Break out the Fava beans and Chianti...

Ok.  Ok.  Just kidding.  First of all, the pic of the flowers (yes, enhanced for artistic effect) were given to me by T yesterday.  I have to admit I was very surprised, but he said he knew I wasn't feeling good and wanted to do something for me to make me feel a little better.  The gesture is incredibly sweet, and it comes on the heels of some news.

As you may know from reading other posts, and/or my other blogs, I had a transjugular biopsy on my liver a couple of days ago.  Yesterday I received a call from my GI/liver specialist's office telling me he wants me to have an ultrasound on my liver on Monday to double-check some things because they found elevated portal pressures (hepatic portal vein).  I told T I had an ultrasound scheduled on Monday (also have another appt with my hematologist at the same hospital) and why.  I guess maybe he's getting the idea now that I'm not making up symptoms and that I really do feel this bad.

This is the most difficult about having chronic illness, or just an illness that doesn't present with something you can see clearly with your eyes.  Many times there are signs and clues, such as deepening dark circles under and around the eyes--to the point where it looks like someone hit you in the face, maybe the person's eyes look 'duller' and less bright and 'open,' or maybe it's a number of things that, had you not seen the person for a while would startle you.  Too many people suffer with different illnesses and are often not believed, shrugged off, and worse... because they can't SEE everything going on.  Even with a diagnosis it seems that, unless it's cancer, etc., no one believes that you can be extremely sick and still be able to stand.. at all.  I simply don't get this brand of compassionless thinking.

I'm not going to focus on people who lack compassion or the ability to try and understand what they've not experienced, so I will leave my thoughts on the matter as-is.  Right now my focus, my goal is just to continue to wait for test results in order to get answers, as well as solutions.

Staying in a peaceful mindset is going to take a bit of work today.  I'll keep trying just the same.

PART 2: Priorities Revealed

Assuming you've read PART 1, I won't rehash the entire experience.  And I've spoken of my disappointment (for lack of a better word) in that T has the worst hierarchy of priorities that I've seen in a few years.  And in light of his absence during yesterday's procedure shows me more than ever where he is, who he is, and what he is.

When I was informed yesterday that the procedure I was having was more serious and carries far more risk than 'just' the biopsy I thought I was having, my radiologist asked me if I had anyone there with me.  The fact that I was alone in the section where I waited to be taken to my procedure didn't deter him from asking, because.. after all... I was the only patient there who didn't have anyone with them.

I told him T had dropped me off and went to work;  and he just looked at me for a moment, sat down, and began telling me (using straight-forward language) how "Tricky" the procedure I was going to have, how serious it was, and about the risks involved.  He said if I wanted to call T and give him an opportunity to come back to the hospital so he could be there as it's being done that they would hold off on performing the procedure until he arrived.  The radiologist left the room, and I called T...

T's reaction?  "Well, they have my contact information so that if anything happens they can call and I will come there."

I sat there for a split-second taking in his response, then was filled with the overwhelming need to hang up the phone, to NOT hear his voice at all.  And while this isn't the first time I've felt this reaction, it was by far the strongest I've felt.  I instantly went into self-preservation mode and wanted him nowhere near me.

The nurses, doctors, and other supportive medical staff were the only ones who made me feel like I wasn't completely alone.  I accepted that for what it was and allowed myself to just focus on what was about to happen and put T far, far out of my mind.  In fact, to be honest, he didn't enter my mind at all until at the end of recovery when I was told I was being released.

What does this mean?  That's not a question I'm asking myself, because I already know the answer.  I've been there, done that in the past with someone not giving a crap about my health, my well-being, and diminishing what I was going through or dealing with.  Has society really become a nation of zombies who have nothing but bricks for hearts?  I'm certainly beginning to think so.

I was supposed to go home and rest, not strain myself, no lifting, not even driving.  But T had other plans, ones that made HIS life ultimately easier.  Because that's what it all boils down to.  The aching in my neck and liver had begun, so I prayed that the medication I was given at the hospital would kick in soon and I at least wouldn't be in pain.

A heart cath is scheduled for the 19th of this month (November), and I was given a lab order to get blood work done prior to that day, as soon as possible.  T decided that since I was "Already out and about" that I should go to the lab to get the blood drawn.  I was painful, loopy, tired, and I wasn't at all up to walking through a parking garage and hospital in order to get blood drawn.  I just wanted to go home and rest.  That's all.  Just go home and rest.  But that wasn't about to happen.  T would have his way, and I would simply have to suck it up and deal with the unpleasantness.

This isn't the first time I've been with someone who lacks compassion, but at least I now know how to deal with it while protecting myself at the same time... thanks to a couple of past relationships.  At least I was smart enough to learn from the experiences, and while those lessons were necessary and taught me much, it doesn't mean I'm not feeling the effects of what's happening.

Deja vu.

I'm still processing everything, having just gone through this yesterday.  I've no real thoughts on the matter other than the obvious that one would expect to have after such.

I'll come to terms with things---perhaps when I feel stronger.

PART 1: I wasn't supposed to be... awake.

