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    • #29517
      Christie Patient
      Moderator


      Well, we’ve finally made the news, folks… for the first time in my memory, the large number of chronically ill and immunosuppressed people in America are taking the spotlight in media. This community has been mentioned hundreds of times in the last year, but usually, when high-risk people come up, it feels like a sad disclaimer on the tail end of news directed at the immunocompetent.

      Before the delta variant made its way to the states, and things were reopening all around the country, it felt like this community–3% of the population of America–was being left behind. Now, as arguments flare around the reinstatement of masking rules and distancing guidelines, it suddenly feels to me like someone is looking out for us. Seeing blurbs on TV and articles in The New York Times about the push to get third shots authorized (as early as today, perhaps) for immune-deficient citizens brings me hope.

      Doctors and researchers are talking about recommending boosters of the COVID-19 vaccine for immunosuppressed and vulnerable people. It’s the first time I think I’ve ever seen any particular attention paid to this community in the news without using us as a comparison against immunocompetent people. It feels good to have the spotlight on people like my mom, and my friends here in the forums, who would benefit from a booster shot ahead of the general populous.

      For as much as we shout and share our stories, it still sometimes feels like we are invisible. It’s nice to have some attention on our community that might benefit our health in the long run.

      Are your news outlets doing a good job of discussing these issues? Do you feel seen in this time of so much unrest, fear, and frustration? Have you ever shared your story publicly, and do you think it helped people empathize with your circumstances? Let us know in the comments. 

    • #29559
      David Ota
      Participant

      @christie-patient

      I am shocked and surprised the FDA and CDC has our backs 🙂

      Who’d-a-thought.  I’ve been watching the news on the topic for the last month or so and was getting antsy for a decision.

      I scheduled a CVS Pharmacy Pfizer 3rd dose on their website for this morning (Monday 8/16/2021) but my wife talked to one of her transplant caregiver friends and she said Walgreens had a walk-in policy for the immunosuppressed.

      Call my local Walgreens at 4PM yesterday (Sunday).  They confirmed the 3rd shot was a walk-in, no appt necessary and they had the pfizer shot, 30 minutes later I had my 3rd shot.

      Sore arm, same as 1st and 2nd.

      Pharmacist said I was 3rd person that day who walked in for a 3rd shot.  I figured the transplant crowd would be kicking their doors down.

      • #29614
        Christie Patient
        Moderator

        @davidota I know right?! After seeing my disabled/chronically ill friends and family members screaming their stories into the void for so many years it’s delightfully shocking to have this much attention on this community.

        My mom got her third poke the day after it was authorized.. walk-in, just like you guys. She said she felt a bit crummy but had no fever or any major side effects. I sure hope this one gives her (and y’all) some antibodies!!

        • #30710
          Kathleen Holden
          Participant

          I’m actually looking forward to my fourth shot, 2nd “booster” from Pfizer when it is offered.  I have no adversity to being guided to regularly get “boosters” and understand there are medical researchers/physicians who wish these shots would no longer be called boosters, but something else (I’ve never learned the term they wish used).

          I have several autoimmune issues.  When the masses of immunocompromised patients are mentioned in national and/or local news, I usually hear the term focused on those receiving chemotherapy and/or radiation.  I wish the media would learn more (therefore include in their broadcasts about us who’ve never been subjected to either but have severe autoimmune diseases.  Research, I believe, is ongoing to prove that not only a diabetic type 1, but a type 2 (adult-onset) is considered autoimmune.

    • #29582
      Robert M
      Participant

      Did the same yesterday, walked into Walgreens and got the booster. It was their first and they had an issue figuring out the paperwork but all ended well.

      A little sore today and lethargic, same as second shot.

      • #29616
        Christie Patient
        Moderator

        @robertm That’s great! Would you mind sharing if you are pre- or post-transplant?

        • #29720
          Robert M
          Participant

          Pre. But unlikely because of lung cancer history only 2 years clear and weight.

    • #29605
      Jim Dawson
      Participant

      Has anyone with a suppressed immune system been tested for antibodies after there second shot and what are the results. My brother-in-law said he was tested and his blood work doesn’t show any antibodies growing in his system. If they are not growing, I have to believe a third shot isn’t going to help either. Any comments?

