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

Monday, July 30, 2012 - An important awareness about CKD

Hi followers and of course my P2P family (that I promise to share my embarassing incident, that lead to the diagnose of ESRD (Stage 5).  My story - (and this is shared in full details in my 2nd published book - "My Twenty Year Journey with PKD in the Dialysis World") - It was a Monday morning, and I was as usual getting ready for my productive day at the University of San Francisco, (where I was employed as a Department Secretary in the College of Business), the usual routine, drop my toddler daughter off at the nursery school and then precede to the Bart Station, park my car, and bart it over to the city.   I arrived at work, and did the usual, got a cup of hot cocoa, and a pastry, because I was at work 20 minutes before my work day started.  It is now, 12:45 PM, and Professor Singleton (one of 30 professors, that I assist with secretarial duties) walks in the office and hands me a key and exam to type, and he also hands me a document to fax to Uruaguay (i hope i spelled that correctly), well anyway, I immediately went over to the fax and faxed the document, and then I preceded to start on the key and I completed that before lunch, I continued to start to type the exam, but I only got a 1/4 of it done, because it was time for my favorite soap) - One Life to Live, and it was the episode, where they were in this underground city called ETERNAL and Lantano Mountain, and I truly didn't want to miss this episode, well about 20 minutes into the soap, I began to get that urge (you know I had to pee real bad), but I was being stubborn, about going right then and there, to relieve myself, (just tossing and turning all in the seat, trying to delay the inevitable (lol), so I said just let me catch this scene and then I will go as soon as a commercial comes on, well yes, I did just that, but just as I was about to enter the restroom, the urge came full force, that I immediately went in the restroom and went to the stall that  was facing the door (which is usually designated for the disabled and handicap), hallejuah! I relieve myself, without dripping a drop in my personals and I was so pleased, I went over to the sink to wash my hands, and as I was washing my hands, I happen to look at the wall in the back of me, and saw this enormous size sink, and then I continued to look around the bathroom, and I didn't locate a sanitary dispenser of any kind on any of the walls, so I began to think, and said to myself - OMG, this is the men's restroom.  I was so embarassed, that I immediately tried to get out of that bathroom with the quickness, and just as I was entering the door to make my escape (so to speak), guess who comes in, just as I made it to the door, yes, I guess you did guess, none other than Professor Singleton, himself and you know he spotted me right on, and had the nerve to precede with a conversation, asking me had I submitted his fax request, and of course, I answered yes, but very nervous in the process, you  know that professor, continued to ask me if I had completed the key and exam for his midterm, and of course, I told him I hadn't finish and that I need to get out of there in a hurry, and he kept on trying to talk to me, I know he felt that I was being rude, but when I left the bathroom, two male students, saw me come out of the men's bathroom and they remarked to each other with, this is San Francisco, but I didn't tarry, I couldn't even go back to the student lounge, to finish watching my soap, I just immediately went back to the office, and promptly called my neph, and told him, that I was having these frequent urinating episodes, but I didn't share with him this embarassing incident that had occurred earlier, so he immediately set me up to have my access put in place.  Well that is the story, that truly lead to my neph, finally taking notice of my very serious kidney failure.  So you see, that is why I can't stress this enough, Go Get Tested for Possible Early Stage CKD, so that preventive measures can be taken to help in prolonging or even in some cases, reverse the progression of CKD, especially those with a history or family history of diabetes and/or high blood pressure (two of the main causes of CKD),  so you won't have to experience any embarassing moment, like I did in the past, and of course, having to break your neck to get to the bathroom or restroom, whatever you are at the time, to relieve yourself before you have an accident (lol).  People, CKD is very seriously on the rise in this country, and all over the world for that matter, the awareness of CKD truly needs to grow, and the media needs to wake up and take notice, with all these national talk shows, just springing up year after year, I have tried vigorously to bring this to the attention of varies national talk shows, and especially during National Kidney Month (March), for them to consider doing a show topic that focuses on CKD and National Kidney Month, but it has just gone on deafs ears, I have even tried through snail mail, several years, before the introduction of the internet.  I don't know what it will take, for them to finally wake up and have a clue as to how serious CKD really is, maybe because it isn't a celebrity voices their concerns, all these national talks shows are focus on, is celebrity based topics.  Well that is it for my blogging at this time, as always stay compliant and live well, my followers.  Until my next blog, take care and all the best to you guys.
