Tuesday, November 27, 2012 - Issues with heat and dialysis

Hi All,  i hope all is well with you guys, Now on to the topic at hand.  I was recently on the Dialysis Discussion forum on facebook, and there was a deep discussion on the concerns of dialysis and being able to cope with the heat, well I am here to tell you, residing in California for a few decades now, I have had my bouts with the heat in the summer months.   In the year 2004, I had been on PD for four years by then, and my family and I decided to attend the annual Crawdad Festival in Isleton, CA.  Of course it was one of those very hot days, the temp was around 104 and steady rising.  We arrived at the festival, and of course, had to drive around to look for an adequate place to park, and I was hoping it would be a parking area in a shaded area.  It wasn't, but all in all, it was a close parking space.  Walking around for about a 1/2 hr, with my daughter, I began to feel somewhat lightheaded, and there was a policeman, that was observing me, and ask me if I was OK, and I preceded to tell him, about me being a dialysis pts, and I think the heat was a little too much for me to bare, so he said, if you began to feel worst, the city has provided courtesy parmedic services.  He then says to me, you are starting to look not so good (in a short of New York brooklyn type accent), so he said I should see the paramedics to be sure, and then he and my daughter took me by the arms and escorted me to the ambulance truck, that was parked under some trees, a few feet from the festival entry.  As soon as I entered the truck, the paramedic took my blood pressure, and it was running low, around the low 90's, then they told me to lie down for a bit and they also gave me oxygen, as I was breathing sort of shallow as well.  It was obvious that I couldn't tolerate a b/p that low, and of course, with all the perspiring that I was doing, it caused my b/p to plummet to this low reading.  Now the trip that about all this, I got better within an hour, and my husband decided to end our festival excursion for that day, and we immediately returned home and my husband fixed me some chicken noodle soup, (because I remembered at the unit, they would give me straight broth, but I felt that I needed to protein in the chicken soup, and of course, it hit the spot, I began to feel better and better, but about a few weeks later, I get a bill in the mail, (for the paramedic services for that day), I was told by the policeman, that this was a courtesy service through the city), I became ballistic, when I was told when I called about this matter, that this was a bill, that I had to pay, well, my husband and I immediately took a trip to Isleton to straighten out this matter, and we went directly to the little town precinct, we were there over an hour, waiting on the outcome about this bill matter, and then the chief of police, i guess, told us, he wasn't aware of no courtesy paramedic service, that Isleton provides for the patrons of the festival, we went home very angry and simply ignore this bill, until a month later, I get a summon to appear in court.  I never went to court, and for months and months, I didn't receive any bill or even a letter from then, and now it has been over eight years now, and it never showed up on any of my credit reports, so I said, maybe they decided to just throw this bill out, and I think it is mainly because their police department stated to me, that it was a courtesy service, so I guess they said, "My bad", right! (lol), but since then, I haven't been to the festival ever since, especially since I know I can't tolerate that much heat, I really should have known, that as a dialysis pts, that a temp over 100 degrees would effect me in a very serious way.  This day, if it is over 95 degrees, I don't go out, even when I want to go power walking, I would wait until the sun goes down in the evening, and the temperature has dropped below 89 degrees.  I know right now, the weather is pleasant here in the bay area of Calif, but for those, who live where it is very warm, and also my friends down under, be cautious of the heat, and do what is necessary to keep yourself cool at all cost.  Stay Cool, Not a Fool!     Until next blog, stay well, and compliant with your renal diet and medication regimen as best as you can, I know all too well, that is easier said than done.   All the best to all my followers, and Happy Holidays! to all.
Glo

Twenty year journey with CKD in the dialysis world 10/19 by Why Wait | Blog Talk Radio#.UID_0gmdN0g.blogger

Twenty year journey with CKD in the dialysis world 10/19 by Why Wait | Blog Talk Radio#.UID_0gmdN0g.blogger - I hope you will tune in, here are some highlights from my live blog interview - The stressing of CKD, and considering early testing for possible early stage CKD, (which is stress throughout my interview at varies points), my diagnose of ESRD, this very challenging renal diet, my health issues with prolong dialysis treatment, hemodialysis vs. PD, in (in which I have extensive knowledge in both forms of dialysis treatment), sharing stories about my plight with mistaken identity (a drug addict and gun shot wound victim incidence), the IVIG procedure, (for lowering my high antibody levels, accumulated from a premature birth of my daughter, five years prior to starting hemodialysis treatment, and many other topics pertaining to the dialysis life.  I would love some feedback on the interview, you can comment on it, on my personal blog and do consider joining as a follower to my blog, i love receiving comments, concerns and thoughts about my blog post.    Glo

