Patients & CaregiversPatient Journey
Rachel’s Personal Journey
We created this page to inform and support pericarditis patients and their families as they face the challenges of this potentially life-altering disease. My name is Rachel, and I am pleased to share my pericarditis journey. My hope is that my story helps others in the pericarditis “community” better understand and navigate their own health and well-being.
Each recurrent or complicated pericarditis patient has their own unique experience. The good news is that most pericarditis patients will recover after one acute episode. But for those of us with complicated or recurrent pericarditis, the one commonality we all share is that things can get really tough somewhere along the way.
The recommendations below are for the 15-30% of us that face complicated or recurrent pericarditis.
Following a brief account of my personal pericarditis diagnosis, here are some of the topics that will be discussed:
- Finding credible information
- Navigating medical care
- Handling stress
- Physical activity recommendations
- The social environment: family; work; friends
- Maintaining mental health: anxiety, judgment from others, frustration, etc.
As July 2016 began, my life was moving along smoothly. I was building my psychotherapy practice. My children were graduating from high school and college. I maintained a high level of fitness, and I enjoyed traveling and socializing with family and friends. Little did I know that everything was soon about to change.
In mid-July, I woke in the middle of the night with a strange sensation in my right arm that felt like a pinched nerve. I took an NSAID, and it went away. Then, in early August, I called a physical therapist because I had neck pain, and sometimes my chest hurt, especially when I would lie on my back.
The physical therapist redirected me to my primary care physician (PCP), who ordered an EKG, which led to the pericarditis diagnosis. My PCP prescribed an anti-gout agent and NSAIDs, and he told me to stop exercising for three months. (I remember thinking that this sounded like an eternity.) He also informed me that usually, pericarditis is not a concern and that it typically resolves with the help of these medications. He also said that the only cause for concern would be the development of fluid around my heart which may manifest as shortness of breath, dizziness and low blood pressure.
Within four days of my diagnosis, my health dramatically deteriorated. My PCP recommended that I go to the emergency room, where I was diagnosed with pneumonia in addition to pericarditis. I was sent home with antibiotics. I was in severe pain, especially when I would lie down, I couldn’t eat, I could barely walk ten steps before the exhaustion would become too much, and then my skin turned gray, indicating that my blood pressure was low.
I asked my spouse to call the ambulance as I lay on the floor, fearful that any attempt to get up would lead to something terrible. Indeed, the paramedics discovered that my blood pressure was dangerously low because the excess fluid in my pericardium was compressing my heart. Nine hours later, I underwent pericardial window surgery, and I spent a week in the hospital. While in the hospital, the lining of my lungs filled with fluid, followed by my pericardium once again filling with fluid.
I believe that my doctors did their best to avoid steroid treatment; yet, steroids were the only medication that helped. As soon as I began taking steroids, I immediately felt better. Phew! I thought I was on the road to recovery. But I was mistaken.
The initial care I received probably saved my life. It was after I was discharged from the hospital that things got dicey. Most pericarditis patients safely recover with the help of NSAIDs and a medication commonly used for gout. Not me. I had five recurrences of pericarditis in three months as I tried to painfully wean off a high dosage of steroids.
Recurrent or chronic pericarditis can be difficult to diagnose. Many medical providers are not familiar with recurrent or complicated pericarditis. Consequently, more educational opportunities must become available to educate providers on diagnosing this disease and the most current protocols for treating the disease.
What Worked For Me
During this time, I accessed care at a large, reputable hospital in my area by going to the hospital’s emergency room during a recurrence. I did this because my symptoms weren’t being managed by the medical care I was getting: I kept having recurrences. And, I was concerned that each recurrence would lead to a worse outcome. In the emergency room, I hoped that I would find medical providers familiar with what I was going through. To take this step, I used courage and conviction, which I built through intense research and support from loved ones.
After a long, complicated, and exhausting journey involving ER visits, intense research, travel, and numerous consultations, I eventually found the right doctors and began taking a biologic medication* in 2018. Happily, I responded well to the new drug, and my health continued to improve. Although I didn’t immediately feel better when I started taking the biologic, the recurrences stopped, and life became more predictable. Slowly, very slowly, my pericardium began to heal, and I began to feel better. As I look back, I cannot pinpoint an exact moment when I felt better. My healing was very gradual – slow and steady.
