Friday, August 31, 2012 - topic - high phosphorus issues

Hi all,  I hope all is well with you guys.  First, before I get into the topic at hand, I need to continue on my mission to spread the word about the continued awareness of Chronic Kidney Disease (CKD), which is very seriously on the rise in this country and all over the world for that matter.  People listen! take notice! get a clue! The awareness of CKD, truly needs to grow, and people should very seriously consider being tested for possible early stage CKD, especially those with a history or family history of diabetes and/or high blood pressure (two of the main causes of CKD), and if diagnosed with early stage CKD is the diagnosed, the good thing is that preventive measures can be taken to help in prolonging or even in some cases, can reverse the progression of CKD, isn't that awesome news.  We at the San Francisco Chapter of the PKD Foundation, vigorously continue to spread the awareness of CKD, and urge people to get tested for early stage CKD, and we also encourage organ donation as well.  I have been watching the weather channel, checking the tracking of ISAAC, I was born in New Orleans, and raised in Houma, and I am concerned about my family back home, and hope that they will get through this years hurricane season with minimum drama, because they have suffered and been through enough with the devastation of Katrina, about seven years ago.  Though this storm has made its presence, life goes on, and on with the pressing topic for today - High phosphorus issues, in which many renal/dialysis pts. have issues with.  Let me share with you my saga of coping with high phosphorus issues with my renal diet.  When I first diagnosed with ESRD in 1990, I didn't have issues during the beginning days of hemodialysis, however, within a month I began to experience symptoms of having elevated phosphorus levels in my body.  First, I notice I was beginning to scratch, like a crazy fool, like I had lost my mind, it truly got the best of me, and I didn't for the life of me, knew why I was experiencing this, and keep in mind, I was trying to adjust to hemo and also learning to manage that renal diet (in which I soon discovered that was quite a complex diet to follow).  I became concern, when I thought I was doing everything that was necessary to help keep my phosphorus levels in normal range, as best as I could.  I mean, taking my binders as prescribed, wasn't doing its job, because my monthly report would come back with a phosphorus of the high 5.0 to 6.0.  I spoke to my dietitian about my phosphorus, and she ask me to keep a record of what I ate for a week, and then she could determine if I need to modify my renal diet, where the phosphorus is concerned.  Finally, a week passed, and I gave her the record of my weekly menu, and then she noticed, that I was eating too much cheese, I didn't have any issues with cola or chocolate, because I completely gave both of those favorites up in the beginning of hemo.  She then gives me a chart that listed a low, moderate to high phosphorus foods, and then she ask me how many binders, am I taking, and I told her five binders, I take three before my meals and two during my meals, and then she ask me, how long does it take me to eat.  Well I was aware I am a very slow eater, and she came to the conclusion that the way I was taking my binders, just wasn't working for me, so she told me to start taking my binders, three before my meals and two at the end of my meals, well this began to work so much better for me.  The sole purpose of the binders, is to help bind the food before it could reach the bloodstream.  I began to look at the list on a regular basis religiously, especially when preparing a homemade recipe or a renal friendly recipe that I have collected, and have been collecting at present for well over two decades.  Referring to this list, has helped me tremendously in the last fifteen years, to learn about what foods contain what amount of phosphorus, and even potassium for that matter. Now lets get back to some very important facts on why it is so important in keeping the phosphorus in normal range as much as possible.  