Johns Hopkins Transplant Vaccine study

[MooseMom]

iolaire, thank you so much for mounting such a valiant effort to make us all feel better!   

I am not going to pin my hopes on the information on these two articles, though.  I don't think that the Johns Hopkins study relied on mere "commercial" antibody tests when the purpose was to study the response in our specific "community". 

If you get vaccinated but don't test positive for antibodies, then how do you know you have any protection at all?  If you are a tx patient and take mycophenolic acid as part of your anti-rejection cocktail, it seems to me that it should become standard procedure now to be tested to see if you've developed antibodies, right?  I mean, sure, still wear a mask and all, but if the whole purpose of this exercise is to mitigate the risk of serious illness/ hospitalization/ death, wouldn't it make sense to want to know if you're have any protection?

I am really curious to see what is gong to happen next.  We myco people are starting to get our second shots, and we are gong to quickly need some guidance.  I confess to being a bit disappointed that tx clinics have not reached out to their patients about this.  Yeah, I know it is still early days, and I know that all of the data is not in, but do you think that clinics are starting to discuss strategies for the future?  Or, are they just going to leave us out to dry?

[iolaire]

.  I don't think that the Johns Hopkins study relied on mere "commercial" antibody tests when the purpose was to study the response in our specific "community". 

My test was done at LabCorp. I provided the test name/code early in the tread if you want to try to figure out how uncommon it is.

[tigtink]

Thank you Iolaire, for the additional info. I too have read similar information on the possibility that absence of antibodies may not mean no protection from the vaccine. The JAMA article refers to the need for additional testing of T-cell response. I think we can only take from this study that we should not assume we have any protection from the first shot, especially if we are on mycophenolate, and we need to continue to be careful as long as the virus continues to be widespread. To read more than that into this one limited study is a mistake, I think. Easy to say, I know, for those of us who are worriers. If I recall, the first study of lethality from COVID in transplant patients was pretty dire, but subsequent evidence showed much better results when they had larger samples to test.

MooseMom, I too felt these results as a gut punch. I am also on Mycophenolate, plus I received the Pfizer vaccine. And we are seeing a major surge here in Michigan, cases up more than 50% in three weeks, second in the nation for variant cases. It is terrifying. On Monday I had a virtual appointment with my UW transplant center. I was assigned a nurse practitioner I had never worked with before because new rules require I have someone licensed in Michigan for virtual appointments. So I didn't get to pick the brains of my usual NP. This guy was pretty evasive when I asked about the effectiveness of the vaccine. He knew nothing about the Johns Hopkins results, but they had just come out. All he would say is that the vaccine is safe for us and it is not clear yet how effective it will be for transplant patients.

From my experience, these transplant centers are likely to be very cautious about giving guidance until there is more evidence available from further studies. I expect they might be willing to order antibody tests for us when the next studies come out about results after the second shot. It may be several months, however, before they come to a consensus on how to proceed. Perhaps they will recommend a non-mRNA vaccine or adjust the mycophenolate long enough for a second round of vaccines. Perhaps the researchers will come up with a better vaccine that will thwart the mycophenolate. I have full confidence they will figure this out, but not until they have a lot more information and experience than they have now. As MooseMom noted, among the larger vaccination effort we are far from being a priority group, but we are a priority group for our individual transplant centers. They do not want to see their transplanted patients get sick or lose their transplants. They are constantly learning and adapting, but sometimes slow to react until they have solid evidence.

I am not trying to downplay the results of this Johns Hopkins study. The results are deeply disappointing. At minimum, we are looking at months more of the isolation, even as others around us are gleefully celebrating their new freedom. It is maddening. Still, I am trying to put this all in perspective. As more people get vaccinated we will be safer, eventually cases will decline and our risk of getting infected will decline also. We are already susceptible to dozens of viruses and infections for which their are no vaccines. We know because we have been tested for things most people have never even heard of. Eventually there will be more effective treatments for COVID (I read about a pill form that will be out soon). The transplants centers will in time just add COVID to the list and learn how to prevent and/or treat transplant patients who contract it. I just hope they figure it out sooner rather than later for those of us whose lives are still boxed in by this thing.

