Fighting a rare immune deficiency disease
Forrest Mounts’ healthy appearance and positive attitude belie the struggles he has endured for over two decades. From the age of 19, Forrest battled constant and severe infections (sinus, respiratory and ear, primarily) baffling doctors. After years of inquiry, he was finally diagnosed with Common Variable Immune Deficiency (CVID) at 26 years old. Yet, in Forrest’s case, there is nothing common about this disease. He is essentially aglobulinemic meaning he has no detectable levels of immunoglobulins which are essential for warding off even the most minor of illnesses. There is an alphabet soup of immunoglobulins - IgA, IgG, IgM, IgE and IgD - that are all essential for an immune system to work properly and Forrest has none of them.
“Zip. Nada. Zilch,” he says with a wry smile. In spite of his rare illness or maybe because of it, Forrest focuses to healthy living. He defied a smaller and slighter body size by eating well and doing weight training, culminating in winning the Mr. California bodybuilding competition not once, but twice in his early twenties. He pursued a degree in Diagnostic Medical Ultrasound Science and enjoyed a career as an ultrasound technologist (sonographer).
When finally diagnosed with CVID, Forrest began taking plasma-based medicine (intravenous immunoglobulin or IVIG) to address the absence of immunoglobulins in his body and this allowed him to continue to work and make a positive contribution to the world. It takes hundreds to thousands of blood donations to be able to extract the tiny amounts of lifesaving blood plasma elements needed for IVIG that sustain people like Forrest for their lifetimes.
“The generosity of blood donors has not only kept me alive,” says Forrest, “but has given me a life.” says Forrest.
More medical challenges
Monthly doses of IVIG allowed Forrest to manage his condition for 12 years, along with an army of physicians and healthcare providers from cardiology, immunology, hematology/oncology, endocrinology and more. But CVID was taking its toll with a host of secondary effects including blood clots in his arms and legs, hypothyroidism, diffuse lymphadenopathy, autoimmune hepatitis, an enlarged spleen and liver among others. Now, Forrest faces the largest obstacle of all – cardiomyopathy, a weakening of the heart muscle, with resulting congestive heart failure (CHF). His deteriorating heart condition led to the insertion of an intracardiac defibrillator (ICD) which acts as a pace maker, rhythm maker and a defibrillator all in one.
“I’m a trend setter,” laughs Forrest, describing the high-tech device that keeps his heart beating. He nurtures an upbeat attitude as carefully as he manages the host of medical challenges.
An uncertain future
Forrest, now 44 years old, surprises people because he, like many with immune deficiencies, looks to be in the peak of health. He speaks positively even as his heart condition worsens and the discussions begin regarding complexities and roadblocks of a heart transplant in a person with severe immunodeficiency. CVID may beat him up, but Forrest continues to beat it back one day at a time.
Throughout his life, Forrest has been a person who strives to make the world a better place. While it’s very hard to no longer be able to work, Forrest seeks to make a difference where and when he can. Conveying his gratitude to blood donors is important. Blood donors have provided the essential blood needed for plasma-based medicines and continue to help as he faces an uncertain future.
“Thank you to all who donate, especially those who donate plasma regularly for patients like me who depend on you,” says Forrest. “You are truly giving life.”
Yes, you do save lives.