But I was... the entire time during the procedure.  It's not exactly the nightmare they make movies and write books about, but it more than surprised me, and it most DEFINITELY surprised the radiologist performing the procedure.  Really.  I was supposed to be asleep.

I arrived at the hospital yesterday morning to have a liver biopsy done.  I'd already researched enough to know what to expect, talked to people in the forum I belonged to to hear their experiences.  I wasn't expecting to be this surprised.  Oh, but I was.. and in more ways than one.

When the radiologist came in with another doctor to talk to me about the procedure, what to expect, how it will work, etc., he mentioned HOW they were going to access my liver.  Now, this is where the first surprise came in...

He began telling me that Dr. S wants things done a particular way and that the procedure I'm having is "tricky" because it involves entering the jugular vein and inserting a wire that will be able to reach the portal vein in the liver in order to check the pressure there.  He began telling me the risks to the heart and lung and liver.  I listened, but I was confused because I thought I was to be there for just the biopsy and didn't know anything at all about checking the portal pressure.  Skipping ahead...

We talked a little about the procedure, and the radiologist reassured me that Dr. S was very specific about what he wanted done.  I asked if anything bad had ever happened during the procedure with anyone he's done it on and he said that the only thing that has happened in his (long) career was one patient's heart went out of rhythm and wouldn't go back in, so they had to stop the procedure, send him to the cath lab to shock his heart back into normal sinus rhythm.  Ok.  Only one event.  So I said..  "Ok.  Let's do this."

The Dr. assisting the radiologist explained about the two medication that I'd be given, that I wouldn't be put completely under but would be unaware of what's going on and wouldn't feel anything, except perhaps the lidocaine they would use on my neck where they would make the tiny incision to access the jugular.  He said I would just 'sleep' through the procedure and would not have any recollection of it at all once it's done and I'm awake.  I was familiar with this because I'd had a heart cath in 2013, and ablations on my heart in 2014... so that twilight sleep I know about and have experienced.

...Off to the OR we went.

Once on the table the anesthesiologist told me she was giving me the first dose of sedation, and that it would be done in stages until they're ready to begin the procedure, then she added "The lidocaine may bring you out of this for a moment because it stings, but it will be brief."  By the time they were ready to begin I was loopy as hell, but I was awake.  One last dose was given, because I was awake... and I think I nodded off for a minute or two.  Then I was awake again.

Awake, aware of my surroundings enough to hold a conversation.

I heard the radiologist say he was administering the lidocaine.  Oh yeah---I definitely felt that.  But it quickly receded and I felt nothing in that area.

I felt the cath wedge go into my jugular, and I continued to feel it go down my chest, felt something strange with my right lung, felt it proceed past my heart--to which my heart fluttered a little--and then nothing... for now.

I heard every word said, heard the radiologist talking to the doctor that was there, even remember hearing him calling out the numbers once he began reading the wedged pressure and free-flowing pressure.  I remember the numbers exactly.

A couple of times the anesthesiologist raised the blue drape over my face to look at me, and I returned with a smile.  Then... they changed Caths and went back in to take the biopsy samples...

The first "snap!" I heard had only a little discomfort with it.  The second "Snap" was a bit more painful and I said.. "Oh, that one smarts!"  This was the first time the radiologist knew I was awake.

"How much did you give her?" I heard him ask the anesthesiologist.  "She's awake."  She responded with the dosage she'd given me, and he said.. "Wow.  I would be on a vent if I'd had that much."  He has a smile in his voice, so I know he was just joking a bit. Plus I was familiar with this radiologist as he'd done the biopsy on my thyroid nodule a year ago.  He's good guy, a really skilled radiologist.

So the third "Snap" I heard came with significant cramping across the entire front of my ribcage, where the liver is.  And oh yeah.. THAT one definitely hurt.  And folks, I have a high pain tolerance for stuff like this, having kids, etc.  So when I say it hurt.. I mean it.

Once they were finished they removed the blue drape and one of the nurses told me she was applying pressure to the little hole where they'd entered the jugular.  She told me there may be a bit of a bruise there and that she was sorry if the pressure she was applying hurt.  It really wasn't that bad, and I told her so.

As I lay there with pressure being applied to my neck the anesthesiologist came over and apologized that I felt pain and explained she wasn't sure why I remained awake.  I assured her that it was okay and that the pain I did feel didn't last a long time, that I was okay.  They returned me to recovery.

I told my nurse there what happened, and she looked at me as if I'd grown a third eye. lol  The other nurses turned around (my bed was right next to the little desk where all the nurses sat) and gave me a look of horror. haha   Hey, no events... so to me this was a good procedure.

I'll have the results in a few days, I think.  But I don't believe I have portal hypertension at all.  I believe Dr. S just wanted to make sure due to some of the symptoms I was having.  As for the presence of any cirrhosis... I don't believe that's the case either, or Dr. S would've seen the prominent veins in my esophagus etc. when he did the EGD a couple of months ago.  What I DO expect is to see  if NASH is actually present and to what extent, and if there is any fibrosis or not.  I fully expect the outcome to be okay, with perhaps  NAFLD or maybe NASH if inflammation is present.

