Saturday, January 13, 2007

Saturday, January 13, 2007

This will cover the last couple day’s events and all. In this moment right now, I’m struggling to walk. My left leg and hip are very uncooperative and painful to move. Putting weight on it was not so much an option, as I found out when I got out of bed. CC just called from the van on her way home from work (around 11:15) and asked it I’ve checked my levels (K+) this morning yet, which I have not. I have to wait until I’ve had no food or drink for at least twenty minutes before I can test. I have about 10 more minutes now and then I’ll check. This pain is reminiscent of my hospital stay which is discouraging and hard to deal with. Though I take methadone and endocet (Percocet), the amount I take is quite minimal on a daily basis so I have nothing to handle the extraordinary pain versus the ordinary pain. Time to test for the potassium (K+). I just tried the test and it needs to be calibrated again, so no test for the time being until I stop everything and calibrate the unit again. The instructions state that the device must be calibrated once a month and it’s been a little over that now. A little more writing, then calibration.

On my mind; yesterday was a milestone. Not one I’m necessarily proud of or desiring of remembering, but since I’m writing, it’s worth noting; we went to Kaiser and picked up the DMV paperwork for a handicap placard and went to DMV and were given a permanent handicap placard. I guess when I had asked for it previously, I had expected a response something like “This is only temporary, Wade, you don’t need a placard and besides, you’ll feel better each day and shortly all of this will be behind you with no need for a placard.” The notation on the request form was for permanent use of a placard with chronic pain and muscle disease being the cause for the request. I guess that shows one of my dreams that won’t come true at this point. The other is more a nightmare than dream that hasn’t happened yet which is “the other shoe falling”, in other words, another attack of paralysis. Tonight is a dinner party at my aunt and uncle’s for my cousin’s birthday, but if I don’t feel better by then, I’ll not be going anywhere feeling like this. Pain tends to breed anger within me so it’s fairly consuming battle at this point.

I just finished calibrating the Cardy meter and my K+ is 4.2 which is within the “normal” range, but we have learned since having the meter that I experience pain under a K+ level of 4.8 and painful, paralytic symptoms if my potassium drops or is in the 3.9 or below range. Wow. Today is a really hard day. I’m on the couch with a couple cushions underneath my knees in an effort to take pressure off my back and torso in hopes that this will help.

A few hours have passed, it’s 7:00 PM and CC, the kids and her mom have gone over to my aunt’s place in Roseville since I really didn’t want to travel or visit like this. The house is pretty quiet, almost restful in a sense. Taking the time to just stay down is a very hard choice to make when there’s so much activity going on around me and especially when I feel like I’m not contributing. Yeah, of course I get that I can hardly walk on the one hand, but that doesn’t carry much weight when I’m not helping. It seems just that basic to me.

On the ongoing medical front, yesterday morning I received an email from my neurologist regarding further testing in regards to HKPP and his email was startling; he intends to pursue no more HKPP tests and is expecting me to follow up all future efforts with my nephrologist. Essentially, he’s bailing out of my care, completely. Why? CC and I think because his diagnosis was questioned by the neurologist in Walnut Creek and he’s out of his area of specialty. Had the second opinion doctor agreed with him, I believe he would have moved forward in some manner with my care, but since his diagnosis was questioned, I think he’d rather give up and focus on patients that he has familiarity with and confidence in treating. This is a pretty solid indication that Kaiser has no clue about HKPP, its characteristics or its treatment. I’m not ungrateful for their care of me, by any means. I’m alive right now, typing this blog because on that Wednesday in November they saved my life, simple as that. I’m frustrated that we have yet to receive consistent and knowledgeable care regarding my original diagnosis of HKPP. My primary doctor, though no more knowledgeable on HKPP than ANYONE else in Kaiser, has been more than cooperative and helpful in meeting my daily and normal care. Also worth noting is that he agreed to research and begin to learn about HKPP on my request, which I truly respect and appreciate. It will likely be through him that any further progress is made, at least medically.
Just after receiving the email from the neurologist, I began a more intentional comparison between HKPP and Hyper Aldosteronism (also known as Primary Aldosteronism) and though there are definite similarities and common symptoms, PA does not answer the questions as to why I hurt as much as I do and why I’ve had the experiences I’ve had. CC figured out that PA is one of the underlying causes of HKPP, so it should not simply be an “either or’ type of scenario with this.
More to be learned, I guess.
Here's the comparison I assembled:

Hyperaldosteronism/Primary Aldosteronism:
What:
Primary aldosteronism is a condition which your body's adrenal glands produce too much of the hormone aldosterone, causing you to retain sodium and lose potassium.
Sodium and potassium normally work together to help maintain the right balance of fluids in your body, transmit nerve impulses, and contract and relax your muscles. But excess aldosterone causes sodium retention, which in turn retains excess water, increasing your blood volume and blood pressure.
Doctors once considered primary aldosteronism rare. However, as screening for primary aldosteronism becomes more common, evidence is emerging that it may be responsible for as many as one in eight cases of high blood pressure.
Primary aldosteronism is more common in people with severe, uncontrolled high blood pressure. Treatment for primary aldosteronism depends on the underlying cause. Treatment options include medications, lifestyle modifications and surgery.

