Sunday, January 1, 2023

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

Greetings once again, loyal readers of the Fibrinogen Amyloidosis blog. I hope 2023 is going well for you so far.

Since this is my eleventh Happy New Year post I have eleven exclamation points in the title. I briefly considered using something like Roman numerals and replacing ten of those exclamation points with the letter "X." But then I realized I didn't want to eliminate exclamation points altogether for years 15 and 20, or force an exclamation point in there somehow, so I decided against that. What I have settled on for now is to put a space after every tenth exclamation point to make them easier to count.

I'm still alive and kicking, and asymptomatic at the ripe old age of 60. I do have a little bit of personal health news to report, which I'll do after a quick update on some blog stats.

Since this is the third consecutive Happy New Year post, there obviously wasn't much activity on the blog in 2022. This post brings the total number of posts up to 193. The all time pageviews increased from 250K to 282K in 2022.

Only one new country visited the blog in 2022, bringing the total to 167. It was Faroe Islands, which is an autonomous territory in the Kingdom of Denmark. It's a group of islands about halfway between Iceland and the coast of Norway, with a population of approximately 54,000.

Ok, to bring you up to speed on my health news we need to go back two years, to January of 2021.


January: Annual physical exam. Serum creatinine = 1.11 mg/dL; GFR > 59; Creatinine-spot Urine = 160 mg/dL

February: My doctor's office called me and said they would like to refer me to a nephrologist since my creatinine-spot number was a little high, just to be on the safe side since I have fibrinogen amyloidosis. I had not paid much attention to my creatinine-spot numbers before, and if I remember correctly from doing a little research at that time it's not a very useful measurement by itself since it can increase in the short term for a variety of reasons. But it can be an indicator that additional tests and follow-up are warranted. I don't have creatinine-spot numbers in my lab work before 2017, and that year it was 148 mg/dL. In 2018 it was 45, then 39 in 2019.

March: On the Ides of March I had two firsts: My first nephrologist appointment and my first virtual doctor appointment. This was about one year into the Covid-19 pandemic so medical facilities were still limiting patient contact as much as possible. The appointment with Dr. S went well and she asked about my genetic testing and Mom's medical history. I could tell she knew this was something other than AL amyloidosis, and she half-jokingly said I probably know more about fibrinogen amyloidosis than she does. She said she would do some basic lab work and go from there, and if everything seemed fine she would monitor my numbers every six months for now, then extend that out. Two days later I had lab work and her office let me know my kidney function was normal. It was a relief to hear that from a nephrologist, although I wasn't overly concerned. (Serum creatinine = 1.19 mg/dL; GFR normal; Creatinine-spot Urine = 106 mg/dL)

July: 6 month follow-up lab work by general physician. Serum creatinine = 1.01 mg/dL; GFR > 59; Creatinine-spot Urine = 60 mg/dL

September: Lab work with the nephrologist again. Kidney function still normal. (Serum creatinine = 1.09 mg/dL; GFR normal; Creatinine-spot Urine = 31 mg/dL)


April:  In-person visit with nephrologist. Kidney function normal. (Serum creatinine = 1.09 mg/dL; GFR normal; Creatinine-spot Urine = 74 mg/dL)

November: Physical exam. Kidney function normal. (Serum creatinine = 1.16 mg/dL; GFR > 59; Creatinine-spot Urine = 35 mg/dL) 

In summary, my kidneys seem to be doing fine and my creatinine-spot urine seems to fluctuate quite a bit. No proteinuria detected, so no 24-hour urine tests. If my kidney function does start to decline it will likely be caught early since I now see a nephrologist periodically, and those appointments are staggered with appointments with my general physician where I also get lab work done.

That's all there is to report right now. Until next time, stay healthy and take care.