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    • #28703
      Colleen Steele
      Keymaster

      I’m embarrassed to say that I remain on the fence about the COVID vaccine. I’ve always been pro-vaccination so this hesitancy is new to me. My main concern is my son Cullen who received a heart and double lung transplant 6 year ago. He has fought so hard and long to stay well and it concerns me about possible unknown future side effects, especially for transplant recipients.

      I admit thought, it appears the majority of people I know want to receive the vaccination and much of what I have researched supports the decision. My husband is all on board and wants to receive it but me and my sons are still concerned.

      We reached out to Cullen’s transplant team and they emailed me some highlights of a letter they are preparing to send out.

      I’m sharing it here to be clear that this came from a transplant and not a PH doctor.

      I’m sure I don’t have to tell you but I will remind you just in case…this is to help inform but everyone should speak to their own doctors and medical team before receiving the vaccination.

      If you are skimming through this, caregivers are mentioned in the last paragraph.

      Risk: The risk for serious complications of COVID-19 infection appears to be increased in lung transplant candidates and recipients.

      · Safety: The COVID-19 vaccines from Pfizer and Moderna were studied in more than 70,000 people and found to be safe with typical expected vaccine reactions (fevers, arm soreness, etc.).

      o There are no specific anticipated safety concerns at this time for transplant recipients, although close monitoring after vaccination is warranted. Please seek medical care if you believe you are having a reaction outside the expected side effects.

      · Efficacy (how well the vaccine works): Both the Pfizer and Moderna vaccines demonstrated greater than 90% efficacy.

      o The efficacy of COVID vaccines is likely lower in transplant recipients or other immunosuppressed people, as with other vaccines in this population.

      Specific COVID Vaccine Recommendations for Lung Transplant Recipients and Candidates

      1. Given the ongoing pandemic and increased severity of COVID-19 in lung transplant recipients and those with lung diseases, and given the lack of serious safety concerns, we recommend vaccination of all lung transplant recipients and pre-transplant patients as soon as they are eligible (see #4).

      · At this time, we are only recommending the Pfizer or Moderna mRNA vaccines – please contact the transplant team before getting any COVID-19 vaccine other than the Pfizer or Moderna vaccine.

      · Vaccination can begin as early as 1 month after transplant if approved by the transplant team.

      · Vaccination should be deferred until at least 1 month after treatment of rejection.

      · Patients with a history of COVID-19 are also eligible for the vaccine. Vaccination can occur as soon as the patient has recovered from the acute COVID-19 illness.

      2. Pre-transplant patients should receive the vaccine as soon as they are eligible (see #4).

      3. History of anaphylactic (severe, life-threatening) reaction: Both the Pfizer and Moderna vaccines contain polyethylene glycol.

      · Anyone who has a history of severe allergic reaction (e.g. anaphylaxis/life-threatening reactions) to polyethylene glycol/Miralax or any other vaccine component should not receive these vaccines.

      · Per the CDC, people with a history of severe allergic reactions to other vaccines can receive the COVID-19 vaccine with precaution (risk assessment and counseling) and post-vaccination monitoring.

      · People with a history of minor allergic reactions (e.g. hives) can receive the vaccine.

      4. Vaccine distribution is managed and directed by each individual state and local community.

      · Please review your state guidelines to determine when you will be eligible to receive the vaccine and where it will be available in your community.

      · As far as we are aware, there is no special consideration given for caregivers and no allowances will be accepted by states (i.e. a letter from the transplant team) to allow caregivers early access to the vaccine.

    • #28717
      Jen Cueva
      Keymaster

      Thanks, @colleensteele, this information is helpful. I think that transplant patients and others will find it informative.

      Does this help you in terms of being on the fence ion the vaccine? What about Cullen?

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