November 12, 2012 - Monday

October 31, 2012 - Update on PKD walk 2012

HI all, first Happy Halloween! hope you had fun, well taking your kids out trick or treating, or even attended a halloween party of such.   Now that our San Francisco Chapter has embarked on our annual PKD walk for the cure event, I want to share a recap of Sunday's event, first, I was on time for the very first time, hallejuah! The walk was a great success.  We did the electric slide for the first time, as a warmup strategy, that brought many CKD pts, dialysis pts, varies dialysis staff from varies dialysis units, and pts. families and friends together.  It was so much fun.  The live band was off the hook, and so was our very own regarding artist, Jesse Brewster was amazing as usual.  There was so much goodies there to snack on.  I always share appetizer samples from my cookbook section of my books, and they were a hit as well.  My booksigning also went well.  All in all, it was a very beautiful and sun shiny day in the Park.  I hope we have even greater success at next year's walk event for 2013.  Until next year, continue to spread the awareness of CKD, and urge people to 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), and of course other natures of possible development of CKD, such as a history of PKD, lupus, etc. etc., and stay compliant with whatever is needed to help in prolonging the disease in early stage CKD, for as long as possible.
take care and all the best to you.
Glo

Twenty year journey with CKD in the dialysis world 10/19 by Why Wait | Blog Talk Radio

Twenty year journey with CKD in the dialysis world 10/19 by Why Wait | Blog Talk Radio

Please tune in at 12 Noon, PST on Friday, October 19, 2012.  I have been invited as a special guest on the Carol Brent Live Blog Show to chat about my 2nd book - "My Twenty Year Journey with PKD in the Dialysis World".  I am currently towards the end of completion of my 22nd year of dialysis.  I have PKD (polycystic Kidney Disease).  I had a ten year run in the beginning on Hemodialysis, and about 2 1/2 yrs. of dialysis, I received the blessing of a lst kidney transplant from a non-living donor, but due to complications with the anti-rejection meds, and my high antibody levels from a previous premature birth of my daughter (whom I am happy and proud to say, is healthy and attending San Jose State Univ. in the pre-med program in hopes of becoming a vascular surgeon someday).  I returned to Hemo, but due to complications during my 10th year, with numerous AV grafts and repairs, I had to transition to Peritoneal Dialysis (PD), when my 4th graft in my leg, began to fail.  I remain on PD, this very day, towards the end of my 12th year.  Up until 2008, I had accepted the fact, that I would remain on dialysis for my continued survival, but by the Grace of God, the IVIG procedure was created, and I am once again optimistic and hopeful to receive the blessing of a 2nd transplant.  More to share during the show tommorrow.

Twenty year journey with PKD in the dialysis world 10/19 by Why Wait | Blog Talk Radio

Twenty year journey with PKD in the dialysis world 10/19 by Why Wait | Blog Talk Radio

Sunday, September 30, 2012 - Topic - Laughter is the best medicine

Sunday, September 30, 2012 - I can finally post this topic on my blog, first, I must apologize, as I was having difficulty posting this topic on Saturday, as I promised, Google wasn't cooperating with me, so I am posting this in the wee hours of the morning, after getting comfortable and hooked up to the cycler for my 10 hr. PD therapy.  Well anyway, I was reading some post on the Dialysis Discussion Forum on f/b, and my davita & f/b friend Marina chimed in, with a reply post to this topic, and yes, she is right, Laughter is the best medicine, and I know this all too well, as I have had many humorous incidences, that occurred at my hemo unit, in my car, while driving on the 80 Fwy, and many other places, but I want to share one of my humorous moments, that involve cramping and the ellen talk show.  About fifteen years ago, I was on hemo at the time, and I was called to come in a little earlier, as sometime, when a pt. is unexpectly hospitalized, I was offered to come in earlier.  I got to the unit about 2:00 PM, so I was there in plenty of time for the Ellen talk show.  I got comfortable and my vitals were taken, (you dialysis pts. know the drill), then my arm was sprayed with ethyl chloride, (to freeze the skin, sort of making it numb), and I know what some of you are thinking, why don't I have lidocaine administered, well, that is because, a fellow veteran dialysis pt. at the time, told me in 1991, that I shouldn't get lidocaine, because I have to have four needle sticks, and that would very much in time, caused damage to my AV graft site, because AV grafts have a much higher risk of the development of clotting issues and artery blockage as well, and then he suggested ethyl chloride, and I had it administered ever since.  Well on with the story, my needle insertion went pretty well, and then I was then able to rock and roll.  It was now 3 PM, and time for the Ellen talk show.  I began to watch the show, the theme music began, then her entrance to the stage, and as I was singing along with the theme, I could feel one of those cramps starting to creep up on me, I continued to sing, until that darn cramp, came full force in the back of my right calf, and as I was singing, you know, "Have a little fun today.....yeah, yeah, and Give a little love away.......yeah, yeah!!!!!!!!!!!! I was screaming to the top of my lungs, yelling, "I'm cramping", I got a cramp, help! help! I even woke up some of the pts. that were busy catching zzzzzs... still trying to look over her shoulder, trying to continue looking at ellen, because it was time for her intro dance, and I surely didn't won't to miss this segment of her show, as I am always surprised at the music she will dance to, but because I was in so much pain, it was a little difficult for me to concentrate on the show, and of course, the nurse, looked up at me, and started laughing as she was relieving me of this cramp, it was beginning to subside, and she said, "girl you too much", in all that pain, and still trying to look at TV, what is intriguing you so much, and I replied, after feeling better, "Ellen talk show", and she replied with, yeah I like her show too, but I only see it when I am off.  Before leaving my station, she said, You would have had a fit, if you missed ellen, wouldn't you?, and I looked at her and said, Girl, you know it.  You have to have been there, but I know there are hemo as well as PD followers on this blog, that can truly relate, maybe you have some very humorous moments to share.  Do chime in with your stories, as well as thoughts about my cramping experience.  And that isn't the only time, that I have had a hilarious moment with a cramping saga, and maybe I will share another experience with you in a future blog, but the reason for this blog, is to let those out there know, that it isn't the end of the world, if you experience these side effects from hemo and even PD as well, it's not that tragic, it does help to laugh sometime, the reason this may happen, is you may come in to hemo, with an excessive amount of fluid, over your dry weight, and sometime, when the tech or nurse, runs the dialyzer at a high blood flow, you could experience some cramping, because the fluid could be taken off too fast, because the tech is trying to meet your target dry weight as close as possible, but sometime it is a guessing game, because it could be you could be losing weight at the time, and you could have reached your dry weight, before your treatment session is over, so then they can turn your UF off.  That is why it is important, if you are pending dialysis pts. and fairly new hemo pts. that you learn early on, the ins and outs about the dialyzer, learning what the display numbers mean, any features you are curious about, just ask, your tech or nurse, I'm sure the nurse or tech, would be happy to explain the features to you.  Well, that is it for my blogging today, until my next blog, stay compliant with your renal diet and medication regimen, (and yes, I know that is easier said then done)and just remember Knowledge is key.  Moderation when it comes to this very complex renal diet.  All the best to you.
Glo