Glo

Sunday, July 22, 2012

Hi followers, first, my continued efforts with the awareness of CKD, and to continue urging people out there, to consider being tested for possible early stage CKD.  CKD is very seriously on the rise in this country, and all over the world for that matter.  I can't stress this enough, it is so very important to consider being 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 those with a history or family history of diabetes and/or high blood pressure (two of the main causes of CKD).  I have PKD - Polycystic Kidney Disease, which is an inherited kidney disease.  There are varies other natures of the development of CKD, such as other diseases, illness, as well as an injury of such, that could damage kidneys, but could be acute kidney failure, which can potentially be reversible.  Now, on to the topic at hand.  People can we talk, the saga continues with my issues with this so called UF target software, that was installed in the Baxter PD cyclers, and yes, I have been having my issues with this for awhile, and I am not a happy camper.  I did however, address this to my neph, as well as my PD nurse on thursday, and my PD nurse, changed my UF target from 200 to 0, Yeah right! 0 come now, are you kidding me, that truly defeated the purpose, NO!! that was not the solution, let me break it down to you, After making these adjustments to my UF target setup, I begin my ten hour nightly therapy.  I went through the five exchanges, well anyway, the four exchanges went smoothly, no alarms, but when I got to the last drain, which was the 5th drain of the 5th exchange (and the last exchange for the therapy), it began to alarm and the Low UF began to flash, as usual, I kept hitting stop, and checking the number by down arrowing, and it was on 150.   After about three times, it displayed - End of therapy, so I continued with the usual, disconnecting myself and cleaning my PD catherer, I continued by recording the readings to my monthly flow sheet, and this is the reading results - ID (Initial Drain - 14)  UF total - 449,  Average Dwell Time - 1:31, and this was mind you, with a 2.5 X 2 as my prescription setup.   I went about my day, and early evening I setup my cycler for another 10 hour therapy, this time with a 2.5 and 1.5 prescription,  ID - 37, then it precded with the usual exchanges through the night, no alarms, but the start of the 5 and final drain of the therapy, the alarms and Low UF flashing occur, and after going through the same protcol, the display - reads end of therapy - I did the usual disconnect, cleaning catherer, and then recording the readings - ID - 37, total UF - 7, Average Dwell Time - 1:24, this was a very sad and pitiful reading, and I felt it, when I attempted to start my productive day, I notice that my feet were swollen, as well as my face and chin.  I went downstairs to the kitchen.  Now usually I would have trouble with going up the stairs, whenever I may have a fluid overload, but this time, I was having difficulty even going downstairs, without getting out of breathe, imagine that.  I was so miserable all day long.  I decided before my setup for my nightly cycler treatment, that I would experiment with the UF target setup, because I came up to the conclusion, that after this new setup didn't bring much success, that my PD nurse, was truly just guessing at my UF target number, so I took it upon myself, to do my own little experiment, and I decided to set my UF target to 150, because the 200 setup wasn't working for me, which was obvious, because of my ridiculously total UF reading.  After setting my UF target to 150, early evening I began my 10 hr. cycler treatment, I guess I had an excessive amount of fluid still inside my body, as I don't do a last fill.  The ID read - 132, so I preceded with the usual exchanges during the night, no alarms, running smoothly, and now the test of time, It was time for the 5th drain of 5th exchange, and Hallejuah! no alarms, no Low UF flashing, it just continued to drain, so smoothly and pretty fast I must say, until it displayed - End of Therapy - Oh Boy! was I relieved and pleased with this 10 hr. therapy treatment.  I was so anxious for my readings - that I just closed my transfer set, and took the readings, before disconnecting from the cycler and doing the usual cleansing of the PD catherer - the reading - Drum Roll, Please - ID - 132,  total UF - (the grand total of 358), and my Average Dwell was also in the norm - 1:35, and all this came about, with my experimenting with the UF target setup, (let me just pat myself on the back - lol) I can't wait to share this with my PD nurse (who is suppose to have been trained for this new software, yeah right!), and of course, my neph as well.  My b/p was normal at -  116/77 (87), so I was very pleased with these readings.  My day went so much more productive today (Sunday), I am also looking forward to a good meal for dinner, consisting of my husband grilling chicken and steaks, because it is way too hot here in the bay area, to cook, however, I will prepare some side dishes, corn on the cob, and a cold pasta vinegerette salad.  I didn't eat anything last night, because of the fluid overload, I didn't have much appetiite, nor was I thirsty, so I didn't have to limit my fluid intake, and that was a good thing.  Now, if any of my Baxter Cycler PD family, are coping with these issues with Low UF, then I feel for you, but strongly suggest  you  play around with your UF target setup to find out what target works for you.   As always stay compliant with your renal diet and medication regimen as best as you can, and I know from long time experience, that this is easier said than done, you just need some serious will power and determination to succeed at this.   Until my next blog, take care and all the best to my followers.  Chime in, if you have thoughts or concerns about this blog.  I look forward to all rebuttals to my blog post.
