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Managing CAD

A CADdy gets dressed to go out.....

The following are some suggestions we offer from our own personal experiences.  If you have anything to add to our list, please contact us.

When you have CAD, you need to be certain that you keep warm at all times. For some, anything cold entering your body could cause an autoimmune response resulting in red cell destruction.

Dressing appropriately is the first line of defense:

  • Wear warmer clothing summer and winter because air-conditioning is as much a problem as cold weather.

  • Don't forget to dress warmly in your home too!

  • For outside, be prepared like a good scout.  Always carry a scarf, sweater or jacket and cover-up your extremities with gloves and socks.  Hats, headbands and/or scarves work well outdoors and in the air-conditioning and look nice for the gals.

  • Wearing 100% Silk long underwear is a wonderful option since it will keep you warm and won't interfere with the fit of your clothes.  An excellent product is Thermasilk made by Terramar Sports Worldwide and can be obtained by contacting Trailgearusa.com.  Tell Sheri you were referred by this site, coldagglutindisease.org

  • 100% silk glove liners are also available at Trailgearusa.com.

  • For guys, thermalsilk or woolen thermal underwear is great.  You can also wear two pairs of socks  to try to isolate your feet from the cold ground. Graeme has bought oversized sneakers so that he can wear two pair of woollen socks to try to keep his feet warm.

  • Mountaineering type shops are excellent for buying warm clothing.

  • You can also buy hand warmers.......small plastic bags with fluid and a bit of metal. You flick the metal and it sets off a chemical reaction producing heat. They can be restored by boiling them in water.  Carry hand warmers in the car....keep them in your pockets too.  Warmers are also available in larger sizes.

  • New Zealand products of possum - wool and the merino - possum blends are extremely soft and light and they make lovely jerseys, gloves etc.

    The possum hair being a hollow fibre, is wonderfully warm to wear. 
    Merino is a high-country sheep and has very fine wool to keep it warm in the snow.

    Until fairly recently possum wool was very difficult to process. Dyeing was a particular problem. But for the last 15 years or so beautiful possum wear has come on the market. It has become one of the most popular articles bought by overseas tourists, and many of us New Zealanders would not be without our possum jackets, cardigans, ponchos, gloves, socks, hats and scarves.

    'Norsewear' www.norsetech.com is one brand, but we suggest that anyone interested in these products should google around the words "New Zealand, possum wear, possum wool, merino possum blends" and suchlike. There are many firms supplying these articles and there is a great deal of information on the internet.

  • New Zealand also has a good range of sheepskin products available and Graeme can vouch for their calf-length boots. See the Mi Woollies range at http://www.miwoollies.com

    Furthermore Australia is also a major producer of sheepskin footwear products which can be found at some local retailers although most are best found on-line through, PlanetShoes.com, Amazon, ShoeBuy, Overstock, L.L. Bean, Zappos and others. As far as pricing goes, this varies greatly so search many sites to compare features and read the descriptions carefully so you don't end up with faux or synthetic sheepskin. You will find that brands of similar quality can vary a lot in price. Fred recommends the LAMO and Acorn brands which are similar in quality, styles and features to some more expensive brands. Finally remember sheepskin footwear (boots, booties & slippers) have different care requirements than other footwear, see; http://www.overstock.com/guides/sheepskin-boot-fact-sheet.

  • This site sells gloves specifically for Raynard's victims: http://www.raynaudsgloves.com/store/product.php?productid=1

  • This was supplied by Roberta:
    Prolotex Far Infrared Therapy Gloves and Socks are available from
    http://www.therapygloves.com

  • Juhi said:  In my case, I always had a hard time finding shoes that would keep my feet warm.  I had the opportunity to try and test a pair of the emu boots with sheep lining, and it worked.  For the first time, my toes are staying warm and not turning blue (most of the time).

  • Claire Morgan from the Isle of  Man sent some suggestions she has tried that help Chris:
    We take a hot water bottle out with us which Chris places on his lap whist driving when its very cold and on longer journeys a flask of hot soup or tea is a good idea.... and those emergency foil blankets available from camping stores are a good idea in the car or handbag. We find thin insulating layers best rather than one thick garment, easier to take off it you need to. Have seen some heated hats, gloves and footpads for shoes at Maplins electrical store they have a web site, but not sure how effective they are. We have tried the battery gloves but found them bulky and heavy when the batteries are in them. Finally a hot bowl of porridge in the morning is a good idea, and hot ginger punch helps on a cold day
     

  • Claire also advised:
    One useful tip I found searching the internet for anything to help Chris.
    I found a site for the SAS about hyperthermia which stated you should never rub extremities exposed to cold as this can cause more damage. Nor should you use artificial heating, but use body heat for your hands putting them under your arm pit or groin is the best way, or you can use blankets. They also said to move your arms like a windmill back and forth fast to get the heart pumping.

  • Elsa told me about her electric boots:
    www.columbia.com  has a tab for Columbia Stores and Outlets, and guess what, it told me there were two shops where I live in Christchurch, New Zealand which sell these boots....or there were before the earthquakes!  You find the boots under their Footwear tab, and there are both men's and women's.

    The boots are designed for winter sports enthusiasts, and as such are often just what CADdys are looking for. They look pretty snazzy to me.

    The advertising tells us
    "The boots have built-in rechargeable batteries and electronic controls that provide three temperature settings for maximum protection from the cold.
    On the low setting, heating pads located under the ball of the foot deliver warmth for 8 hours; on high, expect 3 hours of heat where your foot needs it most. Rustproof alloy gaiters and convenient speedhooks hold the foot firmly in place for maximum stability during serious mountain trekking, snowmobiling, ski lift operation, or Arctic exploration. Combine these features with Bugathermo’s durability, waterproof construction and Omni-Grip® traction, and you may very well have the greatest winter boot to walk the earth."
     

  • Karen has advised that "cayenne pepper capsules" are great for keeping hands and feet warm.  You can get these in 40,000 units of heat and work up to 100,000 heat units. She said they are treated with a buffer so they won't upset your stomach. they work wonderful, and she has used them for years during the winter months and they really do the trick! 
     

Be certain nothing cold touches you or enters your body by mouth:

  •   No ice.

  •   No cold drinks. Instead of drinking cold water, try warm, even hot water, it's not so bad.

  •   If you can't live without ice cream, let it melt a bit.

  •   Always use warm water when washing and also brushing teeth.

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 healthful diet and get plenty of rest:

  • Exercise is great for your body and your head but don't overdo it. 

  • Do everything in moderation and you can't go wrong. 

  • Listen to your body!

    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)  I (Graeme) found that my pulse was a very good indicator of my hemoglobin in between blood transfusions. As your hemoglobin 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 my case it dropped to about 70 after a transfusion, and rose to 90 by the time I needed another.

    (2)  Another CADdy told me "
    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."
     

    If anyone has other methods we could add here, please let us know.

Handling of Blood Specimens per Dr. 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

 
    Comments and Precautions
Criteria
 

 

 

 

Chronic 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    assessment
 

Specific DAT for IgG is usually, but not always, negative.

 

Procedures: blood and serum


 


 

Hemoglobin 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 marrow Trephine biopsy ( including immunohistochemistry)
Flow cytometry of aspirate
Morphology and immunohistochemistry of trephine biopsies should be assessed by an experienced hemopathologist
Radiology Chest X-ray
Abdominal ultrasonography
 

 

Inoculations and Vaccinations

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 deaden virus.

 

We suggest wearing a Medic Alert bracelet or necklace at all times.   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.

Please use the Contact Us page to share your suggestions with us.