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

Tuesday, June 19, 2012

Hi all, it has been awhile since my last post, but I have been extremely busy with PKD business and strategizing for our annual PKD walk for the cure event in the City.  However, today, was my monthly visit with my neph, and all my labs were good, accept for my protein, which has been quite a challenge for me.  I discuss this with my dietitian, and she look back at my protein levels while I was on hemo for the six months last year, that i had to return to hemo to have an umblical hernia repaired and my albumin, was most of the time in the high 3's and sometime at 4.0, so she came to the conclusion that high flux treatment with hemo, agrees with my protein intake, as I don't lose as much protein, as I do currently on PD.  Of course, doing PD everyday and ten hours straight during the night, it seems that even though I am continuing to consume the same amount of protein as I did on hemo, the draining process of the exchange of PD treatment, tends to eliminate most of the protein, that I have consume during the day.  I have tried so many protein supplements, ranging from boost drinks, snicker protein bars (yes, snicker, it has the logo on the packaging as well, just like a regular good tasting snickers bar (lol), but I don't practically like the taste of these (so called) high protein snicker bars.  I have even tried resource drinks (which taste very good, because they taste like juice, instead of the milky boost drinks), but lately, they have gone up on the price of a case of these drinks, and at the moment, I can't afford to purchase them from the distributor, like I have done in the past, go figure! everyone is hit by this bad economy game, (my distributor company - need I say more).  My dietitian, did give me some samples to try, even a high protein jello, let's see what that taste like, I will give it a try tonight for a snack.  My hemoglobin is still  high, so I am not in need of any EPO (Epogen).  So that was good to hear.  My session went very quick, as my neph only had a concern for my very low albumin level, other than that, all my other labs were great, especially my phosphorus, which was 3.2, the lowest it has ever been, and of course, my potassium was 3.8, very good.  I was so proud of myself, but I do have to work harder at building the protein in my body, let's see when the next monthly has to be drawn, I will keep you posted.  So on with last weekend.  On Saturday, I was invited to an old friends new home, which was a 2 hour drive away from my home.  I had planned to attend sunday church service, but because of the time I left my friends home, which was around 9:00 PM, I didn't get home until around 11 or a little after 11, and I had to setup my cycler for my ten hour cycler treatment, but that morning during my last drain, I kept getting low UF alarms, and this very much delayed my therapy from ending on time as schedule, so I missed the church service, however, my daughter and I did take my husband out for Sunday Brunch, which was suppose to happen after the sunday service.  Oh well! We went to brunch, and we didn't  remember, how cold it could be by the marina, we practically froze our butts off, but we made the best of it, inside, as it wasn't too cold.  The spread was very nice, and of course, we had reservations, so we went ahead of that long endless line, that greeted us at the door.  I ate so much, I could have burst, and I did concentrate on putting a lot of protein on my plate, such as scrambled eggs, smoke turkey, beef sausage, hash brown potatoes (no worries about potassium, levels were good on monthly report), shrimp cocktail, steamed snow crabs (all you can eat), a vegetable season rice dish, cold pasta salad, smoked salmon, prime rib (very tender, but had to doctor it with seasoning for flavor),  As far as the desserts go, it  look so yummy, but I couldn't eat another bite.  After I finish my meal, I just gazed out the window, looking at random men kayacking (i hope I spelled that right), cannoes and varies sail boats passing by, and I also checked out the seagulls flying around and all lined up on those big rocks, outside of the restaurant, I was even astonish by how in the world, were those seagulls just landing on the water, and just sitting all unconcerned, like they don't have a care in the world, (and they probably don't, they probably are just sitting and thinking about their next meal), although I observe some of the seagulls with fish in their mouths, so they were fishing for fish and what truly tripped me out, is the way they were holding steady on the water, even when those big waves would come about, and they wouldn't even  get knocked down, it was just fascinating to me.  I began to think about the recent movie that I saw, called the Birds, and I mentioned it to my husband, and he said yes, all this occur at Bodega Bay, so we were on our way home, and then my husband decided to take a detour and ride to Bodega Bay, which we had to go through petuluma, but when we got there, it was so cold, that we decided not to park and walk around.  It was just great to see, the place where this very classic movie was filmed back in 1961, I began to think about how old I was when this movie first debut, I was very young, but years later, I would see this movie from time to time, on cable, and I always enjoyed it, though I observed some very stupid dumb and competent parts to this movie, it didn't seem apparent to me, when I was watching this movie decades ago, I guess I just observe so  much more when i would watch those classics, since turning 50 (lol).  Well that is my weekend, and I hope all my followers had a wonderful, enjoyable and relaxing weekend, and I hope all my followers that are dads, had an awesome Father's Day.  Until my next blog, stay compliant as best as you can.   take care and all the best to all my followers.
Glo