MooseMom, you are about nine years into your transplant, aren't you? You've had a few setbacks, but have managed to stay remarkably healthy thus far. You have beaten many odds already. And we have all made it a whole year without getting this dreaded virus. I waited six years for my transplant, and dodged dialysis for 10 years in Stage 4 before I got my new kidney. So we will persevere, but I see a few more temper tantrums and fits of depression in my future before we make it past this. I think we are all entitled to that after living through this past year. And thankfully we can come here to gripe with the only other people who get what we are going through.

[MooseMom]

Thank you for your post, tigtink.  It incorporates everything I've been pondering but in a much more coherent form.  My posts on this topic tend to be like 100 ping pong balls flying to and fro.

You do make a point to which I did not give fair consideration, and that's the notion that tx clinics don't want to have all of their patients suddenly fail because of covid.  I'm sure they will digest all of the data when it is available and will plot a course forward.  It is unfair to ask them for guidance now.  I recognize that, and that is my frustration speaking.

I just need to take a deep breath, recalculate and recalibrate, and get on with it.  Nothing has really changed, although it feels like it has.  But no, nothing has really changed.

Again, thanks, tigtink!  You take care!

[tigtink]

In one sense you are right: nothing has changed for us in terms of the way we love our daily lives. But things have changed drastically in our shared experience of it. People around me are getting their shots and have a sense of a timeline about when they can start doing things they could not do in the past. The sense of relief and hopefulness is palpable, even though there are still uncertainties. Up until now, we were in the same boat as everyone else, waiting and hunkering down. We as transplant patients now have no timeline and will eventually have to explain why we are still so cautious and cannot participate in the same activities. This may be beating the metaphor a bit, but they are sailing toward shore while we remain adrift. Somehow that makes it lonelier for me. I will adapt, but it piles a sense if unfairness on what was already an difficult situation. I think that is what has changed. We are suddenly in a much smaller club.

[UkrainianTracksuit]

Not entirely related, but as a member of the KDK, I have to share. I will admit that this whole vaccine news dampened my spirits. I was in such a slump. I still feel that way. (And I broke my laptop too.  ) But I just got the results of my blood work, and my egfr is 124 mL/min. Happy, but still apprehensive about the short term future.

[enginist]

I think there is reason for optimism.  We as individuals have learned how to avoid this virus, which doesn't seem as ominous as it did a year ago.  We should be grateful to the pharmaceutical industry for doing the impossible and coming up with these vaccines in record-breaking time.  And even if the current versions fail to benefit everyone, we know that the vaccines can be tweaked.  Better ones will be developed, tailored to every profile, maybe in six months or less.  I think that's really remarkable, almost as remarkable as an eGFR of 124.

[MooseMom]

Not entirely related, but as a member of the KDK, I have to share. I will admit that this whole vaccine news dampened my spirits. I was in such a slump. I still feel that way. (And I broke my laptop too.  ) But I just got the results of my blood work, and my egfr is 124 mL/min. Happy, but still apprehensive about the short term future.

I am assuming that in Canadian money, this is quite spectacular!  That's quite the silver lining!

My egfr isn't nearly that good, but all of my other values are in the green column, and I'm OK with that.

To everyone,   

[MooseMom]

In one sense you are right: nothing has changed for us in terms of the way we love our daily lives. But things have changed drastically in our shared experience of it. People around me are getting their shots and have a sense of a timeline about when they can start doing things they could not do in the past. The sense of relief and hopefulness is palpable, even though there are still uncertainties. Up until now, we were in the same boat as everyone else, waiting and hunkering down. We as transplant patients now have no timeline and will eventually have to explain why we are still so cautious and cannot participate in the same activities. This may be beating the metaphor a bit, but they are sailing toward shore while we remain adrift. Somehow that makes it lonelier for me. I will adapt, but it piles a sense if unfairness on what was already an difficult situation. I think that is what has changed. We are suddenly in a much smaller club.

I've read your post over and over.  You're right.  Our timelines are shrouded in mystery.

I had thought I had adapted reasonably well.  I am used to, and enjoy, my own company.  I have plenty to do.  I don't have to frequent lively venues to feel like a whole person.  I don't ask for much, and I don't need much.