If you are diagnosed with pericarditis and not getting better with standard treatments, you can use information from medical research to learn about what tests to request, which medications to discuss with your doctor, and how to get your needs met by your doctors and insurance providers. Helpful articles are listed in the RESEARCH section of this page.
(*Getting a prescription and insurance coverage for a biologic to treat recurrent pericarditis can be difficult and frustrating but, be tenacious.)
The Good News
Today, I’ve got a handle on my treatment. But, I’ve also gained an intimate understanding of pericarditis’ profound emotional impact – its impact on the “me” I used to know and on the “me” the many people in my life knew and depended on.
I am not the same person I was in 2016. And, although I grieve the loss of that person, I would not give up the lessons pericarditis has taught me, and the opportunities it continues to provide.
Pericarditis challenged my stubborn defenses. It continues to challenge me to confront what I used to avoid by distracting myself with long work hours, and physical exertion. It taught me to accept care and support and to be able to count on other people. And, it taught me to accept my limits without feeling weak or useless. These lessons and opportunities are unique to me and my own defenses. Likewise, your lessons and opportunities will be unique to you.
For those of us with a longer journey, intensive self-care is required. By sharing some of the intensive self-care processes I’ve learned, I hope I can help you find bright spots in the darkness. As you read on, you may notice that my regimen isn’t your average self-care regimen. That’s because pericarditis can force chronic sufferers to drastically realign their lives in ways that, ironically, can result in a nourished, richer and better-balanced life.
My story is limited to the experiences and the knowledge I found helpful. The pericarditis community is filled with as many different stories and resources as there are community members. Everyone’s journey is unique. We all have something to share. We invite you to share your story on Inspire. (Inspire is a health and wellness support group and community, where members share and learn from one another about their diagnosis, treatment and experience.)
Self-Advocacy & Research
Finding Credible Information
My mom, with a career in research and journalism, began researching pericarditis soon after my diagnosis. She found informative journal articles by Dr. Klein at Cleveland Clinic and Dr. Imazio in Turin, Italy.
The information in these articles helped me have the confidence to scrutinize the care I was receiving. And, it gave me information about the risks involved in recurrences. I can’t stress enough the importance of the knowledge these articles provided. Without this knowledge, I don’t know what the state of my health would be right now.
Imaging-Guided Therapies for Pericardial Diseases JACC: CARDIOVASCULAR IMAGING VOL. 13, NO. 6, (2019) STATE-OF-THE-ART REVIEW Chetrit et al.
(Michael Chetrit, MD, BoXu, MD, Deborah H. Kwon, Jay Ramchand, MD, Rene E. Rodriguez, MD, Carmela D. Tan, MD, Christine L. Jellis, MD, Douglas R. Johnston, MD, Rahul D. Renapurkar, MD, Paul Cremer, MD, Allan Klein, MD.) https://doi.org/10.1016/j.jcmg.2019.08.027
Management of Acute and Recurrent Pericarditis. Journal of the American College of Cardiology Vol. 75, No. 1, 2020. January 7/14, 2020:76-92. Chiabrando, et al. https://doi.org/10.1016/j.jacc.2019.11.021
Anakinra for corticosteroid-dependent and colchicine resistant pericarditis: The IRAP (International Registry of Anakinra for Pericarditis) study. European Journal of Preventive Cardiology 0(00) 1-9 (2019) Imazio et al. Https://doi.org/10.1177/2047487319879534
Complicated Pericarditis: Understanding the Risk Factors and Pathophysiology to Inform Imaging and Treatment. Journal of the American College of Cardiology. Vol. 68, No. 21, 2016. November 29, 2016: 2311-28. Imazio et a Https://doi.org/10.1016/j.jacc.2016.07.785
Prevalence of C-Reactive Protein Elevation and Time Course of Normalization in Acute Pericarditis: Implications for the Diagnosis, Therapy and Prognosis of Pericarditis. Circulation. March 15, 2011: 1092-1097. Https://doi.org/10.1161/CIRCULATIONAHA.110.986372
The Autoinflammatory Side of Recurrent Pericarditis: Enlightening the Pathogenesis For A More Rational Treatment. G. Lopalco, D. Rigante, L. Cantarini, et. al. Https://doi.org/10.1016/j.tcm.2020.04.006
