American Heart Association
The Gift of Light
I’m Dr. Nasheel Joules, a 44-year-old Internal Medicine physician. My husband is Mark Cornetti. We knew we were meant to be together forever after our first date at the Texas State Fair in 2011. We are happily married for 11 years.
At the beginning of this year, Mark and I did not know if I would be alive for Christmas. But here I am! As you are about to read, we’ve navigated many health struggles. We want to share my medical story to give others hope to keep fighting, and to help others find the strength to persevere.
I have Cryopyrin Associated Periodic Syndrome (CAPS)-a rare genetic autoinflammatory disease which affects 1 in 1,000,000 people. I am a survivor of constrictive pericarditis (CP) and I also have congestive heart failure (CHF), most likely a result of CAPS. I was diagnosed with CAPS in 2018, after 5 years of being misdiagnosed with rheumatoid arthritis. In 2017, at the age of 38, I had to stop working due to the severity of symptoms caused by CAPS.
In 2020, I was diagnosed with pericarditis. I was also rapidly accumulating fluid in my body (edema). I asked my doctor if I could have constrictive pericarditis, a rare type of pericarditis that causes CHF and edema. CP will absolutely cause death within a few years if the pericardium is not surgically removed from the heart (a pericardiectomy). A pericardiectomy is supposed to cure CP and reverse the CHF caused by CP. My cardiologist misdiagnosed me when he told me with certainty that I did not have CP.
Mark and I traveled to the Mayo Clinic in 2020 to figure out the cause of my edema and shortness of breath. Mayo diagnosed me with CP, just as I had suspected! Mayo wanted me to stay on medication for a longer period of time before resorting to a pericardiectomy.
When my symptoms continued to progress in 2021 we traveled to see one of the top pericarditis experts in the world to get a referral for a pericardiectomy. We were dismayed when he misdiagnosed me and told us surgery wasn’t needed because the CP was gone, despite test results which indicated otherwise. He adamantly insisted my heart was fine. We were absolutely devastated because we knew I was going to die without a pericardiectomy.
We contacted a top cardiac surgeon ourselves and my pericardiectomy was done via open heart surgery in 2021. Tissue analysis of my constricted pericardium confirmed I indeed had CP.
While recovering from surgery I contacted the pericarditis expert who misdiagnosed me. I informed him that his assessment of my case was wrong. Instead of apologizing for his mistake he had the audacity to insist again, and again and again that I never had CP.
Because CP was present for such a long time preceding my pericardiectomy it caused permanent damage to my heart. Therefore, the surgery did not reverse my CHF, as we had hoped. However, the pericardiectomy wasn’t in vain. My surgeon told me if I had waited any longer to have surgery, I likely would have been on life support.
It was an uphill battle getting a cardiologist to believe the pericardiectomy did not reverse my CHF. Tests done after my pericardiectomy showed several abnormalities consistent with CHF. But since the pattern of abnormalities fell outside the usual diagnostic criteria for CHF, cardiologists kept wavering on a CHF diagnosis.
As the cardiologists wavered, my condition started to deteriorate by the latter part of 2022. I lost 25 pounds of muscle in less than a year due to cardiac cachexia. My kidney function also became abnormal due to poor heart function.
During the early part of 2023, I was in the hospital for four weeks due to CHF and cachexia. At my hospital follow up appointment a heart failure specialist came into the room saying, “Well I don’t think you have CHF.” This was after she had diagnosed me with CHF just a few months prior. To make matters worse, her nurse practitioner had already misdiagnosed me with dehydration, deconditioning, and hormone problems. There I was, not even one day after getting out of the hospital, and this heart failure specialist wanted me to stop taking my cardiac medications because she wanted to unnecessarily repeat a test. The test had been done a year before and indicated CHF. Had I listened to her and stopped my medications I would have ended up back in the hospital. Repeated hospitalizations for CHF can significantly increase a patient’s mortality. This doctor was willing to endanger my life simply because she was not willing to diagnose CHF using outside of the box thinking. The absurdity of it all shocked us to our core.
I was dying from cardiac cachexia and CHF and we could not find a cardiologist who was willing to see the situation and diagnosis clearly. We saw 7 cardiologists from 2021-2023 before finding one who didn’t hesitate to diagnose me with CHF. I have advanced stage heart failure. I know in my heart my condition wouldn’t have deteriorated so rapidly had any of those cardiologists taken me seriously, and diagnosed me with CHF promptly.
Under the care of my current cardiologist my condition has stabilized. If things get any worse a heart transplant is the next step.
We are so grateful for the rest of my doctors (primary care physician, nephrologist, rheumatologist, and hospitalist) who stood by me, believed me, and treated my CHF. They were willing to prescribe the medications the cardiologists were afraid to prescribe. My trusted doctors have often told me I would have died by now if it weren’t for my knowledge as a doctor and God’s intervention. It’s truly a miracle I am still alive.
Though our lives turned out different from what we envisioned, our love has never faltered. We love God and feel so blessed. Our “Gift of Light” Christmas display is our way of passing blessings on to others. We hope we have inspired you to bless others this Christmas.
Please donate to the American Heart Association. In sharing our story, Mark and I hope to break the cycle of improper care, misdiagnosis and mistreatment. Donations made to the American Heart Association will move forward their mission for a world of longer healthier lives. The American Heart Association has been working for nearly 100 years to advocate for quality system improvement. Your donation will make their transformational research and community impact possible.
Thank you and Merry Christmas!
