Request For Your Help

Many of you have been very generous in offering your help to Harvey and me as we go through this transplant journey. We thank you, from the bottom of our hearts. Now I do have a serious request to make of you, one that might save lives. I am not asking for your money, just a bit of your time and effort. Please pitch in and help.

In the last two posts we have talked about getting safe transfusions of blood products. Even if you are not a transplant candidate, your membership in the CLL club makes you an excellent candidate for requiring blood product transfusions at some point in the future. Anemia is a frequent complication of CLL, caused either by the disease, chemotherapy drugs or autoimmune disease (AIHA). Platelets can tank as well for similar reasons. Life giving red blood cell and packed platelet transfusions are a mainstay of taking care of CLL patients under these circumstances.

  • My good friend “Doc with CLL” has done a bit of digging. My own searching confirms his results.
  • Most blood banks recommend using irradiated and leukoreduced blood products (red blood cells, platelets) for transplant patients as well as patients with any level of immune dysfunction.
  • Irradiated and leukoreduced blood products are a tad more expensive than the garden variety blood products, but not prohibitively so, and definitely not as expensive as the complications patients can run into if the wrong products are used.
  • The problem seems to be that at the point of delivery of the products, namely at your doctor’s office, there is an appalling lack of understanding of this requirement.
  • Under real emergency situations (as in you have been in a car crash and the emergency medic needs to stabilize you right away) there may be reasons for side-stepping these best practices guidelines – a rare exception you would agree.
  • The only way to cover this hole in the safety net is for patients to be well informed and vocal advocates for themselves. If you are a CLL patient and therefore by definition you are an immune compromised person, you should always get irradiated and leukoreduced blood products.
  • Here are some quotes: “On September 18, 1998, the Blood Products Advisory Committee of the FDA recommended universal leukoreduction of all cellular blood components, except granulocytes. Many other countries already required universal leukoreduction of blood components. Leukocyte reduced components are more expensive. However, the Biological Practices Committee stated that the clinical benefits far exceed the increase in blood component cost. The advantages of leukocyte removal include decreased risk of (1) Febrile reactions (2) HLA alloimmunization & platelet refractoriness (3) Viral transmission (4)Graft vs. Host Disease (5) Postoperative infection (6) Immune suppression (7) Post transfusion purpura.

That should be a long enough list of good reasons why CLL patients should know about and insist on getting irradiated, leukoreduced blood products only. So, how many of you would actually be “pushy” enough to insist on this for yourself or your family member with CLL? As my friend “Doc with CLL” confirmed, many physicians may be aware of these guidelines somewhere in the back of their minds but may fail to connect the dots when it comes to writing out the script. The only way to prevent shooting ourselves in the foot with these “oops!” situations is to be aware of the issues and speak up loud and clear. You need to be your own best advocate. Period.

How many CLL patients do you think are even aware of these best practices guidelines with reference to safe blood transfusions? I have done my bit by preaching the virtues of getting irradiated and leukoreduced blood products. Several hundreds of you have read my posts and got the message. How about the rest of our folks out there? How do we reach them?

Our best defence is our willingness to watch out for each other, get the word out by taking the trouble to get it out. So, here is my request. Please make sure you speak up for yourselves when it comes to getting safe blood transfusions. Please make an extra effort to get the word out to others in our patient community. Money is not always a solution to what ails us, information and concerted efforts are often more crucial. We are all our brothers’ keepers, please do your bit to help.

If not you, then who?

Chaya