The only thing I want, though, seems further away than ever.  I want to be able to get on a plane and fly to London to see my son like I have done every year.  I haven't seen him since October of 2019, and I don't know when it will be safe enough for me to sit around at O'Hare to get on a plane for Heathrow, two of the busiest airports on the planet, and then back again.  Will I ever be able to use the trains and the Underground?  London is my second home.  My sense of my existence will be severed in half if I cannot return.  I am not getting younger; I have that perception, now, of time running out.  I refuse to reread books or re-watch shows because I don't have that luxury of time.  I don't feel like I have half a decade to sit still while all of the bright sparks figure out how to sidestep mycophenolic acid.

I've never really considered myself to be "medically fragile".  I pop my pills and get my labs done, and that's about it.  I just get on with it.  I'm sure I have some side effects from the drugs, but honestly I don't notice them.  If I do, I chalk it up to merely getting older.  So, this is the first time in the almost nine years I've had my tx that I've really had to stop and reassess.  This is the first time I've had to consciously label and categorize myself as anything outside the norm, and I resent it.

But, I will hope for the remarkable as enginist wisely suggests.

Edited to add:  I am very aware that I am only one among very many who have loved ones far away and for whom intercontinental/transoceanic is impossible at the moment.  I know this is a first world problem.

[UkrainianTracksuit]

I am not getting younger; I have that perception, now, of time running out. 

I know that your post was not directed at me, MM, but this was like a gut-punch. For real.

First, I cannot even imagine your internal dialogue and emotions you must be having over the inability to travel to the UK (in the worst case scenario.) Sitting here, thinking quietly, it is difficult wrap one's head around the feelings of not being able to see a son or visit a place that has being so important to one's being.

Secondly, the realization that we are not as "strong" medically as we consider ourselves is a tough one to digest. Feeling as good as can be, following medication guidelines, being a compliant patient, and always being in proactive mode (hygiene, basic things like avoiding sniffling coughing people) has served us well, but there are fish too big to fry, and we don't have the tools. That is extremely humbling. The fact that we have to wait for answers on specialized minds, versus the basics for non-immuo-compromised or those not on mycophenolic, feels almost depressing. It is not that I don't trust them to get it done, but they do not have the sense of urgency like we do.

I will say it is exhausting to live life with the feeling that time is running out. Okay, look, on the linear timeline of life, yes, I am behind on the ruler compared to some in this discussion. It is not the same I know, but that "time is running out" feeling has been in the pit of my stomach for all of my adult life. First, it is was, "I need to get as much done before dialysis. Dialysis will either stop things or make them certainly a lot harder." Then I ended up in critical care and came close to meeting my maker twice. That really sends one into a tailspin that life is not only short, but fragile. That consequently pushes the need to get more done as now time is fickle, unpredictable thing. And then corona happened...

The first time I cried during the pandemic was when our phones went off with the "state of emergency" alert at the first lockdown. It wasn't because there was a lockdown (inability to see friends, go out, see things), it was that I knew here we go, more time cut out of life. I had the same feeling all last week and during all this talk that we don't have a handle on the virus here. More time chipping away... lost time, time that I do not have. Right now, I hope to see an extremely elderly fragile relative, but I am also mentally preparing myself that it won't happen. I've given up hope on so many things with time being a significant aspect of it.

I'm at a level of morose Heidegger-level existentialist crisis right now. Not because of the lack of social outings, but because of the loss of time, to what? To existing, but not being. There's a lot of unpack from this one statement, but I won't do that. 

[iolaire]

I'm not attempting to negate your concerns/feelings.  But I do my best to suppress stressors.  So I'll provide more on the lab tests for the study.

Here are details on the lab test.  The Labcorp details are:
164090 SARS-CoV-2 Semi-Quantitative Total Antibody
It an other antibody tests offered by Labcorp are here: https://files.labcorp.com/labcorp-d8/2020-12/L23586-1220-2_nex.pdf
Its the first test in this list:
LabCorp now offers multiple options for SARS-CoV-2 antibody testing:

• SARS-CoV-2 Semi-Quantitative Total Antibody [164090]:
  This semi-quantitative assay can help assess the level of antibodies in people who have
  been infected with the SARS-CoV-2 virus. The test looks for antibodies against the receptor
  binding domain (RBD) of the spike protein, which is the target of many candidate vaccines.
• SARS-CoV-2 Antibodies [164068]:
  This qualitative assay uses a modification of standard ELISA methodology to detect the
  presence of high affinity antibodies to the SARS-CoV-2 nucleocapsid protein.1
   While the assay does not differentiate between antibody types, it preferentially detects IgG
  antibodies since these are most likely to evolve to become high affinity.1
• SARS-CoV-2 Antibody, IgG [164055]:
  This qualitative assay uses a modification of standard ELISA methodology to detect the
  presence of IgG antibodies to the SARS-CoV-2 spike protein