Glo

Thursday, July 12, 2012 - First, I want to start each and every post there after, spreading the awareness of CKD, starting today  - Spreading the awareness of Chronic Kidney Disease (CKD), which is very seriously on the rise in this country, and all over the world for that matter, urging people out there to strongly consider being tested for possible early stage CKD, because since my diagnose of End Stage Renal Disease (ESRD) back in 1990, they have created GFR - which stands for Glomerular Filitration Rate - creating this over fifteen years ago, has truly been a blessing for so many out there, who have been diagnosed with early stage CKD.  Preventive measures can be taken early on, in helping to prolong or even in some cases, reverse the progression of CKD.  So much has been discovered in the last decade and a 1/2, but there is still a stigma attached to CKD, because there are still many people walking around God green earth, not realizing, they could be potentially in the early stage of CKD.  The lack of education about the kidneys, is the main reason why the kidneys go undetected with possible early stage kidney disease (failure).  The fortunate fact that renal failure is becoming more and more prevalent in today's society, and of course, the fact that I have witness in the last decade, there are more and more younger adults, as well as older teens developing chronic kidney disease, and resulting to the development of End Stage Renal Disease (ESRD) (from one nature or another) and most importantly, those individuals that have a history or family history of diabetes and/or high blood pressure (two of the main causes of CKD).  Because of our aging population, and more and more baby boomers are surviving these days, kidney disease (failure) is affecting more people today than ever before.  Today more people suffer from diabetes, high blood pressure, heart disease, and obesity.  Many diseases have the potential to damage kidneys, impairing their ability to filter waste effectively and ultimately produces a life-threatening situation.  And like I mentioned early on,(and it bares repeating), the lack of education about the kidneys and how important they are to our health in general, is the main reason why the kidneys can go unnoticed with the possibility of early stages of chronic kidney disease and what can happen, when the kidneys began to lose function, and how important it could be to seek early testing, because it could be so beneficial to an individuals continued health in the future.  So my followers and others who read my blog post, if you haven't already, go get tested for possible early stage CKD, especially if you are experiencing high blood pressure, that is one of the main signs of possible Chronic Kidney Disease.  Listen up! Take Notice! Get a Clue! Wake up and Smell the Coffee, or Espresso, etc. etc.  Go Get Tested, OK.   I have been vigorously trying to reach out to many national as well as local talk shows around the country, to strongly consider doing a show topic on Chronic Kidney Disease, I have stressed to many of the national talk shows, that March is National Kidney Month, every year, and there is a day designated as World Kidney Day, which would be the perfect opportunity to spread the awareness of CKD, and to urge people to consider getting tested for possible early stage CKD.  In my opinion, I feel that CKD has been ignored by the media for far too long, and we need our voices heard from the Renal/Dialysis communities all over the world.  All walks of life are at risk at some point in their lives, and we truly need to help the awareness grow.  All that I have done, with emails in the last ten years, and before that, snail mail, it is just going on deafs ears, it seems that these talk shows are not taking Chronic Kidney Disease serious.  I guess if I was of some celebrity status, then maybe they will take notice.  We truly need some celebrities on our side, to make this happen.  I won't get discouraged, I will continue on my mission to spread the awareness of CKD, and continue the effort with annual kidney walks to raise awarness, help the continued government funding in hopes of finding a cure for CKD, as well as PKD, and also urge continued organ donation as well.


