Bye bye Binders, Hello New Meds

Adios binders!

I boxed my phosphorus binders today. I am still not used to not taking them during each meal. I used to take 6 binders per meal, and these pills were huge. They are almost like a small side dish. These pills are so huge that I have choked on two or three occasions. Also, you have to take these with something liquid, so taking the binders almost used up my fluid quota for the day.

I am so glad I am not taking binders anymore.

That said, I have a new set of medications to get used to. The most important of these medications are the anti-rejection and anti-infection medications. The Anti-Rejection medicines are important for the new kidney to be accepted by the body. For the recipient’s body, the new kidney is a foreign substance, and without the anti-rejection meds, my body will fight the new kidney. By taking anti-rejection meds, the new kidney is accepted. The side effects include my immune system being lowered. Any bug that may be normal for a non-transplanted person could be disastrous for a transplant recipient.

Hola New Meds and My Big Fat Diary - ugh!

The Anti-Infection meds do exactly what it says: prevents infections. I take one for bacteria and one for virus. I am wondering if I should also take the anti-fungal since I love being outdoors.

The rest of them are Maintenance meds: Aspirin, vitamins, Pepsid, stool softeners (believe me – this is needed.), high blood pressure meds, and cholesterol lowering drugs (statins). Apparently, statins are important because a side effect of one of the anti-rejection meds is that it will increase your cholesterol. I, admittedly, am not a big fan of statins, as they have their own miserable side effects. Before the transplant, I was taking highly refined prescription fish oil to lower my cholesterol and triglycerides. I prefer that approach, but the doctors seem to be set on a low-dose of statins.

This does not include my “magic” pain pills. I primarily use generic extra-strength Acetaminophen (Tylenol), but when my pain level reaches to about 4 or 5 (out of 10), I go for the big guns.

UC Davis is very well organized. For example, they gave me big fat diary to keep track of my medications. Believe me, I need it. Based on my twice-a-week lab results, they are still changing the dosage on one of my anti-rejection medications and when they do, I have to be on top of it.

All in all, like any change, taking these new meds is an adjustment. I have been fortunate that I am not going through nausea or anything horrible. Also, although I seem to be taking more types of medications, I feel that the volume is less. With six binders and two fish oil pills per meal plus vitamins and blood pressure meds, my medicine container was almost overflowing. Now at least, it’s only about a third full, and rumor has it that my meds will decrease over time.

Woo hoo!

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....