Attempting to maintain the phosphorus in normal range of 3.5-5.5, it is very important to be aware of how much phosphorus is in the contents of whatever food you are cooking for your meals, and of course, taking your binders as prescribed will help to limit the amount of phosphorus in the body, and the binders to do their part, in grabbing or bounding the phosphorus before it can reach the bloodstream.  Now if you become naughty and stubborn about monitoring the amount of phosphorus foods that you consume, you can potentially start to have uncontrollable itching of the body, and further neglecting your renal diet, and continuing to eat high phosphorus foods and even not taking your binders as instructed, you could experience your bones becoming brittle, hardening of the blood vessels and body organs, which leads to heart attack, and the potential of the development of bone disease and calcification in soft tissues (such as the heart & lungs), pain in the bones and joints, and of course red eyes.  I would like to share something with you, about a decade ago, during the early training days of transitioning from hemo to PD, I saw a display on the wall of the PD department, that truly terrified me, people it was so hideous looking, if you saw what I was viewing, you wouldn't want your phosphorus to get that out of control ever, and having this continuing high levels of phosphorus in your body, you can develop calcification in your eyes, foot, etc.etc, it just looks so creepy, there was a display of a foot, that was almost totally black, from all this calcification.  I literally became sick to my stomach.  That is the main reason why I try to not eat chocolate or drink any cola like sodas in the last fifteen years.  Having those itching attacks in the past, was not a joke, sometime I could practically lose my mind, scratching like a crazy person, and then damaging my skin at some point.  I don't have much problems with high phosphorus foods, but I still have an ongoing challenge staying away from cheese, I simply adore cheese and dishes cooked with cheese, such as pasta dishes.  Now, that were some particular foods, that my dietitian stressed that I should stay away from as much as possible, such as Ice Cream, yes! I said Ice Cream, Cream Soups, Chowders, Peanut Butter, Whole Wheat Bread, (and they must have been speaking of non-diabetics, right!), Chocolate, yeah Chocolate! I know what you are thinking, damn! it seems like everything we have grew up to love is practically off limit for our renal diet (believe me I sympathize completely).  Now when it comes to sodas, we truly as renal/dialysis pts, need to stay clean away from dark sodas, and my dietitian said that light sodas, such as 7-UP, Sprite, or Ginger Ale.  I drink ginger ale on the regular, even when I have an upset stomach, but I drink it flat and at room temperature, (that is when it most effective).  Just remember, fellow dialysis pts. Mr. Phosphorus is lurking around the corner, this mineral can be an enemy to dialysis pts.  And even though it is not mandatory for products to into nutrtional facts about the phosphorus in its contents, it does specify in the ingredients and form of phosphorus.   Here is some hidden sources of phosphorus to look out for: Phosphoric Acid, Pyophosphates, Hexametaphosphate, Dicalcium Phosphate, Monocalcium Phosphate and Sodium Phosphate.  You know my dietitian even told me to stay away from Hawaiian Punch, yeah! thats right! And I began to think, I have always loved drinking Hawaiian Punch, besides I grew up on this stuff, My mom would make it from concentrate, my sisters and I would even take the leftover punch from the pitcher, and make the juice into frozen cups, talkin bout good! And I didn't type wrong, it is typed just like I said it (lol).  I want to share with you a list of cheeses and exactly how much phosphorus they contain.  check it out, it could potentially be very beneficial for your renal diet.

