it’s the kind of tired that sleep won’t fix

I “came out” on Facebook about what has been going on in my life.  A lot of people already knew, a lot didn’t.  I read all their messages and it brought tears to my eyes the amount of support but I haven’t been back to comment or like anything because I’m just tired. That kind of tired where now communicating with people is hard.

We went to the appointment with the university hospital doctor.  It went well, I think.  I like him.  I get a good vibe.  It was the first time in a while we have left a doctor’s appointment where I didn’t feel dread and gloom and start crying because everything seemed like too much.  There was a sense of “we got this”… even if they don’t, I like people who give off that vibe.

When he came in he immediately sat down and asked us first if we had any questions.  Let us talk first.  That’s kind of new heh.  And very much appreciated.  I’ve grown very used to them coming in, talking very fast and looking very hurried, and leaving.  This guy had no rush at all about him which was a very nice thing to encounter.

I flipped my lid a tiny bit, not in a mean way, but just in a sort of an exasperated way, when learning that one of the doctors (no idea if it was a Boston one or local one) had incorrectly wrote down in his records that he had been consuming SIX 6 PACKS A WEEK.  OMG.  When asked about alcohol use he told them, accurately, that he would sometimes have ONE 6 pack a week (which is like a beer with dinner) at the most.  How the fuck that got translated into 6 beers a day I have no fucking clue but it annoyed me because there it is… even when you have the fucking Alpha 1 tests siting right there in your paper work we go to the liver problems=alcohol assumption.  I just get fucking tired of man… that’s all.  And of course he hasn’t had one drop of anything alcoholic since diagnosed.  Nor any nSAIDs or other pain relievers and he’s obsessive about watching his salt intake.  It makes me look like the unhealthy one now heh

One of the things the doctor brought up… he wants the chest catheter removed ASAP.  He informed us that the chest catheter was usually the absolute last line of defense after all other methods to control the pulmonary effusions had failed.. options which we have not exhausted.  He was not pleased that this had been done.  Which falls right in line with Ki’s pulmonary doc’s opinion.  When he was last hospitalized, the pulmonary doctor on staff at the hospital did not consult with Ki’s pulmonary doc about the catheter.  Why I don’t know but the whole thing pisses me off when I think about now that we have had 2 doctors saying “no, that should not have been done.”  So next week sometime that should be out.  I am massively relieved at the thought.  I could never get used to the idea of that thing and I also don’t know what they were thinking, trying to leave it in there for such an extended period of time.  Even cancer patients and such,they usually only leave it in for several weeks to a couple of months.  The doctor said it was just too much of an infection risk.  They have good track records for people who need them short term, but this is not a long term device like they were acting like it was.

So I will be quite relieved when the tube is gone but we will have to work out the best course of action for relieving the pulmonary effusion.  The doc is talking about upping some medication if his blood work comes back okay and also he could go for thoracentesis as needed… rather that be 1 or 2x a week.  This is apparently a much better option safety wise than that stupid catheter.  I just worry about initially finding that balance so he doesn’t end up at the ER again with breathing problems.

His MELD score is still on the low end of things, which is good.  I wish it meant all these crappy symptoms didn’t happen but unfortunately it does not.  The doctor said they don’t generally move towards pre-transplant testing until the MELD reaches the mid teens which makes sense… putting somebody on the list with a low one would just mean that every single person with a higher one will still get offered a transplant before them.

The doctor made it sound like he was going to do everything possible to help keep his score low for as long as possible and keep him with the organ he was born with as long as possible so we aren’t moving straight into transplant things right away.  Which is good for him, because I know this gives him more time to prepare mentally.  I know we are awaiting the inevitable.  In a way a part of me wishes it could just happen and be done with but the other part is relieved to to get a little more time before that because once it’s done there is no going back.

We go back in March for follow up blood work, ct scan, and appointment.  I really like how they can do every thing there, in one building on one day.  Very important when you are making a 2 hour drive to see a doctor. I was lucky enough to not have to drive today but it isn’t a bad drive either. Everything was right off the freeway.

So that is where we are now.  Nothing much changed I guess, but the whole chest catheter re-evaluated.  That’s a plus.

As much as I don’t want to admit it I feel the wall of depression pushing up against me.  I just don’t know what to do sometimes.  My MIL goes back home tomorrow but this time it is not that bearing down upon me.  I feel like I’ve lost a sense of routine or something.  I don’t know.  I feel kind of purposeless and aimless.  Meh.

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