Empowered by knowledge, strengthened by community: Mike and Gina’s story
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Retired and looking forward to a new chapter, Mike Brannon’s life was upended by a sudden rare disease diagnosis. Battling extreme fatigue, breathlessness, and uncertainty, he and his wife Gina faced this rare autoimmune disease head-on. With steadfast faith, family support, and the guidance of an informed doctor and the warm autoimmune hemolytic anemia(wAIHA) community, they found strength in each other and a renewed purpose—to raise awareness and advocate for others facing similar rare health challenges
Written by Nicola Miller
Interview with Mike and Gina Brannon
After a busy 40-year career, Mike and his wife Gina were excited by the prospect of his retirement and a move to Missouri to be closer to their children and grandchildren. With their new routine in place, Mike took a part-time job with FedEx to “keep himself busy”, which he greatly enjoyed—life surrounded again by his family was good.
During a routine physical examination, tests revealed Mike had a high ferritin count (a blood protein that contains iron). Mike’s doctor referred him to the phlebotomy1 department for planned treatment to remove blood and the iron it contained. However, on the day of his first scheduled treatment, the doctor discovered Mike was anemic—at odds with his initial test and phlebotomy treatment plan. Anemia meant that he had low numbers of red blood cells and haemoglobin, the protein that carries oxygen. This prompted further testing and a referral to a haematologist oncologist. The next day Mike received a distressing call from his doctor as he explains, “She called me midway through my day, and said, ‘What are you doing?’ I told her I was delivering packages. She said, ‘You need to stop what you’re doing. Go to the hospital. I’ve already set it up, they’re expecting you—you need to stop, park your truck, whatever you have to do, but get to the hospital as soon as possible.”
This was a complete shock to Mike who had previously considered himself to be of good health. But as wife Gina explains there were some warning signs earlier that day. “Prior to this phone call. When he went in to load his truck, he felt some fatigue coming on and shortness of breath—Mike being Mike, he pushed through it.” On admission on hospital, and with the absence of a confirmed diagnosis the physicians began treating Mike with high-dose steroids and intravenous immunoglobulin (IVIG) infusions. After five days in the hospital, Mike’s haemoglobin levels started to improve slightly, and doctors confirmed a diagnosis of a rare autoimmune disorder, warm autoimmune haemolytic anaemia (wAIHA). Over the next few months, Mike’s treatment continued to evolve as he saw different specialists, none specialised in wAIHA—none were able to give him a real understanding of his new diagnosis or what to expect. Mike’s health deterioration continued, and treatment options failed to stabilise him.
Mike explains that fatigue was the most debilitating symptom and was unlike anything he had experienced before—entirely different from normal tiredness.
“This fatigue is sitting on the couch wanting desperately to take a shower, and you just don’t have the energy to do it—you can’t do it. Then there was the inability to breathe. I couldn’t catch my breath. I couldn’t get a breath in.”
Gina also paints a vivid picture of how Mike’s debilitating fatigue had a profound impact on their daily life. She saw Mike’s personality changed from being an active, independent person to someone struggling to even get up due to overwhelming fatigue. “This fatigue was a major challenge, both physically and emotionally, as it took away his ability to function normally and do the things he was used to doing like yard work or simple daily tasks.”
It was far from the retirement Mike had planned.
The decline in Mike’s health also had an abrupt impact on Gina. She became an overnight caregiver, a role which evolved significantly as his condition progressed. While working full-time Gina took on the responsibilities of managing Mike’s medical care, which being in the US, included endless insurance administration, and household duties that Mike could no longer handle. Gina describes the toll, saying “it became a lot” and that “depression on my end set in” as she was juggling the additional responsibilities. However, Gina remains grateful that her role as a caregiver was made easier by the support of their family, including their children and grandchildren who stepped in to help with various household and administrative responsibilities. Without this support, Gina reflects “I don’t know how I would have gotten through it.”
Mike fell into “deep depression” which he attributes primarily to a “lack of understanding” about what was happening to his body and the “fear of the unknown outcome”. Mike was hit hard and felt disempowered by his loss of control when forced to leave his job at FedEx, and in having to rely so heavily on Gina and others. Gina describes experiencing depression herself as she struggled to adjust to the enormity and speed of their evolving situation. She felt great sadness watching Mike’s deterioration and she worried deeply about their future, dwelling on Mike’s mortality— adding to her emotional burden.
