My sister’s neighbor is dying of Covid update: Latest update last post!

[wintermom]

1 hour ago, wathe said:

the US has VAERS, to which anyone can report an adverse event.  Because it's public reporting, the data tend to be very noisy - anyone can report anything.

The Canadian system requires that reports are submitted by health care professionals, who are supposed to report any adverse events that their patients report to them.  This extra step means that our data are less noisy (and probably somewhat less sensitive - reporting is a lot of paperwork.)

The Canadian data on the site you've shown are still reports of adverse events; they are not necessarily causal.   They have to be compared to the base rates for each category.   Which the regulators here do: the safety signals for myocarditis for mRNA covid vaccines, and GB and thrombocytopenia for viral vector vaccines, for example,  are definitely real - a portion of those events were definitely caused by the vaccines.

Excellent point, and thanks for highlighting this! What's your sense of when that causal link is actually established? I know it can be messy, and that not every country reacts the same or reacts at the same time. 

Edited February 3, 2022 by wintermom

[wathe]

8 minutes ago, wintermom said:

Excellent point, and thanks for highlighting this! What's your sense of when that causal link is actually established? I know it can be messy, and that not every country reacts the same or reacts at the same time. 

I think it depends on the magnitude of the safety signal. Very common adverse effects get picked up in clinical trials. Less common but not rare get picked up fairly quickly once the vaccine is administered to the population ( for example myocarditis). Establishing causality for really rare adverse events might take years.

[KSera]

30 minutes ago, wathe said:

I think it depends on the magnitude of the safety signal. Very common adverse effects get picked up in clinical trials. Less common but not rare get picked up fairly quickly once the vaccine is administered to the population ( for example myocarditis). Establishing causality for really rare adverse events might take years.

With the super high number of Covid vaccines administered in just one year, it seems to me we are likely to already pick up anything except events that are in the one in 100 million, one in 1 billion type things. Which is different from most other vaccines and medications, which take many more years to reach that number of people.  Like, the number of vaccines administered in Canada seems high enough that they already will be able to (and I expect have?) compared those reported heart attack numbers to background rate and have a pretty solid idea what increase, if any, there is from the vaccine. I am encouraged that so far that hasn’t come through as a big safety signal. 

eta: I became interested to see what has already been published comparing background rates to post vaccination rates of adverse events, and found this really helpful large study of background rates:

Largest, Most Extensive Measurement Of Adverse Events Background Rates Can Inform Safety Monitoring Efforts For COVID Vaccines

It makes this point:

Quote

“We found significant heterogeneity in background rates between age and sex,” said co-lead author Xintong Li, DPhil student and Clarendon scholar at the University of Oxford. “If we compare these rates regardless of age or sex group, we may either find a false signal or neglect a real safety signal while monitoring vaccine surveillance.

 

Heart attack, for example, was observed as a very rare (<1/10,000) outcome for a 24-year-old female, but it was a common (<1/10 to ≥1/100) one for an 88-year-old male. The research team believes that the populations who are more likely to suffer these AESIs (like the older man in this example) should be analyzed separately from populations in much lower risk groups.

 

“If a vaccinated population is older than an unvaccinated population, and we do not adjust for it, we may see a false increased risk of events following vaccination,” said co-lead author Anna Ostropolets MD, a PhD student in the Columbia University Department of Biomedical Informatics.

 

Edited February 3, 2022 by KSera

[wathe]

9 minutes ago, KSera said:

With the super high number of Covid vaccines administered in just one year, it seems to me we are likely to already pick up anything except events that are in the one in 100 million, one in 1 billion type things. Which is different from most other vaccines and medications, which take many more years to reach that number of people.  Like, the number of vaccines administered in Canada seems high enough that they already will be able to (and I expect have?) compared those reported heart attack numbers to background rate and have a pretty solid idea what increase, if any, there is from the vaccine. I am encouraged that so far that hasn’t come through as a big safety signal. 

eta: I became interested to see what has already been published comparing background rates to post vaccination rates of adverse events, and found this really helpful large study of background rates:

Largest, Most Extensive Measurement Of Adverse Events Background Rates Can Inform Safety Monitoring Efforts For COVID Vaccines

It makes this point:

 

I agree.  

[Happy2BaMom]

Re: vaccines and self-reported reactions....in a very recent study, 1/3 of the participants who received the placebo Covid shot (meaning there was *no* Covid vaccine in the shot) reported at least one adverse reaction to it. Article about this study. Actual JAMA link.