Wednesday, May 9, 2012

Hi All, I finally got a chance to blog about last thursday, May 3, 2012, which was very interesting and exciting for me and my family. On Wednesday, my family and I made a day of it, starting with an early morning job fair in Oakland. It was quite productive, as i wasn't there seeking employment opportunitites, but my husband and daughter were. I was just there to get the freebies (lol). I adore pens, so i was collecting them at each booth or table, some where very unique, with a pen at one end and a highlighter at the other, and some of them had a little flashlight attachment. I also got varies company represented mugs and cups, keychains, flashdrives, personal mini tablets, and even a company gave away rubik cubes, isn't that something! it brought back memories of the 70's when they were hot, and of course, i only figured it out once during that time, and never could achieve it again, well i am back to square one, because this revised addition of this cube, is far more complicated, because it is in all kinds of crazy positions, and i am still working on it (lol). My husband seem to be pleased with the outcome of this particular job fair, where he has been disappointed at most of the job fairs he has attended around the bay area last year and this year so far. My daughter was also pleased at some of the prospects. Although i don't like the way you obtain a job since the use of the internet, becauses everybody says the same thing, you can go to our website and download the application (i feel in my opinion, this is so very impersonal), what happen to the days, when you can go to a particular facility or company and fill out an application right in the Human Resources or Personnel Office, and sometime you are lucky to be invited, (after review of your application, that very day) for an interview. Remember, the movie BIG, where tom hanks (who was only 13, but looked about 30, because of magic), was interviewed right after filling out his application. Well i know those days are over, but it makes me wonder, when you submit your application online, does it get lost or maybe you're the unlucky application, that they may think they have enough applicates for that particular position, so yours doesn't even get a chance to be reviewed, and it gets tossed. Well, so much for that, i guess you can see, i truly don't like the way things are done in the seeking employment world. We had planned to go to our favorite restaurant, near the previous Oakland Navy Base, (which is the port of Oakland, since the year 2000), but we discovered our favorite restaurant was no longer there, but there was a new restaurant in the same location, and we decided to try this new restaurant. It is called Nellie's, and as we entered, we were very pleased with the appearance, and of course, the great service. As soon as we were seated, we didn't have to wait but a few minutes, for our waiter, to take our order. I loved that this restaurant, offered some of my childhood favorites, growing up in Louisiana. There was shrimp jambalaya, seafood gumbo and of course deep fried oyster and shrimp po boys, (in which i ordered). It took about 15 minutes, and the waitress returns with our plates, and when he placed my plate down, i was so astonished at how large those oysters where, there were six large oysters on a bed of lettuce, and six large prawns on the other side of the lettuce bed., they gave you the often of turning it into a po boy, with the french roll they provided on the plate, there was also some slices of tomato as well., and of course, there house potato salad and french fries on the side. I couldn't wait to indulge into this wonderful meal. Finally we all finished our meal, and we drove over to a long time friend of ours house (Phil Birdsong), and kicked with him for awhile, because it was still too early to go to the city, so we wasted some time with a visit and then we went across the bay bridge to San Francisco. My family and I were invited to a private home to meet our new CEO of the Polycystic Kidney Foundation Headquarters in Missouri. We arrived, and as usual, had to locate a parking place, so my husband dropped my daughter and I off at the front of the building - which had a sign that said (Private Residence), so my daughter and I were baffled as to where exactly did my friend Katherine lived, we had the address on hand, so we went to the front, to the side and finally to the back, she was at her front door to meet us, but her little fluffy poodle, met us first, with a doll in his mouth, that was so adorable, he was a fuzzy white poodle. He jumped on my daughter, but as he attempted to jump on me, i stopped him in his tracks, because he was jumping near my PD catherer, and that could have leaded to trouble, Katherine had a very strange look on her face, as though, i didn't like her pet, but i immediately explained to her, that i was afrai he could cause an injury to my catherer, and she understood right then and there, and took the poodle upstairs and lock him in one of the rooms. I felt bad, but i couldn't take any chances, right! We entered her home, and of course, most of the guest had arrived, along with the CEO. She had a nice spread on her nicely decorated table, so she took our coats, and we retreated to the dinning room, to get our grub on. I promptly complemented on how beautiful her home was. Because we are all CKD patients, she had an assortment of renal friendly appetitizers, such as parmesan chilled asparagus spears, an assortment of finger sandwiches - ranges from turkey, roast beef, chicken salad, and tuna salad. There was also a vegetable with french onion and artichoke dip. And also renal friendly cookies for dessert. There was sparkling apple cider, flavored sparkling water,wine and also latte and espresso for those coffee enthused. I don't drink coffee. My family and I weren't very hungry, as we had just eaten a fantastic meal in Oakland, but we humored them, by eating some of the appetizers. We sat gathered in a circle in the living room, while we continued to snack, there was also some chips and dip on the coffee table in the living room as well. First, the CEO spoke, and then it was on to the introduction of each member of the chapter. I was first, had i been aware of this, i wouldn't have sit by the CEO, but i wanted to hear and concentrate on everything he was speaking about. I wish i was in the middle, because i wasn't ready to be the first to introduce myself, but i got the courage to introduce myself, and to talk about myself and of course, plug my books as well, i use every opportunity i can to plug my books. (lol). I great deal of the members at the reception, were astonished about my publishing these books, but better yet, they were simply amazed at how long i have been living on dialysis (in my 22nd year as we speak). Then the introducing continued with my daughter, and she spoke so eloquently and precise, i was so proud of her, i had never heard her speak that way before. It came around to some that had just recent received the blessing of a cadaver kidney, and there was one that had his kidney for about six months, from his son, who was also there at the meeting as well. There was one CKD patient, a young man, that was just diagnosed with PKD, because of the trauma he experienced during his soccer game in Denver, he stated he is currently under some study in the clinical trials of finding a cure for PKD in Colorado at present, and he is anxiously awaiting for the results of that study. It was on to many more PKD patients, there was a lesbian couple there, who are in the process of having a transplant real soon - her partner is giving her one of her kidneys, that is so touching to hear. It finally came to my husband, who also spoke eloquently and i was so touch at what he ended the introduction with - He said he is always there to support me, even if he leaves this world before me, I will always have his support in spirit. All in all, it was a very productive day, with all that had transpired that day. As we were leaving, I was walking down the stairs in front of the house, it seemed like the stairs felt a little more steeper and also one sided as well, that i started to experience a dizzy spell, i began to walk sideways. I still fine it strange, that the homes in the city, look like they are lending to one side, but when you enter the home, everything is leveled inside, i still can't figure that out, but anyway, this little episode, brought most of the people outside, and they were so concerned about me. I started to feel better, when my husband told me to lend on his shoulder and he took my hand, and guided me from the steps to the street, we didn't have very far too walk. I was so pleased, my husband found a close parking space. It was all good, after i began to feel better. We headed for home, and we all commented on her beautiful home and how enjoyable the reception was and meeting the new CEO. After about 20 minutes, i fell off to sleep, and slept the remainder of the trip home. Well that was my productive day from last thursday. Not much has happened since that day, so until next blog, stay well and compliant with your renal diet and medication regiment. take care and all the best to all my followers. And this is one of my day in the life of a dialysis pts. most of us CKD and PKD patient try our best to live a normal life, inspite of our Chronic Kidney Disease. God is love, love is God Glo

