YOU’RE LIVING WITH HEART FAILURE, OR SOMEONE YOU LOVE HAS THIS CHRONIC ILLNESS, CLICK HERE TO VISIT OUR CLOSED FACEBOOK SUPPORT GROUP AND JOIN THE CONVERSATION.

Meet Tracy

Up until 2013 I was a healthy, fit, wife and mother of 2 teenage boys. I also had a successful and demanding career. August of that year was the first time I became aware of a change to my health. During a strenuous 8-hour hike I had to take more frequent breaks and I was more short of breath than expected. It was frustrating but not enough to get overly concerned.

Over the next four months my shortness of breath became more frequent. I was gaining weight; my fatigue levels were getting worse and I had increasing dizzy spells. In addition, I had episodes of very fast heart rates that were increasing in frequency and duration. I thought I was just getting out of shape and since I had always enjoyed good health I assumed I was in control of it. I thought that I could fix it. I thought stress, travel and diet had caught up with me. I downplayed it because I was embarrassed, my family didn’t have any idea just how serious things were becoming.

By December of 2013, the intensity and duration of these symptoms had increased significantly. My denial that something more serious could be happening also meant I downplayed the need to see a doctor.

And then life changed

On Dec 15, 2013, after 8 hours of feeling queasy, bloated and my heart racing I admitted I needed help and my husband rushed me to emergency. It was quickly determined that I was in full heart block. The ER doctor cardioverted (i.e. stopped and started) my heart twice to stabilize me and then admit me to the cardiac intensive care unit (CCU). I was told I was having life threatening arrhythmias, and without serious treatment, I had less than a 1% chance of surviving. I didn’t realize it at the time, but I was also in NYHA stage 4 heart failure.

The next few days included 2 more cardioversions to shock my heart back out of dangerous rhythms. Then endless tests including a biopsy of my heart. I was discharged 10 days later, on Christmas Day, with an ICD (implantable cardioverter defibrillator) and a diagnosis of Cardiac Sarcoidosis.

Sarcoidosis is a rare inflammatory disease that typically occurs in lungs; but it can occur in any organ. It has no known cause and no cure. Some sarcoidosis patients only have one flare up of activity and then it resolves, some don’t even know they have it. Others, like me, have advanced sarcoidosis meaning it can reoccur.

Sarcoidosis can become dangerous if it interferes with the function of an organ. In my case Cardiac Sarcoidosis not only interfered with my heart function but also resulted in heart failure because of the damage done to the heart tissue and function.

I was prescribed multiple medications under a complex treatment plan. Yet once I was home, I believed I would return to work and life as I knew it. Despite my cardiologist’s warnings to prepare for a long recovery I was only focused on the 6-week recovery from the ICD surgery. I did not understand what chronic disease would eventually mean to me and the ways in which my life would change.

The treatment plan

Fortunately, I was enrolled in cardiac rehab which gave me back some confidence and taught me how to exercise safely. ‘No pain, no gain’ could no longer be my motto. But more than that, it was my first social connection to other patients who understood the emotional impact of health traumas. Despite our differences in age and backgrounds we shared a common bond and my long road to acceptance and understanding began.

In the past five years I have had two life saving shocks from my ICD. The sarcoidosis flared up a second time in 2016, and again in 2017. My life felt like a never-ending cycle of intensifying the treatment, adjusting to the side effects/changes, reducing the treatment, waiting, and hoping. Every time I thought that my old life was right around the corner.

When the sarcoidosis was active in the fall of 2016 I experienced significant symptoms of heart failure. At that point I was told I had a severe leaky tricuspid valve, the wall of the right side of my heart seemed to be collapsing and that if we couldn’t get the sarcoid under control, and my heart continued to deteriorate, a valve repair/replacement and/or heart transplant were likely in my future. This was when I started to realize I was living with heart failure and my life would never be the same.

Adjusting

Heart issues are often associated with lifestyle choices, therefore I felt like I had somehow failed by letting this happen to me. I felt ashamed, isolated and sometimes angry. Although I’m grateful for many things I also grieved my old life. Having heart failure is not part of anyone’s plan.

