I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Thursday, February 16, 2012

HKPP Update: Bringing Out The Big Guns

I don't even know where to begin with a health update, but I'll try to give a summary of the last few months and hope it makes sense.

The 10mg of amiloride I was prescribed on November 1st gave me a few good days, and a lot of bad ones. All in all, it simply hasn't done its job in raising my potassium level. I've had a lot of rough moments, including nearly ending up in full paralysis again. So, I knew something had to change ASAP.

Dr F (Nephrologist/Internist in Jackson) is pretty passionate about finding something that works at this point. He had more time to spend than usual, so we discussed a lot of options. He kept saying this was "so unfair" to me and we need to find a combination of meds that will raise my potassium to a level where I can function again. He has the most endearing bedside manner of any doctor I've ever met, and is trying hard to figure this out. Anyone who knows what I've been through with doctors over the years knows how much I do not take this for granted. I'm so grateful that he listens, cares, tries, and hasn't given up on me. I pray he never does.

We negotiated on a new, aggressive regimen. I will stay on one amiloride a day, 5mg, and switch from potassium citrate back to chloride...100mEq a day. I will also stay on Avapro 150mg once a day, add a CoQ10 supplement, and start taking a new potassium-sparing diuretic called Inspra. It has done miracles for a few HKPP patients, and Dr. F wants me to take it as well as the amiloride in an attempt to force my body to retain the potassium I'm taking in.

It's safe to say we've officially brought out the big guns. Very risky, but it just might work. I'm hopeful.

I requested medication assistance through the local clinic today, because Inspra is nearly $300 alone. Med assistance is my only hope of following through with treatment. My meds total over $450 a month now, and I have zero income. Impossible, needless to say. I'm trying not to worry, but it's hard not knowing how this is going to happen. Not just now, but in the long run. This is a lifelong ordeal, but I keep reminding myself that all I can do is take one day at a time.

In summary: Potassium level still fluctuating between 3.4 and 4.2. I need to be in the 5's to properly function. Dr. F is on board with this goal.

Meds: Avapro 150mg, CoQ10 30mg, amiloride 5mg, KCl 100mEq spread throughout the day, magnesium citrate 225mg x 2, Inspra 25mg x 2, B-12 and Fish Oil when I remember, Fast-K on stand-by for acute episodes of paralysis (God forbid).

Diet: Low carb/sugar, low sodium, low gluten, high protein.

Zero exercise...my body is completely intolerant right now. On my best days, I can drive to the store and shop with assistance of a power chair. I can walk short distances on crutches but that always results in further weakness.

In other somewhat related news, I have been having significant trouble breathing and swallowing, to the point that it gets scary at times. I almost lost my voice again recently (in fact, I do lose it if I strain it too much). Dr. F asked me a series of questions, and became very concerned by my answers. He wants me to talk to a sleep specialist about testing for apnea. Without insurance, this probably isn't going to take place, but my eval is in March. My next MDA appointment is in March as well. Happy birthday to me, I guess.

The battle rages on.