My pre vaccination baseline results were:
TESTS SARS-CoV-2 Semi-Quant Total Ab A
RESULT <0.40
UNITS  U/mL
REFERENCE INTERVAL <0.80

Interpretation:
Negative <0.80
Positive >0.79

John Hopkins provided the results as:
Thank you for participating in our research study: COVID-19 Antibody Testing of Recipients of Solid Organ
Transplants (IRB00248540).
As you may recall, you sent us a blood sample to be tested for antibodies to the virus that causes COVID-19.
Antibodies are proteins that help fight off infections and sometimes provide protection against getting that
disease again. We tested your blood to look for antibodies to see if a COVID-19 vaccine has generated a
response within your body or obtained a baseline sample to see if you already have antibodies.

Your antibody test result was: negative.

A negative test means that your body has not generated antibodies or does not currently contain antibodies.
The testing is not 100% perfect and may be falsely negative even if you have had the infection. We do not
know yet if all people who have had a COVID-19 vaccine develop antibodies. Scientists are working to
understand this, and your participation in this research study may help us answer this question.
We encourage you to continue to take steps follow your doctor's advice to protect yourself and others.

Of note looking up that study code brings up two studies, so it looks like the home dialysis folks can participate in the second study.
https://transplantvaccine.org/ COVID-19 Vaccine in Transplant Recipients
https://vaccineresponse.org/ COVID-19 Vaccination in Patients with Chronic Conditions

COVID-19 Vaccination in Patients with Chronic Conditions
What are the eligibility criteria?
18+ years old, English-speaking, living in the US, received a COVID-19 vaccine or intention to receive a COVID-19 vaccine, and a chronic medical condition including: cirrhosis, end-stage renal disease using home dialysis, HIV, inflammatory bowel disease (Crohn’s disease or ulcerative colitis), or an autoimmune/immune-mediated condition.

Next Thursday I will get my pre second shot lab work so by the 30th I should know if there was any change in antibodies. Also I have an antibody test on file that my work posted last June, maybe I get that filled in May or June to see how that differs in testing type from this study.

[tigtink]

Wow. You guys have really hit on the core of what many of us are feeling now. The realization that despite our good health and all we do to stay that way we really are medically fragile is very humbling. That sense of urgency and feeling that time is running out is so intense for me. During those months when the YMCA was closed and I could not go to the pool, my arthritis acted up and I began to feel old for the first time in my life. The powers that be do not have the same sense of urgency about our fate. We are told to wait as we are more and more aware we have less and less time left for all this waiting. Most of you, like me, are used to taking charge of your health, but now it feels as though it is in the hands of others who do not understand or care about our running out of time.

Yes, we have reason to be hopeful, but those feelings remain. MooseMom, since I don't have children, I can't even imagine your frustration at not knowing when or if you will be able to make that all important trip again. It is all so unfair, given how much you have already been through and how hard you have worked to stay healthy. As UK so beautifully described it is exhausting.

I have no great words of wisdom or encouragement here, It is just comforting to know I am not alone in these feelings.

[iolaire]

And today this story:
https://news.yahoo.com/effective-first-shot-pfizer-moderna-112936910.html
How effective is the first shot of the Pfizer or Moderna vaccine?
William Petri, Professor of Medicine, University of Virginia
Bottom line
So what do we know? The Centers for Disease Control and Prevention urges people to get both doses of the Pfizer and Moderna vaccines. You should be reassured that even after a single dose of either of those vaccines, you have very high levels of protection after your body has time to build immunity, about a week. The scheduled second dose of these vaccines makes them even more effective, but at a time where vaccine supplies are limited, there’s a lot to be said about prioritizing the first dose for the most people.

A few of you brought this up in other forms, but there clearly is an effort to not criticize the vaccines effectiveness because we all need everyone to be vaccinated.  The story plays into that, for the good of the country and even us its probably best to let anyone who wants a vaccine get the first shot. I'm sure decisions are being made at the CDC level to say grandparents can visit their grandchildren even as some scientists worry about the elderly not being as protected.  Lets hope its based on science saying that less protected people will not get as sick.

