MARILYN – Her personal story of CAD

Be advised we are not Medical Professionals. The Admins of this site are simply a Husband and Wife team attempting to help others. Marilyn has known she has had Cold Agglutinin Disease (CAD) since around the year 2000.  

At no time use our information in lieu of professional medical care, advice, or treatment.  We highly recommend once you suspect or know you have CAD, you seek out a Hematologist.  One that is up to speed on CAD testing and treatments.  Preferably one that is successfully treating other CAD patients.   Don’t be afraid to get multiple opinions, get referrals if needed, or switch doctors.

Our personal journey and thoughts concerning Cold Agglutinin Disease

We believe Cold Agglutinin Disease (CAD) can initially surface in a mild form for some.  That is based on experience, observation, and input from others with CAD’s.  It can remain that way for some time.  Perhaps years?  Not impacting a persons lifestyle or causing noticeable health issues.  Basically an indication on a blood test.  For some lucky few, evidence indicates the condition may even be temporary.

Beyond mild, patients primarily find out they are anemic to some degree.   Either via symptoms, or complaints to their doctor that leads to investigative blood work.  Blood testing in different stages of CAD, can pick up a variety of abnormalities.

Other people with CAD may be seriously affected from early on.  Requiring lifestyle changes and medical intervention from the very get go.

While many CAD’s indicate symptoms start out rather mild.  For some, things tend to increase in severity as time goes on.

In all cases it is wise to be tested for possible underlying causes that may be more serious and requiring medical treatment.  While medical experts indicate CAD can often be a spin off from an infection.  They also indicate it is often a precursor or indicator of things like Lymphoma.  Therefore it is highly recommended you insist on having a Bone Marrow Biopsy done to eliminate other possible causes.

Our story originally began as we ourselves started trying to answer many questions when Marilyn was first notified she was CAD positive.

Questions about a disease, that 20 years ago few people were talking about. Information and advice accessible by the general public was hard to come by.

During the original onset of Marilyn’s disease, most Doctors or Labs had no exposure to patients that had the disease. Also zero consistent alternate protocols existed to deal with testing blood samples.  Especially the CBC/RBC test that poses problems when not resulting properly with the more cold reactive patients.  Testing problems are due to the clumping factors CAD blood presents.

For severe Cold Reactive CAD’s please review our Alternate Blood Testing Protocol document.  Bear in mind, mildly affected CAD patients may never have to deal with difficulties in blood testing.  Also we are mostly talking about a CBC/RBC test.  Many other blood tests seem unaffected.

Fast forward to the present (2019), we still continue to run into blood testing facilities that are not prepared to handle highly reactive CAD Blood properly.

In the majority of cases it becomes much more than just identifying yourself as a CAD patient at the onset of your blood draw.   You better be prepared to explain special techniques, or have written documentation (best to have a copy of something written by your doctor on their letterhead) to get techs/supervisors/managers/doctors up to speed.

You will often be viewed as not knowing what you are talking about, until your CBC/RBC tests fail time after time.  Other than negative health issues, dealing with conflicts to get an accurate RBC/CBC Blood test result is probably one of the most frustrating aspects of having this disease.

We continue to run into Phlebotomist’s (Techs trained to collect Blood via venipuncture) that have no clue about CAD.  Or any special techniques or training, or protocol within the lab facility for collecting from & testing patients with higher cold reactive blood.

This isn’t isolated to tech’s either.  Often it is the system/process in place and all of its parts and pieces.  We continue to run into it with Doctors, blood service supervisors, managers, the actual lab testing staff, Emergency Room staff and ER Doctors.

Even as recently at 2019, during an encounter with 911 first responder paramedics in our home.  We found they have no knowledge of CAD.  We had to caution against starting a saline IV Drip that was cold.  This was our second encounter with paramedics having to do with a cold saline hazard.

Where we see our Website and Social Media headed?

We try to help you answer questions in layman’s terms.  But also welcome input from professional sources.  We simply want to be an informative support group.

As our base of Patients, Family members, Medical Professionals and Researchers continues to grow. We hope to connect Patients with information they seek. Provide patient feedback for Medical Professionals that need to get up to speed if they suddenly encounter their first patient.  We also hope to establish a connection source for Medical Researchers.

It would be nice to further assist in better educating the medical care system out there.  To establish and standardize required alternative blood testing protocols. To also establish a flow chart/decision tree for Patient information to diagram consistent analytical testing and treatments, and provide a logical explanation to the patient.  As to the “why” or purpose of all the related testing.

As a patient, beyond your personal health care concerns, you will also face considerable hurdles should your disease become more Cold Reactive.  Work place concerns to accommodate your need to stay warmer than a normal person.  Attempts to communicate your affliction to management.   Even job security and the threat of job loss if your employer is unsympathetic.

This disease can progress into perhaps a full blown disability or handicap.  Depending on your point of view.  But try to convince entities such as employers and government agencies.  You may face considerable struggles and hurdles when applying for and attempting to get approval for disability benefits, sick time off work on a reoccurring basis, or extended time off during cold spells, FMLA protection, etc.

This site and its content is all non-profit and at our own time and expense.

I was just informed I have Cold Agglutinin Disease. Now What?!

1,489 total views, 9 views today