PSA and where did we talk about the sudden death of a journalist at the World Cup?

[kbutton]

https://wapo.st/3FR3LmG (gifted)
https://marfan.org/2022/12/14/statement-on-aortic-aneurysm-reflecting-on-the-death-of-grant-wahl-clinical-urgency-and-guidance/ 

The journalist that died at the World Cup died from a ruptured aortic aneurysm.

PSA: THEY ARE NOT RARE

If you have a family history of sudden death that was not autopsied to rule one out, you should be suspicious. 

If someone in your family has an aneurysm, all first degree relatives should be scanned--if the first degree relative linking you to someone with an aneurysm is dead or unwilling to be screened, then you should consider being screened anyway. Repeat screening every five years--many families have aneurysms that show up later in life rather than earlier.

A large percentage run in families (about 1/5). Sometimes they skip generations, or one sex or the other has a pattern of fewer deaths, obscuring the family pattern. Sometimes they convey a risk for brain aneurysms or arterial tortuosity, which have their own risks. Sometimes they are the result of a connective tissue disorder.

Resources:
https://johnritterfoundation.org/
https://marfan.org/
Updated guidelines for managing aortic aneurysms: https://www.jacc.org/doi/epdf/10.1016/j.jacc.2022.08.004

We were told, point blank, by a cardiologist who does this work every day that the medical community thinks they are rare because we do not autopsy enough people. 

Why don't we look? For a long time, not much could be done. Surgery, if it existed, was too risky to do preventively, so people didn't look unless there was a compelling reason, such as restricting activities or prescribing blood pressure meds to help someone live longer. This is not the case anymore. There are clear guidelines, updated frequently based on research, on what to do and when to do it, but a lot of clinicians sadly don't know or don't realize that the profiles of who has an aneurysm get clearer all the time (not just smokers with high BP, for instance).

Clinicians don't always ask the right questions to help you decipher your risk...they might ask if someone in your family has had one vs. asking about sudden death and whether an autopsy was performed, for instance. You have to be your own detective.

 

 

[kbutton]

[KSera]

I was relieved to see they found a clear cause of death. I imagine that brings some measure of comfort to the family, and from his wife’s statement, that seems to be the case. There was enough strange about the circumstances that I can’t blame people for having been worried about something more nefarious. So awful and tragic 😔. 

[Ausmumof3]

1 hour ago, KSera said:

I was relieved to see they found a clear cause of death. I imagine that brings some measure of comfort to the family, and from his wife’s statement, that seems to be the case. There was enough strange about the circumstances that I can’t blame people for having been worried about something more nefarious. So awful and tragic 😔. 

Particularly given there was also a second journalist who died suddenly. I guess with the huge number of people in the region it’s not that unusual. Hopefully it brings some peace to his family to know what happened.

[rebcoola]

 He was a great guy who really invested in growing journalism of soccer in this country.   He was 48 fit and healthy and married to Dr. Grounder a top infectious disease expert. My understanding was that he was feeling unwell most of his time there and had not gotten much sleep.  I am glad they got a clear answer that definitely clears the Qatari ems from any wrong-doing. 

Edited December 15, 2022 by rebcoola

[KSera]

20 minutes ago, rebcoola said:

My understanding was that he was feeling unwell most of his time there and had not gotten much sleep.

Yeah, I was wondering initially if it was a covid blood clot situation, due to his illness, but I don't think an aneurysm would have any relation to that. Poor guy and his poor family. I'm not a follower of soccer, but ended up reading his last post to his blog from the previous day, and it's so surrreal how suddenly someone can be gone 😔.

[Ausmumof3]

6 minutes ago, KSera said:

Yeah, I was wondering initially if it was a covid blood clot situation, due to his illness, but I don't think an aneurysm would have any relation to that. Poor guy and his poor family. I'm not a follower of soccer, but ended up reading his last post to his blog from the previous day, and it's so surrreal how suddenly someone can be gone 😔.

There is an increase in the rate of aneurysms etc post-covid although obviously it’s not clear whether that was a factor. But seeing as this is an awareness raising thread I think it’s worth noting.