Be the first person to donate to the cause!
I’m Dr. Nasheel Joules, a 44-year-old Internal Medicine physician. My husband is Mark Cornetti. We knew we were meant to be together forever after our first date at the Texas State Fair in 2011. We are happily married for 11 years.
At the beginning of this year, Mark and I did not know if I would be alive for Christmas. But here I am! As you are about to read, we’ve navigated many health struggles. We want to share my medical story to give others hope to keep fighting, and to help others find the strength to persevere.
I have Cryopyrin Associated Periodic Syndrome (CAPS)-a rare genetic autoinflammatory disease which affects 1 in 1,000,000 people. I am a survivor of constrictive pericarditis (CP) and I also have congestive heart failure (CHF), most likely a result of CAPS. I was diagnosed with CAPS in 2018, after 5 years of being misdiagnosed with rheumatoid arthritis. In 2017, at the age of 38, I had to stop working due to the severity of symptoms caused by CAPS.
In 2020, I was diagnosed with pericarditis. I was also rapidly accumulating fluid in my body (edema). I asked my doctor if I could have constrictive pericarditis, a rare type of pericarditis that causes CHF and edema. CP will absolutely cause death within a few years if the pericardium is not surgically removed from the heart (a pericardiectomy). A pericardiectomy is supposed to cure CP and reverse the CHF caused by CP. My cardiologist misdiagnosed me when he told me with certainty that I did not have CP.
Mark and I traveled to the Mayo Clinic in 2020 to figure out the cause of my edema and shortness of breath. Mayo diagnosed me with CP, just as I had suspected! Mayo wanted me to stay on medication for a longer period of time before resorting to a pericardiectomy.
When my symptoms continued to progress in 2021 we traveled to see one of the top pericarditis experts in the world to get a referral for a pericardiectomy. We were dismayed when he misdiagnosed me and told us surgery wasn’t needed because the CP was gone, despite test results which indicated otherwise. He adamantly insisted my heart was fine. We were absolutely devastated because we knew I was going to die without a pericardiectomy.
We contacted a top cardiac surgeon ourselves and my pericardiectomy was done via open heart surgery in 2021. Tissue analysis of my constricted pericardium confirmed I indeed had CP.
While recovering from surgery I contacted the pericarditis expert who misdiagnosed me. I informed him that his assessment of my case was wrong. Instead of apologizing for his mistake he had the audacity to insist again, and again and again that I never had CP.
Because CP was present for such a long time preceding my pericardiectomy it caused permanent damage to my heart. Therefore, the surgery did not reverse my CHF, as we had hoped. However, the pericardiectomy wasn’t in vain. My surgeon told me if I had waited any longer to have surgery, I likely would have been on life support.
It was an uphill battle getting a cardiologist to believe the pericardiectomy did not reverse my CHF. Tests done after my pericardiectomy showed several abnormalities consistent with CHF. But since the pattern of abnormalities fell outside the usual diagnostic criteria for CHF, cardiologists kept wavering on a CHF diagnosis.
As the cardiologists wavered, my condition started to deteriorate by the latter part of 2022. I lost 25 pounds of muscle in less than a year due to cardiac cachexia. My kidney function also became abnormal due to poor heart function.
During the early part of 2023, I was in the hospital for four weeks due to CHF and cachexia. At my hospital follow up appointment a heart failure specialist came into the room saying, “Well I don’t think you have CHF.” This was after she had diagnosed me with CHF just a few months prior. To make matters worse, her nurse practitioner had already misdiagnosed me with dehydration, deconditioning, and hormone problems. There I was, not even one day after getting out of the hospital, and this heart failure specialist wanted me to stop taking my cardiac medications because she wanted to unnecessarily repeat a test. The test had been done a year before and indicated CHF. Had I listened to her and stopped my medications I would have ended up back in the hospital. Repeated hospitalizations for CHF can significantly increase a patient’s mortality. This doctor was willing to endanger my life simply because she was not willing to diagnose CHF using outside of the box thinking. The absurdity of it all shocked us to our core.
I was dying from cardiac cachexia and CHF and we could not find a cardiologist who was willing to see the situation and diagnosis clearly. We saw 7 cardiologists from 2021-2023 before finding one who didn’t hesitate to diagnose me with CHF. I have advanced stage heart failure. I know in my heart my condition wouldn’t have deteriorated so rapidly had any of those cardiologists taken me seriously, and diagnosed me with CHF promptly.
Under the care of my current cardiologist my condition has stabilized. If things get any worse a heart transplant is the next step.
We are so grateful for the rest of my doctors (primary care physician, nephrologist, rheumatologist, and hospitalist) who stood by me, believed me, and treated my CHF. They were willing to prescribe the medications the cardiologists were afraid to prescribe. My trusted doctors have often told me I would have died by now if it weren’t for my knowledge as a doctor and God’s intervention. It’s truly a miracle I am still alive.
Though our lives turned out different from what we envisioned, our love has never faltered. We love God and feel so blessed. Our “Gift of Light” Christmas display is our way of passing blessings on to others. We hope we have inspired you to bless others this Christmas.
Please donate to the American Heart Association. In sharing our story, Mark and I hope to break the cycle of improper care, misdiagnosis and mistreatment. Donations made to the American Heart Association will move forward their mission for a world of longer healthier lives. The American Heart Association has been working for nearly 100 years to advocate for quality system improvement. Your donation will make their transformational research and community impact possible.
Thank you and Merry Christmas!
Be the first person to donate to the cause!