Tuesday, October 18, 2011

hi all, i am using my daughter's labtop for the moment, as my labtop mother board has been damaged in some way. It is sweet of her to take a briefer from doing her college studies for a few hours, to let me update my blog. Well another start of the week for my hemo treatment. Every thing is going well, but i see that tech is having her moody issues once again, but i am going to simply ignore her, but she better not say anything to tick me off, because i ain't havin it this early in the morning. This morning i am simply sitting and observing, pts. coming in late, and this one couple, that i truly admire, i watched the wife go through the usual routine, she would be ahead of her husband, whom i guess is busy weighing himself. She rolls the suitcase in, and starts to unload his blankets, a neck pillow and another pillow for his back, she also has his book read, and his own personal cup to place his crush ice in. I just sit there, and watch all this, and said to myself, he is so lucky to have her in his life, especially at how devoted she is, because although most of us have a family member or loved one accompany us to the unit, most don't stay, as my husband only stays to make sure i am hooked up and running smoothly, and then he will leave, especially, it being so early in the morning, (5:30 AM) to be exact, he wants to go back home and get his sleep on and i don't blame him, (because he doesn't get off work every night until 11:30 PM). Remember, i mentioned in a previous blog, that she was so attentive to her husband, getting the partition so that he could do his business in private. I am jealous, because he still urinates somewhat. I truly don't urinate that much at all, a tinkle here, a tinkle there, not enough to say that i am peeing. (lol). I remember back during my pre-dialysis days, when i couldn't control my bladder, it was so out of control, that i had a very embarassing moment at work, which was a true wakeup call, that i need to start dialysis as soon as possible. Something that i share in my 2nd book - My Twenty Year Journey with PKD in the Dialysis World. Well, back to my thinking, one of the RN was curious to know, when will i be scheduled for surgery, and then I said in a vicioious tone, what! are you tired of me being here or something, and she said while laughing, No! i was told that you were only on hemo temporary, so i assumed you would have had your hernia repaired by now, so she continued by asking, what is the reason why they haven't scheduled your surgery. I remarked to her with, i guess you aren't aware of what has transpired since my return to hemo, and she responded i guess not, i continued by giving her the low down on what i have been enduring since my return. I first told her that, my dry weight had to be challenged, because when i transition from PD to Hemo, my dry weight was 52kg, but through the course of the weeks, my renal case manager, ask the RN and PCT to challenge my dry weight, and for some reason, they seem to not be able to reach my dry weight, as i didn't experience the usual drop in b/p or those excruiating cramps in my legs, which most of the time, would indicate that i have reached my dry weight. Because of not being able to target my dry weight, i began to experience breathing difficulty, in which the RN examined my lungs, and informed me that my left side sound diminished. This was on a Saturday, and that night i began to have more breathing difficulty, to the point, that i had to sleep on top of three pillows, to even get a good night sleep. Now, i am aware of the signs of fluid overload from my previous ten year run with hemo. I couldn't breath very well doing the day, so i seek attention at ER, and they did a ct-scan, which showed that i had an excessive amount of fluid around my lungs, and i also had a collapsed lung as well. I was hospitalized for several days, and my target weight was challenged to the point, that i was down to 45kg. Also the ct-scan showed that my adrenal gland was producing way too many hormones, (causing my elevated b/p levels), and also my neph said that i need to have a kidney removed as well. the great thing about this ct-scan is, when i have my adrenal gland removed, i may not need to take so much b/p controlling meds, or i may not even have to take any b/p meds anymore, and that would truly be wonderful, so we will see, when this will all transpire, so the nurse just said, you sure have a great deal on your plate at this present time, and i responded with, yes i know, and i have more that i can write about and share with others, who could be faced with these very same issues on hemo. i also responded with, they also told me that my heart function had decreased, and i wasn't aware of this on PD, because of the fact, that i wasn't having all this shortness of breathe issues, as a matter of a fact, i feel, all this happen during the early month of my return to hemo. I am sitting and looking at those four other people that were sporting a catherer at the time that i started back on hemo, and they are using their grafts and fistulas now, and i am still sitting here using this sometime responding catherer, when will this nightmare end, so that i can return to PD. I miss it so, but yes, there are some advantages on hemo, such as some of the meds, that i have temporary stopped - such as potassium supplements, iron, sodium bicarbonate, and those EPO shots, that are required for PD, so yes, maybe i can be greatful for that, right! and of course, no nightly hookup to the cycler, but having this catherer in my chest is a kill joy. i can't sport any of my large necklaces, i had been wearing a tiny cross pendant necklace. And don't talk about my wardrobe, i am subjected to wearing camisoles underneath a button in the front blouse or shirt, so