January 16, 2020

Doctor Diaries: January Follow Ups

OK,  It has been one hell of a week.  But it's almost over.  And then we are starting all over again, but I will gladly take a few days of no doctors.  I need to breath.  And plan.  And process everything this week has thrown at me.  I also need to stay off the Googles until I have an actual diagnosis or at least some more answers.

I usually kick the year off with a bang.  I try to get as many of my follow ups over with for the first half of the year.  Most are 4-6 months apart so it works. Lab work is more often.  Usually monthly if everything is good.  Sometimes its weekly or every couple of days when it is really off.  This week it was labs for 2 doctors and 2 doctor visits.  And it went a little something like this.


Hematology.  INR is 2.0.  Therapeutic range for me is between 2 and 3.  So, Im in range.  which is great.  But being that it is on the lower end, that just means I have to be aware of what I am eating so I don't drop any lower.  Many people will say its easiest to eat the same amount of Vit K and adjust my blood thinners around that.  When I do that, all hell breaks loose.  And I usually end up doubling my medication, which throws me off and back on weekly checks.  Its much easier to just avoid most of it and only tweak things a little bit when my numbers move.

Transplant labs didn't happen.  Apparently there was a problem with my orders.  So that was a giant fail.

David went to see a doctor about his foot pain.  This drs said its not tendonitis but just joint pain.  He also go x rays so we could make sure that there wasn't a fracture.  But that was clear.  So, no answers really.   Just something to expect a few times a year.  Oh man getting old is fun.


Transplant Clinic went really well.  Had a new doctor who was more encouraging and helpful.  It was nice to leave there and feel like I was heard and understood.  Pretty much she said it was ok to not push myself physically but to try just focusing on diet and go from there.  I confessed that I wasn't taking one of my medications before David gave me up.  I about fell out of my chair when she suggested we try switching to something else.  She did say that it might not work, but it was worth a try if I was willing.  So pretty much I am switching out my lactulose for Miralax.  It doesn't bind to all the toxins that are causing my encephalopathy but it might clear out just enough to keep it at bay and be a little easier on my body.  We also switched to Nexium and are hoping that helps with reflux.  She said my latest scans show only a 25% blockage in my veins.  I have a 6 month follow up scheduled and have to redo my scans and endoscopy in June.  So overall, it was a great appointment. Oh and my MELD score was an 18 so no movement there!

Cardiology was a little different.  Good news is my EKG showed no changes.  I have been having some issues with my heart rate jumping around and dizzy spells.  So next week I am going back in for another Echo and an ultrasound of my carotid artery rule out any blockages there.  I will also get a heart monitor.  We are going to start with a 48 hour test and if that isn't looking right, we will move on to a 30 day test and see how that goes.  She did pretty much double my fluids and sodium.  And we are adding magnesium to the pill box.  I will also be monitoring my blood pressure though out the day.  She said it can go one way or another.  I'm just hoping its stress.  I mean, a girl can be hopeful right?!

So that's where we are today.  David suggested we add a dedicated nutritionist to the team.  I don't think anyone will have a problem with that.  I did see one during my evaluation 11 years ago.  But with so many conflicting restrictions and a brain that isn't working, trying to balance it all myself just isn't going to happen.  So, I will be spending the rest of the morning, in bed.  With a pile of healthy cookbooks trying to plan next weeks menu while I look up and make yet another appointment for yet another doctor.

It was so much information and my brain wasn't doing so great to begin with, but I think overall it was all steps in the right direction.  Its been a while since I felt this way about that so I am going to call it a winning but exhausting week.  I hope everyone is having a great week!

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