Now on with my usual blogging - This is to my PD family, Last Night, the usual setup for treatment was done, and then I began my initial drain about 10 PM.  During the fill 1 of 5, my cycler alarmed and displayed SLOW FLOW PATIENT - something I never experienced before, out of all my 11 years of PD treatment.  I immediately, restarted the fill volume, but I arrowed down to see how fast the fill volume was going, I could clearly see that it was filling very slow, something like four or five numbers at a time, vs. the usual ten to fifteen numbers at a time, and then it alarmed once again with that very same display.  I immediately went to my trusty help manual (that I have kept under my pillow, from day one of my cycler treatment), and referenced SLOW FLOW PATIENT, and there were three steps to check - 1) check for closed clamps (check)  2) check for kinks in the line (check)  3) check for fibrin (check), but I decided to put some heparin in the bag, as a precaution.  All this didn't help to remedy this problem.  After stumbling around in the dark, and practically looking at the upper front part of the cycler  (partially blind (lol), remember it is the wee hours of the morning (around 2 or 2:30 AM), for the Baxter help line # and also the serial # of the cycler, which is also my pt. account # as well, I promptly called Baxter, and of course, would you guess, they are experiencing an overload of calls, so I had to wait about ten minutes, and I wasn't going to hold that darn phone to my ear all that time, so yes, I put them on speaker, and while waiting I turned the TV back on, to pacify myself (lol).  The I love Lucy Show, in which I truly love to watch, and mainly because Direct  TV has removed over 26 channels from the programming, so my choices were very limited for that time of night, or morning, whatever.  I am still pissed about that, all this jazz about some company called Viacom, just gritty, that is all I can see, is why this happened.  We dialysis pts. don't ask for much, put I do enjoy watching many of those channels that they have eliminated.  Nickleodeon, BET, VH1, etc. etc., need I say more.  Well back to the cycler problem.  Finally a representative comes on the line, and you know the usual drill, your account # and what seems to be the problem - so I stated the Slow Flow Patient Display, and then she tells me to hit stop and then go and down arrow once, to check out the status of the fill volume, the alarm moments later goes off again with the same display.  She then goes through the scenario of all the three steps in the help manual, and then she tells me to check to see if my patient line tubing is flowing freely on the floor, not coiled up or anything (check), then she instructs me to open and close my transfer set a few times (check) next thing she instructs me to do is take any tape that could be stationed around my catherer, so I removed most of the secure tape (check), then she instructs me to hold all the tubing that sticks out from the cassette and pull them very firmly up and down several times (check), then hit the go bottom to resume the fill of the first exchange.  She waited on the line, and ask several times, where was the fill volume at, at the time it was on 320, then 324, then 328, it then alarms again, with the very same display.  So the representative came up with the solution, that it could be a problem with my PD catherer, or it could be a problem with the cassette, because the cycler is strugglling to flow freely through my PD catherer tubing to fill my peritoneum with dialysate (PD solution) for dwelling.  She then instructed me to end the therapy, and ask me did I need any assistance in completing this phase of the treatment therapy, but I assured her, that being on PD for over 11 years, I do know how to do this step, from past experience.  She then said do a manual exchange, after I disconnect from the cycler, and this will indicate if it could be my catherer, but of course, I was already convinced that it wasn't my catherer that was causing the problem.  My manual exchange went very smoothly, because all I did was drain the dialysate that the cycler tried to fill my peritoneum with, so I did a manual exchange, but I only drained what the cycler had put in so far, because I don't dwell any solution during the day (to lessen my risk of a possible 3rd umbilical hernia development).  I don't have a last fill, after my 5th and final exchange for my 10 hr treatment.  This was quite an ordeal for me, it was obvious I didn't get any sleep the entire night, so of course, I was quite sluggish and dragging all day long.  I hope and pray that my treatment therapy runs smoothly tonight, but I may have to endure this Low UF jazz, during my 5th and final drain for the day, so we'll see what transpires tonight.  That is it for my blogging, and I guess complaining for this post (lol).  Until my next blog, stay compliant with your renal diet and medication regimen dialysis pts.  take care and all the best to all my followers.