This is not meant to imply that actual vaccine reactions don't happen - of course they do! But it does highlight the fact that a *lot* of people think they have reactions to a vaccination when they either actually don't, or (more likely) symptoms happen which would have happened anyway, but get reported as being linked to the vaccine.

Edited February 3, 2022 by Happy2BaMom

[Happy2BaMom]

On 2/1/2022 at 11:56 AM, Mrs Tiggywinkle said:

 

HCW are not okay, and it’s compounded by the stunning realization that wide swaths of our friends and neighbors just don’t care.

The HCWs in my circle say that it's more than just many people not caring (although of course that's a huge part of it) - it's also that SO MANY people are *actively* undermining, mocking, and degrading the (fill in the blank: pandemic itself, people who are taking precautions, medical professionals & scientists, front-line HCWsetc etc). Some people will listen to anyone other than the people actually taking care of Covid patients.

[wathe]

31 minutes ago, Happy2BaMom said:

Re: vaccines and self-reported reactions....in a very recent study, 1/3 of the participants who received the placebo Covid shot (meaning there was *no* Covid vaccine in the shot) reported at least one adverse reaction to it. Article about this study. Actual JAMA link.

This is not meant to imply that actual vaccine reactions don't happen - of course they do! But it does highlight the fact that a *lot* of people think they have reactions to a vaccination when they either actually don't, or (more likely) symptoms happen which would have happened anyway, but get reported as being linked to the vaccine.

Yes, the nocebo effect.  The expectation of an adverse reaction can cause said reaction (or perception of reaction).

Edited February 3, 2022 by wathe

[kbutton]

On 1/28/2022 at 6:32 PM, Mrs Tiggywinkle said:

Mom is on ECMO now as a last ditch effort. Her name is Brittany, if you want to pray/light candles/keep her in your thoughts by name.

Any news? I know a lot of times things are touch and go, they go on support, and then it's just waiting for the inevitable, but I wanted to check in. 

[Ditto]

7 minutes ago, kbutton said:

Any news? I know a lot of times things are touch and go, they go on support, and then it's just waiting for the inevitable, but I wanted to check in. 

Thank you for posting this.  I knew there was another thread I was hoping for a good update on but couldn't remember which one.

@Mrs Tiggywinkle,  I do hope there is good news.

[Calizzy]

@Mrs Tiggywinkle bump. Hoping for an update.

[matrips]

On 2/3/2022 at 4:05 PM, wathe said:

Yes, the nocebo effect.  The expectation of an adverse reaction can cause said reaction (or perception of reaction).

But they were minor adverse effects like headaches.  Not heart issues or tinnitus or clots.  There’s a huge range of what can be called adverse effects, so I don’t think it takes away from more serious reporting 

[Mrs Tiggywinkle]

On 2/7/2022 at 3:37 PM, Ditto said:

Thank you for posting this.  I knew there was another thread I was hoping for a good update on but couldn't remember which one.

@Mrs Tiggywinkle,  I do hope there is good news.

The baby is doing very well, still in the NICU.

Mom had a collapsed lung last week but that appears to have stabilized.  She remains on ECMO, and sadly the husband is insistent that  because her heart rate jumps to 180 when he visits and plays the videos of the baby crying that she’s responding and fine and the doctors are just trying to kill her by leaving her on life support(apparently that’s a common claim among the Covid denier crowd?) also she seems to respond to him some. I have been encouraging my sister to explain to him that she is probably under sedated and he should advocate for increased sedation. But the husband is medically naive and doesn’t seem to understand that she’s not on ecmo because the doctors think she’s brain dead, but because her lungs are in bad shape and need weeks of rest.  He keeps saying things like, “she’s still in there!” When the doctors have gently discussed maybe it’s time to end ECMO and let her go. It sounds to me like they really don’t believe her lungs will ever recover enough to support life.

Just another reminder—vaccination is important and so are advanced directives, regardless of your age.

Edited February 13, 2022 by Mrs Tiggywinkle

[KSera]

That is so sad. Any chance she’s a candidate for lung transplant?

[wathe]

2 hours ago, Mrs Tiggywinkle said:

the doctors are just trying to kill her by leaving her on life support(apparently that’s a common claim among the Covid denier crowd?)

It's a thing.  It's by far the worst thing I've had to endure during this pandemic - that families really believe that I am a murderer (which, of course I 'm not).

[Kassia]

5 hours ago, Mrs Tiggywinkle said:

The baby is doing very well, still in the NICU.

