VINDICATION!

I received my latest phosphorus lab results yesterday: 5.3!

No change in diet, no change in food -- just stopping the lotion and my moisturizer.

I hate to say it -- but I told them so!

Back on you nutritionists and nurses who ragged on me about my diet. I know 90% of the time, hyperphosphatemia is due to food; but there is always that 10%. There is a lesson learned here - TRUST YOUR PATIENTS and THINK OUT OF THE BOX. When your patient is getting pretty close to an eating disorder due to phosphorus-phobia and half of her meal is already phosphate-binders, it must be something else. I told you I've been watching my diet and only occasionally indulging in a tasty latte. 10 M&M's, I've found, only has 8 mg of phosphorus, so if I have 12 after a meal - Give me a ---- break!

Aveeno, I love your lotion and your moisturizer. I've been using it for months, and I love how soft my skin feels. However, its really not good for someone who is watching their phosphorus. I guess that soy and oatmeal really goes in your bloodstream. Once I get a transplant, I'll probably go back to using it.

Hallelujah!!! Now to tackle the water retention....

The (continuing) case of high phosphorus syndrome

My phosphorus is still high: 7.7 - in spite of increased binders, modified diet, and now only once a month chai-latte treats. Other than not eat, I am not sure what to do anymore -- I do not know why it is increasing instead of going the other way.

After last night's treatment, I spoke to the dialysis nurse about this. This is a sore subject between us (more on this in another post), but we had a really productive chat.   I've been writing down what I eat and there is very little difference between what I am eating now and what I was eating when my phosphorus is low. In fact, I am more restrictive - paying attention to protein portion sizes, increasing veggies, and limiting fluid control (I am also retaining more fluid).  After a "clean week" where I did not have dairy, took my binders, and watched my diet, my phosphorus should be down - not up -- so it must be something else.  We are both perplexed.

What she did say is that there may be hidden phosphorus in my vitamins, supplements, etc. What has changed: not vitamins, I am very careful of that. I did switch to a new blush and eyeshadow (Hey, you got to be trendy somehow).  Then it hit me: my lotion has oatmeal in it! My facial moisturizer is soy-based. I use it everyday! A cup of oatmeal has 178 mg of phosphorus in it. One cup of soybeans have 284 mg.  Could it be?

She said that the phosphorus could be absorbed by the skin and directly goes into my blood stream. If that is the case, I am thinking no amount of binder can counteract that.

For this week, I'm changing my favorite lotion and moisturizer to something hopefully more phosphorus-friendly. We'll see....

What the h&#! are these?

These were "growing" in my arm right after dialysis the other day. It looks rather freaky, and I am not sure what they are. After talking to the nurse, we think they are water blisters, and it's an allergic reaction to the tape.

Worse part of it -- It's summer! Bad enough to have scars on your arm and this too.

Sucks!

Shakin' and Bakin'

Apologies for not posting in a long while. As the Blues Brothers would say, I was "on a mission from God" -- just kidding.

 

It was sort of a mission. One of my goals late last year was to become a better wife and perhaps start doing my share of the housework (and get my butt off the computer for a change). Mind you, Martha Stewart, I am not - more like Peg Bundy. I did start doing my share in the kitchen and relearned how to bake. So since December, I've been baking away: cookies, muffins, scones. It was just in time for the holidays. I've been doing some cooking as well and applying what I learned from watching the Food Network during dialysis.

 

 

When I started dialysis, I felt that my life was put on hold. Getting back involved had given me a sense of rebirth -- a new purpose. Now I am finding little projects around the house. This year, DIY home-improvement projects... I do need a new bedroom vanity :)

 

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!