[iolaire]

Here will be another dump of links and summaries as I try to find non Johns Hopkins results for reference:

https://www.pennmedicine.org/updates/blogs/transplant-update/2021/march/evaluating-the-effects-of-the-covid-vaccine-on-transplant-patients
Penn Transplant Institute study looks similar to Hopkin's study, local blood draws so I guess 2 PCAM Transplant Clinic lab patients only.

https://www.cst-transplant.ca/_Library/Coronavirus/National_Transplant_Consensus_Guidance_on_COVID_vaccine-20210123_FINAL-DK.pdf
PDF - March 6 Canadian National Transplant Consensus Guidance on COVID-19 Vaccine  - no details on effectiveness
A Canadian center's letter to patients: https://www.uhn.ca/Transplant/Documents/transplant-patient-vaccine-letter.pdf

https://www.imperial.ac.uk/news/216393/covid-19-vaccine-response-patients-with-impaired/
UK study we will look forward to information from this one - COVID-19 vaccine response in patients with impaired immune systems
Current evidence shows that people with these medical conditions may not obtain optimal protection from established vaccines. Patients with significant underlying diseases were generally excluded from COVID-19 vaccine studies to date – it is now important to confirm that the COVID-19 vaccines work well in such conditions.

Thousands of patients studied across the UK
The OCTAVE study will investigate the effectiveness of COVID-19 vaccines being used in the UK in 2021, in up to 5,000 people within these patient populations.

Using a variety of state-of-the-art immune tests performed on blood samples taken before and/or after COVID-19 vaccination, researchers will determine patients’ COVID-19 immune response and therefore the likelihood that vaccines will fully protect these groups from SARS-CoV-2 infection.
News on the above https://www.wionews.com/world/new-study-examining-effect-of-covid-vaccine-on-impaired-immune-system-to-start-soon-367581

https://www.mskcc.org/coronavirus/vaccine-safety-side-effects-for-people-cancer
Nothing new here but focuses on Cancer weekend immune systems, talks about maybe scheduling around treatments: Why Cancer Patients Should Be Vaccinated against COVID-19 and What Is Safe Afterwards

https://jasn.asnjournals.org/content/early/2021/02/25/ASN.2020121766
COVID-19 and Dialysis Patients: Unsolved Problems in Early 2021
Sort of a summary of the things the specialists are thinking about.

[MooseMom]

iolaire, I am certain that you are not negating our concerns/feelings, some of which I suppose you feel, too, and I thank you for spending so much time and effort to supply us with more links (and summaries!).  I'm sure we all try to avoid stressors; I've been trying to do just that for the past year, with have been pretty successful, until just a few days ago.  But I will adapt just as we all have to adapt.  I feel a bit better each day, and I have not had another sleepless night.  The information you've provided really helps.  Thank you.

My apologies, but I am not sure I fully understand your timeline.  If I understand correctly, you had a pre-vaccine antibody test, the result of which showed that your covid antibody status was negative.

Then you had the first shot, and then you had another antibody test, and this one also showed that your antibody status was negative.

Next Thursday, you are due to have a pre-second shot covid antibody test to see if you've developed any, and you are to have the results by the 30th.

Is all of that correct?  If so, when do you actually get your second shot, and when will you have blood tests to see if you've developed antibodies post 2nd dose?

The AP article summarizing the findings of the JH study has been copied around the world, so it is very difficult to find any new information.  Perhaps there is no new information, and there won't be new information until the study starts looking at people after the second dose.

I fully understand that there surely must be a hesitancy to speak negatively about the vaccine in any way, even if the negative message is only to myco tx patients.  We don't want to add to anything that might give people pause in getting the shots.  The more people who are vaccinated, the safer we mycos will be.

I am heartened to see so many studies that are now concentrating on immunosuppressed patients.  It will be interesting to see if their results differ from those from JH and if they also reach the conclusion that it seems to be mycophenolic acid that is the spanner in the works.

tigtink and UT, thank you for listening and understanding.  It is a beautiful day today, although a bit chilly, but the winds have died down, and it's a good day to be outside.  So today, I'm going to enjoy the fresh air and the early signs of spring.  The world will not fall apart if I spend this one day thinking of other things. Today I will wrestle back control of my life.   Today I will show myself some mercy, and I hope the rest of you will do the same.