[kbutton]

1 hour ago, Ausmumof3 said:

There is an increase in the rate of aneurysms etc post-covid although obviously it’s not clear whether that was a factor. But seeing as this is an awareness raising thread I think it’s worth noting.

Do you know what kind? I haven’t kept up with the data on this, but I remember reading that it can cause coronary artery aneurysms, but I don’t know if it’s limited to those or if it can cause or worsen existing aneurysms of other kinds or if they even know.

Fluoroquinolone antibiotic use is also tied to aneurysms, but there are some nuances about who is at risk. Age is one factor. I think the risk may be for a limited time in people who aren’t older or at risk due to an underlying condition (like some connective tissue disorders). The Marfan Foundation has a statement on it as well.

[Ausmumof3]

2 hours ago, kbutton said:

Do you know what kind? I haven’t kept up with the data on this, but I remember reading that it can cause coronary artery aneurysms, but I don’t know if it’s limited to those or if it can cause or worsen existing aneurysms of other kinds or if they even know.

Fluoroquinolone antibiotic use is also tied to aneurysms, but there are some nuances about who is at risk. Age is one factor. I think the risk may be for a limited time in people who aren’t older or at risk due to an underlying condition (like some connective tissue disorders). The Marfan Foundation has a statement on it as well.

No I can’t remember and now can’t find the information! Will post if I come across it though. Very close friend here had surgery for an aneurysm just over 12 months ago - something that would have been inoperable and potentially fatal a few years earlier. He has lost some function but is amazing for what had to be done.

[KSera]

4 hours ago, Ausmumof3 said:

There is an increase in the rate of aneurysms etc post-covid although obviously it’s not clear whether that was a factor. But seeing as this is an awareness raising thread I think it’s worth noting.

Looking it up, I see you are correct on that. I had read earlier today that now that they knew it was a ruptured aortic aneurysm, they knew it was unrelated to his recent illness, so I thought aortic aneurysm had not been found to be one of the complications. It looks like it can be though.  In looking that up, I found that the big conspiracy theory surrounding his death was that it was the Covid vaccine that caused it 🤦‍♀️. People are so delusional about the vaccine. Totally nuts. 

[KSera]

2 hours ago, kbutton said:

The Marfan Foundation has a statement on it as well.

I read in The NY Times article about his death this morning that doctors are exploring if this was a factor. 

“Doctors are now exploring whether Mr. Wahl had Marfan syndrome, a risk factor for this type of aneurysm. He was tall and thin and had long arms, all of which can be signs of the genetic syndrome.”

[Catwoman]

Aortic aneurysms run in my family, so I wanted to mention that in addition to the warning signs mentioned above, another symptom can be sudden and severe LOWER back pain. I hadn't heard of the upper back pain warning until now. My mom and aunt were always cautioned to pay close attention to new pain in their lower back (and they were told it wouldn't feel like a pulled muscle -- they were told it would feel different.) 

 

[kbutton]

12 hours ago, KSera said:

I read in The NY Times article about his death this morning that doctors are exploring if this was a factor. 

“Doctors are now exploring whether Mr. Wahl had Marfan syndrome, a risk factor for this type of aneurysm. He was tall and thin and had long arms, all of which can be signs of the genetic syndrome.”

I googled images of him right after posting here the other day. He looks like it could go either way. 

For those who are interested in the outward signs of Marfan Syndrome, this is a systemic calculator that clinicians can use to refer a patient for additional testing. They update it as data on which signs correlate the most becomes more and more accurate. https://marfan.org/dx/score/ 

[kbutton]

12 hours ago, Ausmumof3 said:

No I can’t remember and now can’t find the information! Will post if I come across it though. Very close friend here had surgery for an aneurysm just over 12 months ago - something that would have been inoperable and potentially fatal a few years earlier. He has lost some function but is amazing for what had to be done.

I am glad he's okay. Do you know if he had elective surgery, or was it emergent due to a dissection? 

Outcomes get better all the time, especially when you have an elective surgery with a surgeon who does tons of them. That's what makes it so tragic when someone doesn't know and dies. Doubly so if they have outward signs of Marfan, vEDS, Loeys-Dietz, etc.

