Saturday, January 1, 2022

Happy New Year!!!!!!!!!!

Greetings once again, loyal readers of the Fibrinogen Amyloidosis blog. Long time no see. Since this is my tenth Happy New Year post, I have ten exclamation points in the title of this blog post. When I first mentioned that scheme in the 2014 Happy New Year post, I said, "Hopefully I'll be around long enough such that the number of exclamation points becomes ridiculous." If we aren't there yet, I think we're pretty close.


For those of you who subscribe by email, be sure to read to the end of this post for some important information.


So, what happened with the blog in 2021? Not much, obviously. The post before this one was the Happy New Year post for 2021, so the grand total for 2021 was . . . one post. I was going to start posting some things late in the year, but at some point I decided to just leave 2021 alone and work on making 2022 better. I know I will be doing at least one post in 2022 to cover a bit of personal health news. Nothing serious, but here's a teaser: I have a nephrologist now.


Total all time pageviews for the blog increased from 191K to 250K this year, with pageviews per month ranging from 1100 to 9400. Five new countries visited the blog in 2021, bringing the total to 166. The five new visitors were:

Myanmar (Burma) Uzbekistan Vanuatu Yemen Zimbabwe If you plot those five countries on a world map (Mercator projection) you'll see they form an upside down letter "V," with Uzbekistan at the top.

Spam comments were very sparse once again in 2021. Other than one about Russian call girls, the spam comment with the most practical information was this one: "To make sure you get paid on time, always use an invoice form that contains the right details such as payment terms, itemized charges, and your payment address."

As some of you know, the amyloidosis community lost a very important member in 2021. Dr. Merrill Benson of Indiana University School of Medicine passed away on September 11, 2021. He was instrumental in discovering many hereditary amyloidosis mutations, including the first known fibrinogen amyloidosis mutation (Arg554Leu) in 1993, followed by the most common one (Glu526Val) in 1994. I always enjoyed listening to the presentations he gave at the hereditary amyloidosis meetings in Chicago, and he will surely be missed by many colleagues and patients. Here are links to his obituaries published in the Indianapolis Star newspaper and in the most recent issue of the journal Amyloid. The one in Amyloid was written by a colleague of his and covers more details of his career and what it was like to work with him, so be sure to read them both. https://www.indystar.com/obituaries/ins126861 https://www.tandfonline.com/doi/full/10.1080/13506129.2021.1996992
Ok, here is the news for email subscribers. Since the creation of this blog, subscribing via email was accomplished by a Google service called Feedburner. That service used the email address you entered when you subscribed to the blog and sent an email when a new post was published. Unfortunately, I received notice early in 2021 that Google would no longer support Feedburner. If I understood that notice correctly, existing feeds would still work indefinitely but new subscriptions would be disabled. So I poked around on the internets and found another free service I could use instead of Feedburner, and at some point I removed the Feedburner subscribe widget from the blog and added one for the new service, called Follow.It.

Note that I have not moved any subscriptions over from the Feedburner service to the Follow.It service because I feel like people should opt in to that only if they want to. So right now, as of January 1, 2022, your Feedburner subscription is still active and if you automatically received an email with this blog post then the service is still working. (I have not tested it, so I honestly do not know yet.) If the bottom of the email has these two lines . . .
You are subscribed to email updates from Fibrinogen Amyloidosis. To stop receiving these emails, you may unsubscribe now. . . . then that email came from Feedburner, in which case you do not have to do anything to keep receiving the blog posts via email from that service. (Again, "they" say it will continue working indefinitely, which doesn't necessarily mean forever.)

But if you did receive the email from Feedburner and would like to switch to the new service (Follow.It), just visit the blog (www.fibrinogenamyloidosis.com) and click the Subscribe button on the right side of the page after entering your email address. You will get a pop-up message asking you to click the confirmation link in the email it just sent you. That email will also tell you how to log in to the Follow.It web site to manage your subscription. Once you receive a blog post from the Follow.It service you can unsubscribe from the Feedburner service using the link at the bottom of that email.

If you did not receive this blog post via email but would like to subscribe, click the Subscribe button on the right side of the page after entering your email address.