[iolaire]

My apologies, but I am not sure I fully understand your timeline.  If I understand correctly, you had a pre-vaccine antibody test, the result of which showed that your covid antibody status was negative.

Then you had the first shot, and then you had another antibody test, and this one also showed that your antibody status was negative.

Next Thursday, you are due to have a pre-second shot covid antibody test to see if you've developed any, and you are to have the results by the 30th.

Is all of that correct?  If so, when do you actually get your second shot, and when will you have blood tests to see if you've developed antibodies post 2nd dose?

Not exactly.  I've had one pre-vaccination antibody test ordered by the John Hopkin's study at LabCorp.  I've provided the results sent by both John Hopkin's and LabCorp - with LabCorp being the raw values and what is sent to John Hopkin's, the second result is John Hopkin's summary of the same results.  I'm providing both results just to show different interpretations.

I will get my final shot on the Friday the 26th, they want the lab work down within the 7 days of the shot, but as close as possible to the actual shot date, so I'll get the labs drawn on Thursday the 25th - the day before.  If LabCorp is as fast as last time I'll have my results at 10 am on the 26th and then the same results in the John Hopkin's format on the 27th at 4 PM. 

I don't know when the following antibody tests will take place.  So far I received one set of orders to be used twice, once before each shot.  Likely they provided some details on the timeline but I didn't pay attention to it, so I looked back and this is what they said:
After your second COVID-19 shot:
We will be contacting you and sending you additional blood collection devices for blood samples at various time points during the year.

[MooseMom]

Thank you for clearing that up for me, iolaire.

[kristina]

Hello again,

... At the end of January I had my first Pfizer vaccination and here is my update :

Straight after my first Pfizer-vaccination everything seemed perfectly alright, I had no big side-effects, felt a little bit tired and exhausted, but there was nothing more serious to report.

But recently I felt some dizzy-spells coming on ...  and then off again ... and I don't want to set-off any red flags or alarm-bells, but I have noticed that these dizzy-spells have increased and today I found out (courtesy of the Internet), that these dizzy-spells (there is no pattern, they just come on) seem to be a side-effect of my vaccination. Since this is the side-effect of my very first vaccination, I wonder what to do about the second vaccination and have to ask my doctor about it.

Strange, isn't it? There we need the vaccination most urgently in order to survive this pandemic without getting infected ... and we also know for sure that with our compromised immune-system there is hardly a chance to survive, if we would get infected ...  but the side-effects of the vaccination with sudden dizzy-spells are not recommendable either ... 

Best wishes and good luck to everyone ... Kristina.

[enginist]

Ladies, you should hear yourselves.  You sound like the Weeping Willows Club, all of you pulling out your hair in existential dread.  Yes, you will die someday.  So what?  You've already cheated death, and even dialysis in some cases, but now you want to be immortal too?  You're lucky that you haven't died of Covid, which is a slow and painful way to go.  Your heartache, MM, about your son is perfectly understandable, but this other stuff--this wailing about the relentless flow of time--is kind of ridiculous.  As far as I can tell, you all have rich, fulfilling lives.  Instead of focusing on the clock, be productive like iolaire.  Death has only as much importance as you choose to give it.

[tigtink]

Wow, enginist. How incredibly condescending. For your information, surviving does not mean stuffing feelings into a box and pretending all is well. We are entitled to our feelings. I have survived and thrived because I allow myself to feel what I feel, express those feelings, and move beyond them. That makes me a healthy human being, not someone who is being ridiculous or whining about someday dying. Who are you to make such judgments? No one is making you read these posts. And why address us as "Ladies"? It is sad you feel a need to come here and denigrate others. It is mean and cruel.

[UkrainianTracksuit]

Obviously most of this sentiment is directed at me since I am the one that mentioned existentialism! 



No one said anything about being immortal. Being concerned about time and not being able to do some things does not directly tie into wanting to be immortal. To be honest, all we did was reiterate Pink Floyd's "Time" in a way understood why those on mycophenolic acid. Being very in tune with mortality, and just biological clocks, is what actually makes me conscious about time. Totally fine with death to be honest; in fact I'm listening to a whole album about death! 



