Johns Hopkins Transplant Vaccine study

[MooseMom]

Ooooh, You Tea, that's all fascinating stuff, I have to say.  I'm sure, however, you are not thinking, "Oooh, this is all fascinating stuff!" when you are lying in bed.  Take care of yourself.

[SooMK]

Great summary. I heard from my transplant clinic this week asking for the dates of my vaccine. I had ignored the message the first time because I gave them the info when I was there in March. I decided to give them the info again and evidently it didn't get into MyConnect first time around. At the same time I asked about a booster. I was floored when I heard back from an actual person very quickly saying they were in discussions about it. So as confused as I am, so is everyone else.

[UkrainianTracksuit]

Truth be told, anyone that has followed the "lifespan" and studies on the Delta variant isn't surprised. But, it's still a bummer. https://globalnews.ca/news/8073206/delta-covid-19-variant-chickenpox/

I know that doctors across the media are advising that those reluctant to get vaccinated should really get vaccinated now under these circumstances. This news is a double edged sword.

Just yesterday, I was in a conversation with someone from "Central - Eastern Europe" that does not get vaccinated for anything and they have not vaccinated their children, even with their childhood shots. This is representative of large swaths of people that originate in these countries and some aren't very bright *cough* Poland. Naturally, though masked, I was like "get away from me!"

But they were on their high horse that vaccinated people are spreading the disease and still dying from it, so no point to get vaccinated, when they can "take care of their immune system and strengthen it themselves." I can see them running with this information and causing even more disinformation. Sigh.

[iolaire]

I got an updated antibody test yesterday (self ordered via LabCorp.com for $10 + lab test, hopefully the lab test fees are covered by insurance), now two months post my J&J shot which was about 1 month post my second Pfizer shot, my antibodies are up to 30.4 from 2.3 last month so improving.

I fell like most Facebook transplant vaccine study group members would like to be in the 250 range and some healthy people have numbers in the 2500 range. Many members are in my new range. I’m still happy with any antibodies for now and will not worry about more vaccinations until new vaccine formulas with more variant coverage arrive.

[Cupcake]

Iolaire, oh wise one, help me with my LabCorp Covid antibody test results. Almost 3 years after living unrelated donor and doing very well (creatinine runs around 0. The nephrologist ordered covid IgG and IgM for spike protein; I was expecting a numerical number, as you reported. Instead I got a 'negative' for both tests.  Haven't heard back from nephrologist yet, but I have had 3 moderna vaccines; 2-12; 3-12 and 8-14. Maybe 2 weeks after the third dose was too soon? maybe negative means less than 0.8? ARGGH. Thanks.

[iolaire]

Cupcake I also got the test "SARS-CoV-2 Antibody, IgG" and was negative I wonder if that test will tell us if we have had COVID but not trigger on the vaccine?

The test I've been getting is the "SARS-CoV-2 Semi-Quant Total Ab" test.  You can order that online at labcorp for a $10 out of pocket fee to an online doctor to place the order, then the test will be billed to your insurance.

To order the test - quick method:
1. Go to this URL https://patient.labcorp.com/covid-19-antibody-test
2. Fill it out and continue - logging into labcorp account (if you don't have an account it should work but I don't know what happens there)
3. Fill in insurance and pay your $10
4. I believe the fourth step is to schedule your appointment or you could just walk in and wait until they call you

To order test - slower method with more info and warnings:
1. https://www.labcorp.com/
2. In the middle of the page in COVID-19 Resources area  there is a link to "Get your COVID-19 Antibody Test Request Test", click that link and proceed
3. In the second screen select the left hand option with the big blue button "GET STARTED: Request through Labcorp.com"
4. you are now at the starting point of the quick method above, follow those four steps.

This is the number and details on the LabCorp test via Hopkin's script if you choose to work with your doctor:
164090 SARS-CoV-2 Semi-Quantitative Total Antibody
and the url for that test: https://www.labcorp.com/tests/164090/sars-cov-2-semi-quantitative-total-antibody-spike

The results from that will look something like this:
SARS-CoV-2 Semi-Quant Total Ab
< here either a value or negative if you have zero (<0.8 ) antibodies>
Reference Range:  <0.8 U/mL

In the DC Metro Area the results are returned with about 1.5 days.  LabCorp emails me when new results are posted.

[Simon Dog]

My MD wanted the spike antibody test, and gets annoyed when labs mistakenly process the other antibody tests for patients.

[iolaire]

CAREDX the allosure folks have a webinar for transplant people - GW Hospital's transplant team sent it out.