that it would be easy to get to my catherer with no difficulty, but you know me, i try my best to stay in style as much as i can. I have even invested in the last several months, many colors of camisoles of lace and varies styles. Also because of hemo, i have been wearing a great deal of slip on flats. Well enough about that, i am getting a little disgusted, because my surgery has been put on hold for so long. Well that is about it for now, until next blog, i hope i have some news about my surgery finally being scheduled. I hope to God, that i am not still on hemo, during thanksgiving holiday week. The unit secretary just passed around a memo, stating that the unit will open one hour early on thanksgiving, you know i don't approve of this, because i already come in early enough, and now i have to come in at 4:15 AM to be hooked up at 4:30 AM. Come now! enough is enough, so i will see, if i am still sporting this cath at that time. take care and all the best to my followers. Glo

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hi all, i know i haven't posted since the 1st of October, but i have been busy preparing and planning our san francisco chapter PKD walk for the cure event, which took place on Sunday, Oct 9, 2011. I was up until 1:00 AM on the night before the walk, creating my personal t-shirts for my team. I got up around 7:30 AM, to complete the finishing touches on my t-shirts, it was a family affair, my husband and daughter, helped tremendously with the computer aspect of the project - scanning and making transfer sets, and then fusible webing and ironing on the image - thanks to my husband, he saw an image of a converse gym shoe in one of his Sunday papers, but there was a map on the bottom of the shoe, that we had to remove - so that we can put an image of the Golden Gate Bridge and part of San Francisco in the background, and after three attempts and wasting three transfer sets, the image was a success, now to fuse all those t-shirts, like i said, was a family effort. I couldn't have done all this by myself, though my efforts, were the lettering on the front and back of the t-shirts. Now, on to cooking my samples for the walk - i decided this year, to make seafood pastries (which consist of trinity (chopped finely - bell pepper, red pepper, celery & onions), and also minced ginger and garlic, the seafood - lump lobster (chopped) and crawfish (finely chopped). I also decided to bake some macroons as well). The samples were quite a hit at the walk, but getting back to when my family and I finally were ready to caravan to the walk. We had planned to leave around 10:00 AM, but we didn't leave until 11:00 AM, and when we got to Berkely, the traffic suddenly became bumper to bumper, so now we would be late, as we didn't anticipate this traffic jam. All due to it being fleet week in the city, as well as a 49er game was taking place. Finally, we are at the toll booth, and we could see the blue angels performing in the sky, so we had a little treat, waiting in line to enter the toll booth. It was very exciting to see the blue angels perform and make that really huge heart in the sky, so you could say we were being entertained in the process, courtesy of my dear friend, Veronica Swift who was talking to me on my cell, and she mentioned if we could see the blue angels in the sky performing (I had forgotten about fleet week, worrying about the walk and all)- veronica arrived at the walk, an hour before we did. Finally, we arrived at the walk entrance, and my husband parked in front, to unload my gear for my table. As soon as we got inside of the park, there was a table, ready for me, to setup. I began to setup with my daughter and my friend, Veronica's assistance. I introduced myself to my neighbors, who were there representing their company (Kiehls in Berkeley), they had free samples of lotions, sunscreen, facial cream, keychains, buttons, samples of natural food products (such as granola bars, and a variety of their own named juices). I began to setup my books, for my booksigning, as well as setup the free samples of appetizers, representing the cookbook section of my book - My Renal Life (i know it, i live it) and my 2nd book - My Twenty Year Journey with PKD in the Dialysis World. They did announce that we were suppose to warm up to the electric slide, and in which they ask me to lead, but of course, i got there way too late, to have this segment of the show. A little disappointing, but there is always next year"s walk, right! I will strategize much earlier than i did this year for the planning of the walk. Anyway, it turned out to be a very beautiful and warm day in the city, unlike the last three walks, being cold and also raining. I didn't even need a jacket this time, so i showed off my t-shirt creation with pride, and guess what! i got so many compliments on my t-shirt, so you know i was so proud of myself. It gave me such pleasure, to observe people coming up to my table, inquiring about my books, and me reading excerpts of chapters, that many of the people there could relate to, and also learn from. However, i didn't sell as many copies of my books, as i wanted to, but it was all good anyway, sharing samples from the appetizer section of my cookbook section of both my books. I was so tickled pink, when a teenage girl, picked up one of my hard copies of my 2nd book, and gave it to her mother, something i didn't even see, i was told by my daughter, that this girl gave the copy to her mother. I think she thought the books were free and then my daughter went over to the girl's mother, and ask her if she wanted to purchase my book, but that was not the case, so my daughter took the book back, and everyone at my table, as well as my neighbor's table, began to laugh, uncontrollably. I was laughing so hard, i almost