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