It is one thing to offer some basic "you will be okay" platitudes, but a completely other thing to dismiss raw feelings. So, where are we to rant on renal related stuff if not here? To be honest, this reply was like when I'm actually unnerved by something, and my husband says, "Oh, is your period coming?" 



In order to have these fulfilling lives that you sense, we have to be able to pursue our passions, dreams and foster connections. Obviously that will come, but when?

If I was in the later stages of my life, perhaps I'd be nonchalant about it like you. Until renal failure came into your life, (I assume) you had all the time of the world to make your own decisions and not really have to consider about Plan J, K, L, and even zigzag to Plan Z because some malfunctioning organs dictated certain limits.

 I'd like to see relatives before they die. I'd like to adopt a child, but certain jurisdictions have age limits. All of these bumps in the road do in fact conflict with the fulfilling life I hope to have. Time matters. And the more impediments due to time make some very important things elusive. 



And oh, I'm always in existential crisis — it is in my genes after all.  Covid is just a hyper-magnifier. Perhaps during the rest of corona, I'll get on shortwave radio and do my ramblings there with the rest of the mutants and numbers channels.

[enginist]

I apologize.

[MooseMom]

kristina, I certainly am not an expert on every single side effect that could possibly occur after having the covid jab, but I am concerned that you are suffering dizziness so long after the jab.  That makes me suspect your dizziness may be caused by something else, and it might be an idea to consult with your medical team.  If this dizziness had occurred one or two days after the jab, I'd assume that was the cause, but the timing you are describing sounds odd to me.  How are you feeling now?  Has your dizziness dissipated at all?  Is your bp OK?

Enginist, I am able to whine and be productive at the same time!  LOL!  It's a real talent, I know!    But on another note, I had meant but had forgotten to tell you that I agree there is still reason for optimism.  Well, guarded optimism.  You are absolutely right to remind us that the fact that we have vaccines at all, so soon in this pandemic, is nothing short of a miracle.  I sense that as more and more people get vaccinated, it will be safer and safer for us myco people.  But a lot will depend upon the behavior of other people; will they stop wearing masks or start ignoring safety precautions?  And the variants...what about the vairants? 

I personally am very intellectually curious to see what happens next for the mycopeeps.  I confess to finding this pandemic rather fascinating, and I was always teased for liking "germ movies".  Pass the popcorn when "Contagion" comes on (and I don't like popcorn)!  There is a great documentary on Netflix called simply "Pandemic", and it was produced, filmed and released just a few months before covid, so that makes it especially scary and prescient.  It follows various doctors and epidemiologists and other experts in four or five different parts of the world as they work to find the possible origin of the next wave and type of influenza that might become a, yes, pandemic.

I'd rather be a member of the Krap Day Klub than the Weeping Willows Club, which doesn't sound like nearly enough fun!  I bet the snacks aren't very tasty, either.   

[UkrainianTracksuit]

Instead of focusing on the clock, be productive like iolaire.

Okay, I didn't see this one sentence the first time, but this is one HOLY F*** slap in the face moment. Be PRODUCTIVE? I work a high stress job that until recently saw me put in 14 hour days! I am literally overseeing an international development project ON THE SIDE as part of a volunteer initiative.

I fought to finish my education (PhD) dealing with ESRD and then dialysis. And be productive?

That's why people shouldn't assume stuff and then spout off condescending scat. It's very common to be productive and suffer dread. I'm sure the guys that worked on the R504 highway were totally productive too! And with that, I am so out of this thread.

[MooseMom]

Please do not leave this discussion, UT.  The subject matter is just too important.  You have an inquisitive, calculating, rational mind that has been honed by your own dreadful medical experiences.  You ask the right questions and search for the right answers, just like iolaire does, and at this point in time, we need all hands on deck.
i
Studies on the efficacy of the second does have not even begun yet, so we need to be vigilant.  Fortunately for us, iolaire is a participant in the study and is in the perfect place to disseminate information as he receives it.  That leaves the rest of us free to discuss it, usually in the form of asking even more questions.  We each have access to different transplant clinics, so we have different sets of medical people from whom we can perhaps extract different bits of information.  Then we can come back here and share what we've learned.

Our spouses/partners/families are supportive, but they don't know what mycophenolic acid is and wouldn't recognize it if they passed it on the street.  We are the only people with whom we can have an informed conversation.  We can't afford to leave each other behind, so I respectfully ask that you remain.  Thank you.