Phosphorus
Low - 150 mg

brie - 1 oz - 53 mg
feta - 1 oz - 96 mg
cottage cheese - (non-fat) - 1/2 cup - 76 mg
Cream cheese - 1 oz - 30 mg
Cream -half/half - 1 tbsp - 14 mg

Moderate - higher - 151 to 200 mg

cheese, blue - 1 oz - 110 mg
cheese, cheddar - 1 oz - 145 mg
cheese, mozzarello - 1 oz - 105 mg
cheese, provolone - 1 oz - 141 mg
cheese, swiss  - 1 oz - 171 mg
cottage cheese - 4% fat - 1/2 cup - 139 mg
cottage cheese - 2% fat - 1/2 cup - 170 mg

Highest category - 201 mg or more

buttermilk - 1 cup - 219 mg
cheese, parmesan - 1 oz - 229 mg
cheese, ricotta, part skim - 1/2 cup - 226 mg
Milk, evaporated skim - 1/2 cup - 248 mg
Milk, nonfat - 1 cup - 247-275 mg  (note: depending on the brand)
Milk, whole - 1 cup- 228 mg
Processed American cheese - 1 oz - 211 mg

I hope this helps those dialysis pts. out there, who have an issue with phosphorus, where cheese is concerned (like I do from time to time), especially when preparing and cooking recipes that contain cheese, you may have to limit the cheese used in the recipe, or substitute it for another lower phosphorus cheese.  a tip to share: when I would make one of my renal friendly chef salads, I would opt to use the finely grated cheese, such as mozzarello, cheddar or swiss cheese, so that I wouldn't get too much phosphorus in my renal diet.

