Wednesday, November 2, 2011

Long Overdue Health Update

I'll be more in-depth in a longer blog entry, but for now here is where I stand:

As I've been saying all this time, my kidneys are not cooperating. That has been confirmed. Against the Nephrologist at USA and the Neurologist at MDA, the Nephrologist at UMMC in Jackson very reluctantly started me on a risky potassium-sparing diuretic, amiloride, to try to force my body to retain potassium, thus raising my blood levels. The first two weeks were HORRIBLE...got worse instead of better. End-of-my-rope-ready-to-die worse. But thankfully my body began to adjust and I've seen a little bit of improvement with slightly higher potassium levels. I went from fluctuations of 3.4-3.9 to 3.9-4.4. I'm able to drive short distances most days and sit up a little longer than before. I still can't perform basic every day activities well, though, like washing my hair or the dishes. I'm about to get my hair chopped. Haven't figured out the dishes yet, since I have no choice but to cook at home most of the time. That's only two examples of "normal life" that someone in this condition has trouble with. The struggles are pretty much endless, as all physical activity revolves around neuromuscular function. Everything from moving the body to breathing...it all requires consistent flow and correct storage of electrolytes to be successful. With HypoKPP, the transportation and storage of potassium is inconsistent. Therefore, chaos ensues.

I saw the Nephrologist again yesterday at UMMC in Jackson, and while he admitted he's stumped about exactly what's happening to all of the potassium in my body, he didn't hesitate to double the amiloride to try to force my body to retain more of what I'm taking in. My levels need to be in the low 5's if at all possible. His goal is 4.8.

If my potassium level can get to a range of 4.8-5.4, I would not only have more physical ability again as I did in the mid-2000s, I would be able to see for sure whether or not these recent serious episodes have caused any permanent damage. That's something I need to know if possible.

The amiloride is still considered extremely risky to my heart, kidneys, and body in general, and now it has been doubled. For me, it is worth the risk and I hope this will be the ticket to quality of life again.

Current daily meds: Avapro 150mg, amiloride 10mg, K+ 90meq, Magnesium 550mg, Sublingual B-12

These meds total over $300 a month and I have no income, so I need a financial miracle as well as a physical one. I honestly don't know how this will happen, but I greatly appreciate your continued prayers.