couldn't stop, many were saying let me stop laughing, before i pee on myself, well we know that was not the case with me, i could laugh until i turned blue in the face, and still want get the urge to pee, but i sure wish i could (lol). the walk was suppose to start at 1:00 PM sharp, but because of my late arrival, that were sweet enough to start the walk at 1:30 PM. My husband and daughter went on the walk, but i had to stay at my table, because there were many that didn't walk, and were coming up to my table to inquire about the books and to sample my free treats. There was also a table setup with sandwiches (you know those tortillo round wrap sandwiches, which were very delicious (there were three types of sandwiches - turkey, ham & veggie sandwiches). There was also a large assortment of gatorade, flavored water and arrowhead water - in which they kept chilled in a large ice chest. There was also an assortment of fruits and vegetable platters. And because my appetizers were still hot, they kept flocking to my table, for something hot, and i was amazed that my container, kept those seafood pastries very warm. A girl, named Gabrielle, whom i was communicating by email for several weeks, prior to the walk, actually, her mother came up to my table, and we were chatting about my many years of dialysis history, and as i was continuing to chat with her, Gabrielle (a girl that i had been communicating for several weeks, prior to the walk event, who had mentioned that her mother had a recent kidney transplant), came up to the table, and said this is my mother, and we all just laugh, because i had no idea, that this lady, that came to my table, was her mother, so it was an enormous pleasure meeting them both, but we met in a strange way, i must say. Her mom, purchased a copy of my second book. The trip thing was, i gave her a copy, and continued to chat with her, not knowing that i didn't collect the money from her, she had to interrupt me, and say, you forgot to take the money. Boy! am i a basket case, but i guess i was so excited to meet her mother, and of course, to meet them both. Gabrielle's mother and I chatted for quite awhile, and i plum forgot her name, just that quick. I will always refer to her as Gabrielle's mom (lol). Well, all the teams are returning to the park site, and now it is time to rock and roll. Jesse Brewster was there with his band, entertaining the crowd, and also selling his first CD release to the crowd. I purchase a copy. We even had a DJ that was playing a great deal of oldies (60's, 70's, 80's, 90's and a little bit of today's sounds). All in all, it was a very enjoyable, exciting and productive day. Though we didn't reach our goal for the fundraising, the walk event maybe over, but it is not too late, to continue fundraising, if you are interested in submitting a donation - go online to www.pkdcure.org/sanfranciscowalk and search my team - Glomoore team, to help us with the funding for the continued research to find a cure for PKD, as well as CKD (which is the resulting affect from PKD). Well, that is it for my blogging today, until next time, take care and all the best to you guys. Oh, my birthday is in a couple of days, (Oct 11), and my husband has planned something special for me, i am so excited and i can't wait, especially since all that i have endured since my recent return to hemo, temporary, and if you have been following my blogs since then, you know exactly what i have been going through, so yes, i deserve to enjoy my birthday, especially this year, right! God has truly blessed me, to triumph through all that i have been enduring these past several months.

Saturday, October 1, 2011

hi all, i know it has been about a week, since my last blog post. Well, i am pleased to say, that that nasty disposition PCT, (patient care tech for those that aren't familiar with this staff abbreviation). She has been so nice to me lately, not even once, did she ask me what time i was scheduled to be hook to the dialyzer. I do think it is because, i shared my continued issues that i had with her, with my neph, as well as the renal care manager. They must have said something to her. You guys, she is being so nice, that i think she is overkilling me with kindness. Coming around what seems like four times, during my treatment session, and asking how i feel, or is everything alright. What gives! she is even become interested in my fashion sense, saying things like, i like your style, where do you buy your clothes, this really took me for a loop, as i didn't think she paid any attention to whatever i was wearing. We even talked about all the sales, that are going on at our Neighborhood Mall, ain't that something. And when i get ready to leave, after my session, she says, have a nice weekend, and i tell her the same in return. Things are so much more pleasant now, so maybe i can have more pleasant treatment sessions, and not have to be all angry, because of an encounter with her of sorts. Now, on with my other blogging, i notice that a patient name - Bernard, an asian, that i became very good friends with, well, mainly my daughter, who always chats with him, before visiting my station. I notice that he hasn't been at the unit, for several days, so i inquired to a PCT about him, and she said she can't tell me where he is at present, and she suggest that i ask an RN about him. From my many years of encountering this issue, the pt. is usually been hospitalized, on vacation, or transfered to another unit, or the best reason is, they have received the blessing of a kidney transplant or pancreas and kidney transplant. I really don't know what she meant by this, and i didn't know that a patients whereabouts were sacred, it is so twisted how they try to be so secretive about any of the pts. at the unit. I feel, we as pts. form