Friday, May 27, 2011

Appointments and frustration

My pH is 6.75 today which tells me that my body is retaining potassium again. The test strips have always seemed to be accurate, so I hope they are this time also. Too bad nobody listened to me when I warned them that I was in acidosis a year and a half ago. It takes a serious event that could have killed me to wake people up, and only a few have even acknowledged it.

I've finally been given an appointment with University of Mississippi Nephrology. July 21st...over seven weeks away. I've made an appointment with my local GP to address my last two serious attacks and the symptoms that I'm dealing with as a result. I expect her to refer me to a local Nephrologist, and possibly a Cardiologist. We'll see. The appointment is Wednesday.

I'm weary.

Tuesday, May 24, 2011

Tuesday Periodic Paralysis Update

I have yet to recover from my last attack. My entire body head to toe is too heavy to function, and my chest and esophagus still feel like they are caving in. As usual, my heart rate was flipping all over the place during the initial episode of paralysis, but ever since it has been consistently too low. Last night, it dropped to the 50's and stayed there. My "normal" has always been in the 90's.

So early this morning and throughout the day, I have checked my pH and found that urine is 7.0 and saliva is (as usual) in the 5's and 6's. The bad news is that my saliva pH is still too low, as normal saliva pH should also be 7.0. The urine pH of 7.0 is good news because it dropped from 7.5 (confirmed by labs), which indicates that my kidneys are wasting a little less potassium than they were. My low heart rate (55-62) in addition to the change in urine pH told me that I needed to back off the potassium a little, so I have. My physical condition has not changed whatsoever...severe heaviness head to toe, including head, chest, and esophagus. Not walking. Not able to perform basic tasks. What has changed is my heart rate. It has gone from consistently low to normal again (76-95) with occasional too-high-too-low flipping (111-59) like it was doing before. Both the consistently low heart rate as well as the flipping (arrhythmia) are dangerous and have the same end result (heart attack) if not brought under control, so I am not winning that battle right now. I can't help but wonder if I had a mild heart event during my last attack, and will bring it up to the doc when I finally get an appointment. I would jump at the chance at an echocardiogram right now. I think it is greatly needed, but I don't believe I'll ever get one due to inability to pay.

The worst news is that I am absolutely not recovering thus far. Never before have I been in such unstable condition, and my body has felt drastically different since the last two HypoK attacks. The ER is full of good-for-nothing fools and both times I became worse in the long run instead of better. So returning to the ER is senseless and out of the question. I appear to be at a stand-still regardless of my potassium levels, and I don't know what to say about that right now. Nor do I know what to do.

My mom says "God's will be done". I pray that I don't die young because I'm poor. There is so much that I wanted to accomplish in life. Am I really done here?

Saturday, May 21, 2011

A reminder from me to me

This has honestly been one of the hardest weeks of my life. My condition has plummeted to depths that I feared. I prayed it would never happen. But it has. Being abused while completely paralyzed in the ER a week ago was a traumatic experience, as if being completely paralyzed, helpless, and at the mercy of strangers wasn't bad enough. I've gone through a flood of emotions, from rage to despair to just plain numb.

It happened again last night, and I chose to stay home and ride it out. I sent a message to my aunt as I felt the attack coming on. She came over and fed me potassium at my bedside. I binged on potassium...somewhere in the neighborhood of 215 MEQ in a 12 hour period, to try to ward off the paralysis. My heart rate was low and my breathing and swallowing labored throughout the night, but I decided that I would rather die than go to the ER again. And I meant it.

I've been drinking potassium all day today, and I am still partially paralyzed. I am on a walker when I get out of bed, but I've only been able to get up and walk once today. It took everything I had to make it through the house to the kitchen and back, and I had to take potassium pills in addition to the liquid to try to ward off another full-blown attack. As I sit here and type, I can still barely move my face, and it still hurts to breathe.

My condition has spiraled out of control to the point of helplessness. I sit here, lay here, merely exist here...and wait. Wait in a state of physical and emotional numbness.

So my recent news interview airing this week was good timing.

It's surreal to sit here and watch myself on television. To hear the optimism in my own voice. To be reminded, by me, that hope is everything, and that I still have it.