Risk of Constrictive Pericarditis After Acute Pericarditis Massimo Imazio, Antonio Brucato, Silvia Maestroni, Davide Cumetti, Riccardo Belli, Rita Trinchero, and Yehuda Adler
2015 ESC Guidelines for the diagnosis and management of pericardial diseases: The Task Force for the Diagnosis and Management of Pericardial Diseases of the European Society of Cardiology (ESC) Endorsed by: The European Association for Cardio-Thoracic Surgery (EACTS). Y. Adler, P. Charron, M. Imazio, et. al. European Heart Journal, Vol. 36, Issue 42, Nov. 2015. 2921-2964. Https://doi.org/10.1093/eurheartj/ehv318
Here is a letter to the editor of the Journals of the American College of Cardiology (JACC) entitled, “Exercise is good for the heart but Not for the Inflamed Pericardium?” Https://doi.org/10.1016/j.jcmg.2019.01.022
A significant issue for many patients is that they do not get properly diagnosed. Diagnosing pericarditis can be challenging, and requires your doctor to take a very detailed medical history to thoroughly understand your story and symptoms. Here are some of the tests that may potentially help with an accurate diagnosis:
- This is a marker of any inflammation in your body. It is not specific to pericarditis but indicates there is some inflammation in your body
- This is a marker of any inflammation in your body. It is not specific to pericarditis but indicates there is some inflammation in your body
- Some changes on your ECG traces are suggestive of pericarditis.
- Can show fluid around the heart which may suggest pericarditis.
- Can be useful to look for swelling or inflammation of the pericardium.
If none of these tests result in a definitive diagnosis, consider the quality of the testing equipment, and whether or not the person performing or interpreting the tests has familiarity with recurrent or chronic pericarditis. Recurrent or complicated pericarditis is a rare condition, and it may be prudent to seek the care of specialists.
Tips For Finding & Receiving Care
Ideally, you are receiving medical care that prevents recurrences. If that is not the case, here are some suggestions for finding and receiving effective care:
- Read the research articles included in the Self-Advocacy section. Use the information in the articles to evaluate your provider’s understanding of current pericarditis management.
The following articles may be helpful, if you would like to provide your doctor with the most up-to-date information about the management of pericarditis:
Management of Acute and Recurrent Pericarditis. Journal of the American College of Cardiology Vol. 75, No. 1, 2020. January 7/14, 2020:76-92. Chiabrando, et al. DOI: 10.1016/j.jacc.2019.11.021
2015 ESC Guidelines for the diagnosis and management of pericardial diseases: The Task Force for the Diagnosis and Management of Pericardial Diseases of the European Society of Cardiology (ESC) Endorsed by: The European Association for Cardio-Thoracic Surgery (EACTS). Y. Adler, P. Charron, M. Imazio, et. al. European Heart Journal, Vol. 36, Issue 42, Nov. 2015. 2921-2964. Https://doi.org/10.1093/eurheartj/ehv31
- Talk with your insurance company about what you need to do to receive the best care possible. Insurance coverage is very different from company to company, state to state. Inquire if your company has a navigator to help you in this often confusing process.
- Assemble a team. Recurrent or complicated pericarditis patients may need a medical team that consists of a cardiologist, rheumatologist and primary care physician. Additional providers may also be involved, depending on the cause of the pericarditis.
- Unfortunately, as with many rare diseases, it is an all too common experience for people with recurrent or complicated pericarditis to have medical providers who are not familiar with this condition. This can be a frustrating and disorienting experience. If this is happening to you, you may find it helpful to use information from the journal articles we’ve listed above to locate a medical provider who is familiar with recurrent or chronic pericarditis.
- If you are interested in getting care at a Center of Excellence, your current doctor may be able to help you with this. Or, you can fill out an online appointment request form yourself. And, usually the facility will help you with the process, including determining if your insurance will cover your visit, or estimating what the cost for the visit would be. Chances are, this is a new process for you. Remember to be persistent and ask for help if you need it.
Regardless of the treatment that leads to your healing, it helps to maintain your courage and conviction in your search for healing.