a certain bound to one another, and to me that is so very touching, although there are some pts. that prefer to keep to themselves, but in my opinion, that is not very healthy for any pt. to stay closed off from others at the unit. I have been observing and experiencing these protocols at varies units for well over two decades now, and i see we are still having these issues, even today. I am aware, that when i return to hemo temporary, that some of the techs, that i was acquainted with, during my previous ten year run on hemo, seem so skeptic, to even say hi to me, or to just acknowledge that they have know me for a very long time, but i won't fret over it, all i need to be concentrating on, is having my surgery, and patiently awaiting my return to PD, and for me, i am vigorously waiting for that day, mainly because i don't particulary like doing treatment from a catherer. i was watching an elderly male latin descent pt. across from me (Orlando's), wife placing partitions around him, and you know i was curious, just as i observed many other pts. wondering what is going to transpire, so i continued to watch this pt. be reclined upright, and he then stands up, and i could see his pants drop to his ankles, by looking down under the partition, by then, i am wondering what in the world is going on over there, because the machine makes such loud sounds, that i couldn't hear, any of what was going on over there, you know just me being nosey (lol)and of course, this is a little distraction for me and as well as other pts. observing, and yes, this could help to pass some of this boredome time away for most of us pts (lol). Finally, his wife pulls his pants back up and continues to sat him way back in the recliner, the partitions were then removed, and as his wife was returning back to his station, i had to ask her, why did she put the partitions around her husband, and she remarks, with he had to urinate, and i was so surprised, and remarked with, he still has a good urinating flow, and i continued by asking, why is he on dialysis? And she said because he doesn't have enough function to not be on dialysis. At that point, i was thinking that if he can urinate somewhat, then he must be getting some of his toxins and excess fluid off. He doesn't need but, 2 1/2 hrs. of hemo treatment, and that is great, i remember when there was a time, when i didn't need but 2 1/2 hrs. of treatment - MWF. and i was still urinating, but not once, did i need to use it, during my treatment, well anyway, i guess Orlando's kidneys still have a little kick in them, because he got the urge on the machine (lol), i ain't mad at him, but i am a little jealous of him, he probably does well with his fluid intake. When i started PD, after my ten year run on hemo, within a year, i wasn't urinating much at all anymore, but since my return to hemo, i am starting to urinating again, but not much, just enough to hear the precious sounds of just a little urinating, where i hadn't heard anything, but a little tinkling from time to time, while on PD. i know what you non-dialysis followers are saying, all this pissing and urinating talk, what can i say, this is our lingo in the renal/dialysis world, it is all about piss and urinating, (something most of us dialysis pts. are deprived of, and many of us, for a great deal of years, like myself). Well so much for that. Oh wow! why am i seeing so many pts. wheeling a suitcase in the unit, boy has the dialysis life changed, since my previous 10 year saga on hemo. I guess it is because, since the airline type upright rolling suitcases, was made available for public purchase, and they have truly become very affordable in last decade, that hemo pts. began to purchase them, to house their many anemitites, such as their blanket or blankets, some reading material, and course today, many are breaking their labtops out, MP3 players, and now their e-books - such as the nook, e-reader or kindle, to keep them entertained, because at our unit, we have a selective few stations on the individual TVs provided for the pts. entertainment usage, and you can just hang up Saturdays, (there is nothing on those TVs), that is why i bring my nook and MP3 player, to keep me entertained, although when i have a craft project to work on, i bring my crafting to keep me entertained. I also do word search, to pacify myself. I was at this unit, ten years ago, and we had the best cable setup, i could even watch HSN, QVC and Shop NBC, although at that time, i couldn't order anything, because i didn't own a cell phone. Oh, i wanted to share something to do with PD, i recently read a post, that a husband was crying out for help in finding a solution to his wife's drain fluid issues, which were causing problems with their plumbing, and i know all too well about these issues, as i dealt with them in the initial beginning of my 10 yr. PD saga. I shared with him, my plight with this issue, and i also shared our solution with him as well. I continued by saying, and i don't know why the PD nurse doesn't warn their new PD pts. that using the drain lines, and draining their solution in the toilet, that when the solution is airborne, that it becomes a jell like substance, which can cause potential trouble with clogging in the plumbing, but no, they say something when you actually experience this, go figure! maybe they don't share this with their pts., because it may discouraged them from choosing PD over Hemo. Oh, if any of you PD pts. have issues with your plumbing and PD solution, i told this f/b friend, that my husband flushes our toilet with Rid-X once a month, and it has worked ever since, no more leaking or plumbing issues. Well, that is it for my blogging today, i need to get back to my PKD walk business. Until next blog, take care and all the best to you guys. Glo