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Comments on: Your Good Deed For The Day https://journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/ The Story of an Elective Cord Blood Stem Cell Transplant Wed, 23 Jul 2008 00:48:18 +0000 hourly 1 https://wordpress.org/?v=6.2.5 By: Cathie https://journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-463 Fri, 25 Apr 2008 16:53:18 +0000 http://www.journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-463 When I had sinus surgery in 2003 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.

]]> By: A Doctor with CLL https://journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-371 Tue, 15 Apr 2008 21:10:36 +0000 http://www.journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-371 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.

]]> By: Don https://journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-370 Tue, 15 Apr 2008 20:58:21 +0000 http://www.journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-370 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

]]> By: Wayne Wells https://journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-369 Tue, 15 Apr 2008 19:28:34 +0000 http://www.journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-369 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

]]> By: Don https://journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-368 Tue, 15 Apr 2008 17:01:58 +0000 http://www.journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-368 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

]]> By: Hal Lepoff https://journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-367 Tue, 15 Apr 2008 16:46:19 +0000 http://www.journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-367 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

]]> By: Anne & Alan Amster https://journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-366 Tue, 15 Apr 2008 14:44:35 +0000 http://www.journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-366 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

]]> By: Hardip and Robert Passananti https://journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-365 Tue, 15 Apr 2008 13:57:21 +0000 http://www.journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-365 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

]]> By: dmackinnon https://journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-364 Tue, 15 Apr 2008 13:44:11 +0000 http://www.journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-364 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

]]> By: Chaya https://journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-363 Tue, 15 Apr 2008 13:14:14 +0000 http://www.journal.clltopics.net/2008/04/14/your-good-deed-for-the-day/#comment-363 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

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