When the doctors have gently discussed maybe it’s time to end ECMO and let her go. It sounds to me like they really don’t believe her lungs will ever recover enough to support life.

 

I'm glad the baby is doing well but that's just horrifying about what is going on with the husband (and, of course, the poor mother). 

 

3 hours ago, wathe said:

It's a thing.  It's by far the worst thing I've had to endure during this pandemic - that families really believe that I am a murderer (which, of course I 'm not).

Hugs.  I'm so sorry.  I just can't imagine...

[Mrs Tiggywinkle]

8 hours ago, KSera said:

That is so sad. Any chance she’s a candidate for lung transplant?

I don’t know, my sister hasn’t said anything. I’m actually flying down to this sister’s this week and they’ve already asked if I’ll go over all the medical records with the husband while I’m there.  He doesn’t trust the critical care doctors so he wants a lowly paramedic to explain the medical stuff to him?

I think there’s a lot of denial wrapped up in politics.  I can’t tell you how many family members have insisted to me that it can’t be Covid because nobody actually dies if Covid, it’s all made up, while I’m moving their intubated, sedated, on super high pressures vented loved one to my stretcher so I can take them to a hospital with ECMO capabilities.  So. Many. Times.

[Mrs Tiggywinkle]

8 hours ago, wathe said:

It's a thing.  It's by far the worst thing I've had to endure during this pandemic - that families really believe that I am a murderer (which, of course I 'm not).

I know this is happening, I hear it frequently, but I still have no words. When you’re working yourself to the bone to try and save lives and then families really truly believe this, it’s devastating.

One of the reasons my husband is sending me to my sister’s in Florida this week is because I’ve recently been diagnosed with PTSD and the symptoms are…bad. Some of it is a particularly horrific situation two weeks ago but most of it is Covid.  I don’t know how any HCW is going to come out of this unbroken.

[YaelAldrich]

8 hours ago, KSera said:

That is so sad. Any chance she’s a candidate for lung transplant?

I would guess not. Based on two prominent media stories (one from my old home town in NC and one in my now home in Boston). You have to get the COVID vaccine to get a transplant.

[wintermom]

9 hours ago, wathe said:

It's a thing.  It's by far the worst thing I've had to endure during this pandemic - that families really believe that I am a murderer (which, of course I 'm not).

I am so sorry. 

[KSera]

1 hour ago, YaelAldrich said:

I would guess not. Based on two prominent media stories (one from my old home town in NC and one in my now home in Boston). You have to get the COVID vaccine to get a transplant.

Hmmm, I’m not sure whether or not it works the same way for cases like this as it does for people who are waiting on the list for an organ and could just go get the shot to be/remain eligible. I know it’s required in that case, but since she can’t get the shot right now and it could end up the only way to save her life, it might be different. They certainly could say it was a requirement to agree to get the vaccine once recovered. I have seen quite a number of people who had lung transplants due to Covid who have been in the media encouraging others to get vaccinated so the same thing wouldn’t happen to them. One was a very young woman who was pregnant and had refused the shot and ended up on ECMO for a very long time. 

[DawnM]

I can't even imagine.   Praying for mom and baby.

[Acadie]

23 minutes ago, DawnM said:

I can't even imagine.   Praying for mom and baby.

Me too.

And for you and all HCW, @Mrs Tiggywinkle, for your health and wellbeing, with gratitude for your good work in caring for people and apologies for all the shit you've had to put up with along the way. 

[Mrs Tiggywinkle]

My sister just texted me—Brittany has improved enough in the last 48 hours the doctors felt she could come off ECMO. She has been off since this morning and seems to be doing well. She is still on a ventilator and is going to get a trach in a few days.  

[Pam in CT]

57 minutes ago, Mrs Tiggywinkle said:

My sister just texted me—Brittany has improved enough in the last 48 hours the doctors felt she could come off ECMO. She has been off since this morning and seems to be doing well. She is still on a ventilator and is going to get a trach in a few days.  

That is great news.

 

And... holding you in the light, and hoping hard that your restorative trip restores.

[Mrs Tiggywinkle]

My sister’s FB post today: 

Yall. Our God is a God of miracles!!! The doctors said Brittany is a 1%. EVERYONE is shocked that she made it. She is now awake, she hates the name her husband picked for the baby--Brooklyn 🤣🤣, she can take a few steps with the walker but is very easily tired. She is off the ventilator but has a trach. She has a long road to recovery and won't be home for a while. Matt is juggling being a single dad of 3 kids plus working full time. There is a meal train if anyone is local but diapers and wipes are always appreciated. Thank you all for the prayers-- I never saw this outcome and I am so so thankful ❤❤

[maize]

Thank you so much for the update! What a relief to know she is pulling through. I'm sure she still has a long road ahead.