After living with pericarditis for five years and enduring seven recurrences, my health is improving because I began taking a biologic medication two years ago. The process of getting approval for the biologic was similar to the process it took to access an appropriate level of medical care. Tenacity, research and self-advocacy are all key.
Being diagnosed with pericarditis can force you to slow down and be present – that’s a good thing!
Pericarditis patients are often told to “decrease stress.” Sources of stress can be difficult to identify, and you may not even know you’re under stress. People experience stress according to our perceptions of its threat to our well-being. Often, these perceptions are not indicative of actual threats.
Identifying stress in your life requires detective work and maybe even professional mental health assistance. I recommend making mindfulness practices a part of your life to begin exploring and reducing your stress.
There are many device apps and programs to promote mindfulness. Personally, I have benefitted from Jon-Kabat Zinn’s Mindfulness-Based Stress Reduction program. I have also used device apps like Insight Timer or Calm. Serendipitously, mindfulness is popular right now, and there are many reputable resources to help you get started. Just remember, mindfulness takes training. I used to train to compete in triathlons; now, I train in mindfulness.
Living With Recurrent/Chronic Pericarditis
Reflections On My Journey
Recurrent pericarditis has the potential to impact your quality of life. It is unpredictable and confusing. It won’t let you do what you want or need to do because, at times, it physically and mentally hurts and exhausts you. You’re doing everything the experts tell you to do, but you still get sick. And, yet, pericarditis gives you opportunities to positively redefine yourself-when you are ready.
Here are some questions and suggestions to help you begin to change your perceptions and move forward:
Now that you have pericarditis:
- What do you get to learn that you haven’t had the opportunity to learn before? “I learned how to depend on others.”
- What do you get to do that you haven’t had the opportunity to do? “I allowed myself to appreciate quieter activities.”
- What do you not have to do anymore, now that you have pericarditis? “I realized that I didn’t have to keep up anymore.”
- What are the ways pericarditis can help you grow? “I found a higher level of maturity and wisdom.”
These questions can elicit various responses or reactions depending on where you are in your journey. If they feel minimizing or insensitive today, put them aside, revisit them later, or keep a journal with these questions. Eventually, you may discover that although pericarditis has thrown you a curveball, the adjustments it asks of you may benefit your well-being in the long run.
Everyone is different, but I think there may be common experiences based on the typical symptoms of this condition that could respond to the following suggestions:
- Pericarditis allows you to ask for help and receive nurturing care.
Many self-help folks say that when asking for help, it’s essential to determine what you need. A person who has pericarditis needs just about everything: physical assistance, rest, compassion, patience, understanding, generosity, and on and on.
We need so much help that we may feel like a burden. So, what a person with pericarditis needs most is to feel worthy of getting the huge amount of support our disease requires us to get. As a human being with a debilitating illness that you can’t solve independently, you deserve help and are worthy of getting the help you need.
Another thing about asking for help is that it makes you feel vulnerable. Feeling vulnerable with others sends the message that you trust them and that they are good people. So, ask for help from those you trust enough to feel vulnerable with, and with that act, you are letting them know that they are someone you trust. It’s a win-win.
Finally, the good news is that when you get help, you will notice that accepting help can feel good. Pericarditis forces us to risk feeling vulnerable and ask for help, and when we receive that help, it teaches us we are worthy of it.
- Pericarditis allows you to say no when you need to.
Here are some suggestions for how to say no from Jessica Amos, meditation teacher, writer, and founder of Stay With Yourself, The Practice of Being Who You Are Where You Are. www.staywithyourself.com
- “I will have to think about it and get back to you.”
- “I have a lot going on right now and I cannot commit to that.”
- “I don’t have a lot going on right now, and I’m really liking it, so I can’t commit to that right now.”
- “I’m currently prioritizing other things and I don’t have room for more.”
- “That’s a nice offer but I can’t at this time. I’ll let you know if something changes.”
- “Thanks for thinking of me but I’m not interested.”
- “That’s not really my cup of tea but maybe there’s another way we can connect…”
- “I’d love to see you when I have more capacity and can give you my full attention.”
- “I like what you’re up to but I’m unavailable to participate. I’ll let you know if something changes.”
- “Sounds like a good time. However, I really need to stay home and rest.”
- “I haven’t been feeling social lately or else maybe I would.”