[kbutton]

1 hour ago, Catwoman said:

Aortic aneurysms run in my family, so I wanted to mention that in addition to the warning signs mentioned above, another symptom can be sudden and severe LOWER back pain. I hadn't heard of the upper back pain warning until now. My mom and aunt were always cautioned to pay close attention to new pain in their lower back (and they were told it wouldn't feel like a pulled muscle -- they were told it would feel different.) 

 

It might make a difference where along the aortic tree the aneurysm is located, but I don't know for sure.

There is no single site that people in our family get them, but there have been more aortic root aneurysms tallied so far than other kinds. 

One important thing to keep in mind during a potential emergency is that a regular echocardiogram is NOT going to detect a dissection. This card talks about which tests are able to rule one out (and has more symptoms/info).  https://marfan.org/wp-content/uploads/2021/04/MARFAN-EmergencyCard.pdf  

The card is a really good tool to carry with you if you have an aortic aneurysm.

[Catwoman]

Just now, kbutton said:

It might make a difference where along the aortic tree the aneurysm is located, but I don't know for sure.

There is no single site that people in our family get them, but there have been more aortic root aneurysms tallied so far than other kinds. 

One important thing to keep in mind during a potential emergency is that a regular echocardiogram is NOT going to detect a dissection. This card talks about which tests are able to rule one out (and has more symptoms/info).  https://marfan.org/wp-content/uploads/2021/04/MARFAN-EmergencyCard.pdf  

The card is a really good tool to carry with you if you have an aortic aneurysm.

I was thinking that the location probably made a difference, too, but I didn't say anything because I don't honestly know for sure. 

All I know is that I'm glad you posted this, because so many people don't realize how important it is to be screened every five years if you have a close relative who had (or has) an aneurysm. It's just a simple ultrasound, so it's not like it takes a long time or is invasive in any way, and the information is so crucial. 

My mom and aunt had their surgeries back in the 90s, and they did just fine, and the techniques are far better today than they were back then.

Also -- if anyone has already had aneurysm surgery, they should be sure to keep getting those regular screenings, because they can get another one in the future. (My mom did. She also had a renal aneurysm, so aneurysms can be sneaky!)

[kbutton]

9 minutes ago, Catwoman said:

Also -- if anyone has already had aneurysm surgery, they should be sure to keep getting those regular screenings, because they can get another one in the future. (My mom did. She also had a renal aneurysm, so aneurysms can be sneaky!)

Have you guys been genetically tested for any of the heritable disorders? They have huge panels now, though sadly, a really large percentage of the genes that cause aneurysms are yet to be discovered.

[Melissa in Australia]

I thought it was the curse of the stadium.

Didn't over 400 people (workers on site) die while it was being constructed because if the applaing working conditions. 

[kbutton]

3 minutes ago, Melissa in Australia said:

Didn't over 400 people (workers on site) die while it was being constructed because if the applaing working conditions. 

I believe so!

[kbutton]

I always get questions back channel after these posts, so I might add more information about Marfan in this thread for clarification.

I think it's important to note that you don't have to be tall to have Marfan Syndrome. Lots of people are tall who have it, but some people are merely tall for their family or just happen to not have that feature of the disorder (like some people don't have displaced eye lenses or lung issues, for example).

Also, some other connective tissue disorders (some of which have links to aneurysms, and some of which do not) or familial aortic disorders cause a Marfanoid body habitus. This is one reason that genetic testing is important if it's suspected. 

 

[Ausmumof3]

2 hours ago, kbutton said:

I am glad he's okay. Do you know if he had elective surgery, or was it emergent due to a dissection? 

Outcomes get better all the time, especially when you have an elective surgery with a surgeon who does tons of them. That's what makes it so tragic when someone doesn't know and dies. Doubly so if they have outward signs of Marfan, vEDS, Loeys-Dietz, etc.

It was elective. 

[SoCal_Bear]

19 hours ago, Ausmumof3 said:

There is an increase in the rate of aneurysms etc post-covid although obviously it’s not clear whether that was a factor. But seeing as this is an awareness raising thread I think it’s worth noting.

