Autoimmune Patient Becomes First Double-Lung Transplant Recipient after Surviving COVID-19

Mayra Ramirez is the first known patient in the US to receive a double lung transplant after surviving COVID-19

Mayra Ramirez, a 28-year-old paralegal, had always been relatively healthy, enjoying going for runs around her Chicago neighborhood. She had neuromyelitis optica (NMO), an autoimmune disease that affects the spinal cord and nerves of the eyes. Other than this diagnosis, however, she was in good health and took extra precautions when COVID-19 hit Illinois.

Mayra Ramirez, a 28-year-old paralegal and autoimmune patient, contracted COVID-19 despite taking precautions

In March, she began working from home and rarely left home. But in April, Ramirez says she began to experience symptoms of fatigue, chronic spasms, diarrhea, and loss of taste and smell, in addition to a slight fever. So she contacted her doctor, who recommended that she monitor her symptoms from home, and keep in touch with a COVID-19 hotline.

Unfortunately, in late April, Ramirez started to feel “really bad” and ended up going to the ER at Northwestern Memorial Hospital where she was put on a ventilator. From that moment on, she says “everything was a blur”.

Ramirez spent the next six weeks in the COVID ICU, on both a ventilator and ECMO, a technique of providing prolonged cardiac and respiratory support to patients whose heart and lungs cannot support themselves. By early June, her lungs showed irreversible damage and the hospital’s medical team said that it was clear that only a double-lung transplant could save her.

Mayra Ramirez’s lungs suffered irreversible damage from COVID-19 (pictured here is one of her lungs)

“Once Mayra’s body cleared the virus, it became obvious that the lung damage wasn’t going to heal, and we needed to list her for a lung transplant,” said Beth Malsin, MD, a Pulmonary and Critical Care Specialist with the hospital.

So on June 5th, Ramirez underwent the life-saving double lunch transplant procedure, making her the first known patient in the US to receive such a transplant after surviving COVID-19. She was discharged from the hospital on July 8th, but has continued to receive occupational and physical therapy after the procedure.

Mayra Ramirez received a double-lung transplant after experiencing severe lung damage due to COVID-19

Ankit Bharat, MD, Surgical Director of the Northwestern Medicine Lung Transplant Program, stated “When we opened Mayra’s chest cavity, large parts of her lungs were necrotic and filled with infection. The severe damage and inflammation to the lungs had caused pressure overload on the heart which further made the surgery quite complex…Nevertheless, the success of [the transplant] emphasizes that surgical innovation can also play an important role in helping some critically ill COVID-19 patients.”

Mayra Ramirez stands alongside Dr. Bharat and Dr. Tomic, two of the medical professionals from Northwestern Medicine who aided her in the fight against COVID-19

When asked about her experience with COVID-19, and what she would want others to know about the disease, Ramirez says, “People need to understand that COVID-19 is real. What happened to me can happen to you. So please, wear a mask and wash your hands. If not for you, then do it for others.”

To learn more about Mayra’s story and her experience as an autoimmune patient with coronavirus, please visit the Northwestern Medicine website.

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Dutch Skating Champion Lara van Rujiven Dies from Autoimmune Disease

Speed skating champion Lara van Rujiven passed away from complications due to an autoimmune disease on Friday night, the Dutch Speed Skating Association KNSB has reported.

The 27-year-old gold medalist athlete was admitted to a hospital in Perpignan, France on June 25 with symptoms indicating that her immune system was compromised. She began to experience internal bleeding, including in her brain, and underwent two operations while being kept in an artificial coma.

Sadly, van Rujiven eventually succumbed to complications of her autoimmune disease. While the exact nature of her autoimmune condition is unknown, some have speculated that she suffered from autoimmune encephalitis, vasculitis, idiopathic thrombocytopenic purpura (ITP), lupus, or one of the many other autoimmune conditions which can cause internal bleeding.

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Van Rujiven won the gold medal for the 500-metre short track skating championship in 2019 in Bulgaria, becoming the first woman from the Netherlands to do so.

Fans and fellow athletes alike took to social media to express their sadness about her passing. “What terrible news we’ve just received. The loss will be felt in the sports world,” Dutch national coach Jeroen Otter said.

On behalf of Autoimmune Warrior, I’d like to send our condolences to Lara’s family. Her story demonstrates that autoimmune disease really has no bounds, and can affect even the strongest among us in the prime of their life. Rest in peace, Lara – you’ve made the Netherlands proud!