In summary, if you received this blog post via email you do not have to do anything to continue receiving them via email. If you did not receive this blog post via email and would like to receive future blog posts, click the Subscribe button on the right side.

I know that was a lot to follow, so there will probably be some more communication about it either in additional blog posts, comments on this post, or both. If you have any questions or need help with your email subscriptions, feel free to email me directly at toe at juno dot com. Hopefully we can get everything straightened out by the end of the year.

David

Sunday, January 31, 2021

Happy New Year!!!!!!!!!

Greetings, loyal readers of the Fibrinogen Amyloidosis blog. Welcome to 2021, which has to be an improvement compared to 2020, right?

Here is what happened with the blog in 2020:

  • 2 new blog posts were written. (Down from 3 in 2019)
  • No new articles were reviewed.
  • 2 additional countries visited the blog, bringing the total to 161.


In patient news, I became aware of two more families affected by fibrinogen amyloidosis in 2020, and I know of one combined liver and kidney transplant that occurred in the US. As for me, I am still asymptomatic. My creatinine was just barely above the normal range in July of 2020 but then back in the normal range again when it was checked in January of 2021. There is still no indication of protein in the urine and my eGFR is fine, so for now I'll consider the high creatinine reading to be an anomaly.

Hopefully I can catch up on some article reviews this year. (It seems like I've said that before). There have been a few articles published in the past couple of years specifically about fibrinogen amyloidosis, although at a glance they do not seem to have any significant developments with regard to treatment.

One of the benefits of fewer blog posts is that it reduces the number of spam comments, as the blog only received two this year. Neither one was particularly entertaining like some previous spam comments have been, but one got my attention when I was reviewing them for this blog post. Here is the comment (edited for typos), minus the hyperlink which is the usual tipoff that a comment is spam: "You have done a great job. I hope you will do much better in the future." Me too, spammer. Me too.


=====Consolidated blog stats for second half of 2020=====

As of December 31, 2020:

Total posts: 190

Total pageviews: 191K (significantly impacted by heavy daily traffic from Hong Kong until December)

Email subscribers: 15 (unchanged)

Total number of countries that have viewed the blog: 161

No new countries viewed the blog in the second half of 2020.
=====

Thursday, July 30, 2020

Ten years?

Greetings, loyal fibrinogen amyloidosis blog readers! If you are reading this email or blog entry during the summer of 2020 I hope you are staying safe and COVID free. For those of you reading this on the blog many years after 2020, I hope the COVID pandemic of 2020 is finally over and you no longer have to view every person you get close to as potentially hazardous to your health. (Also, you citizens of the future should always have plenty of toilet paper at home. Trust me.) 

There is not much news to report from here. I am still asymptomatic, and my only recent medical issue was a little scare with some chest pain that my doctor and I are attributing to musculoskeletal stress while playing around with my grandson in the front yard one afternoon. (If playing with a six-year-old child sends you to the emergency room, does that mean you're getting old?) One benefit of this episode is that I had a stress test and echocardiogram, both of which were normal. So now I have some baseline measurements in case things start to change later.

Although I still do not have an article review ready for the blog, I wanted to get a post out today, July 30, 2020, because it was ten years ago today when Mom and I were informed by Dr. Martha Skinner of the Boston University Amyloidosis Center that genetic testing showed Mom had the fibrinogen mutation. Here's a link to my blog post where I described that call and what happened over the next few days:

That was the beginning of my journey into the world of fibrinogen amyloidosis, and it has certainly been an interesting ten years. That first article Dr. Skinner sent me has now grown to around 60, most of which have been reviewed on the blog. It is also worth noting that the current treatment options for fibrinogen amyloidosis are essentially the same as what Dr. Skinner told us over the phone in 2010, which is organ transplants. Hopefully that will not still be true in 2030.

I will go ahead and close out this post by once again saying I hope to start doing some article reviews soon. But I am not going to suggest that will happen once things calm down in the world. So goodbye for now, stay safe, and carry on.

= = = = =
Combined stats for January through June

Total posts: 189 (1 in January)

Total pageviews: 152K (average 2K per month)

Email subscribers: 15 (unchanged)

Total number of countries that have viewed the blog: 161

New countries:
= = = = =