I haven’t come across any medical literature indicating that Fabry disease weakens the immune system, but many individuals with Fabry disease experience organ failure and consequently require transplants.
The immunosuppressive medications necessary for lifelong use post-transplantation serve to suppress the immune system, facilitating the acceptance of transplanted organs by the body instead of rejecting them as foreign entities. While these drugs are crucial for the success of the transplant, they entail adjustments in lifestyle and enduring restrictions. They not only heighten susceptibility to infections but also exacerbate the severity and duration of any infections contracted due to the compromised ability of the body to combat them.
Since my transplant in September 2020, even minor infections that would typically resolve spontaneously or with simple home remedies often necessitate a week-long hospital stay for intensive intravenous antibiotic therapy. The realization that any infection could swiftly spiral out of control and pose a threat to my life is indeed daunting.
Following each new infection, there is a waiting period of a few days for blood and urine cultures to yield results, enabling healthcare providers to pinpoint the specific bacterial strain and prescribe the most effective treatment. Typically, I initiate a broad-spectrum antibiotic initially, awaiting identification of the precise bacterial culprit and the most appropriate medication for combatting it.
Given the current health concerns stemming from respiratory syncytial virus (RSV), the annual flu upsurge, and potential exposure to infectious individuals, transplant recipients must adopt additional precautions to safeguard themselves. Owing to my compromised immune system, I have refrained from air travel and theater visits for years. Indoor dining at restaurants is a rarity for me, although outdoor dining remains a possibility, contingent on weather conditions. I have forgone numerous significant events to mitigate the risk of falling ill. Despite being relatively healthy, the looming risk instills in me a sense of heightened vulnerability.
Strategies for Maintaining Health
Outlined below are the personal dos and don’ts that I adhere to, encompassing guidelines from my transplant physician as well as general COVID-19 precautions. These measures serve to reduce the likelihood of contracting infections beyond my body’s capacity to combat and aid in optimizing my immune system.
- Adherence to prescribed transplant and other medications on a daily basis.
- Avoidance of unpasteurized foods and beverages.
- Steer clear of processed, raw, and undercooked foods.
- Consumption of bottled water due to susceptibility of our home’s water well to germs.
- Minimization of direct sunlight exposure to mitigate adverse effects from antirejection medications.
- Compliance with vaccinations for COVID-19, influenza, RSV, and other relevant illnesses.
- Regular handwashing and utilization of hand sanitizer as needed.
- Maintenance of skin health to prevent dryness and fissures that can serve as entry points for bacteria.
- Wearing masks at indoor gatherings and in crowded settings.
Sustaining a healthy lifestyle by:
- Eating nutritiously
- Engaging in physical activity
- Maintaining an optimal weight
- Ensuring an adequate amount of sleepAbstaining from smoking
- Limiting alcohol consumption.
Jerry undergoes penicillin allergy testing. (Courtesy of Jerry Walter)
While vaccinations are essential for individuals with weakened immune systems, our response to them is generally less robust compared to the general populace. For instance, post my COVID-19 vaccinations, I exhibited a modest antibody response, indicative of some level of protection. In contrast, my wife Angela demonstrated a response ten times more pronounced. Consequently, I face an elevated risk of adverse outcomes from COVID-19.
An additional measure I undertook to bolster my ability to combat infections was to ascertain my allergy status concerning penicillin. Despite healthcare providers recommending treatment with penicillin, I had refrained due to childhood beliefs instilled by my mother regarding an allergy to the medication. After more than six decades of echoing this belief, an allergy test conducted in December revealed that I am not allergic to penicillin after all. This newfound knowledge expands my treatment options for combating future infections.
I aspire that my experiences shed light on the realities of life post-organ transplant for others. Like many individuals, my life has undergone transformations since the onset of the pandemic. The post-heart transplant journey is undeniably complex but ultimately rewarding. Despite the challenges, I lead a fulfilling life brimming with possibilities and eagerly anticipate ticking off items on my bucket list.
Note: Fabry Disease News is exclusively a platform for news and information pertaining to the disease. It does not dispense medical advice, diagnosis, or treatment. The content serves as an informational resource and should not be viewed as a substitute for professional medical guidance. It is imperative to consult your physician or a qualified healthcare provider for any queries concerning medical conditions. Refrain from disregarding professional medical advice or delaying seeking it based on information obtained from this platform. The viewpoints expressed in this column do not necessarily align with those of Fabry Disease News or its parent company, BioNews, and are intended to stimulate discourse on matters related to Fabry disease.