[El...]

Hurray! Wow!

[Scarlett]

Wow, that is amazing that she is going to live.  Cracks me up she hates the baby's name.  I guess they had not decided on a name before she got sick.

[Kassia]

Wow, what wonderful news! Thank you for the update! 

[Mrs Tiggywinkle]

16 minutes ago, Scarlett said:

Wow, that is amazing that she is going to live.  Cracks me up she hates the baby's name.  I guess they had not decided on a name before she got sick.

Random tangent, but I had a uterine rupture while in labor for my daughter.  I wanted, say, Amelia Grace, husband wanted Leah Katherine. We still hadn’t really decided.

When i emerged a day later from the haze and sedation of the emergency caesarean, I realized my daughter’s name was(not her real name) Leah Katherine Amelia Grace. The hospital was pressuring DH about a name before I was really awake and husband panicked and threw all the names in there. 

It fits her, though, she loves her string of names and writes her name Leah K.A.G. last name and I’m fine with it now.

lesson learned, though:  Never trust husbands with baby naming when mom is not available. 
(My sister’s husband filled out their youngest’s birth certificate and thought it would be hilarious to put “Archibald” as a second middle name.  That baby is now 6 and my sister still is not amused at all.)

Edited March 9, 2022 by Mrs Tiggywinkle

[Scarlett]

17 minutes ago, Mrs Tiggywinkle said:

Random tangent, but I had a uterine rupture while in labor for my daughter.  I wanted, say, Amelia Grace, husband wanted Leah Katherine. We still hadn’t really decided.

When i emerged a day later from the haze and sedation of the emergency caesarean, I realized my daughter’s name was(not her real name) Leah Katherine Amelia Grace. The hospital was pressuring DH about a name before I was really awake and husband panicked and threw all the names in there. 

It fits her, though, she loves her string of names and writes her name Leah K.A.G. last name and I’m fine with it now.

lesson learned, though:  Never trust husbands with baby naming when mom is not available. 
(My sister’s husband filled out their youngest’s birth certificate and thought it would be hilarious to put “Archibald” as a second middle name.  That baby is now 6 and my sister still is not amused at all.)

That is the funniest thing I have heard in a while.  I love it.

[ktgrok]

23 minutes ago, Mrs Tiggywinkle said:

 

lesson learned, though:  Never trust husbands with baby naming when mom is not available. 
(My sister’s husband filled out their youngest’s birth certificate and thought it would be hilarious to put “Archibald” as a second middle name.  That baby is now 6 and my sister still is not amused at all.)

Ha! When my midwife was filling out the birth certificate info for my younger son, she didn't believe DH on the middle name and came and verified it with me. I guess it isn't uncommon for Dad to try to sneak something in there while mom is indisposed (I think I was showering or something). 

[Pam in CT]

Awwww that is such great news. 

[mom31257]

Such wonderful news!! 

[Spryte]

What beautiful news!

[Forget-Me-Not]

Oh I’m so glad she’s ok.  
 

I have a friend whose baby was life-flighted to another hospital shortly after birth. They asked her for a name as they left, and she gave one of the two that they’d been considering. Later, she decided it didn’t fit and changed it to the other name. It happens! 

[Harriet Vane]

5 hours ago, Mrs Tiggywinkle said:

Random tangent, but I had a uterine rupture while in labor for my daughter.  I wanted, say, Amelia Grace, husband wanted Leah Katherine. We still hadn’t really decided.

When i emerged a day later from the haze and sedation of the emergency caesarean, I realized my daughter’s name was(not her real name) Leah Katherine Amelia Grace. The hospital was pressuring DH about a name before I was really awake and husband panicked and threw all the names in there. 

It fits her, though, she loves her string of names and writes her name Leah K.A.G. last name and I’m fine with it now.

lesson learned, though:  Never trust husbands with baby naming when mom is not available. 
(My sister’s husband filled out their youngest’s birth certificate and thought it would be hilarious to put “Archibald” as a second middle name.  That baby is now 6 and my sister still is not amused at all.)

Someone dear to me has a name flub. After he was born, his dad was the one dealing with the staff about the name, and he mixed up the correct order, giving the intended middle name as the first name. They didn't realize the error until later and never changed it, so this person was always called by his middle name.