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.
We would like to thank and show our grateful appreciation to all the un-named individuals that have contributed, and continue to contribute information. Information that we use on this site in an effort to benefit all. We couldn’t do this without you.
The information on this site is about support or general information. At no time take anything on this site as medical advice. This accumulated information is more about our journey with CAD. Also lots of input from others with CAD. An attempt to communicate information in laymen’s terms. It is a “big picture” of what a CAD may, or may not, experience.
We may reference other outside sources. That info may or may not be factual or even relevant to what you are experiencing. It is your own responsibility to do your own in depth research based on you and what your medical professional is telling you.
We are not about providing specific medical recommendations. Not on our website or Facebook social media. None of us are Medical Professionals.
Be very cautious when using any social media to obtain your information. Whether you are using our own Facebook Group, or other Facebook groups associated with valid and even professional appearing sources of information.
Often there are over zealous or opinionated Facebook Group members that will either contradict valid information, or post information or dispute information they may have never personally been exposed to, or attempt to push a one sided point of view at the expense of others. Some groups take no action to weed out such members.
Our group receives complaints from some of our own Facebook members about such members. Some knowledgeable and helpful members get to the point they are even afraid to speak up, or post valid info, due to some of these contradictory or confrontational types. Some members even indicate they came to our social media group to avoid this very conflict in other groups.
All of this is unfortunate for those seeking opinions and information that allows someone to form their own opinions. Just know it exists.
Just like any social media source there are those that seem bent on just creating conflict. Or perhaps they simply do not recognize what they are doing to the group? This occasionally leads to deleting comments and/or banning members. We do attempt to weed these members out. Often based on IM complaints, or “flagged to admins”, by other members.
So remember. Social media is a bunch of opinions. Some factual, some not. You have to approach the information as food for thought. Then research on your own.
Bear in mind, most CAD’s that have been seen and treated by multiple Medical Professionals, are often told conflicting information even by those very doctors.
So no lay person can certainly provide you a course of action. Especially via social media based on their own experience, what they have read, or what they have been personally told.
Your individualized personal health conditions are also a very large factor in this disease. In your testing, treatments, and how you have to deal with things that may impact your health.
Our recommendation is to always seek professional medical advice for anything you question. The sooner the better. From multiple professional sources, so you have a variety of professional opinions to base important decisions on.
Team up with a Hematologist from the moment you suspect or are advised you may be affected by Cold Agglutinin Disease. One versed in CAD is even better.
Then make the best decisions you can, based on what information you have gathered and confirmed via medical professionals.
Consider getting tested for some other related diseases associated with CAD such as Lymphoma. Rule out what you can.
At a minimum collect baseline test results from the moment you know you are CAD positive. From that point on, keep your own paper copies of testing results, different symptoms, changes you identify, copies of medications prescribed and taken, side affects, and anything your doctor(s) recommends or tells you that is significant in any way. Keep these items organized in chronological order.
At the same time educate yourself the best you can. Try to understand the basics of tests being run, and why. Know there are varying degrees of this disease. Though some CADs tend to ignore this, if they are personally stagnated where they are. Just know you may be affected differently than anyone providing their opinion. As more CADs share their personal information you will find just how apparent, everyones experiences differ.
There are varying degrees in doctor knowledge of CAD. As well as medical professional support people.
All of which, in turn may impact your medical health or lifestyle in different degrees. Don’t wait until you are flat on your back in the Emergency Room trying to dig up facts. Don’t be intimidated into not switching doctors if you are being treated by someone that has limited to no knowledge of CAD. You seem to be getting worse. Or you feel you just can’t communicate your concerns to your medical professional.
More About Us.
Rick has a Technical and Engineering background. Marilyn has a Technical background, and is adept at research.
Marilyn is also a CAD. Dealing with the disease since around the year 2000. Both Rick and Marilyn have in-depth knowledge of CAD blood testing, and some of the issues CADs have to deal with concerning getting accurate results.
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 “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.
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.
I was just informed I have Cold Agglutinin Disease. Now What?!
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