I think it is worth noting he had Covid 4 months prior. It is well documented that Covid damages the vascular system and causes cardiac complications.

 

[Ausmumof3]

4 minutes ago, calbear said:

I think it is worth noting he had Covid 4 months prior. It is well documented that Covid damages the vascular system and causes cardiac complications.

 

Yep. It kind of feels like it’s not ok to say this though. Norman Swan (radio doctor/science communicator) got into a lot of trouble down here for suggesting that two peoples deaths may have been covid related. In one case, he was probably wrong and apologised (person hadn’t ever tested positive for covid), in the other case family and friends were super angry but I still think he’s probably right. It seems to be a part of this whole weird we don’t talk about covid thing going on down here. 

[SoCal_Bear]

I personally find it frustrating that the medical community does not track possible downstream connections to prior Covid infections. I think this is a big deal that strokes, clots, PE, DVT, heart attacks, etc are not being tracked this way. ETA: add to that other stuff like diabetes, kidney failure, neurological damage, etc...There's a whole lot of stuff that I believe we are going to see in the years to come. I realize I am coming at this as someone who is dealing with LC...but it is darned frustrating to watch this level of denial going on.

Edited December 15, 2022 by calbear

[Ausmumof3]

4 minutes ago, calbear said:

I personally find it frustrating that the medical community does not track possible downstream connections to prior Covid infections. I think this is a big deal that strokes, clots, PE, DVT, heart attacks, etc are not being tracked this way. ETA: add to that other stuff like diabetes, kidney failure, neurological damage, etc...There's a whole lot of stuff that I believe we are going to see in the years to come. I realize I am coming at this as someone who is dealing with LC...but it is darned frustrating to watch this level of denial going on.

I’m really sorry to hear you have LC. That would feel so frustrating. 

[kbutton]

6 minutes ago, Ausmumof3 said:

I’m really sorry to hear you have LC. That would feel so frustrating. 

Me too! I didn't realize you have LC, @calbear Hugs!

20 minutes ago, calbear said:

I think it is worth noting he had Covid 4 months prior. It is well documented that Covid damages the vascular system and causes cardiac complications.

I can't find anything smoking gun when I search, but there are hints maybe? I think part of the issue may be that aneurysm formation was long thought to be related to hemodynamic stress, but it appears that at least some of the time, it's chemical pathways and maybe hemodynamic stress as well. It's not necessarily a straight line from cardiovascular disease to aneurysm. 

14 minutes ago, calbear said:

I personally find it frustrating that the medical community does not track possible downstream connections to prior Covid infections. I think this is a big deal that strokes, clots, PE, DVT, heart attacks, etc are not being tracked this way. ETA: add to that other stuff like diabetes, kidney failure, neurological damage, etc...There's a whole lot of stuff that I believe we are going to see in the years to come. I realize I am coming at this as someone who is dealing with LC...but it is darned frustrating to watch this level of denial going on.

I am really concerned about diabetes and blood clots, especially. Blood clots are a dime a dozen in my family (both sides), and only one person knows why they get them (and it's something that sometimes clusters in families but isn't actually genetic). My son had PEs this summer, and his workup didn't find an explanation. (And it's a pet peeve of mine when people say DVTs cause PEs. They can, but you can have PEs all by themselves, and IIRC, the percentage that occur without DVT is significant.)

[SoCal_Bear]

There is also the work being done that shows that Covid damages blood vessels so wouldn't that make you more susceptible to an aneurysm?

 

[Laura Corin]

On 12/15/2022 at 7:03 PM, Melissa in Australia said:

I thought it was the curse of the stadium.

Didn't over 400 people (workers on site) die while it was being constructed because if the applaing working conditions. 

This is a good analysis of the figures

BBC News - Have 1,200 World Cup workers really died in Qatar?
http://www.bbc.co.uk/news/magazine-33019838

[kbutton]

1 hour ago, calbear said:

There is also the work being done that shows that Covid damages blood vessels so wouldn't that make you more susceptible to an aneurysm?

 

Theoretically, yes.