2) So, what happened then? The Missing Year

February 7, 2020
Friday

The Missing Year: So, lots of things transpired since my first post on this blog.  For the most part, I had decided, "The Hell with it!" and, "Who gives a shit about me going down the tubes (toilet?) with Cirrhosis of the Liver?  I don't even want to think about it myself!"

There were uncomfortable meetings with my hepatologist, Dr. Wells, and complete changes of diet, and adjusting to thinking about myself as a "sick" person again, and a basic depression about the state of my health and worthiness as a person. There was confusion about how to share this new malady with my friends... "So, it seems to be that I have to quit drinking cause I have cirrhosis! No, I didn't think I drank that much either.  In my mind of minds it seemed as if my conversationists were looking at me with a judgemental squint, unable to fully grasp "cirrhosis?" as they took a little step back, mentally putting me on the "Group W" bench of their mind. 

It also seemed to me that my Dr. Wells also had a marginalizing attitude on top of her condescending nature: "Just accept it sir.  You have Cirrhosis of the Liver and you must never drink again or we who bestow liver slivers to patch up your miserable liver won't even put you on the list because of your alcoholic habit!" I must admit now, a year and a half later, that she no longer seems so condescending.


It helped, I think, when I asked her about any relationship between my HHT (Hereditary Hemorrhagic Telangiectasia) and her cirrhosis diagnosis.  She seemingly softened (in my observation) and said something like, "Oh. I didn't realize you have HHT. That could be related to the liver shunting we see in your MRI."

Along with my reluctance to write another personal medical issues blog it seemed to me the blogosphere had a lot of online liver journals.  So my interest in writing about my liver issues kind of drifted down to the bottom of the laundry basket whilst I pondered if "Jack's Liver Adventure" was going to join "Jack's Kidney Adventure".  

A Year of Salt-free Living Whinelessly: The last year and a half with no wine, tequila, and gin has actually been easier for me than trying to eat a low salt diet. I found it less problematic to go without wine and spirits than without salt.  And, eating out in restaurants is pretty challenging unless I order foods I do not want or like.  "Please hold the salt on those chips.  And, do you have any salt free frijoles? How about salt-free enchilada sauce?  Queso? ~~ ¡Hijole!  Really. So Liz and I have learned to make several kinds of our own enchilada sauce; green chile sauce and tomatillo sauce. She cooks salt- free pinto and black beans in our pressure cooker and adds her own salt while I whine about bland beans. One good thing: we have saved money on going out to eat!

And we have saved money on wine as well.  Liz usually only has a glass when her mom comes to dinner, or when we have company.  To be "part of the crowd" I have cranberry juice in a wine glass. Our well stocked liquor cabinet waits for company to pour forth it's spirits when friends come over.  I worried at first that dropping wine out would lead to more soda pop consumption but that hasn't really happened.  I do keep some ginger ale and root beer on hand for special occasions.

Writing About HHT: I've known I have HHT for many years: I had nosebleeds ever since I was an adolescent. I probably had them as a child.  My mother was plagued with nosebleeds too and was part of a group of patients being studied by the researcher Robert I. White at Yale when HHT was better known as Osler-Weber-Rendu syndrome, a rare  autosomal dominant genetic disorder.  I had mentioned HHT a number of times in Jack's Kidney Adventure (see #'s 449: Report from Southwestern HHT Center in Dallas; # 379: Endoscopy with Dr. Poreddy and AVMs in my tummy; and #325: "Big Bad Bloody Nose with a review of my mom's HHT and some low blood count mentions.)

Up until about 2017 I had an ENT Doctor (Joseph Leary) at Austin Regional Clinic who was very responsive to getting me in when I had a serious nosebleed (epistaxis) and cauterizing the "spot", many times fitting me in for a quick Zap between his other patients. In 2017 Dr. Leary referred me to Dr. Levy because best treatment is now done with laser. Dr. Levy has worked on AVMs on my tongue and gums.

Since the start of cedar season this year here in Austin, my over the counter allergy meds have dried out my nose which has led to more nose bleeds, which has led me back to the doctors to make a plan about which strategy needs to be used now.  This situation is developing as I write, so stay tuned for updates.

Liz and I also plan to head back up to Dallas for updated testing at Southwestern.