Sunday, September 19, 2010

September Health Update: new doc, new bloodwork, same old pathetic American medical care system

(Disclaimer: The stuff in bold, I didn't actually say out loud to the doctor. I'm sure that's obvious. Thanks.)

Current meds as of 9/19: K-Citrate 1080mg x 3, Mag Ox 400mg x 2, Avapro 150mg, Valium 10mg at night, K-infused water

September 8th, I went to see a new internal med specialist at the clinic where my brother works. Let me start by saying that everyone was nice and I appreciate the fact that they are treating low income, uninsured patients. That is a blessing and I commend them.

Unfortunately, my appointment didn't go as it should have. I went prepared. I brought all of my prescriptions, my pH test strips, a stack of recent info about Periodic Paralysis...its symptoms, triggers, abortive attacks (which is what I'm experiencing), and a summary of my medical history from the past 12 years which very clearly explains what I've gone through while both on and off the meds, as well as general info like surgeries. Anything that I could think of whether it was relevant to my current condition or not, I typed out. I was ready.

HE...was not. He walked in seeing a number. Not someone intelligent, experienced and in extreme need of physical improvement.

I was very weak that day and walking slowly and painfully. He didn't seem concerned. I mentioned that my brother was planning to sit in during the appointment if that's ok. He looked at me blankly. "L", I said. He looked at me blankly. "L.B.?" I pointed in the direction of my brother's office. Nothing. "THE COMPUTER GUY?" "Oh..." the doc said. "Yeah, we call him the Geek Squad." He disregarded the fact that I just requested my brother's presence and asked why I was there today.

I told him that I was struggling with my systemic disease. I told him that it triggered at age 12 and I got progressively worse until I was diagnosed with Periodic Paralysis and Renal Tubular Acidosis in 1998 (thank you for not giving up, Dr. Holbert) after becoming completely crippled, unable to use my muscles. I told him that it has been a rocky road off and on since then and that I am currently back in a full relapse of renal acidosis as per the test strips that I brought in. I told him that I have passed over 30 kidney stones including at least one over the past year. I told him about everything that triggers my, any kind of exercise, certain foods, drugs, anesthesia, etc. I told him that I was in such poor shape in January after uterine surgery that I was nearly on a walker, and that my previous doctor agreed that my potassium needed to be increased (it was quintupled!) and that I needed to get back on Avapro (heart and kidney drug) ASAP. While I have obviously improved after this change, I have not improved enough to function well and it seems that my potassium level is still dropping. I told him that I appear to be in either a permanently weak state or an abortive attack of Periodic Paralysis.

His response after all of that? "You probably don't have that. That's usually a diagnosis of exclusion anyway."

*staring blankly at him, considering that he doesn't know me from Adam's housecat*

Me: I was OFFICIALLY diagnosed in 1998 after becoming paralyzed. I couldn't use my arms and legs. I was in the hospital for almost 2 weeks.

Him: Have you had a muscle biopsy?

I told him that I most likely have but I don't remember. I was diagnosed over 12 years ago and had nearly EVERY test under the sun...several a day for nearly 2 weeks. My records are all over the coast and I lost my copy of my diagnosis in Katrina.

Me: If you will tell me what the test involves, I can tell you whether or not I've had it.

Him: (ignoring my last statement) So how long have you been weak? A few days? A week?


Me: I just said that it started at AGE TWELVE and got PROGRESSIVELY WORSE until I was DIAGNOSED in 1998. My pH was 6.0 and my potassium was 3.0. My pH is now fluctuating between 5.0 and 6.5, which is why my potassium level is currently dropping. Just like most patients with Periodic Paralysis, my potassium level only has to flutctuate 1/10th of a point, even while within the normal range, to have an attack. I have documented info and my history with this condition typed out for you right here. *points to paperwork*

He acted amused and almost laughed when I tried to give him my medical time line (that explains my experiences in detail) and recently-released information on Periodic Paralysis. He didn't touch it.

He asked me if I drank, did drugs, or smoked. All no. "You've never smoked EVER?" "NEVER". He asked how much coffee I drink. "I don't drink coffee." He snickered. "How much tea do you drink every day?" "I don't drink it every day. I drink a couple of cups/glasses sometimes."

I brought up the Renal Acidosis again and told him that I have a history of pulling, spasming and tearing cartilage and muscle when I'm in acidosis, and that it is happening again, and somehow I have got to figure out how to get my pH back to normal or I am going to continue to decline with that as well as the Periodic Paralysis. I told him again that it is all right here in the documents that I brought for him.

He wouldn't take them...wouldn't read a thing. So I tried to read it to him. He talked over me. I eventually started talking over him to try to make him listen. Then he got offended and asked what I wanted from him.

Me: *BREATHE*.............REFILLS.

Him: Ok sure. *brings out the stethoscope* Let's do bloodwork too. Your heart is racing.


He acted aggravated that he was going to have to do bloodwork non-fasting. It was almost FOUR IN THE AFTERNOON. OF COURSE I'VE EATEN SOMETHING! I'm on medication that REQUIRES me to EAT!

Me: What about the low pH?

Him: I'm not concerned about your pH.


So he sent me to the lab for bloodwork. Had the bloodwork and they told me that they would call me Friday. I told them that I would call them instead, because nobody ever remembers to call me. They said "OH, you're L's'll get your call!"

I didn't, of course.

So I showed up on their doorstep a week later (still no call) and asked for my file and bloodwork results.

First of all, he had not even looked at the results when I arrived a week later to pick them up. I had to wait for them to find him so he could sign the results so they could give them to me. He signed them with no comments, and did not request a follow-up to discuss them.