Thursday, April 19, 2012

Hi all, today was my monthly visit with my neph. The time for the session was 11:20 AM, but when we arrived, which was fifteen minutes early, i guess they were running behind. I was used to my visit being at 1:00 PM, prior to my return to hemo for six months, last year, and of course, i was a little pissed, when the PD nurse, gives me the schedule, and i see that it is an earlier time. Well, i wasn't too pissed, because now that my favorite soaps have been cancelled, I have no problem getting ready for my monthly visit with my neph at 11:20 AM. Well, finally at 11:40 AM, i was called in. I did the usual, you know weigh myself and of course the result 46.7kg, which about 103 lbs., and I am aware that i need to try my best to gain more weight, to get back on track to my targeted - 50kg, and i know it is going to take some time, to build all these calories with my renal diet. Now on to my b/p readings, it was very normal readings. I was then given my monthly laboratory report, everything was in normal range, itself for the albumin (protein) and PTH levels. My neph promptly began to discuss my albumin levels - and i responded with, i have tried so many protein products, but the one thing that i have discovered is, protein doesn't have a pleasant taste - i have tried snicker protein bars - which gives me 16 grams of protein and also those milky boost drinks. I then ask my neph, all these years have passed, and why don't they have protein in a pill form, and the way i said it, i guess it was funny to him, because he just laughed and said i really don't know why, maybe that should be something that should be addressed by the varies companies that produce protein products of such, and i just looked at him, but i was thinking to myself, that maybe i would go on the internet, and google some companies, to find out their opinion on this protein issue. Usually, i would get more of my protein intake from these fruit protein drinks called resource, but you can only purchase them from an outside distributor and the one that i deal with, they have went up on the protein drinks, so i had to result to purchasing a protein drink from places like walmart and walgreens, but of course, it is an acquired taste, i really don't like these drinks, those resource drinks are more pleasant tasting, especially when they are ice cold. Enough about that, oh well i will continue to have my challenges with my low protein levels, but i will just chuck it up, and just drink or eat this protein as much as my stomach will allow, and i hope i don't throw it up, because of the taste (lol). Now, my PTH is very low at 88 - the normal range is 150 to 300. It was discovered that i was taking way too much vitamin D, and the twisted thing is that i was only taking it MWF, go figure! my neph is very baffled, how the vitamin D works in my body, so he changed my prescription to only taking it twice a week - Monday and Friday, to see how my PTH levels are doing. My neph did request that a PTH be drawn today, and of course, i wasn't prepared for a blood draw, however, i thought i was going to have an EPO (epogen) shot, but i was told by the PD nurse, that my iron and iron stores are very good and high, and that my EPO has been put on hold, and that is a good thing, because i truly depised these needle sticks. My lungs were then checked, and there is still some diminish on the left side, but the right side is more severely diminished, and i told him, i am scheduled to have a chest x-ray next week, and that will indicate, if i need to have that procedure done again to remove fluid from my right side, because they can only do one lung at a time, i had the left lung done in October of last year, during my six month hemo saga - (i shared this in a previous blog, somewhere around October) It was a very warm day, one of the warmest days in awhile, so I couldn't wait to get out of the unit, and on to enjoy my productive day. I feel so much better when the weather is warm, and i don't need a coat or a jacket. I even wore my sandals and a nice cool shirt with capris. I don't know about other dialysis pts, but it feel so much better healthwise, when the weather is warm and your cooling in your sunglasses and just simply enjoying all the sunshine. Well that is it for now, i hope you guys have a wonderful, enjoyable and relaxing weekend. Until next blog, stay compliant with your renal diet and medication regimen. take care and all the best to you
Glo