      • #29615
        Christie Patient
        Moderator

        @jim-dawson a friend of mine with a heart-and-double-lung transplant did get tested and she had a scant amount of antibodies after two. The data are showing something like 12% of transplant patients are getting any benefit from two shots, but the likelihood of forming antibodies does increase with boosters. Transplant patients are on the highest doses of immune-suppressing medications so they will be the hardest group to protect, but those on the pre-transplant end of PF should have better luck getting antibodies. I’m not a doctor, though, so I’ll try and dig up some more research later tonight and report back.

        What I do know is that my mom’s transplant team at UCSF is involved in the research and they have weighed the risks vs benefits of a third shot (risks being possibly triggering organ rejection), and have decided the potential benefits of a third shot are worth it. That speaks volumes to me.

    • #30707
      Jim Dawson
      Participant

      a I have found the best way to not getting Covid is isolation. Although I recently was hospitalized for PF, not able to get my breath, I was released 3 days later. No changes made on medications. It was described as a flare up of PF.
      12% doesn’t sound like good odds to me as compared to staying away from people. Granted, not all people have that luxury.

       

       

    • #30723
      Catherine Leonard
      Participant

      Agree- that it’s nice to get a little attention…

      To Paraphrase Dr. Roach (San Gabriel Times)  – “Of all the medicines that interfere with a vaccine, Rituximab (a chemo drug) is probably the most significant.”  He says it’s best to get vaccine either before starting chemo, or to wait until 12 months after last treatment.

      **Noted: Having IPF, and finishing Chemo with rituximab for Non-Hodgkins Lymphoma in my lung last April, I’ve somehow managed even with low or non-existent immunity to avoid catching Covid.  I find it interesting how very little information is discussed with those of us who are immune compromised and at high risk, and often feel like I need to explain my heightened caution even though I have had two vaccines and have been boosted…  (But to what benefit?!)  Anyway, yes.  It’s true, too little attention is brought to our community, and it is too bad.  –  As a former Special-Ed. teacher, I seem to have grown immune to the lack of attention given to those of us who make up a very slender percentage of the population.

      • #30771
        Christie Patient
        Moderator

        It’s sadly true how little attention is often paid to rare disease and disabled communities. The ABC edited version of Dr. Walensky’s (CDC) recent comments appeared to make that outrageously clear. This article clarifies that the original soundbite lacked context, but the outrage remains valid as chronically ill people have regularly, continuously been disenfranchised and ignored. My friend Brad, a writer for Cystic Fibrosis News, and lung transplant recipient recently shared this post, which pretty much sums it up.

        “Let’s say a person draws the short straw and is born with a mutation. Society demands they pay for it, literally.

        Higher premiums, swiftly maxed-out deductibles, uncovered treatments and hospital fees, outrageous hospital parking garage costs, an inability to hold down a job due to sickness/doctor absences and an inability to be hired to begin with, a legalized subminimum wage, extra payments for accessibility that should instead be a right, absurd SSDI requirements (which force you into poverty and dependence) for what isn’t even a livable income, higher costs for exercise and diet needs.

        And this isn’t even mentioning the energy, emotion, and time costs.

        At some point, the healthy/able world must awaken to the normalized systemic injustice experienced against those with “bad genetics,” those hurt, those with cancer and other illnesses. As it is, people don’t bat an eye if we’re kicked while we’re already down. We’re already exhausted by our medical conditions yet we are expected to do the heavy-lifting of activism on our own. Disabilities justice is a frontier untouched by the mainstream of advocacy.

        Yes, that is “just how the world works.” It’s wrong.”

    • #30725
      Jim Dawson
      Participant

      I have not had a Covid shot because of the compromised immune system. I also haven’t caught Covid. I am being treated for PF and usually need Oxygen at 7 while sitting and 12 when walking. I only take about 15 steps at a time. I would say isolation is best suited for me.

      • #30769
        Christie Patient
        Moderator

        Hi Jim, I am curious where you got the advice not to get vaccinated because of your compromised immune system? I know we’re all different, and I respect your decision as our individual needs vary, but everyone I know with a compromised immune system has been advised by doctors to get vaccinated as soon as possible. All transplant patients I know on high doses of immune-suppressing medications have gotten three doses with no lasting side effects.
        I hope you are finding enjoyable things to pass the time during isolation and staying healthy and happy.
        Christie

    • #30731
      David Ota
      Participant

      I just completed my quarterly lung transplant clinic visit yesterday.  The pulmonologist recommended a 2nd booster so I got home and hit the Walgreens vaccine scheduling web page.  I am now signed up for a 2nd booster of the Pfizer vaccine.  The CDC web page for the immunosuppressed, in it’s round about fashion also recommends 4 shots for the immunosuppressed.

      https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/immuno.html

      I’ll update this thread on how that goes.