Well until my next blog, stay compliant with your renal diet, Look Out! for Mr. Phosphorus at all cost, because high phosphorus is not your friend, dialysis pts. (lol).

take care and all the best to all my followers.

Glo

Friday, August 24, 2012

Hi followers, I hope all is well with you guys.  As usual, I can't stress this enough and of course, I start off all my blogs with that enemy (CKD), which is very seriously on the rise in this country, and around the world for that matter, and it continues to grow, (day by day), and that is mainly because of the lack of education about the kidneys, this truly needs to be addressed in health classes, and high schools, so there can be early awareness to CKD.  Please people get a clue, wakeup, get wise, and strongly consider being tested for possible early stage CKD, so that preventive measures can be taken early on in helping to prolong or even reverse the progression in some cases, especially those with a history or family history of diabetes and/or high blood pressure (two of the main causes of CKD), there are other natures of the development of CKD, such as PKD (polycystic Kidney Disease) in which I have, inherited from my father.  Now on to some more pressing issues in the dialysis world, mainly the Peritoneal Dialysis World to be precise.  I recently had a f/b friend, that was concerned about her ordeal with ER and her PD catherer, and I shared some of my past experience with ER, regarding coming in with possible peritonitits (PD infection).  There was this one time about six yrs. ago, I developed peritonititis, while staying in a hotel.  Now the scenario around this is, this was my first time, doing PD away from home and in another state.  I wasn't wise to the hotel, not having a room, that would accomodate me, getting back and forth to the bathroom, as I don't disconnect once I hook up to the cycler, because I don't want to risk getting an infection, opening and closing my transfer set.  This I have followed since starting PD in 2000.  Now back to the ER episode.  I began to have symptoms of possible peritonitits, I checked my bag, and it wasn't cloudy, so that baffled me somewhat, but I was running a fever and my b/p was steady dropping, so my husband immediately drove me to the closes ER hospital.  They immediately took me in, and registered me and admitted me to a ER room.  First, they said that they needed to take a sample of my PD fluid, and at the time, I was taught by my PD nurse Tara, who was always precise and thorough with the training and warnings of pertonitits.  That nurse attempt to take some fluid from my PD transfer set, but I notice, that there wasn't any mini-caps setup, for after he removed the fluid with this syringe needle of such.  I immediately, ask him, where are the mini-caps, and he said what?  and I continued by telling him, it is a sterile cap that is designed for my transfer set, and he come showing me some clear cap, that he insist was sterile, but I wasn't having it.  I said to him, viciously, then you ain't getting near my transfer set to retrieve any fluid.  And he just said, I only need a very small sample for testing, and I told him, that doesn't matter, I don't care if it is a tear drop amount, you ain't getting near me, without any mini-caps on standby.  And he had nerve to have an attitude.  He promptly went to discuss this with I guess the ER doctor or nurse.  Before he returned I told my daughter to go to the car, and get a couple of mini-cap, from my emergency stash in my glove compartment.  its's a bag that I keep in my car, with certain supplies, Something I refresh every month, to make sure the mini-caps haven't expired.  So he returned before my daughter came back with the mini-caps, and he was still trying to get some PD fluid, and he still had that same clear looking sterile cap, that I am aware won't even fit on over my transfer set, because the bumpy part will be exposed.  Just looking at me, with an atti "damn" tude, yeah, that's what I said, which means attitude, but he did have a damn one (lol).  He did have a little funky demeanor, while waiting for my daughter, who came back about five minutes later, and then I was comfortable with preceding to allow him to drain some of my PD fluid.  Boy, I was watching him like a hawk, I made sure he did it with much precaution and as safely as possible.  I couldn't wait to get that mini-cap back on my transfer set.   When the results came back, I didn't even have peritonitits.  It was my umblicial hernia issue, which had popped out, and needed to be popped back in.  Well they gave me some morphine, to make this procedure, as painless as possible, because he said going cold turkey for this, I will truly experience some very excruiating pain.  Well, what I am trying to say is, if and when you suspect you may have developed peritonititis, take a small sample of your fluid, to bring to the ER, so you don't have to go through what I went through, as I became aware very early on, in my PD life, that those ER staff don't really have much training with PD patients, and besides at that time, this was a fairly new hospital, and I was the very first PD case, that they had in ER.  Besides it is your responsibility, as a PD patient, to make sure you keep your PD catherer safe and always be wise to the fact, that most of the nurses in ER are not trained in the procedure of PD, even on the floor, on occasion, I have had encounters with nurses, who didn't even know how to do manual PD at all.  It was all on me, and I am so glad and I commend my PD nurse Tara LaChappelle, for her precise and thorough aspect of my PD training from the very beginning.  So I hope you PD patient, take heap of this, it is very important in keeping your PD catherer safe.  You may go into ER, thinking you could be diagnosed with peritonitis, and that may not be the case, and then you don't stand your ground, where your safety is concerned, and they try to get a sample of your PD fluid, and that scenario that almost happen to me, if I would have been so confident with the nurse taking over, he could have potentially caused me to develop peritonitits, but I am so glad, I stayed firm and stood my ground, and not let that nurse try to run all over me, and of course, I wasn't feeling so well in the first place, all tumbled over from pain, but I didn't let that pain, destroy my judgement. (lol).  Until my next blog, stay compliant and safe, and do what is necessary to keep yourself managing continued good health whatever if it be with dialysis or the stages of CKD.  take care and all the best to all my followers.
Glo