Symptoms:
High blood pressure that doesn't respond completely to medication is the most common sign of primary aldosteronism. Other common signs include low potassium levels (hypokalemia) and the presence of a non-cancerous (benign) tumor on one or both of the adrenal glands.
Symptoms of this condition may include:
- Headache
- Muscle weakness and cramps
- Fatigue
- Temporary paralysis
- Numbness
- Pricking, tingling sensation
- Excessive thirst
- Excessive urination

Causes:
Your adrenal glands are about half the size of your thumb, and they dictate much of what happens in your body.
They produce hormones that help regulate your metabolism, immune system, blood pressure and other essential functions.
One such hormone is aldosterone, which manages your body's balance of sodium and potassium. In primary aldosteronism, your body produces too much of this hormone, causing you to retain sodium and lose potassium.
The most common known cause of primary aldosteronism is a benign growth (aldosteronoma) in an adrenal gland — a condition also known as Conn's syndrome.
Other causes include:
- Over-activity of both adrenal glands (bilateral adrenal hyperplasia)
- Rarely, cancerous (malignant) growths in the outer layer (cortex) of the adrenal gland
- Rarely, genetic mutations
A rare type of primary aldosteronism called glucocorticoid-remediable aldosteronism (GRA) runs in families. This condition may cause high blood pressure in children and young adults. Genetic testing can identify people at risk.

Hypokalemic Periodic Paralysis
(HKPP)
What:
Hypokalemic Periodic Paralysis is a rare inherited muscle disorder that causes episodes of paralysis or weakness.
During episodes of muscle weakness, potassium flows from the bloodstream into muscle cells, affecting the ability of the cell to contract properly. Potassium levels usually fall during attacks but are normal between attacks.

Symptoms:
Patients may:
· Become totally unable to move
· Appear unconscious
· Unable to speak or open their eyes
· Typically begin showing symptoms in the first or second decade of life
· Experience progressive attacks in frequency and degrees
· Experience episodes lasting anywhere from an hour to days
· Experience attacks that vary in intensity from episode to episode, with mild localized weakness in a hand, foot, jaw or limbs one time and generalized paralysis the next.
· Experience extreme muscle tenderness and aching or be entirely painless
· Experience “Abortive Attacks” which are characterized by fluctuating daily weakness which lasts for extended periods. These have been mistaken for permanent weakness (This type of weakness becomes more common in patients as they enter their 40s and in some patients abortive episodes may replace paralytic episodes. Patients often find abortive attacks are more disabling than brief episodes of paralysis.)
Causes:
Periodic paralyses are caused by abnormalities in the ion channels (especially the sodium and calcium channels) of the muscle membrane. The ion channels control the movement of sodium, chloride, potassium and calcium across the cell membrane and from one cell compartment to another. This movement of ions produces the electrical 'spark' which allows our muscles to move. Hypokalemic Periodic Paralysis is caused by a flaw in an ion channel in the muscle membrane. This flaw makes the person with HypoKPP extremely sensitive to decreases in serum potassium that wouldn't bother the average person. Anyone can be made weak by a drastic lowering of serum potassium, but the person with HypoKPP gets weak with even a slight fall in potassium level, and patients with HypoKPP may become profoundly paralyzed while their potassium levels remain within normal limits.
~~~~~

On yet another front, I’ve been continuing to write some lyrics and am now up to 11 sets of lyrics. I’ve only matched one of them to a song that I put together which is probably par for my course; I’ve never been one to prefer to write and arrange alone. I like to collaborate and create with a partner. That’s much more fun and even exciting at times, to see what someone else is thinking and interpreting differently than me and yet still going for the same goal, topically or emotionally. I’m looking forward to writing more.

My truck has been “down” for several weeks now with what we (my dad, me and some of his colleagues) have surmised to be a dead alternator. I replaced it a couple days ago when the money was available and it worked fine for a day then it stopped working. I went under the hood and found that the alternator had slipped from its position due to some of the washers on the bolt slipping. I need to reposition it before I drive again; maybe tomorrow if I can walk and move better and more painlessly.

The kids have begun to play with PowerPoint on the computers and watching their unbridled creativity is inspiring and fun for us. They haven’t gotten very far in their presentations but are now asking to work on them as often as they ask to play computer games and watch TV. Pretty cool in my opinion.

Yesterday was ANOTHER milestone in CC’s life; she and I went and picked up her first pair of glasses since her early childhood. To say she’s not so excited is an understatement…she’s not very happy that she needs glasses now, but she does accept that her recent headaches and eye pain have been because of her eyes needing the help of glasses and not having them. I think the ones she bought look really attractive on her. It’s going to take some time for her to acclimate to wearing them, so your prayers on that will be appreciated.

Before all the pain began manifesting itself in the past couple days, I managed to strike all the outside Christmas décor form the house so all we have to do now is finish the clean out from the inside and get the boxes back up in the garage loft.

There’s some more to write, but I’m tired and have had enough for one day.
For those who pray, please be praying for a restful night’s sleep and a painless day tomorrow.

G’night.