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
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15 comments on "Your Good Deed For The Day"
Follow-up comment rss or Leave a TrackbackChaya - Thank you for continuing to educate us! In my short time (18 mos.) with CLL, I had never read about irradiated and leukoreduced blood products. Being a bit more pushy than the average patient, I will definitely insist on these blood products if/when they are needed.
All the best to you and Harvey,
jbn
i received four transfusions (packed red cells) which were irradiated per dr.’s rx. making this known to all cll patients is yet another reason for reading your elucidating materials.
wishing harvey all the best.
lloyd shane
Afternoon, Chaya…
After reading this I was surprised that apparently one has to specify irradiated and leukocyte reduced blood products in some hospitals, as the two transfusions I received last year both were cleaned.
I did not know the why or wherefore of those terms then, but on seeing their purpose now, I sent an email to my doctor this afternoon asking if this was routine here at Strong memorial Hospital.
I just received the reply from her, and she confirmed that they routinely give ALL their patients irradiated and leukocyte reduced blood products and they’ve been doing that for some time!
Good information, though…keep it coming, I read every word you write and most of the abstracts you point out.
My best to PC…errr…”Harvey”. Us 11qs have gotta stick together!
Harley Dixon
Oh my, I had no idea. Now I am informed. Thank you!
Chaya and Harvey,
Warm wishes for continued good progress!
Thanks for the heads up on irradiated and leukoreduced blood products. I will check with my primary care doc, onc, local hospital(s)re: this info.-as well as pass info on to family and friends. Maybe the ripple effect from this pebble of knowledge we have received from you and which we each then toss out, will indeed save some lives.
Harvey has been advised to get one of those Medical Alert bracelets - one that says he must get only irradiated and leukoreduced blood products for the rest of his life.
This may be a good way to go for other CLL patients as well. Medical personnel have become trained over the decades to take these MediAlert bracelet seriously and it might cut down on the arguments and hassle, especially in an ER type situation where the doctors are not all that familiar with our disease specifics.
What do you guys think about this approach?
Chaya
Very important advice from Chaya. I will remind the members of my CLL support group and my family. The medical alert bracelet does make sense also. It carries a bit more weight than a sick patient’s plaintive plea. We also may not be conscious to make the request.
Thanks again for sharing your good insight,
Best to the patient,
Diane MacKinnon
Incredibly valuable information, Chaya. I continue to learn more and more about CLL from this site and hence read it religiously. We will certainly pay this information forward by discussing the need for irradiated and leukoreduced blood products with the doctors and nurses running the General Clinical Research Program at UCSD Medical Center where Robert is currently participating in a clinical trial.
Glad to hear Harvey is doing so well.
Best,
Hardip and Robet
Thank you for the good advice. Although I have never needed a transfusion, I now plan to get a medical alert bracelet to notify everyone. I was never aware of this information before.
We think about both of you every day & are so very happy that everything is progressing so well. Keep up the good work & positive attitude.
Love to both of you!
Anne & Alan
Way to go Harvey! And we CLL’ers who may be facing a transplant someday are learning so much. Thanks.
I have had at least a dozen RBC transfusions in the last four years. In addition to irradiated and leuco-reduced (sometimes called leuco-poor), mine has also always been CMV free, as I am free of the virus. I was once told by a nurse that leuco-reduced means all CMV has been removed, but others have told me CMV free is even safer and worth waiting for, except in an emergency.
I was also very interested in the comments about dental care. I shall be more vigilante on that front!
I’ve used ativan at different periods as a sleeping pill. It was also given as one of three pre-bone marrow biopsy drugs. (Let it dissolve under your tongue for fastest effect.) Apprarently it is considered an anti-anxiety drug but is very useful for many other things as well. I used one nightly at one period for several months. When I stopped there was no withdrawal of any kind, so I’m guessing that Harvey used a lot higher dose of the stuff as an anti-nausea drug.
Thanks as always and best wishes for a perfect recovery.
Hal Lepoff
Chaya:
Wearing a Medical Alert bracelet or a dog tag makes sense. However, it might also be wise to also carry a mini compact disk with current personal medical information via a billfold, purse or necklace. I recently learned about one such disk at my cardiologist’s office. Information and a demo of it can be found at http://www.gemmsnet.com/MyRecord.
Obviously, a caregiver must be aware of the credit card sized disk and have a computer that can read 3.5 inch disks!
Don
Cambridge, Ohio
Chaya - Thanks for raising our consciousness on this issue. I will be attending the Living With Blood Cancer Symposium sponsored by the Mayo Clinic in Chicago on May2-4. Events like these are great opportunities to spread the word to other patients and caregivers. “Cleaned up blood” was never a topic to my knowledge at the two past conferences that I have attended (Ontario, Canada and Brooklyn, NY.
Keeping a mental vigilance on Harvey’s great progress and take care of yourself!
Wayne and Fay
The link in my noon comment today does not seem to work possibly because of the period at the end. Try http://www.gemmsnet.com/MyRecord
Don
I am gratified to learn that so many people have been receiving irradiated and leukoreduced blood products. I am impressed that some institutions such as Strong Memorial (Univ of Rochester
Med School) uses only such blood for all transfusions…no easy task! I suspect this is the result of these patients seeing cutting edge hematologists. Not everyone is so fortunate. If you are CMV seronegative, try to stick with CMV negative blood.
It is still important to spread this information as much as possible and a Medic Alert bracelet is a good idea, though I suspect that the only time that Harvey would need it would be in the event of a serious emergency, when the choices may be more limited.
When I had sinus surgery in 2024 my oncologist directed that I should have a platelet transfusion since my platelets were somewhat low (around 60,000) When the platelets arrived I asked if they were irradiated. They were not so they had to send for more. I didn’t know about the leukoreduced variety at that time.