Remember, when it comes to saying no, it’s best to keep it simple and easy. No lies or big excuses required.
- Pericarditis allows you to set limits and boundaries.
Suggestions For Setting Boundaries
According to author and researcher Brene Brown, “Daring to set boundaries is about having the courage to love ourselves, even when we risk disappointing others.” Setting boundaries takes courage. Here are some of the ways I try to set boundaries:
First, be aware that your boundary is being crossed or – that a boundary needs to be set. This means tuning into your emotions, thoughts and physical reactions. A helpful tip is to notice the times when your brain says no but your mouth says yes. That may be an opportunity to set a boundary.
Second, when you notice that a boundary is being crossed or needs to be set, ground yourself, plant your feet on the floor and breathe. Who cares if it’s awkward! And, then, courageously set the boundary. If you feel like you are letting someone down by setting a boundary, please don’t. Rather, heed the advice from Brene Brown, “dare to have the courage to love yourself, even when you risk disappointing someone.”
Pericarditis shows you that you can slow down and be present in the moment.
Here are some resources to help you slow down and be present:
Here are some suggestions for slowing down the pace of your life:
- Extend the time you think it will take you to complete a task.
- Consciously perform tasks in slow motion.
- Take moments to let out a sigh, allowing your exhale to lengthen.
- Avoid multitasking.
- Take a moment with your senses: for a period of time, put your focus on what you see, hear, smell, taste, and touch, one at a time.
Interaction & Adapting
Family, Friends, Work
Finally, I have to bring up family, friends, professional relationships, and casual interactions with strangers.
At worst, the insensitivities deeply hurt. Maybe you’ve had some of these experiences?
- You don’t look like you’re sick, so people misunderstand why you can’t keep up.
- You get unsolicited advice.
- Your symptoms are explained as emotionally related.
- Your friends, colleagues, and/or family want “the old you” back.
I am sure you have had your own memorable moments…
At best, our family, friends, professional relationships, and casual interactions are the reason we can keep going. My family showed me that even with my often limited contributions, I’m still valuable and cherished. My friends have assured me that I don’t have to be at 100% to spend time with me; my professional colleagues have shown patience and acceptance; casual acquaintances displayed respect and acceptance when I appeared fragile and vulnerable.
Adapting has been both emotionally challenging and rewarding. Here are a few suggestions:
How to manage family and friends who are struggling with the changes: First and foremost: Breathe and ground your feet. People with recurrent or complicated pericarditis can feel alone and inadequate because sometimes even the advice from well-meaning medical providers is ineffective against this condition, and it starts to feel like we’re not doing it right.
How to respond to unsolicited advice:
Breathe and ground yourself. And then use one of these polite and effective responses:
- “That’s a possibility. I’ll consider if that’s right for me.”
- “That’s interesting. And, my doctor and I have a plan that I’ll stick to.”
- “As much as I wish that kind of treatment could work, this is a very serious disease that requires strong medications.”
- “I can tell how much you would like to be helpful. Just your support and understanding are the best things for me right now.”
How to address people, respond to people, and keep your head about you when they say some of the things that can be hurtful to someone with a chronic illness:
Connect and Redirect
A technique I teach parents to use with children is called “Connect and redirect,” and it can be used with anyone. First, you make a statement acknowledging what the person is trying to convey, and then you provide a way for them to express themselves differently. This decreases the shame associated with being corrected. Here are some examples:
- How’s your health? “I can tell how much you care about how I’m feeling (connecting). Can we talk about something else (redirecting)?”
- Are you feeling any better? “I can tell how much you want this burden to be lifted for me (connecting). A good way to help me feel better would be to….(redirecting)”
- You look really good… You don’t look sick. “It sounds like you want to say something kind (connecting). Just being here with me is all I need from you (redirecting).”
- At least you can do…xxx “It sounds like you’d like to help me find a silver lining (connecting). But, I’m OK accepting the way it is right now (redirecting).”
- I miss the old you. “I can tell this transition is difficult for you (connecting). Let’s find parts of the new me that you enjoy (redirecting).”
- You never want to do fun things anymore. “I hear how much you want to enjoy the things we used to enjoy together (connecting). Let’s find something new that we can have fun doing (redirecting).”