CoCo's Journey - An update -- of sorts

 I was asked for an update.  So - I waited until my last appointment with my liver doctor to see what he was going to say.  What we were going to do.  What the hell is going on.  

So - a little recap.  Mid August I was admitted to the hospital due to liver disease.  The initial diagnosis was cirrhosis of the liver due to malnutrition, which was caused by malabsorption. After a biopsy, that diagnosis was changed to pre-cirrhosis.  I had over two liters of fluid removed from my belly by needle aspiration the first day.  I left the hospital five days later with a PICC line with IV nutrition.  IV nutrition supplemented my regular diet for four months.  My PICC line was removed in December and now it's a matter of how my body adjusts as to what the steps are.

Since August and having the IV nutrition, I gained over 40 pounds.  I was a little over 140 pounds when they disconnected IVY (my PICC line/nutrition/bag - that's her name).  When I got out of the hospital, I was about 120 pounds.  But I had a lot of fluid on my body due to the liver disease.  My legs looked horrible and like tree trunks.  So when the diuretics started working, I went down to 95 pounds.  I looked like a skeleton with skin.  I looked like a pre-pubescent 11-year-old boy.  I looked like death was going to knock on my door.  And I would have probably answered it.  

My Skeletor phase - 95 pounds

In those four months, like I said, I went up to 140 pounds.  Then the decision was to break up with IVY and see how my body responded.  I don't know if you recall, but I was on IV nutrition back in 2022.  I was on it for about two months.  I gained twenty pounds.  When it was removed, I lost that weight within about a month.  I went down fast.  That was my fear this time.  I would remove IVY and I would lose the weight within a couple of weeks. Luckily, so far, I've lost only about twelve pounds.  I've pretty much been stable.  But we aren't out of those woods yet. 

Getting a photo of my tattoo - but
showing how thin my arm was back then

I went to see my doctor last week.  He always goes on and on about how good I look. How healthy I look now.  He likes to tell me that I have a belly and that I have filled out.  I like to tell him I am getting boobs again.  He always responds, "we are not going to talk about your boobs".  I have been off diuretics for months.  My numbers are better.  Well, some of them.  I'm very anemic.  My iron is low.  Hopefully, getting an iron infusion or starting iron will help with both of those.  I'm waiting to hear the verdict.  You know - hurry up and wait.  

So - now the discussion about having a gastric bypass reversal.  Here we are.  Living very nice.  Pretty healthy.  Pretty energized.  Pretty amazing.  I'm feeling good.  My food still has a tendency to go from tonsils to toilet very quickly.  But, I seem to be having a lot less of that issue than I did months ago.  I do not have any edema or swelling.  But, here is the kicker.  If I lose the weight again, because my body doesn't absorb the calories, I could cause further damage to my liver.  If I get the reversal and I gain even more weight back (because I really do eat quite a bit of food), I could damage my liver.  Does anyone know of a therapy or treatment for between a rock and a hard place?  Because right now, I'm at a loss.  

Right now, the plan is to watch what my body does.  The ball is kind of in my court.  My doctor will support me either way.  He said I could contact my surgeon and schedule if I wanted to.  I can see what my body does.  So - I've decided with the latter right now.  Food and I have a love and hate relationship.  I love food.  But I don't love a lot of it.  And sometimes, when I eat, my food doesn't love me.  And what I love today, I may not love in a few days.  I went two to three times a week for a very long time getting fried drumsticks from either KFC or the grocery deli.  I loved them.  Now I can't stand the idea.  Right now, we (the roommate daughter and I) are eating a lot of beef.  Steak, roast, corned beef,  hamburger made into tacos/enchiladas/spaghetti sauce/casseroles/etc. We've eaten a lot of soup this winter.  Potato/ham and bean/homemade stew.  YUMMO.  It just depends on how long I like certain foods.  But, hopefully, I can keep eating and keep numbers up and repair or restore my liver numbers a lot more.  

So - what are the things that drive me crazy about liver disease??  Thanks for asking.  I am cold all the time.  I do not get warm.  During the summer, I would love to be in the very hot jetways.  They were probably 110 to 120 degrees when it was really hot. I would just go hang out there to get warm.  And I would be wearing my sweaters.  This winter has about killed me.  When I'm home, I instantly turn my heat up to 74 degrees when I wake up.  If it's my day off, I add the fireplace, too.  My house is extremely warm.  I can't wait for the temperature to get above my old age outside.  And I will probably need it to be even higher than that!!  

My current image.  All 130 pounds.
Was showing off my travel wear to head
to a week-long class in Atlanta. I got the 
outfit for Christmas - my daughter was looking
for anything soft!!!  It worked perfect. I could
use some more weight.  But, I'm happy here. 
And the fabric didn't make me insane!!

My other issue is - itching.  Like my back, my sides, my arms, my legs.  BUT, my doctor prescribed me a thing I call my sawdust drink.  I put a half of a scoop into a small amount of water.  Mix it up and chug it down.  Then drink some more water right after.  Because the shizz coats my mouth and feels like sawdust.  You would think there would be an easier solution.  Especially in this day and age.  It seems to help a lot.  Add in my calamine spray, that I spray over my back and it's tolerable.  The evenings are the worst.  the skin under my armpit feels completely numb.  But only at night.  And when I'm busy, I really don't pay much attention or notice it.  I keep hoping that my body will start to do a little better than the itching will go away.  I currently have an issue finding things to wear.  I cannot wear bras anymore.  At all.  I do put a tank top under most shirts I wear.  Mostly I wear large t-shirts because I have a hard time with a lot of fabrics.  I handle my uniform all right.  Which is really good!!

What are the positives of liver disease??  Not much.  But I have a deeper appreciation of life and living. I have a deep realization that mortality really is a thing.  I have a deep love of family.  I wish I could find a huge mansion with enough bedrooms and bathrooms for all of us to just move in together and not kill each other.  A cognitive awareness of how unfair this world treats people that are suffering - that's not really a positive - except that I have that awareness much more now than I did before.  And friends and family that I completely adore.  That includes you.