DRESSING APPROPRIATELY IS THE FIRST LINE OF DEFENCE:
For patients with Raynaud’s go to: http://www.raynaudsgloves.com.
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BE CERTAIN NOTHING COLD TOUCHES YOU OR ENTERS YOUR BODY BY MOUTH OR INFUSION:
ALERT YOUR MEDICAL PROFESSIONALS
Remind all medical personnel that any and all procedures must be done under warm conditions – examinations, injections, transfusions, treatments, surgeries including open-heart. If you need a transfusion, be certain that a blood-warmer is used, as this brings the blood up to 98.6 degrees Fahrenheit before it is infused into your body. The transfusion apparatus may need to be warmed similarly….we have experienced red cells clumping in a cold needle because the cold agglutinins were activated. No blood would then flow.
MAINTAIN A HEALTHY DIET AND GET PLENTY OF REST
CADys have found different ways of monitoring the state of their blood. Obviously blood tests carried out by a Doctor are by far the best. However, in between these official blood tests we have heard of the following being used.
(1) GRAEME found that his pulse was a very good indicator of my haemoglobin in between blood transfusions. As your haemoglobin falls, your heart will respond by beating harder to meet the demands of your body. You might be able to assess what your rate is when “good” and what it rises to when “bad”. In his case it dropped to about 70 after a transfusion, and rose to 90 by the time he needed another.
(2) Another CADdy reported ” I have noticed also that the level of activity of the antibodies is reflected in my closed eyes. Something like the snow that you see on TV sets. The speed and size of the dots give me an indication of how cold I have been, eg, while sleeping.”
HANDLING OF BLOOD SPECIMENS PER NORWAY’S DOCTOR/RESEARCHER SIGBJORN BERENTSEN
“In theory, cooling of a blood sample should be acceptable provided it is used only for measuring hemoglobin and CBCs and is appropriately rewarmed before analysis. The explanation for this is that the cold agglutinin dissolves from the red cell surface on warming to 37-38 degrees C and the agglutination of cells will be reversed.
In practice, however, I too have occasionally been confronted with technical failures indicating that rewarming either did not work or had not been performed adequately.
Cooling during the analysis itself is a possible explanation in patients with high thermal amplitude CAs. In such cases, I would recommend handling of samples as for protein analysis (with the exception of centrifugation and removal of serum, of course) and running the analysis right away.
For protein analyses (CA-titer, IgM quantification, electrophoresis etc.) correct handling of samples is essential for reliable results. You will find a brief statement on this requirement in several papers, e.g. at page 366 (Table II) in our article in Hematology from 2007. (See our Links Page 2007 Primary CAD-an update.pdf).
In some more detail, these requirements can be described as follows
Vacutainers (sampling tubes) should be prewarmed.
After sampling they should be kept at 37-38 degrees C until serum is removed from the clot.”
Table II – Diagnosis of Primary CAD
CriteriaComments & Precautions CriteriaChronic Hemolysis
Cold Agglutinin titer >= 64 at 4 degrees C
Typical DAT findings
Polyspecific DAT positive
Specific DAT positive for C3d
No malignant disease by clinical and radiological assessmentSpecific DAT for IgG is usually, but not always, negative. Procedures: blood and serumHemoglobin level and blood cell counts
Routine assessment for hemolysis DAT.
Specific DAT for C3d and IgG Cold Agglutinin (CA) titer at 4 degrees C.
Complement assessments (C3, C4 and CH50).
Electrophoresis with immunofixation.
Quantification of IgM, IgG and IgA.Blood specimens for CA and immunoglobin analyses must be kept at 37 degrees C from sampling until serum has been removed from the clot. Immunofixation should be performed even if no monoclonal band is visible on electrophoresis. Procedures: bone marrowTrephine biopsy ( including immunohistochemistry)
Flow cytometry of aspirateMorphology and immunohistochemistry of trephine biopsies should be assessed by an experienced hemopathologist RadiologyChest X-ray
Abdominal ultrasonographyMorphology and immunohistochemistry of trephine biopsies should be assessed by an experienced hemopathologist
VACCINATIONS AND VITAMINS:
The medical professionals say that people with autoimmune conditions SHOULD NOT get inoculated with any live vaccines such as the Shingles Vaccine.
Everyone who is able, should get the annual flu vaccine which is a deadened virus.
Many doctors recommend taking Daily Folic Acid supplementation pending folate tests. They may also suggest taking Vitamin D3, following a test for deficiency. Dosages seem to vary among physicians. Folic Acid helps build new blood cells.
Iron Supplementation may also be recommended but generally is not helpful for CAD Autoimmune Hemolytic Anemia unless Ferritin tests indicate deficiency.
ALWAYS CHECK WITH YOUR MEDICAL PROFESSIONALS REGARDING ALL VACCINATIONS, VITAMIN SUPPLEMENTS AND TESTS.
We suggest wearing a Medic Alert bracelet or necklace at all times (See www.medicalert.org)
Keep in close touch with your doctor and get blood checks as directed.
Seriously consider moving to a warm climate if at all possible.
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Diagnosed with CAD