Wednesday, October 21, 2015

Renal and Internal Medicine Clinics (Part 2)




I don't think people understand just how much any kind of physical activity can knock an HKPP patient flat. What's remarkable is at times it is a delayed reaction, so I can get through a day of heavy activity such as traveling to Jackson for renal clinic (an 8 hour round trip), but my worst moments are the following days. If you're familiar with HKPP, you know this trigger is called "rest after exercise", and it's a doozy. It also never helps when it's insanely hot outside and insanely cold inside, which was the case here. Fluctuations in temperature can result in serious paralytic episodes. I know because I've had them. This condition is painful, frustrating, and complicated, and I don't always cope well, but I try. I am very lucky to have some wonderful friends on Facebook and elsewhere who follow my journey and keep me encouraged with their love, prayers, and well wishes. I'm so grateful to them all.

Next renal clinic is in March, if I can find the funds somehow. The hospital has informed me that I am not eligible for financial aid now that I live where I do (recently moved), so I might be in trouble. If I absolutely cannot handle the cost, I will discuss my options with Dr. M. I hope something will work out so I can continue to go to Jackson.

I'm still having a hard time keeping my potassium level in an acceptable range. When a trigger occurs, and it does so often, it isn't always easy to bounce back to my version of "normal". The rest of my numbers look pretty good right now with the exception of Creatinine, which is slightly elevated again, and Vitamin D, which is still too low in spite of being on a whopping 100,000 IU a week. For the love of God, what is it going to take? Dr. B is increasing my dosage to 150,000 IU a week, which is rare and risky, but I've got to get those numbers up somehow. We'll see what happens.

The great news is that I don't have Hashimoto's Thyroiditis. I know several people with HKPP who have it, and it would have explained some of my symptoms, including the low D, but my numbers were normal. Renal clinic in Jackson may have very well done these same tests, but I don't recall, so I wanted to make sure to rule it out. I'm glad I don't have to think about it anymore.

I have a Keveyis update. It will be posted in the next couple of days.

Tuesday, October 13, 2015

Internal Medicine 10/13/15 (part 1)

I went to see Dr. B this afternoon to follow up from the drama that ensued back in June.



I've lost some weight. More to go, but I was surprised and relieved that I had not gained.

My potassium remains on the low-normal side, in spite of my heavy supplementation. It could be worse, but I really do need it to improve somehow.

My creatinine was high once again. It keeps fluctuating between normal and high. We have no idea why this is happening, but it seems to be the nature of my kidneys. Seventeen years ago, I was crippled in the hospital, and the doctor told me that my kidneys are frustrated. In fact, he documented it as whatever "kidney frustration" is in German. What it boils down to is that my kidneys are working harder than average to try to be normal, and they get exhausted sometimes (as does the rest of me). My electrolytes and other substances, such as hormones and blood sugar, also fluctuate quite a bit. I've come to the conclusion that it's all related to the fact that I have a channelopathy, but I'm no medical expert (just an expert patient).

I feel like I'm getting a sinus infection, but I am unable to safely take antibiotics or antihistamines, so I was given samples of Deconex DMX in hopes to keep the issue at bay. I'm pretty miserable at the moment. Wish me luck.

My Vitamin D, which stays consistently low, was checked. The results should be in tomorrow. We talked about the fact that I have a history of pulled and torn cartilage and skeletal muscle, which points to Osteomalacia (adult Rickets, caused by chronically low Vitamin D). I'm on a very, very high amount of prescription D, but he said he'll raise it even more if we have to. My body clearly has some sort of problem with absorption.

We talked about my digestive system, which has always been pretty lousy. I have a hernia, severe acid reflux disease, and Gastroparesis. All of the above are painful and problematic. I'm going to increase my over the counter magnesium intake to see if that makes a difference. Surgery is out of the question thanks to my high risk of death under anesthesia.

Doc and I agreed to a complete thyroid panel, which will look for peroxidase and thyroglobulin antibodies. This test will rule out Hashimoto's and other thyroid conditions once and for all. I'll have results in two days.

Thus the reason why this is part one of two. I'll update with the results later this week.

No progress on obtaining Keveyis. I've left a voice mail for the nurse to follow up.