Hyperphosphatemia

My monthly lab results are in, and inspite of my efforts to bring my phosphorus down, mine is still a gigantic 8.1. This is way up from my normal range (from 3 to 5.5).

I have had some issues with phosphorus in the past.  This was primarily due to a vacation in Hawai'i (snacking on macadamia nuts would do that) and frequent visits to 'Bux for a chai latte (due to very low blood pressure).

That said, recently there is nothing in my diet that would cause this. The dietician in my clinic agrees.  I keep a regular food diary, and when we reviewed it, there is nothing in there that would cause a high phosphorus.

I am very concerned because high phosphorus can cause bone and heart problems that lead to hospital stays and in some cases death (More on phosphorus in this article).  Also, last time this happened, my hair started falling out. Not good.

The dietician is recommending a new binder to use with my existing meds. Although I am hesitant to take in more drugs, I would do anything to lower my phosphorus. In spite of my kidney disease, I am still fairly active and would like to continue to do so. Keeping my phosphorus in check is key to that.

One foot in front of the other

After my dismal performance at the 5K, I decided to start walking outside again. I finished at about 55 minutes. Next time, I want to shave about 10 minutes, but I think that may be too ambitious. I remember the days when I can just run the Bay to Breakers without training; those days are long gone.

My first walk was today, and it was a short one: about half my old route. How I enjoyed the fresh air and the sunshine. Hopefully, I can do this every week.

No Net New?

"No net new" is something that I heard at work lately. It means no new features or enhancements. It somewhat describes my health status lately - same old, same old.

I guess that is a good thing: stability. Or is it really stable?

Let's see: I walked a 5K two weeks ago, was worn out the day after that, but survived. I have not been going to my hula classes, but I am soon starting one of my own. My phosphorus is still astronomical, but slowly going down. Blood pressure is under control. Dialysis is still 3x per week, but thanks to Big Bang Theory, my favorite boredom buster, my sessions has been more tolerable! I am even looking forward to it.

Hmm... maybe there have been some changes, and there is no such thing as no net new (which may be bad news at work). My health seems to be stable and maybe even somewhat improving. I want to have a more normal schedule, but I will take what I can. Life may be "same old, same old", but hey, it is still good!

I'll take that with a side of binders, please...

Now that my blood pressure is in check, and I have renewed energy on doing activities on my non-dialysis days (Sore subject - another story for another day), I need to figure out why my phosphorus is sky-high.

I came back from a two-week long break from Hawaii, relaxed and tanned with a phosphorus count of 8.1! What?!? The top of the normal range is 5.5, and I was way over. I did not really notice anything different... until my beautiful long hair started falling off. Chunks of beautiful long black hair are falling for no apparent reason. Rapunzel I was no longer. How will a hula dancer with short hair look?

We figured that it was primarily due to the macadamia nuts that I was having when I was there. That was my "go to" snack, but my phosphorus is still high even after the trip. Not sure what I am eating that is causing it -- it maybe my homemade trail mix (which i stopped), maybe the rice milk? Really?

So now, almost every time I eat, I take it with a side of binders: Two to three gigantic pills of Renvela depending on the meal. Ugh, I hate it! I feel like I am taking pills all the time. I don't like how it tastes too. It has a somewhat salty taste. Exception is when I eat fruit. No need for binders. I guess it encourages me to eat more fruit.

Hallelujah!

I think we finally found the right (drug) cocktail for me. This after two visits to the ER, cardiac stress tests, and four days in the hospital.

BP is finally around 120/80, and best of all, my energy level is up.

Now, if we can solve the mystery of the falling hair...

Search for Holy Grail (or why is my blood pressure so high)

My blood pressure has been extremely extraordinarily high lately (220+/100). A lot of people have been surprised that I am still walking around with a BP like that.

It all started when we stopped the Amlodipine. Unknowingly, that drug has been causing some significant fluid retention. And I thought I was just getting fat. Back in November, when we doubled the dosage (because my BP was 170/90 then - still high), my ankles started swelling up. Worse case, my BP did not drop; I think it went higher.

It has been a quest for new blood pressure medications since then. Most of these drugs have names that sound like they were crafted from the mountains of Mordor: Doxysasin, Teraxosin, etc. I am hoping that Gandalf will come and fix my BP for me. I am already soooo pissed off that my BP is sky-high (and that absolutely does not help).

I hope my nephrologist fixes the situation soon. He is going to have me do an electrocardiogram to see what other meds I can handle. I am already on three BP-regulating drugs (four, if you count my dizzy pill).

The most frustrating thing about this ordeal is now I cannot even enjoy my activities. Walking from the parking lot to my desk is tough. I get tired easily and dizzy doing aikido. We have not even gone skiing since the end of January.

The good thing about this ordeal (if there is a bright side) is I have lost the fluid weight. For the first time, in a long time, I am below 160 lbs! Yey!

Now, let's just try to prevent a stroke.

Borrowed Time

I am feeling like I am on borrowed time lately. My ankles are almost the size of grapefruits, I am getting severely out of breath while walking to and from the parking lot, my energy boost from November is gone, my blood pressure is sky-high, and worse of all -- I have been advised that I may need to go three times a week in dialysis.

Maybe I am just tired, frustrated, sick, or a combination of all three, but there seems to be a lot of guessing and trial-and-error. I feel the doctors really do not know what is going on, and they do not communicate with each other. Why is it up to me to figure out what is wrong? If I knew I needed to do that, I would have become a doctor myself.