Wednesday, August 8, 2012 - Let's talk medication

Hi followers, I hope all is well with you guys.  First, like always, I can't stress this enough, Chronic Kidney Disease (CKD) continues to be a very serious awareness in this country, and all over the world for that matter.  People get a clue, and consider getting tested for possible early stage CKD, so that preventive measures can be taken early on, in helping to prolong or even in some cases, reverse the progression of CKD, especially for those with a history or family history of diabetes and/or high blood pressure (two of the main causes of CKD), there are others, such as individuals with the polycystic kidney disease (PKD) in which I have, which is an inherited kidney disease, and others natures of the development of CKD.  All I am saying is people get a clue, keep your garbage disposal (your kidneys), safe from harm, so if you haven't been tested, consider being tested, because it could potentially be very beneficial to your further health, and even if the results are the early stages of CKD, it is not the end of the world for you, there are so many preventive measures in place today, than there were, when I was first diagnosed in 1990, with ESRD, and not fortunate to be diagnose with early stage CKD.  Now, on with the topic for today, Medication, I was on one of the many discussion forums on f/b, and there was a question about medication, which a pt. was concerned about stopping a certain medication for a much needed procedure, well I chimed in immediately, because I know this all too well.  I share with her, the fact, that in my case, I had approach the 50 mark, and it is mandatory that a pt., especially if they are considering a transplant or a 2nd transplant,  (like myself), has to have a colonoscopy done by age 50.  I had this done several years ago, mainly because I was being evaluated for the IVIG procedure, (by the grace of God, which was created to help in lowering the antibody levels), I happen to be at 98%), there are two hospitals that offer this procedure, for a possible cadaver kidney in the future, one being John Hopkins back east and Cedar Sinai Medical Center (LA), quite naturally I chose LA, because I reside in the bay area.  I didn't have to drive down, as Kaiser was gracious enough to pay for airfare and of course, my hotel stay as well.  Well anyway, back to the topic at hand, I was as usual completely getting off the subject.  Now, in answer to this pts. question, I was told by my neph, that it was required for me to have a colonoscopy, that is fine and dandy, but Kaiser requested that I stop my aggrenox med for five days prior to having the procedure.  I checked with my neph, and he then referred me to my primary doctor.  I then immediately met with her, and she did a checkup, that I didn't truly need in my opinion.  She then tells me, after all that, that she is not keen on me stopping this particular med at this time, and for those many days, she just simply said she is leaving it up to me, so you know what a position this put me in.  First, let me share with you the importance of taking this particular med, I had a stroke in 1999, and back then I prescribed aspirin, but when I experienced a 2nd stroke in 2007, they changed the aspirin regimen, to this med called aggrenox, in which I truly hate until this day, I don't like taking large capsules, but I do, and I just get it over with everyday, twice a day, morning and night.  Well, I didn't go ahead with the scheduling of the procedure, until I felt comfortable with this decision, it was Friday for the appt. with my primary, and then I went home to do some much needed thinking.  I thought about it constantly throughout the weekend, I even went to bed every night with this on my mind, so you know, i wasn't really sleeping much, just up watching a long I Love Lucy marathon on the Hallmark Channel, it was working until, a commercial would come in between, there it was again, laying heavy on my mind, so after watching all six episode, I sat in my bed, while in my 3rd dwell of my cycler treatment and talked to God about all this, and having faith and belief in him, I know all things are possible with him, so I said I will leave it up to the Lord, to know what is the right thing to do.  For some strange reason after having a talk with God, I finally went off to sleep and woke up that morning, and I knew what the answer was.  Monday morning I spoke with my primary, and shared my decision with her, and she said are you really comfortable with your decision, but I told her, I am going to be honest, no I am not, because of the fact, that you are not keen on me stopping the med for that amount of days, and I continued by saying to her, I was taught, by my mom, early on in my dialysis life, that you have to have faith and belief in him, because all things are possible with him, now I don't know how religious my primary doctor is, and I sensed a sort of hesitation in her voice, so I don't even know if I had offended her with that remark, as she is of indian descent, I am just hoping that she believes in God, but that is water under the bridge, and I went ahead with the prepping for the procedure, the fasting, the all fiber diet, the no greens in the diet day, and drinking that disgusting gallon of liquid, yeah right! add some crystal light to it the nurse suggested, that didn't even make it taste any better, I was practically gagging everytime I would swallow this stuff, so I did a man over matter thing, like gulp it down, without tasting it, (lol).  Finally I finished it, and of course the taking of the docolax (to make sure I was completely cleaned out).  I stopped the aggrenox, as instructed, but you know I was on pins and needles during this process of the prepping for the procedure.  When it was all over, you should have saw me immediately take my aggrenox, right after I awaken from the procedure, as I brought a dose of this med, to take right after.   I did share this in much deeper details in my 2nd book - My Twenty Year Journey with PKD in the Dialysis World - it would truly help those on PD, feel more comfortable and at ease about undergoing this procedure, I share the entire scenario around what was required to pre prep for the procedure, what I ate, and how much I ate, and of course, most importantly decreasing the amount of dialysate to dwell in my peritoneum, I discovered that when I did all manuals at this time, I wouldn't dwell the usual 1500, I decreased it to 500, so that this liquid that I was required to drink, would stay down comfortably, because in the beginning when I first started to injest the liquid, I was throwing it right back up, so I wasted the first glass of it, and that was because there was way too much liquid already dwelling in my stomach, Gee! I should have know from jump street, that adding more liquid in my body, wasn't going to work, while I am already loaded with dwelling fluids (lol).  So, maybe many of you PD patients are approaching the colonscopy mark, (so to speak).   Well that is it for my blogging today, as always until my next blog, stay compliant and safe.   take care and all the best to all my followers.
Glo