God is love, love is God,
Glo

Monday, July 2, 2012

Hi all, I had a somewhat OK weekend, and it would have been a lot better, if I didn't have to deal with my cycler, and this new feature.  Now, I know some of my bloggers, may not know where I am coming from on this, so I will relate this PD issue to my PD bloggers.  Last year, in June, 2011, I had to return to hemo temporary, to have an umblical hernia repaired, in which I developed in my sixth year of PD, it wasn't giving me any pain or discomfort, until my fourth year of living with this hernia, it began to wreak havoc on my body, that I had to seek medical attention from ER, three times, to have the hernia pushed back in., to do this, I had to endure an IV injection of morphine, because I was warned by the ER doctor, that the pain would be excruiating, and the morphine would very much lessen the pain after the procedure.  Well that wasn't the only thing that began to occur, I developed a bowel obstruction as well, which resulted in my neph, finally deciding that I need to have this hernia repaired as soon as possible, so of course, to do this, I had to return to hemo temporarily, well I return to hemo in good faith, in the hopes of having this hernia repaired in a few months, but that didn't transpire right away, only a few weeks after starting hemo with the help of a perm chest catherer (in which I was surpised as well as my neph, that I was able to have a catherer in place in the upper part of my body, after all these years, because in the past, I have had to have catherers placed in my groin, which was in 2006).  Well anyway, during the first month of hemo, I began to collect fluid around my lungs, and the twisted thing about all this, is that I didn't even have any fluid collecting around my lungs while on PD, go figure! I do believe it was that chest catherer, that caused this to happen.  It got so severe, that I needed to have the procedure, where they insert a needle in my back, and drain as much of the fluid as they can, but they are allowed to only do one side at a time, and my left side was more diminished.  However, I was beginning to have issues with having to sleep upon two or three pillows, just to get a restful night of sleep, and I remember these days, when I was on hemo during my first ten year run with dialysis.  Well anyway, finally a few weeks before Christmas, my hernia surgery was finally scheduled.  I remained on Hemo for about two weeks, and during that time, my chest catherer began to give me trouble, I wasn't dialyzed as well, so my treatment was stopped in the first hour, by my neph, who was there for my monthly checkup.  I immediately returned to PD, to see the PD nurse, and discuss my return to PD, first, it was decided that I do nothing but the 10 hr. cycler treatment, and not to do any midday manual exchanges nor a last fill on the cycler, so I didn't have to dwell, my neph decided this, would lessen the risk of a re occuring hernia.  It has been six months now, and I am proud to say, I am hernia free, this PD prescription is working out fine for me, but I do have a beef about the replacement cycler that was delivered, for some reason, Baxter has added this so call, feature that simply annoys me, when I am in my last drain of my five exchange cycler treatment, it would alarm displaying Low UF, and I would take my tubing and place it above my head, so that the drain would flow more freely, but I have to repeat this step, at least three times, before the therapy displays - End of Therapy.  I brought this to the attention of my PD nurse, and she gave me instructions on how to turn the alarm off, but that didn't solve the Low UF isssue, she then tells me to raise my cycler up some, and that didn't remedy it either.  Now, I am so fed up with this, because it is truly cramping my style, I have missed church twice last month, and also if I have planned something with my husband and daughter, sometime I have to decline from joining them, because my last drain is taking way too long to complete.  I could just BYPASS, but that will defeat the purpose, because I did it once, and I had to cope during the day with a fluid overload, my ankles and face were swollen as well, so I decided not to do that again, because I am suppose to be empty during the day, not that usual dwelling of the dialysate, like before, and I God knows, I don't want to endure another one of those umbilical hernia, right!  Gee! I have enough health issues as it is (lol).  I am scheduled for monthly labs on friday, and you best believe I will address this at that time to my PD nurse, because something needs to be done about this.  I have been on PD for over ten years, and have never had to deal with this particular feature before, and I have done just fine, most of the time, with my treatment.  I think if they were going to introduce some new feature to this new, (excuse me), not new machine, just recycle cyclers (ha ha!), then they should have gave us veteran PD patient, the choice of whether we wanted this new feature or not, because in my opinion,  I don't need this feature, I know my body in and out, and I am aware that my PD prescription may change from time to time, because the b/p and weight changes from time to time, indicating that a change needs to be made to the PD prescription.  Well I have rant, rave and complained enough, if any of you other veteran PD patients, (like myself) or experiencing something similar, please chime in with your thoughts, and concerns about this matter.   That is it for now, until my next blog, stay complaint with the diet, treatment and medication regimen as best as you can to help in managing continued good health with Hemo, PD or HHD.   take care and all the best to my followers.
Glo