Friday, April 13, 2012

Hi all, I have a great deal to share with you. First, last Sunday, was Easter Sunday, and it was an enjoyable, wonderful, spiritual and relaxing day for me and my family. First, i planned to attend Sunrise Services, but that didn't transpire, because I didn't plan on having any issues with my PD cycler, which delayed my planned time to be off the machine by 5:30 AM. Let me break it down to you, i had gotten smoothly through the self testing phase of the therapy setup, and then i continued by connecting the bags and opening the lines, etc. etc, and went on to the primming phase of the treatment setup, but about ten minutes later, the cycler alarms, displaying check bags and lines, so i did the usual protocol, checking for leaks, holes, kinks and possible fibrin in the line, but it appeared to be clear, i then attempt a second time to continue the primming phase, but the alarm went off five minutes later, and then i decided to call the baxter helpline, and they went through the very same scenarios, that i had originally went through, and she then ask me to hold the tubing that sticks out from the cassette holder, and pull them up and down, and i did that, but the alarm went off again, but this time, she stayed on the phone, a few minutes, and then she told me to turn the heater bag over, with the writing faced down, and that didn't work. She was so sad to say, because i could hear it in her voice, i am afraid you will have to get a new second bag, and clamp off the original second bag, and hook up the new 2nd bag to a new line, and i did just that, about 15 minutes later, the cycler displayed connect patient. Yes, it worked, but i wasted a 2.5 bag in the process, oh well, it is all good. I was able to attend the 10:00 AM service instead, and it was a very uplifting service, i enjoyed all the singing and of course, the sermon as well. I even saw a fellow dialysis pt., that i hadn't seen in several months at the unit, as i returned to PD, towards the end of December. It was great seeing him, and he looked great. Since our plans were deferred somewhat, we didn't get a chance to go to Sunday Brunch, so i made a great Easter meal at home, consisting of Braised Cabbage, Corn Beef Brisket, and Pinto Beans w/ dinner rolls of course, a lemon cake for dessert and homemade Lemonade, with lemons from my garden. We sat down later on, as this has been a tradition in my family for many years now to watch (our tape of the Ten Commandments), we missed it on Saturday on TV. Now, even thought i enjoyed Easter Sunday, i am still very concerned about my ongoing saga with acid reflux, heartburn, acid indigestion, you name it, it has got to be one of those health issues, as my throat feels like it is on fire, usually at bedtime, i was told that this occurs, when you eat late, or have a midnite snack, but that is not the case at the moment, because i eat early in the evening, and i didn't have anything to eat during the late night, go figure! i am aware that i was diagnosed with diverticulosis (i hope i spelled that correctly, let alone, i can't even pronounced it right (lol), but anyway, this was discovered during my colonoscopy, back a few years ago. First the dr. gives me the good news, that there were no polys or masses present, i was happy to hear this, but then he continued by saying you do have diverticulosis, and i said what! what is divticulosis (i know i didn't pronounced it right, because he repeated it the correct way - (lol) And me always being curious about anything new to do with my health, especially if it can be harmful, wanted to know what is this diverticulosis. So, he began telling me, by using an example, (like an innertube), this was truly blowing my mind and he continued with that it is small pouches in my colon that bulge outward through weak spots, like an innertube that pokes through places in a tire, and each pouch is called a diverticulum, and when the pouches become infected or inflammed, (so to speak), that is when the condition is called diverticulosis, and then he continued by saying PKD patient have a greater risk of developing diverticulosis. He did stress that i should consider a high fiber diet, and limit seeded food, as well as nuts, as much as possible, to lessen the affects of diverticulosis. Well the reason why i shared this, is because, i got to thinking about this diverticulosis, that i was diagnosed with a few years back. I don't really eat much nuts, and i am not sure if i am following a high fiber diet, but i do have a good bowel movement, all the same, because i was told to avoid getting constipated on PD, so i think i have been following that part of my diet pretty OK. Besides i take stool softeners on the regular, and i do snack on dry prunes and raisins from time to time. Well enough about that. I will be addressing this to my neph at the next monthly visit, you can best believe that. I am still having ongoing issues with fluid buildup around my lungs, due to my return last year temporarily to hemo. I wasn't having these issues