       

      • #30768
        Christie Patient
        Moderator

        @davidota Glad to hear it! My mom’s tx team advised a fourth shot 6 months after the third. She’ll be due for it next month and then (pending the omicron situation) might actually be able to come visit me in Hawaii for the first time since we moved here. 🙂 We are all looking forward to that!

        Have you had all of your vaccines from Pfizer? When I did my booster I decided to mix and match. I had no side effects from either Pfizer vaccine, but the Moderna booster kicked my butt!

    • #30772
      David Ota
      Participant

      Christie

      All shots are Pfizer, that seems to be the recommendation. I think mix and match would be the way to go, but with as many variables us transplants have, I don’t want to go too far out on a limb.

      We just cancelled our vacation to Aruba in Feb.  Flying international seems too iffy right now.  The rules are changing every week.  I have to admit, traveling in general is tough.  I keep waiting for Omnicron to run it’s course. We’ll see.

      • #30779
        Christie Patient
        Moderator

        Indeed there was some worry that a third shot could exacerbate an immune response that could trigger some rejection, but I have yet to hear of a case where that has happened. My transplant circle is pretty big, but of course, it’s not outside the range of possibility. Sticking with the same seems like a smart choice.

        On the subject of travel, I would not go international right now, just because of the varying rules. Probably a good call to hold off and instead enjoy some domestic travel if you can 🙂 road trips and camping are always a good (and safer) choice if you like that kind of thing.

        • #30854
          David Ota
          Participant

          Got the 4th Pfizer shot, 2nd booster yesterday at Walgreens.  My arm is a little sore, nothing that I notice unless I think about it.  It went as smooth as I could hope.  I did read a story this morning about people having problems with getting a 4th shot.

          https://www.cnn.com/2022/01/26/health/fourth-shots-immune-compromised/

          After reading that CNN story, I’d definitely call ahead.  I did not, and it went fine, but I do not need the frustration of being denied while standing in line.

        • #30872
          Christie Patient
          Moderator

          Glad you were able to get one. My mom got the green light from her tx team last week and was unable to get it at Rite Aid or Safeway, but CVS finally agreed to do it. I believe all 4 of hers were Moderna, and she had no side effects from any other than a sore arm and feeling tired for ~24 hours.

          She did recently (before the 4th shot) have an antibody test to see if she was a candidate for EvuSheld (I will post more about this in a separate topic soon), and she was negative for both IgG and IgM types of antibodies.

          Definitely worth calling ahead so you don’t risk standing in line for no reason and being exposed more than necessary.

    • #30773
      Tim Costar
      Participant

      I am 5years since original IPF diagnosis and over4 years on Ofev. No one has ever implied that I am immuno suppressed but I guess that is lack of communication. Fortunately, at 80 years of age, I have been high in the pecking order for each round of vaccines and now completed to third dose. Supposedly 4th shot is coming soon (in Canada) and specifically for immuno suppressed at first, so I’ll put my name in the hat and hope they don’t tell me to come back later. I had an antigen test about a month following my second shot. Test found no evidence of antibodies but there was a disclaimer saying the test was showing a lot of false negatives!! I guess I just have to hang in there.

      • #30781
        Christie Patient
        Moderator

        Hi Tim @timcostar, I believe (though I could be wrong) that anti-fibrotic medications do have an immune-suppressing effect. Not as much as transplant medications such as tacrolimus, prednisone, and cellcept, which are designed for that purpose. OFEV is anti-fibrotic, so technically not an immunosuppressant, but if you are on any of the others, your doctor should have mentioned immune suppression. Anyway, better safe than sorry in my opinion, and I am glad to hear that you have been prioritized for vaccines as they’ve come out with new guidance. From what I’ve heard, antibody tests are pretty hit-or-miss, though maybe they’ve improved since I went to a transplant clinic appt with my mom back in June. Who knows. Hang in there, indeed!

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