Zero Summing Concern

On December 19th, I had a pelvic ultrasound (regarding the adenomyosis and my PCOS), and I had an abdominal ultrasound to follow up on my NAFLD.

Sharing a crop of the report of findings:

So while, YAY! I did have that fleeting moment of relief to know that there is no "fatty infiltration" of my liver and quite possibly have reversed the NSFLD due to the weight loss, that moment of YAY then morphed into concern about my kidneys, as the multiple cysts coupled up with my hypertension (and headaches, and intermittent flank pain) might be harbingers of ADPKD.

While I have been accused by some to be a hypochondriac, I view myself as a stoic and a pragmatist, and I like to "Prepare for the worst, but hope for the best," with more emphasis on the former than the latter, to be honest. I have been reading up on ADPKD to familiarize myself with this, and here's a crop from the Mayo Clinic's site, which was kind of sobering, regarding possible complications:

And on PubMed, I found this information (and I fit the profile of a PKD1, given my bouts with proteinuria & hypertension):

So, *IF* I am ultimately diagnosed with this, I can still anticipate growths in my liver, among other things. And given my Factor Five Leiden Mutation (plus the additional, possible diagnosis of ADPKD), it looks like it puts me at an even higher risk for a stroke or aneurysm. But the most upsetting thing for me to think about is that mitral valve issue (well that, plus enormous, non-functioning kidneys, and possibility of dialysis etc).

While I do not believe my dad was ever officially diagnosed as having it, I believe he fit the profile. I believe his mom had it (and died from it) and his mom's younger sister (who passed away one year ago from TODAY) no doubt had it. 

In 2008, dad had his mitral valve replaced (and subsequently died, due to his overall health being so poor--and I believe his official cause of death was cardio-pulmonary, and renal failure). Last year, his aunt had her mitral valve replaced (though at close to 82 vs my dad's 67).  

There is no cure for this, if they do diagnose me as ADPKD. There are no supplements for me to take to "hack" or slow the progression. The only thing I can do is try to better manage my hypertension, try to balance out my diet a bit more (even though post op WLS, the focus is protein), try to cut down my caffeine intake, and possibly try to get more active (the latter of which has been something I've been working on for a while now, as I've been focused on better managing my pain issues).

Death awaits us all. No one gets out of life alive. But I would like to have some measure of control over the length and quality of my life, and try to minimize whatever suffering awaits me further down the road.

My endocrinologist was the one who ordered the ultrasounds to be done. And is on vacation until after the first of the New Year. I had my internist CC'd on the ultrasounds, and he provided me a copy of the reports, which I promptly scanned and sent along to my renal guy, and to my gynecologist. And I have made a hard copy for my cardiologist who I will be seeing in February. 

Perhaps I should mention this to my neurologist as well, since I've been under his care for migraines, which run in tandem with my menses, however, I'd feel more comfortable if we ruled out cerebral aneurysm. 

In the interim, I will probably contact my dad's former cardiologist to find out if dad was ever diagnosed as ADPKD (which would be useful information on the differential). And perhaps I will try to reach out to my aunt's son (perhaps sometime NEXT week, not today--I'm sure today's date is still raw for him, as it's the first anniversary of her passing), to find out if she was ever diagnosed with ADPKD.

And other than that, hurry up and wait.

Endocrinologist Appointment: An Update

Worried about my liver. It's tender when the doc palpated it.

AST/ALT, plus lipid panel and iron/ferritin etc are all perfect. 

Endocrinologist told me I haven't reversed my NAFLD, despite weight loss and cutting my risk factors for diabetes etc. 

Now wondering if my (non-symptomatic) factor five leiden mutation (heterogenous) might be influencing/impacting the NAFLD, as well as my hypertension. To add to that constellation of fuckeduppedness, even despite my weight loss, I still have Syndrome X. 

As is my nature, my mind goes to the things I can control, like how to combat oxidative stress on my liver; yet, in conflict with that, I still want what I want. I want to be able to drink a glass of wine or cocktail a week or so. 

In the meantime, I am trying to hydrate more. Going to up my omega-3 to 2x a day. I'm already on alpha lipoic acid and milk thistle both 2x a day. Was investigating SAM-e, but endo said NO. So not sure what else I can do to hack this. 

I'll be scheduling an abdominal sonogram for the liver, and a pelvic U/S for the adenomyosis and PCOS sometime soon. So I guess I should anticipate being referred out to a liver specialist in 2015.