Liquid diet and decisions, decisions, decisions

Today is the day before my EGD and colonoscopy (just had one last year), and as anyone who's gone though a colonoscopy knows... the day before, the liquid diet, and especially the prep... is absolutely awful.  So that's what I get to deal with today.  It is what it is, and it's only until tomorrow afternoon.

I honestly can't remember if I even spoke about it here, but I have to have the EGD and colonoscopy due to nonalcoholic steatohepatitis and my ferritin being pretty low.  Normally with liver issues the ferritin goes UP.  In this case the Dr suspects a bleeding situation, such as peptic or duodenal ulcer, the latter being the highest suspicion.  Either way, today isn't going to be fun or easy.  C'est la vie.

On with the liquid diet consisting of mostly clear Gatorade.  I also have a few other things on the list that I'm allowed, but I have to drink 8oz of Gatorade no matter what, and then begin drinking the prep solution (mixed with clear Gatorade) at 4pm, and begin the doses of dulcolax at 3pm and again at 5pm.  Why am I telling you guys this?... so if you ever have to go through this, you'll will have had a heads-up as to what you'll possibly be facing.  Trust me, I wish I'd known before my first one, because I would have INSISTED on another prep than the old kind.  It's horrendous, and I flat refuse to EVER drink that stuff again.  Why the hell doctors still use that garbage is beyond me, especially when there are far kinder preps out there at their disposal.  Just saying.

Diet---decions.  I'm striving toward a Vegan diet and have been transitioning from an ovo-lacto vegetarian diet.  Not eating meat is easy for me--of which I've explained in the past.  Meat isn't that important to me, and I don't crave it like some people do.  And when I have eaten it in the past I usually felt sluggish afterwards.  Fish, however, didn't have that effect on me.  Still, giving up meat was simple.  My problem now is my health issues and the change in diet that's on the horizon once we get down to the bottom of things with the low ferritin, liver issues, etc.  Oh, and finding out the hard way that there was hidden dairy in something.  I will spare you the horrors I go through if that happens.  But anyway....

Much is unknown at the moment on how to proceed from here.  So many ill effects from medications I've taken in the past, including weight gain and completely f'ing up my metabolism to the point where I'm finding it difficult to lose.  *sigh*  Still, aside from that I do wonder what I will be asked to do.

Will the doctor tell me I have to eat meat?... will I have to go Paleo?  I know low-carb is one way to fight what's going on with the liver, but... low-carb and Vegan/Vegetarian do not mix!!  All of what I've read people are on a low-carb, higher fat and protein diet.. such as South Beach.  I really don't know what I'll be told, but I do know that if I really am dealing with NASH... I'm at a huge risk of fibrosis...then cirrhosis.  Though rarely do people who have NASH reach that stage, it is still a risk.  Nothing like those who drink, however.  I'm at least quite fortunate there.

So considering the possibility of having to deal with adding animal products back into my diet I'm left feeling a bit lost and uncertain.  I don't think I can do it, even if the doctor says it's necessary.

There has to be a way for me to maintain my chosen lifestyle and achieve the results I need....

Liver

One word that can change everything.  Who focuses on their liver?  No one.  But maybe we should...

Short and sweet for now, because I've told all in my other blog.. Where Fireflies Dream.  But basically my blood work came back showing Stage 3 Nonalcoholic Steatohepatitis (NASH).  It's hereditary, and it can happen to anyone.  Precursors are usually diabetes, excess weight, and a few other things, and people can have this for years without ever knowing.  Liver enzymes can be elevated during one test, normal the next, and varying degrees of both.  So some actually have no idea they're dealing with it until they have symptoms, or when it shows up on labs.  Either way, one must be their own advocate if faced with this, because too many GP's shrug it off and try to treat it themselves.  VERY BAD IDEA, to say the least.  This disease should be dealt with and monitored by a GI specialist.

Right now I'm still in the waiting game.  I have a follow up to discuss my lab results next week, and in a couple of weeks I am scheduled for an EGD and colonoscopy.  Duodenal ulcer is suspected as well, so the EGD is basically for that.  Now, whether or not he decides to to a liver biopsy at that time remains to be seen.  Grading criteria with labs is such that, in many cases, a biopsy is unnecessary.  However, in the case of NASH, because of the inflammation and damage doctors often opt to do the biopsy.  NASH, btw, is the more serious form of NAFLD (Nonalcoholic Fatty Liver Disease).

There's no actual 'cure,' but there have been cases where treating with diabetes meds help... even if one doesn't have diabetes.  Specific diet changes and exercise is really key to helping to stave off the progression of NASH into cirrhosis.  Many times with NAFLD people have been able to reverse the effects and heal their livers.  But if they revert back to anything that caused the issue to begin with (not controlling diabetes, eating a bad diet, etc.).. NAFLD can return.

Prognosis really depends on the individual case, how much damage is done (if any), etc.

This is all I have for now---shortened here due to feeling like crap and having posted the whole thing on Where Fireflies Dream.  I'm tired, and it's time to chill.

till next time.....