Ask the Experts: Delta Variant & COVID-19 Boosters for Transplant Patients

With the Delta variant continuing to surge, and the recent authorization from the FDA of COVID-19 booster shots for the immunocompromised, we know there is a lot of uncertainty in the transplant community. Join us for an interactive webinar and get your questions answered live by a panel of experts.

Who should join: heart, kidney, liver, and lung transplant recipients, care partners, anyone in the transplant community.
Register Here:  https://caredx.zoom.us/webinar/register/6016295854708/WN_NINy43_ZS9-lnWs0amXYBg


You can submit your question ahead of time using the link below.
https://www.surveymonkey.com/r/J7XYLZN

[Cupcake]

Many thanks Iolaire for taking the time to explain what happened with my test-I think you are so kind. I will order it myself! I have been very patient with isolating but must admit it is getting old. Dedicated posters such as yourself are the reason this forum continues to be a great source for kidney patients. Thanks again!

[UkrainianTracksuit]

The hospital booked me for a booster this weekend.

Those that had boosters, did you have any ill-effects, as in general crappy feeling? Thanks.

[MooseMom]

The hospital booked me for a booster this weekend.

Those that had boosters, did you have any ill-effects, as in general crappy feeling? Thanks.

No, no side effects other than a bit of a sore arm.  Good luck to you!  I'm so glad you're getting another jab.

[fifal9]

I got a booster last Friday. Only thing I noticed was a sore arm for about 2 days. I did mine before they sent the email out.

[UkrainianTracksuit]

I'm glad that both of you fared well! That's good! 

The booster did a number on me - it was the worst of the 3 shots.

Nausea (was told this is a 10/100 scenario), fever, chills, and PALE. My husband kept repeating, "Oof, you look like sh!t. You're really pale!" And it's true, I did. After running some errands, I slept it off.

Feeling great today! Now just wondering if I show my 2 or 3 shots paper when it comes to our whole vaccine passport shindig going on here.

[iolaire]

I'm now up to 92.1 on the LabCorp SARS-CoV-2 Semi-Quant Total Ab test, up from 30.4 last month.  J&J in May, Pfizer at end of February and March.  My wife was tested for the first time and was right around 1,000 as a healthy almost 54 year old who received the Pfizer at the same time as me.

I've been debating a 4th shot as Virginia only knows about my Pfizer shots but I think I'm going to hold off for now.  If the levels were not growing I probably would have done another shot this weekend.

[Cupcake]

Oh I envy you, Iolaire! I did the semiquantitative test (after your advice how to order it for myself) and my level was less than 0.4. so essentially negative. I had moderna Feb 12, March 12 and August 14.

So for now I am socially isolating except for outdoor pool and golf cart rides every day. I have a virtual appointment with Barnes in October and an appointment at Advent Transplant center  in Orlando in November.

[iolaire]

Sorry Cupcake, moderna was supposed to work a bit better. 

So much of the vaccine stuff has been self serve and the medical community doesn't want to do anything until the CDC sets the guidelines.  On the Transplant Vaccine group people are getting fourth shots, I don't know if that's with doctors orders or just showing up and fibbing a bit.

Have you considered heading into some random pharmacy and getting another type, say J&J since it uses different technology?  It seems some states track the vaccination better than others so depending on your state you might just be able to tell a pharmacist you its your first shot.  Or go to a neighboring state.  Back in May when I got my third shot I used vaccine finder to search for locations with specific brands of shots which now seems to be here now: https://www.vaccines.gov/search/

[kristina]

The hospital booked me for a booster this weekend.

Those that had boosters, did you have any ill-effects, as in general crappy feeling? Thanks.

Dear UkrainianTracksuit, I did have my third Covid-vaccination or my "booster" and I feel lucky because there were no direct ill-effects. Of course, I still feel very vulnerable and fragile because of my recent experience with Sepsis (no idea why and how I did "get" that ...), but my doctor thought it might me a good idea for me to go ahead and have my "booster" straight away and I did have it and had so far no ill-effects and hopefully it continues that way as I could do with a bit of good luck ...
I do wish you the best of luck with your "booster" and hopefully your husband is doing better as well and I send you my kind regards from Kristina.

[Cupcake]

Thanks, Iolaire. I am hesitant to get the J&J due to the incidence of blood clots associated with that vaccine and I have 2 inherited clotting disorders (Factor V Leiden and Protein C deficiency). Guess I'll just recheck my semiquantitative levels in a month or two before I see the transplant team again. 

[iolaire]

Hi everyone, hope you all are doing ok.  Yesterday I received my fourth vaccination, no major side effects again/so far.  Using my Virginia vaccine card showing the two Pfizer shots I went to a local pharmacy for the Moderna shot, the pharmacist said when mixing and matching only the booster 1/2 dose shot was available for Moderna so I got that. 

