Paul's Heart

Life As A Dad, And A Survivor

Playing Ketchup

Coming across my news feed yesterday, was some hopeful news in my world of dealing with Covid19 and the vaccine.  As I have previously stated, I support the vaccine, I believe in the science of the vaccine, and I believe it is critical in getting to the end of this pandemic.  But I have also stressed that I have made my own, independent decision not to get the vaccine at the present time based on facts available, rather, not available, and consensus of my doctors.

First, make no mistake, my cardiologist has made it quite clear.  Because of the nature of the virus, if I contract Covid19, I am likely to die because of my heart issues.  So I either need to avoid getting Covid19, or I need the vaccine.  And currently, there are three vaccines that appear to be leading to the end of this awful pandemic.

My hesitation is clear.  There is no research on those of us who have had “blood cancers,” like me, Hodgkin’s Lymphoma that show the vaccine having any impact on producing antibodies and no protocol if boosters are needed or even safe.  There is no research that shows the potential to have an impact on our immune system from the vaccine, making us more susceptible to other illnesses and the ability to fight those.  And finally, there is no research on long term side effects from the vaccine.

There has been no time to do the research on these questions.  But that is why there are vaccines out now.  Not to be confused, these are not FDA approved vaccines, yet anyway, as they have not completed their studies.  They are only approved for “emergency use authorizations.”  The rest of the studies have yet to be completed.

For most, “normal” and healthy people, the vaccine will provide at least some level or relief, especially mentally.  I believe we are starting to function again economically as we have learned to adapt in the days of Covid19.

But while we wait for science to catch up for those of us with immunity issues, someone is stepping up to at least help when the time arrives.  The Leukemia & Lymphoma Society has announced a partnership with a research platform, called Ciitizen, that will assist in collecting data from those who have had a form of blood cancer, and whether they have contracted Covid19, gotten a vaccine, side effects, and “long haul” issues, and more.  This will help many to decide for themselves, if the risks are likely or rare, and if it is a risk worth taking or not.

There will be some who will protest the collecting of this data as being intrusive.  If it matters to a person’s survival, you are going to need to get over this paranoia.

I have made my decision not to get the vaccine right now, simply because I have no data to support a decision to get the vaccine.  This registry, which patients will have access to, will provide statistical support to help make a more informed and scientific decision while we wait for the FDA, the CDC, and all the other agencies to “ketchup.”

For the full story, please go to the LLS website at:  https://www.lls.org/news/the-leukemia-lymphoma-society-launches-national-patient-registry-to-answer-crucial-covid-19-questions-for-blood-cancer-patients?fbclid=IwAR0nhbOTF-QClmDllNpoR2TTSbJ8S0ej_mO_X1dDiDEtv3_DA0l4nboYJC8

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