prior to temporarily stopping PD, go figure! i know hemo isn't good for me anymore, but well i had to return to hemo in order to have an umblicial hernia repaired, due to my ongoing PD treatment, it is one thing or another with this renal/dialysis life, right! but all in all, i have triumph through every obstacle, that i have had to face in this very unique life, that i have been living for over 20 year. Oh, did i forgot to share that i am in my 22nd year of dialysis treatment (lol). Well don't get it twisted, i am not in anyway proud of this, i am just grateful and blessed to even have dialysis for my continued survival with polycystic kidney disease. With my families love and support, it has gotten me through so much all these years, and i love my husband and daughter with all my heart. You can live a long, happy and productive life on dialysis, no matter, how long it takes to receive the blessing of a cadaver kidney. And that is why i published this 2nd book - sharing all that i have endured, from my predialysis days to my initital hemo treatment and on to the blessing of a first transplant, and etc. etc., Even Hemo vs. PD, in which i have extensive experience and knowledge in both forms of treatments. And i am (i must say) a pretty good cook, and i have shared an array of renal friendly recipes in the cookbook section of both my books, with nutritional facts included on most of the renal friendly recipes, with easy to prepare instructions and of course some pictures of some of the dishes in my 2nd book, which is available on ebook, if you are interested - My Twenty Year Journey with PKD in the Dialysis World or My Renal Life (i know it, i live it). Well that is it for now, stay well and compliant with your renal diet and medication regiment, i know that is easier said than done, yes, this renal diet can be quite challenging from time to time, and i know this all too well (lol). Until my next blog, take care and all the best to my followers.
Glo

Thursday, March 22, 2012

Hi all, today i had my monthly checkup with my neph, and it went OK, but there are still a couple of minerals that need to be addressed, first, my albumin (protein), is very low, the norm is 4.0, and my level is 3.2, so i do need to get cracking on building up the proteins in my body, even though i eat an excessive amount of meat and eggs, I tend to lose an excessive amount of the protein, that i accumulate from the high protein foods that i eat with every exchange, so now i have to result to protein supplments, such as boost high protein drinks, homemade protein shakes, whey protein powder to add to varies dishes and of course, i usually order resource fruit drinks from an outside distributor, but my money is a little funny at this time, so right now i can't afford it, especially with all the co-pays that i am stuck with paying to Kaiser for varies test, procedure and of course surgery, this practically has broken my bank (lol). Maybe next month will look a little more promising where the money is concerned, So like Cuba Gooding said in that movie, "Show me the Money". Now my potassium is also starting to be an issue, so i have got to eat more potassium and also my neph has prescribed a potassium supplement for me, in which i despise taking, because they are large white horse pills, that i have to cut in half, just to be able to swallow them, and then i also have to sort of sand the cut part, because it usually scratches my throat, when i attempt to swallow the half pieces, but there is a 10mg pill, which is small, and i have to take so many to get the adequate dosage per day, and besides these pills have a required taste (yeah! i know, my sentiments exactly, the medication issue saga continues). Now just a few months ago i was on hemo and i didn't have all these issues, go figure! i don't think i was eating any different from my PD days, but my albumin and potassium wasn't an issue with low values, if anything i had to watch my potassium intake, because my potassium would from time to time, get evaluated during my temporary hemo saga. My adjustment back to norm on PD, is very slow, as I was having issues with my energy levels and of course my weight plummeted drastically with this ongoing fluid collection around the lungs issues. The trip thing was i wasn't having any health issues with my weight plummeting, this lung issues and my severe breathing issues from it, prior to transitioning back to hemo. I can't even go up and down the stairs in my home, without getting out of my breathe. I know the summer is coming, and my family and I like going to Yosemite and walking up the trails to see the varies magnificent waterfalls, and i am sure looking forward to that, so i know i have my work cut out for me, if i want to see the beauty of Yosemite Park. Well that is it for now, and remember renal/dialysis pts. compliance is important towards helping you to maintain good health with Chronic Kidney Disease. Until next time, take care and all the best to my many followers.
God is love, Love is God,
Much Love,
Glo