In August 2017 the sarcoidosis returned and, strange as it might sound, so did my hope. It was then that a new treatment plan was identified. In 2018 that treatment was approved, and I began regular, ongoing, IV infusions.

I’m still impacted by my damaged heart and my life will forever be divided into before and after my diagnosis. However, I know that if I don’t listen to my body and follow my treatment plan I will worsen and with that realization has come the beginnings of acceptance.

Heart failure is a scary diagnosis, but I’ve come to learn that it is a continuum. When my sarcoid is active I experience heart failure symptoms. I consider those symptoms my warning sign to call my medical team right away. When both my sarcoidosis and my heart are well managed my heart failure symptoms diminish.

It has been a very long road but, for now, my sarcoidosis and my heart failure have stabilized.

What’s next?

I’m fortunate that I’m a patient of a heart function clinic which means I have access to a wide range of resources and support services. Life can change in an instant and the adjustment and acceptance of that comes with a roller coaster of emotions. Unfortunately, the mental health impacts are often underestimated or even overlooked.

Thanks to my family, friends, medical team and cardiac rehabilitation I can once again do many of the things I have always enjoyed. I just do them differently. Before my diagnosis I prided myself on being constantly active, open to opportunities, being flexible and spontaneous. Now, I must be more thoughtful and planned in my activities. I may not go as far, or as steep, or as fast as before, but I still get out and enjoy the outdoors. For the first time in five years I can look at a hill and not panic. It won’t be easy but I’m starting to trust my heart to get me through it.

I will always require daily medications and bi-monthly IV infusions. I must also carefully manage my stress, rest, diet and exercise. My energy levels vary from day to day so learning to pace myself, prioritize myself and ask for help have been just as difficult as the physical adjustments. Multiple studies show that this is a common challenge for many women and unfortunately it can mean the difference between life and death.

I haven’t fully figured out what this next chapter of my life will look like, but I know it’s up to me to make it as healthy and fulfilling as I can. I’ve always believed in healthy living for prevention and I’ve learned that it is also a huge benefit to recovering from, and living with, illness. While I worried I was simply “out of shape”, the reality is I am probably alive today because of how strong my heart was before I sought medical help. Tomorrow’s Results Ultimately Start Today – TRUST yourself.

Meet Pegga de Albreit

HL_Apr15_4.png

During Summer of 2014, I had a flu like symptoms that went on for a few weeks.

I went to see my family physician and she prescribed me with inhalers for asthma. Weeks went by and the symptoms continued to persist, so I went to a walk-in clinic. The doctor told me that I had fluids in my lungs and that I had bronchitis, so she prescribed me with antibiotics for 10 days. My heart rate and blood pressure were high, but they didn’t investigate further because I was menopausal, I was adjusting to my married life, I was stressed, and I was told to stop drinking too much caffeine.

Weeks and months went by, and I increasingly became more fatigue and coughing a lot. I couldn’t walk very far and I stopped walking my dog. I took naps during the day, I was very forgetful, I couldn’t do my house chores, I couldn’t sleep lying down. Everyday, I felt as if I was drowning and my chest felt heavy. I had to sleep sitting up or propped my head on the couch. I couldn’t eat because my belly was distended.

On the evening of November 29, 2014, I started to have a hard time breathing. I asked my husband to take me to the hospital. A day after my admission and several tests, bloodwork and medical imaging, doctors broke the terrible news I never wanted to hear that I have cardiomyopathy, atrial fibrillation, heart failure and pneumonia.

Since then, I have several other health issues and surgeries. I am unable to do activities I used to enjoy. My life has changed forever. I was diagnosed with heart failure at 40 years old. I never smoked, abused alcohol or did drugs. I always ate very healthy, tried to live a very active lifestyle, and am within my ideal body weight. I want to spread awareness to women my age to listen to their bodies and be vigilant on unusual symptoms especially irregular heart beats.