Picture by Dale Sears

Internal organ involvement is insidious. You might not feel any pain or discomfort until the affected organ is severely damaged. Fortunately, this does not happen most of the time.

The thing one has to remember is that cryo is a systemic vasculitis and can affect any organ and any system in the body. Some things are more likely than others, but pretty much anything can happen. This is why it is important to try to keep your core body temperature up , because if the cryoglobulins start precipitating deep inside your body, you are then setup for internal organ damage.

But sometimes you simply can’t tell that something bad is about to happen until it does happen. A sudden clotting cascade can be life threatening, and a necrotic lesion on the heart or in the brain can be so rapidly fatal that they are frequently found post mortem. A lesion in the brain or heart are simply catastrophic. In some cases people develop various problems from them, but is frequently instantly fatal. One simply falls over dead. Fortunately these are NOT very common. Several people in our support group have had clots in the heart, head, arteries and strokes associated with cryo, and survived (Eileen Propp has survived 2 blood clots – one in the transverse sinus and one in the internal jugular vein.)

Another thing that has not been discussed is the association of antiphospholipid syndrome with cryo. A small percentage of people who have cryo have a tendency to clot excessively. You can wind up with a pulmonary embolism and expire pretty fast. A really bad situation is when someone goes into a clotting cascade, and doctors might not have sufficient time to treat it. Usually it is treated successfully, but death can be rapid, otherwise. you will basically know you have a stroke when (and if) you have one.