Saturday, March 3, 2012

Hi all, i hope all is well with you guys. I finally got a moment to update my blog, where to start, oh yeah! i finally had that darn chest catherer removed, and good riddens. Although i was so happy to rid myself of this very trying chest accessory, which was nothing but a burden to have, but of course, i am grateful that i was able to do hemo temporary that way, because of my past health issues with graft accesses, but oh well, it is all good, but nonetheless i am so jumping for joy to be back on peritoneal dialysis (PD), but i was still sporting that darn chest catherer, so i was still subjected to continuing these damn bird baths (pardon my french). Finally after another two months of enduring this chest catherer, my neph finally decides to set up an appt. to have the catherer removed. Now for a few weeks, i resumed taking my wonderful relaxing showers. Now, i am struggling with the return of my medication regiment on PD, as when i was on hemo, my iron, potassium supplements, sodium bicarbonate, and i also find myself taking less phosphorus binders, only three with meals and 2 with snacks, vs. five with meals and 3 with snacks while on PD, go figure!, that is why this renal diet can be quite complex and challenging at times, also my rocatrol (vitamin D) was stopped, and also my EPO (epogen)was being administered through my hemodialysis tubing. All these meds were being administered through my tubing, which is one of the advantages of hemo vs. PD, but don't get be wrong, they both have their advantages and disadvantages, something i know all too well, and that i share in my second book - My Twenty Journey with PKD in the Dialysis World. As usual, i have completely strayed from the subject at hand (lol). Now as i was saying, i am having my struggles with resuming those meds that were temporarily stopped during my temp. hemo run last year. Since returning to PD, i find myself, when i am setting up my medication for the week, and i look at each day, and see so much more pills to take, compared to the few i was taking while on hemo, but i will soon stop all this contemplating and take my medication as directed, because it is important to me getting back to my normal weight and energy level. Now on to a more important and pressing topic - it is March - National Kidney Month and i want to share this statement with you, (something i have vigorously been urging people to do and continue the awareness of CKD, and also encouraging organ donation, read on:

Hi all, it’s March - National Kidney Month - and the perfect opportunity to take notice of this very important awareness of Chronic Kidney Disease (better known to many in the renal/dialysis world as CKD). Chronic Kidney Disease is very seriously on the rise in this country, and all around the world for that matter, especially with individuals out there, with a history or family history of diabetes and/or high blood pressure (two of the main causes of CKD), this group of people we urge to very seriously think about getting 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. The kidneys can go unnoticed with possible signs of early stage CKD, and the main reason they can go unnoticed, is the lack of education about kidneys, which should truly be addressed (even with a physical, it could be beneficial to many out there). Though I am aware that many do end up developing ESRD (End Stage Renal Disease - Stage 5), it is not the end of the world, you can live a long and productive life on dialysis, no matter how long it takes to receive the blessing of a living or cadaver kidney transplant, but of course the majority of us, do want the blessing of a kidney transplant (which is by far the best treatment for CKD), and also continuing to encourage organ donation is so very important also, but like I mentioned previously in this post, you can live a long and productive life on dialysis. Knowledge is key, learning all you can about managing good health on dialysis and most importantly staying as compliant as possible with this renal diet (which can be challenging at times) and your particular medication regiment is key. I decided to publish a book a few years ago, to share my entire 20 year journey in the dialysis world, starting from my pre-dialysis days with a few humorous moments, how much the renal world has advanced since my father’s start in the early 70’s and to my pre dialysis days in 1990, and on to my initial start on hem dialysis, my first transplant experience back in 1993 (how much the transplant world has advanced, especially with anti-rejection meds), and the short hospital stay after the surgery. I also share important facts about the minerals in your body, and how important it is in keeping them in normal range. I share as a bonus, an array of renal friendly recipes in the cookbook section of my books, with very important nutritional facts included with easy cooking tips, and also some home remedies passed on from my Grandma Madea (who suffered with the polycystic kidney disease back in the mid 1940’s), to my dad (who developed ESRD back in the early 1970s) and to me with beginning of my saga in the renal world back in 1990. I also share my extensive dialysis experience with both hemo vs. PD, the advantages and disadvantages of both forms of dialysis treatment, and of course some of my family history of Polycystic kidney disease, traced as far back as the 1940’s, a very interesting read and can be potentially very beneficial to pending dialysis pts, as well as the fairly new dialysis pts, and even maybe some of the veteran dialysis pts., like myself, could find it a very interesting read. My 2nd book is also available on ebook as well - My Twenty Year Journey with PKD in the Dialysis World. People I can’t stress this enough, consider being tested for possible early stage CKD, it potentially be very beneficial to many of you all over the world, and remember knowledge is key to managing CKD. Barnes & Nobles has my ebook on sale, if you guys are interested.