I am immune-compromised and vaccinated. What that means right now
I got my 1st dose of Pfizer vaccine on Feb 24, 2021. It was a moment I had waited for this whole pandemic. In the weeks leading up to my appointment, I had worked hard to get a spot, dealing with crashed websites and too few appointments considering the huge demand. I do feel patients with comorbidities could have been prioritized a bit more given that throughout the pandemic most deaths from Covid 19 have been in patients with pre-existing conditions as well as those who are an older age. It was finally my turn and having an appointment in my hometown and not months away was very much like winning the lottery.
I got there on time wearing my mask, goggles and cold shoulder blouse so getting the actual injection would be easy. The hospital where I was vaccinated was not crowded and I was taken right in. I had been in contact with my infectious disease specialist about the vaccines but I had one question I never thought to ask. The only appointment I could get for my vaccination was on a Wednesday and that is also the day of the week I get my weekly immune globulin infusions. Can I get both the same day? It turns out I could have but at the time no one had an answer for me so I made the decision to get my vaccine & delay my infusion by 24 hours. I had always read that I can do that,
My actual vaccination only took a minute- even with questions I had. It didn’t hurt at all. I was ushered into an auditorium to wait with other patients for 30 minutes since I have had anaphylaxis in the past. They offered us bottled water and a choice of individually wrapped cookies. I was not taking off my mask for anything. I brought my cookie home to eat.
Later that night my arm began to feel sore. I put some ice on it, and instead of the kickboxing workout I had planned I did some Zumba instead. A little less arm work! That night I had some trouble sleeping since the vaccine was given on the arm I usually sleep on. The next day I felt fine. No pain, no symptoms or side effects. I got my SCIG infusion later that night and prayed I was starting to mount an immune response.
My next dose was scheduled for March 15, 2021. I had decided to take no chances and be extra careful in my time between doses. I had heard of some patients getting infected with covid after their 1st dose. I was making sure that was not going to happen to me. Tragically during this time, a cousin of ours died from Covid 19. Early on in this pandemic, I had discussed funerals with my husband and my mom who is in a nursing home and had explained that I would not be attending in-person funerals and that if I died I did not want a funeral until the threat of this virus had passed. I lost 2 other cousins and several friends during the pandemic. A few funerals were virtual so I was able to safely participate that way. With others, I grieved at home alone. With this cousin that passed my husband was healthy & fully vaccinated already so he was able to participate in the burial which is outdoors, and I attended the wake for a moment by video. A few days later I was back at the hospital for my 2nd dose of vaccine. I felt sad for everyone that the vaccines did not come in time for.
My 2nd vaccine was very much like my 1st. I got compliments on my cold shoulder top. The actual injection did not hurt and I was asked to wait 30 minutes again to make sure I do not have an allergic reaction. I giggled to myself overhearing several older people planning their weekends away and all the things they plan to do. I felt happy for them. I knew my path to normalcy would not be so clear or easy. I have an antibody deficiency disease. Am I even making antibodies to this vaccine? Would my T cell response to the vaccine be enough protection? These are all questions researchers will be looking to answer. I had also already scheduled an appointment with my infectious disease doctor in April to see how I made out with the vaccine. Overconfidence with this virus is dangerous. Slow and careful has been my approach to the pandemic & it has taken me this far. As one fellow primary immune deficiency patient put it, In past pandemics like the 1918 Spanish flu, how many primary immune patients could have survived? How many patients like us could have survived even without a pandemic back then? All our medical science & technology has been invaluable to patients like us. I called our grandkids on the way home to let them know grandma will be playing with them outside soon. They are too little to understand really but I have even dreamed of just being able to play with them again without fear of this virus. I know two weeks from now even if not fully covered by the vaccine I will be the safest I have been in a long time.
Later that night my arm was sore again. I struggled through a Zumba workout and went to bed. In the morning my neck & head hurt, but I am a migraine sufferer so I can’t attribute it to the vaccine with any certainty. With some ice on my neck and Tylenol, I felt better within the hour. By later that night my arm felt better and I was able to resume all normal activities.
Easter 2021 was the 1st holiday in forever that did not have to be on zoom. I was fully vaccinated so we had an Easter egg hunt with our grandkids. Our youngest barely knows me. The pandemic took me away from my usual weekly visits when she was just 1. Surviving comes with a price. If I had been less careful I may not be here. Hopefully, now I will have many more years ahead to shower them with love & attention.
April 21, 2021,
I had a great post covid vaccination visit with my infectious disease specialist. Here is what I learned:
He does not want to check my antibody levels at this point in time. He does not feel the tests are accurate enough to tell us anything.
He says I should plan to get a booster vaccine in the fall (I did not inquire about people with normal immune systems)
I can be around fully vaccinated people!
I should not be around people who have not had their vaccine yet. For those, I am desperate to see like our grandkids I can see them outside, wear masks, etc.
I can go to a hair salon- wearing a mask & goggles. The first appointment of the day.
I should not return to a gym yet (good thing I have found home workouts I also enjoy)
I can visit my mom (in a nursing home) if I wear a surgical mask with a cloth mask on top with goggles.
No stadiums, bars, concerts, movie theaters, or large events.
Our Covid 19 vaccines are highly effective and reduce transmission of Covid 19
Treatments for Covid 19 are improving and my doctor feels much better about my odds of surviving it.
These are my general guidelines for now until more people are vaccinated and we reach herd immunity which will protect patients like me who may not get full protection from the vaccine. If you are immune-compromised or immune-suppressed I feel it’s very important to speak with your own health care provider about what vaccination means for you.
From a public health perspective everyone who can get the covid 19 vaccine should. Vaccination is how we manage or end this pandemic. Every person absolutely has a right to think about their own individual health as well. This is why I urge everyone to speak with their own health care provider about the covid vaccines. In almost all cases the vaccines are way safer than a SARS COV 2 infection, but every person is unique and only your health care providers know about your exact state of health. I got the vaccine to try to protect my own health. I also got the vaccine to prevent me from getting others sick and to get back to some normalcy like seeing family and having in-person doctor visits. If your a primary immune deficiency patient who is interested in joining a Covid Vaccine Immune response study e-mail NIAIDCovidVaccineStudy@niaid.nih.gov for details.