So here I am...once again, doing this ALONE.

The blood test results:

My Magnesium is rock bottom. I suspected that and had already started taking over the counter Magnesium chloride. He refilled it in prescription form, but changed it to oxide which is the absolute weakest form of Magnesium on the market. Anybody who is familiar with or has been on Magnesium oxide knows that it does not absorb well at all. I'm planning to switch to Magnesium citrate, which absorbs much better and is certainly safer for my kidneys. Having channelopathy, my body barely utilizes electrolytes to begin with, so obviously the easiest-absorbed form of electrolyte therapy would be ideal, right? DUH.

I am officially...drum roll please...Hypoglycemic. Thank you, diabetic diet. I have been on said diet for a long time, not only to prevent type 2 stage 1 diabetes and control weight, but because the production of insulin (triggered by sugar) blocks my electrolyte channels, thus triggering Periodic Paralysis! But now, my blood sugar is plummeting and I'm being forced to eat sugar to keep from passing out. My blood sugar after eating at Subway prior to my doc appointment was only 71, which is way too low for me after having eaten a meal. I've been feeling faint off and on for a couple months now and almost passed out at church this morning. I had to get up and grab a packet of sugar from their coffee station and pour it down my throat. Falling out in church would have been grand, lemme tell ya. Would they have thought that I was slain in the spirit? The world will never know. :) So just when I thought I couldn't be more screwed with my diet (see my August Health Update for the diet scoop)...I now have this to contend with. I checked my blood sugar 2 hours after eating the packet of sugar. It was only 61 and I was still feeling faint so I had to down a couple of coca-colas to bring my sugar up. Now my legs are spazzing out and hurting like the devil. Don't eat sugar = unconsciousness. Eat sugar = HypoK attack. SCREWED.

My potassium has dropped from 4.8 to 4.2. I was right again and I'm surprised that I haven't been in the E.R. Ask any one of my friends who live with Periodic Paralysis. One HKPP friend was recently hospitalized with an episode after his K dropped from 4.8 to 4.6. That's ALL it takes sometimes. I have been in the E.R. more than once with a severe attack, and they kicked me out each time because my K was between 3.3 and 4.0, which made them think "Oh please, there's nothing wrong with you! Buh-bye!" Story of my life. It is not a TRUE lack of potassium in the bloodstream. It is a channelopathy, and it is extremely fragile and complex, but NOT impossible to understand. And don't forget the fact that my potassium continues to drop even though my potassium intake was QUINTUPLED several months ago. DING DING DING! The Renal Tubular Acidosis, when in full force (as it is now), triggers Hypokalemic Periodic Paralysis like a FIEND and must be brought under control pronto. But Dr. Know-It-All isn't concerned about my pH. FOR THE LOVE OF GOD, PEOPLE. Just READ about it. It's complicated but it's not rocket science. If I can understand it, why can't the docs?

BECAUSE THEY DON'T CARE ENOUGH TO, THAT'S WHY. I am 32 years old and more disabled than I should be because the majority of the doctors I've seen don't look at real people as individuals with real problems who need real solutions (or at least, quality of life). I am merely a statistic, slipping through the cracks for 20 years almost to the day...this began in September 1990. Most doctors only see numbers. Many only treat symptoms with drugs (unless of course they believe they're psychic and accuse you of being a druggie, in which you don't receive the drugs that you may very well need. Praise God that nobody has tried that one with me yet). Some docs even try to get rid of you as quickly as possible by verbally abusing you, slandering you to people who know you, refusing to listen to you, kicking you out of their office, and then sending you a bill so they can continue living the good life with their six figure income as a licensed drug dealer (YES I'M TALKING ABOUT YOU, DR. COULTER, DR. SETZLER, DR. WASHINGTON, AND DR. MYERS).

But you know what? Somehow it is going to be ok, because I know that ultimately it is all in God's hands. THEY are in God's hands and He will deal with them in due time. He will deal with me and my mistakes as well, and He has, and He will continue to. I pray that God will give me wisdom, strength, and purpose in the midst of this hell on earth. And He is. And He will continue to. Because God is faithful, even when I'm not. Even when I'm angry. Even when I feel alone. Even when I can't take it anymore. Even when I'm at my worst. God still cares. That doesn't take away my physical pain, my disability, my constant fight for dignity, medical care and quality of life, or my often-flawed human emotions over it all, but it does give me hope....because at least I know that I have a better destination ahead.

For the loved ones who are actually trying to understand this crap, I greatly appreciate it. For those who are skeptical or cynical, don't be shocked and awed and say "OMG WHAT HAPPENED? I DIDN'T KNOW!" when I kick the bucket someday. Just keep wallowing in your apathy and ignorance, because at that point I won't give a damn either. I'll be with the One who loves me. And I'll be free.


sarah bess said...

so sorry you're hurting, Kelli--in so many different ways.
Wish I knew what I could say that would help.
You're right--Jesus is really the only one who totally gets it and can really help & truly love us thru all of it. Praying for clarity, answers--a breakthrough, a healing.
Lots of love,

Julia Griffey said...

Dear Kelli -
I hope you don't interpret this as spam! I read your blog entry about your troubles with your doctor and not being able to keep your potassium levels up. We make a potassium product that a lot of patients with HKPP have used and found success with. If you are interested - we are more than happy to send you some free samples. Good luck with everything. Sounds like you have been through the ringer! You can request samples on our site: If you have a minute - take a look at the testimonials page - especially the one from Wade. He has HKPP and has become a big advocate of Effer-K.