10 Facts about Crohn’s Disease

According to the Crohn’s & Colitis Foundation, Crohn’s is a chronic inflammatory condition of the gastrointestinal tract. Read on to learn 10 interesting facts about this autoimmune condition.

1. It’s more common than you think

An estimated 3 million Americans suffer from autoimmune diseases of the digestive tract, referred to as Inflammatory Bowel Disease (IBD). These conditions include Crohn’s disease, Celiac disease and Ulcerative Colitis. Women and men are equally likely to be affected by Crohn’s disease, unlike many other autoimmune conditions which are more prevalent among females.

2. Crohn’s affects patients early in life

Unlike some autoimmune diseases, such as Sjogren’s Syndrome, which are more likely to develop during middle-age, Crohn’s tends to develop early in a patient’s life. Most commonly, the disease will occur in one’s teens or twenties, though some patients can experience symptoms even earlier. According to WebMD, while most people are diagnosed before age 30, the disease can still occur in people in their 60s and beyond.

3. The gastrointestinal symptoms can be debilitating

The most common symptoms of Crohn’s are gastrointestinal in nature. These symptoms include abdominal cramps, diarrhea, weight loss, anemia and delayed growth (especially in younger children). There are actually different types of Crohn’s disease depending on which part of the gastrointestinal tract is affected, and each subtype has its own specific symptoms.

4. Non-Gastrointestinal symptoms are also problematic

Crohn’s patients sometimes experience symptoms that aren’t gastrointestinal in nature, and which are often more problematic than their bowel issues. These symptoms include: fever, colitic arthritis (which migrates along the body and affects one’s knees, ankles, hips, wrists and elbows), pericholangitis (an inflammation of the tissues around the bile ducts), kidney stones, urinary tract complications, and fistulas (abnormal connections between body parts, such as organs and blood vessels).

5. It can greatly impact one’s quality of life

According to the Crohn’s & Colitis Foundation, autoimmune conditions of the digestive tract can highly impact one’s quality of life. For example, the Foundation shared the story of Paige, who was diagnosed with Crohn’s at age 20. Paige had lost 40 lbs on her already petite frame as a result of the disease, and she even had difficulty standing up, since her muscles had become accustomed to her being doubled over in pain. Thankfully, by participating in clinical trials, Paige’s condition is now improving, and she’s regaining her quality of life.

6. The condition can impact one’s mental health too

The Crohn’s & Colitis Foundation states that rates of depression are higher among patients with Crohn’s disease and ulcerative colitis as compared to other diseases and the general population. Furthermore, anxiety is also common among patients who have IBD. Dr. Megan Riehl, a clinical psychologist with the University of Michigan’s Department of Gastroenterology, explains that stress and anxiety can contribute to ‘flares’ of the disease. She also says it’s imperative for patients to find ways to cope with living with a chronic illness, such as cognitive behavioral therapy.

7. A comprehensive physical exam is necessary for a Crohn’s diagnosis

A number of advanced diagnostic tools are used to determine if a patient has Crohn’s disease. These diagnostic procedures include: imaging scans and endoscopic procedures. Imaging scans involve CT scans or specialized X-rays to view your colon and ileum (a portion of the small intestine). Endoscopic procedures, such as a flexible sigmoidoscopy or a colonoscopy, involve the insertion of a tube into one’s rectum, lower colon or entire colon to examine the area in detail.

8. Crohn’s may be genetic in nature

According to John Hopkins Medicine, Crohn’s may be genetic, especially considering it’s more prevalent among people of certain ethnic groups. For example, people of Ashkenazi Jewish descent are at a greater risk of having the disease compared to the general population. In addition, a genetic cause is suspected, since studies have shown that between 1.5% and 28% of people with IBD have a first-degree relative, such as a parent, child or sibling who also has the disease.

9. Environmental triggers for Crohn’s may also be responsible

According to the Crohn’s & Colitis Foundation, the lack of complete gene penetrance and the rapid rise of IBD incidence in certain geographic regions suggests that both genetic and environmental factors contribute to this condition. Several environmental triggers currently being studied include: diet, smoking, viruses and psychological stress.

10. There is hope

If you or someone you know has Crohn’s disease, it is important to get support for your condition. In addition to working closely alongside a team of medical professionals to get the right treatment, patients are encouraged to find a local support group where they can connect with others who are living with the condition. Moreover, patients should consider taking advantage of the many patient resources out there, such as the Crohn’s and Colitis online community, the IBDVisible blog and the patient stories center. Remember, you’re not alone in the fight against Crohn’s!

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