I've been chugging along happy with my antibody levels (LabCorp) that slowly grew from <2, to 32, and later to 98 but in the last month there have been some talks/publications referenced on the Transplant Vaccine Study Group on Facebook where smart people are saying we should seek as strong as antibody level as possible, that's 2,500+ with LabCorp.  So after reading some of that and having travel planned and winter coming I decided to move onto the next dose.

I reached out to John Hopkins and they wanted my blood again for the T/B Cell Study.  Now they are sending someone to the home to draw the blood so that's great.  They don't give me any info on that study but its for the greater good. 

I think the results Hopkin's antibody study helped the government decided to allow booster shots. Plus it resulted in a group of patient advocates that submitted written and verbal feedback at each government planning meeting.

[fifal9]

Hi Iolaire,  It's great to hear you got your 4th shot! I'm doing well, btw. Holding steady in stage 3b for now.

I've been wanting a 4th shot and I keep getting sms'd to schedule getting another shot, but when I tried to schedule getting one, the pharmacy said I have to wait for 6 months from the time I got my 3rd shot. That won't be until the end of February. My last anti-body level was 46.2. That was back in August. Labcorp didn't send me the results for my test from last month so I don't know if it's gone up since the 3rd shot. John Hopkins only say "positive" on the notices they send me. 
I suppose I'm lucky in that I live alone and work from home and I'm still doing the curb-side pickup and online shopping for most things, so I'm having a low change of catching it, but I would feel better if I could beef up those numbers a little more.
The study has surveys where they ask me if I've been holding off taking meds before my shots. I haven't, but I might try that next time to give my system a better chance to develop an immune response.
I think there's a shortage where I'm at right now because they just started allowing 5 - 11 year olds to get vaccinated this week.

[iolaire]

Labcorp didn't send me the results for my test from last month so I don't know if it's gone up since the 3rd shot.

If you can afford it I highly recommend the $10 cash payment + insurance claim to order the LabCorp  SARS-CoV-2 Semi-Quant Total Ab test on your own.  Its comforting to know where you are.  Otherwise people on the Facebook group say if you email Hopkins they will send you your numbers - but it might take a while, the email address has an auto responder saying it might take up to something like 2 weeks for a response. 

I hope you are able to hold at that 3b level for a long time if not a lifetime.

[iolaire]

(Copy from a Facebook post.)

I received good Covid vaccine related news today. My fourth shot increased my antibody levels from 92 (positive) to the max positive range of >2500!    That doesn’t change much for me - high levels of prevention are recommended regardless - but it does make me feel much better - especially with the constant Omnicron news.   Vaccination history - kidney transplant medications inhibit vaccination response  * Pfizer end of February - no antibodies  * Pfizer end of March - no antibodies  * J&J early May - low positive antibodies starting at about 2 and growing to 97 at the end October  * Moderna 1/2 dose booster start of November, antibody level >2500 after a month

[cassandra]

Wow Iolaire that’s mighty good news. As always thanx for the update, and keep enjoying those antibodes 


Love, Cas

[fifal9]

That's great news, Iolaire!  Congratulations! Your immune system is geared up to fight 

[kristina]

Hi Iolaire,  It's great to hear you got your 4th shot! I'm doing well, btw. Holding steady in stage 3b for now.

I've been wanting a 4th shot and I keep getting sms'd to schedule getting another shot, but when I tried to schedule getting one, the pharmacy said I have to wait for 6 months from the time I got my 3rd shot. That won't be until the end of February. My last anti-body level was 46.2. That was back in August. Labcorp didn't send me the results for my test from last month so I don't know if it's gone up since the 3rd shot. John Hopkins only say "positive" on the notices they send me. 
I suppose I'm lucky in that I live alone and work from home and I'm still doing the curb-side pickup and online shopping for most things, so I'm having a low change of catching it, but I would feel better if I could beef up those numbers a little more.
The study has surveys where they ask me if I've been holding off taking meds before my shots. I haven't, but I might try that next time to give my system a better chance to develop an immune response.
I think there's a shortage where I'm at right now because they just started allowing 5 - 11 year olds to get vaccinated this week.

Hello fifal and many thanks for your kind updates, I do appreciate them very much.
I am wondering, though, why you wanted, as you say a 4th "shot"? Are three vaccinations not sufficient already ? Or are there "things" I have not noticed yet? Another question of mine is : how do these vaccinations react with our body and our transplanted kidney - in the long run ? Have there been some check-ups and serious medical researches done in terms of vulnerable transplant-patients and all of these Covid-vaccinations? I mention this because I don't feel very well and it makes me wonder ... it seems so very confusing also with all this Covid-panic going on ...
Many thanks from Kristina.