What appeared initially for Marilyn, was simply an abnormal result on a blood test. An indicator that remained static and had little implication for several years. It initially had zero impact on her lifestyle.
A serious bout with an otherwise common, and fairly low key virus, seemed to trigger serious changes. Changes that seem to manifest themselves nearly overnight. Marilyn’s Cold Agglutinin Disease suddenly became more advanced and impacted her life in a more negative sense. It affected her home and personal life somewhat. Her professional work life was really impacted, in various negative ways.
After lots of testing doctors theorize in Marilyn’s case she is considered Primary CAD (Primary = Unknown Cause). She does not test positive for other things such as Lupus or Lymphoma.
A CAD that has an identifiable underlying condition such as an infection, certain cancers, etc., would be considered Secondary.
Marilyn did test positive for antibodies to a bacterial infection, Mycoplasma Pneumonia (Walking Pneumonia). Meaning she had it at one point during her life, but it was not active at the time.
Medical community evidence seems to indicate there is a correlation between having Mycoplasma Pneumonia at some point, and ending up with CAD. At least for some of the CAD population. But that is not the only suspected trigger in some patients.
Doctors do indicate some infections trigger CAD. CAD can even be temporary for some. It may surface while an infection is active, then go away. For others this disease is on going for life. Unfortunately if it continues, it has the potential of impacting ones lifestyle.
Over the years Marilyn’s CAD has progressed from something more simple and mild, to a more severe Cold Reactive disease. Manifesting further into visual physical indicators, and on to a more severe form of the disease. With increased sensitivity to even comfortable temperatures a normal person would enjoy.
With a diminished immune system she has experienced two very serious bouts with a fairly common virus (Parvo B19). A virus that affects nearly all the general population at one point in their lives. A high percentage of kids come down with it. For a healthy individual (non-CAD), the virus quickly passes with only minor symptoms. More of just an inconvenience for a day or two. More details on the specific virus is discussed further down this page.
In these two bouts, Marilyn’s Red Cell Production completely ceased for 7 to 10 days. Dropping her Red Blood Counts to alarmingly low levels (Severely Anemic) in a very short time span. Resulting in paramedics at the house, ambulance transport to hospital emergency room, lengthy ICU hospital stays, blood transfusions, endless testing, and lengthy follow-up.
Coming out of her first bout Marilyn even agreed to subject herself to an experimental therapy at the time. (Experimental for CAD patients). In hopes of putting her CAD in remission or at least lessening its impact. This therapy involved a product called Rituxan.
Marilyn agreed to take the series of IV Infusions of Rituxan. Though some commonly refer to Rituxan as Chemotherapy, it is actually a type of Antibody Therapy. It does not come without risks. The “black box” warning the drug company has to publish, is a scary thing to read, when making the decision to put that in your body.
Unfortunately Rituxan had little to no benefit in Marilyn’s case. The costs passed on to our insurance company, or through our insurance company, were also staggering. In hindsight we often think she should have taken a way less aggressive approach at the time.
We do note here that through the years some CAD contacts have reported that Rituxan does benefit them. Like many things concerning CAD, nothing seems consistent from patient to patient. There are always two sides to any story. A decision to use any from of treatment ultimately falls to the patient, or legal care giver.
We theorized this Rituxan therapy may have unfortunately caused Marilyn’s second bout with the same virus she had five years previous. When we say “we”, it was not “just the two of us” of course. A patient doesn’t have the power to suggest, or prescribe medical treatment. We base this what we were told at the time by medical professionals.
In her case a virus that an individual is only supposed to be affected by once. One that your body is suppose to create antibodies for and protect you the remainder of your life. Rituxan may have stripped away the antibodies that should have been created during the first bout of Parvo B19. This is a separate subject in itself. See: Parvo B19 Virus – Marilyn’s case (Also called the “Fifth Disease” or “Slap Cheek Rash”)
Fast forward some years. Marilyn has become so “Cold Reactive” she has to avoid things like, drinking cold or iced drinks. Or eating cold or iced foods. Not swimming in a pool, or having any type of skin exposure to even moderately cool temperatures.
Our house temperature has been upped over the years from the low seventies (Fahrenheit), to now 79°F year round. We feel fortunate we live in a warm climate (Las Vegas, Nevada USA).
Her work place environment that involved air conditioning & heating she could not regulate to her tolerance. Caused her numerous spells of eventually becoming severely anemic. To the point she would have to be signed out of work, for months at a time. After 4 or 5 years of this work place issue, she decided to retire early at 60. Her health improved once she was able to control her environment, to her own needs 100% of the time.
It has been a roller coaster of life events. Emergency Room visits, Hospital Stays, Blood Transfusions, endless Blood Tests, endless Doctor visits. Even dropping Doctors that seemed uninformed, unprepared or unsympathetic. Trips to Scripps Clinic in La Jolla California for more expertise and answers. Antibody/Rituxan Therapy, Bone Marrow Tests, IVIG Therapy, and much more.
Neither of us are medical professionals. None of our information should supersede professional advice.
We only hope to offer what information we have learned over the years in layman terms.
With a goal of helping you gather information while pointing you in the right direction. At the same time providing a platform to share your own information or experiences, with other Cold Agglutinin Disease Patients. Aiding all in increasing their arsenal of information to help cope with this disease. To prepare you for some of the unexpected issues you may encounter along the way. To alert you to emerging treatment options.
At some future point we can only hope main stream medicine gets more involved and more educated on this disease. To the point they change and standardize testing protocols, research, and treatments. And to hopefully come up with some type of cure, rather than treatments that are not permeant.
Our Personal journey with Cold Agglutinin Disease. A more in depth look at a life with CAD.
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