There is no doubt in my mind that finding the Hypokalemic Periodic Paralysis Network on Facebook has saved my life. I have learned more about my condition in 2 years than I learned in the 20 years that I suffered prior. Understanding how this disease works and the things that I can do to manage it has been absolutely vital to my survival since my quick progression. The trigger that I am currently living with, acidosis, is out of my control, but the countless other triggers that could be present...that HAVE been present in the past...are under control because I now know what they are and what to do about them. This information, thanks to Facebook, has changed my life. I needed the reminder. Desperately.

God knows I need His strength to carry on. And this week, it was in the form of a perfectly timed word of encouragement...from me, to me. "I have hope again, you know"...even when it seems like hope is gone.

Friday, May 20, 2011

On the news...



The interview was done in April and aired tonight across the Mississippi coast. I was running on no sleep in a major brain fog. My description of HKPP was a little off and I wish I would have tried to explain it in a different way. Hindsight is 20/20 though, and the important thing is that the word is out. Immediately after my segment, I heard from someone who lives only an hour and a half north of me who has a similar condition! Amazing. Many thanks to WLOX for allowing me to talk about Periodic Paralysis.

Thursday, May 19, 2011

Thursday Periodic Paralysis Update

My body is making a slow attempt to recover from this past weekend's episode, just as it was making the attempt after last month's episode. My life revolves around potassium. I take a dose, then count the minutes until I can take another one. I am moving better than I was, but still in bed most of the time and on a walker otherwise. My severe weakness is generalized (overall body) as the last two episodes of paralysis were.

As if I needed anything else to complete my week, I have a kidney stone en route in my lower left side. At least it's moving this time. I haven't brought out the pain meds yet, and don't plan to unless it becomes utterly intolerable.

Speaking of meds, the current ones: Effer-K 25 MEQ x 4, Mag Ox 400 x 2, Claritin once a day, Avapro 150 once a day. As always, the Valium and Demerol are PRN for kidney stones, migraines, and pulled muscles/cartilage. I almost never take them. The meds will expire before I take them all.

I hate pills. I swear to God I hate them so much. I'd do anything to avoid taking medication. I'd do anything to have a body that worked properly. I'd do anything to have quality of life.

Sometimes, all of the effort seems to be in vain.

I pray for a method to this madness.

Wednesday, May 18, 2011

Home from University Hospital

My MDA appointment went about as well as it could have, I guess. The doctor is very knowledgeable and kind. He plans to treat my Hypokalemic Periodic Paralysis including genetic testing but is sending me to a Nephrologist first to try to bring me out of acidosis. He said as long as that trigger is out of control, I won't be able to manage the HKPP at all (which is what I've been telling local docs to begin with, and they didn't listen...IMAGINE THAT).

So I'm back home, playing the waiting game, trying to figure out what in the world I'm going to do until I am approved (financially) and given an appointment to go back to the hospital for further treatment. Finding transportation back and forth to this hospital (over 8 hour round trip) will be a task also.

I don't know...I'm just glad the MDA Clinic is on board to an extent. It's one step in the right direction and I'm thankful.

Sunday, May 15, 2011

Infirmary West Mobile

I went into a full Hypokalemic paralytic episode yesterday. Upon arrival all the way through today, I was mocked and mistreated by the nursing staff at Infirmary West. I am contacting an attorney next week, and I will be spreading the word about this hospital and their ignorant, apathetic, abusive, sorry excuse for a nursing staff.

I am home and back to square one, unable to walk despite my potassium level being raised to high-normal. Damage may be permanent.

This has been the worst weekend of my life.



P.S. - I've recently edited this and other entries only because I have since introduced my students to the blog, and while my feelings have not changed toward this hospital's ER staff, I will be keeping the "brutal" side of my honesty on my private blog from now own. Thanks for understanding.

Tuesday, May 10, 2011

Still here...quick update.

It's been over a month now. No big changes over the past week. Having good hours and bad hours.

Good = using two canes to get to the other side of the house.

Bad = feeling like I'm going to die.

Doc appointment with the MDA clinic in Jackson is on as long as my cousin doesn't go into early labor. My aunt and uncle will be in Kansas if she does, but her doc says she's on schedule for the end of the month. (YAY BABIES!)