During this time of uncertainty, the couple’s son-in-law began intensely researching Mike’s symptoms online looking for greater information on what was going on. This led them to the support charity wAIHA Warriors. After connecting with Karen Jones, president and executive director of wAIHA Warriors, they learned about a forthcoming conference. This conference allowed them to connect with experts, who were able to provide a clear explanation of the disease and its effects on Mike’s body. This marked a turning point for Mike on many levels.
With this new understanding, and a new doctor, an effective symptom management plan was implemented. Initially, Mike’s first physician was “guessing on the treatments”, which was not very reassuring for Mike and Gina. When they were introduced to their current hematologist, this provided much-needed clarity and comfort. Not only did Mike benefit from a more tailored treatment plan, resulting in Mike achieving remission from his symptoms, but he also found a community to connect with.
“Connecting with others who understood our experience was crucial in lifting our anxiety and depression”, Mike explains.
For Gina having their doctor walk them through what to expect as potential side effects and what to expect as normal, was crucial. This allowed Gina to avoid “panicking and calling 911 every time Mike had a reaction”. Mike and Gina contrast this with the experience of other patients they have met whose doctors were not familiar with their rare disease, leading to uncertainty and fear. Having a knowledgeable, communicative doctor who could guide them through the complexities of Mike’s condition made a significant difference in the couple’s ability to cope moving forward.
The guidance and support of the wAIHA Warriors community was also crucial and for Mike, a “lifesaver”. The wAIHA Facebook group became an invaluable resource for the couple allowing them to read about others’ experiences and connect with a community that truly understood what they were going through. Gina states that being able to reach out to and learn from others in the community helped alleviate a lot of the anxiety and depression they were feeling—they no longer felt so alone.
Mike has now been in remission for a number of months, yet the scars of this last year are still fresh. They are realistic that existing treatments are not curative meaning they must learn to live with the uncertainty around the potential for relapse, saying “chances of us going through this again are more likely than not.” However, Mike states that his confidence in his current doctor alleviates much of the anxiety around the uncertainty. Gina describes her “panic mode” whenever she hears others around them mention being sick, as she is now hyper-vigilant about Mike’s compromised immune system. While Mike is more accepting of this, he does note the impact this has on their social life as they look to mitigate unnecessary exposure to possible infections that might trigger a relapse.
Spiritual faith has also played an important role in Mike and Gina’s acceptance, as Mike explains, “Our faith has really helped us to get through this. Without my faith I am not sure how we would have coped.” Gina echoes this sentiment, saying that their “strong marriage of 42 years and their faith have been instrumental” with their local church being a “huge support” throughout. Mike further explains their faith has not only helped them personally but has also motivated them to share their experience and advocate for others dealing with rare diseases. “I am a better person and a more understanding person because of going through this experience.”
Determined to pay it forward, they now feel passionately about the value of advocacy and have become actively involved, including a trip to Washington D.C. to meet with staff of senators and congressmen about the need for better support and understanding of rare diseases. Gina is keen to help others who may be at the start of this daunting journey by sharing their experiences and sharing hope.
Mike and Gina have emerged from a challenging year with a deeper appreciation for the power of community, faith, and perseverance. Their story demonstrates the transformative impact of having knowledgeable medical support and a network of fellow “wAIHA warriors” to lean on.
With 2024 almost behind them the couple’s sights are now set on getting Mike’s retirement back on track as they swap medical administration for travel planning for a long-awaited trip from the US to Mike’s ancestorial home of Cork in the Republic of Ireland.
Definitions
[1] Phlebotmoy – the surgical opening or puncture of a vein in order to withdraw blood, to introduce a fluid, or when letting blood.
wAIHA Warriors
Articles within this digital spotlight are for information only and do not form the basis of medical advice. Individuals should always seek the guidance of their medical team before making changes to their treatment.
This digital spotlight has been made possible with financial support from Johnson & Johnson. The content was developed in collaboration with wAIHA Warriors. All opinions are those of the contributor. RARE Revolution Magazine retains all copyright.
CP-485654 | November 2024
