Thanks for visiting our About Us page. We are Rick and Marilyn. Husband and wife. Marilyn has been dealing with Cold Agglutinin Disease for nearly 20 years. Rick has been on the sidelines offering support and hoping to help other CAD Patients or Family Members. Those on a similar quest for knowledge or answers.
The information on this site is about support. Not about medical advice. This accumulated information is more about our journey with CAD. Not about providing medical advice. None of us are Medical Professionals.
Our recommendation is to always seek professional medical advice. The sooner the better. Team up with a Hematologist from the moment you suspect or are advised you may be affected by Cold Agglutinin Disease. Get tested for some other related diseases associated with CAD such as Lymphoma. Rule out what you can.
At the same time educate yourself the best you can. There are varying degrees of this disease. Which in turn may impact your medical health or lifestyle in different degrees.
More About Us.
Rick has a Technical and Engineering background. Marilyn has a Technical background, and is adept at research.
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.
A serious bout with an otherwise common and fairly low key virus, seemed to trigger serious changes, 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. But her work 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. She does not test positive for other things such as Lupus or Lymphoma.
Marilyn did test positive for antibodies to a bacterial infection, Mycoplasma Pneumonia (Walking Pneumonia). Meaning she had it at one point, but it was not active at the time. There seems to be a correlation between having Mycoplasma Pneumonia and ending up with CAD. At least for some of the population. But that is not the only suspected trigger in some patients.
Nor was it what triggered her drastic change. If that could be proven as the source of her CAD. In that case, her CAD would be considered Secondary, not Primary.
Doctors do indicate some infections trigger CAD. CAD can even be temporary for a lucky few. It may surface while the infection is active, then go away. For others this disease is on going for life.
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.
We theorized this Rituxan therapy may have unfortunately caused Marilyn’s second bout with the same virus she had five years previous. 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”)
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 sick for months at a time. After 4 or 5 years of this she decided to retire early at 60. Her health improved once she was able to control her environment to her needs, nearly 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 information 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 will 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.
Our Personal journey with Cold Agglutinin Disease. A more in depth look at a life with CAD.
I was just informed I have Cold Agglutinin Disease. Now What?!
Visit our Facebook Support Group
1,229 total views, 2 views today