Still waiting to hear about my TV interview. It's supposed to air sometime this month. I really hope it helps to get the word out about Hypokalemic Periodic Paralysis. I will post the video and transcript here when I get it. The Facebook groups are buzzing and we're all learning more from each other every day.

I'm getting as much paperwork together as I can for the new doc. Who knows if he'll even look at it, but I will have it ready for him anyway. I am not taking no for an answer...something's gotta give. I have $200 in the bank and I can't walk, drive, work...I'm in serious desperation mode.

Prayers appreciated that I get the help that I greatly need.

Saturday, May 7, 2011

HKPP Update: Pulse Ox & Thoughts

Feeling very badly this morning...labored breathing, painful tingling, and it seems like I'm declining again. Took a KCl 20 at 6:20am, and another at 9:30.

I put on the pulse ox and the first reading was heart rate of 125 and oxygen of 82. I knew that couldn't be right, and thankfully my heart rate fell to normal shortly after. However, my oxygen was 84 for several seconds, eventually rising to 89, where it stayed for a few minutes.



After a few minutes, it gradually rose into the 90's and ended up here...I suppose compensating for a little bit of lost time.



I also took a 2 minute video of the pulse ox so my friends at the Periodic Paralysis Network can tell me what they think about the bar that's raising up and down. Supposedly you can tell whether or not you're having arrhythmia from the fluctuation and speed of the bar, but I'm inexperienced and could use their input. I'm going to upload and send it to a friend shortly.

My heart rate was fluctuating a lot yesterday...69 to 110...and it was a terrible day. I felt awful and was almost on the walker again.

Basically, the pulse ox is doing what it was doing the night before I went to the ER. I was in nearly full paralysis, and I feel like I'm slipping towards that direction again. I have no idea why other than triggers (temperature, not sleeping, pain, muscle activity of any kind...this includes lifting anything, standing and sitting up unassisted) combined with not enough potassium. While I believe that I'm going to have to eventually increase the amount I'm taking (again), I am being careful to spread out the potassium to four to five doses a day in spite of the fact that my levels didn't raise one-tenth of a point after more than doubling my intake almost four weeks ago. I'm not sleeping at all, though. I'm horribly weak and exhausted, but the pain is keeping me from sleeping. If I had to guess what an electrical short circuit feels like, I'd say this.

I will also say that I'm a little surprised that the more potassium I take in, the more stable my heart rate is at times. There have been many moments when my HR was between 95 and 115, and my heart rate would fall back to the perfect 80's after taking potassium. I wasn't really expecting that.

I don't know what else to do. I'm trying my hardest to beat this.

Just keeping a record. I'll be printing it out for the MDA doc.

Friday, May 6, 2011

College, Summer, & Beyond

The Spring semester has finally come to a close. It seemed long, but it always has. I'll spare you the drama and simply say that although I had to withdraw from two science classes, I was able to keep my two psychology classes and I aced them with a 100 and a 97, keeping my GPA in tact.

I'm still down for the count...going on a month now...so I'm out of school until further notice.

I emailed my Graphics instructor and told her that I would not be able to join her program (it's all day campus classes) unless I fully recover. If and when I do, it will be 2013 at the earliest now unless I can manage a full time schedule at MGCCC in 2012. That is unlikely but certainly not impossible if I can get my body under control as it was in 2005. I'm trying to remain hopeful that I will somehow still complete my planned degrees within the next few years.

As of right now, I just dropped my summer semester...it's coming up soon and I can already see that it's not going to happen. I'll graduate later than I wanted to, but I hope I'll be able to return at least part time in the fall. I pray this summer will be a time of recovery. It has to be.

I miss my art. I miss my art classes. I miss teaching and I miss my students.

MDA appointment is coming up, and I still don't have a confirmed ride to Jackson. Prayers appreciated that I make it up there, and that the doc will properly treat me.

Talk to you soon.

Wednesday, May 4, 2011

Now in my possession


25MEQ (977mg) fast-acting effervescent potassium...the happy medium between the standard potassium pills (which are slow) and a potassium IV (which requires hospitalization).

I've been in bed almost a month, and struggling for years. I'm sick of having little to no quality of life. I'm not settling for anything but improvement.

Game on!