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.