Wednesday, January 18, 2012

HI All, i know it has been sometime since my last blog, and i must first apologize for staying away for so long. If you are a regular follower of my blog, you should be aware that i have been through it and back, this past summer, since my transition from PD to hemo, due to the development of an umblicial hernia, (in which i developed during my six year of PD), didn't began to wreak havoc on my body, until early last summer. I returned to Hemo, in good faith, that i would be having this hernia repaired shortly thereafter, and i wouldn't have to endure this perm cath in my chest for no more than two months, at the most, but that didn't transpire, about a month into my hemo treatment, i was having major problems with fluid collecting around my lungs, causing major breathing issues (to the point, that i had to sleep on two to three pillows to even get a restful night of sleep). My neph realized the severity of this lung issue, and that hemo treatment wasn't removing the excessive fluid much, (and the one thing i do know, is i do watch my fluid intake very closely), so i know it wasn't anything to do with me over indulging on my fluid intake, as a matter of a fact, i would only have a glass of orange juice in the morning with my breakfast, and for lunch, i would drank a boost protein drink (for much needed protein, that i very seriously needed). Now, what truly delayed this hernia repair surgery, was the fact, that my neph wanted desperately to have an andrenal gland removed, because he discovered that the hormones produced from this gland, was causing my elevated blood pressure (and that if i have a gland removed, i may not have to no longer take so much b/p controlling meds, or even take any at all, and of course, i was all for that, but all this soon became very complicated, because he also wanted to remove a kidney in the process, and this was because, my polycystic kidney disease, had caused my kidneys to become very enormous, and crowding in my other organs (which can also lessen my risk for a re occuring hernia, if a kidney was removed). After my neph discuss this with the surgeon, it was on to the issues with my lungs. I had a echocardiogram ordered by my cardiologist, because she was baffled as to how this all happen in such a short period of time. I had, had an angiogram earlier last year, and she was pleased with the results, and gave the OK to go ahead with the IVIG procedure at Cedar Sinai Medical Center (LA). They also requested that i have a kidney removed before they could proceed with this procedure (to help in lowering my antibody levels (in which that is the sole reason, why i haven't received the blessing of a 2nd cadaver kidney), and that is another story for another time. Now back to the story at hand, after having this procedure to have fluid removed from the left side of my lungs, i soon began to feel better, but i was told by the dr. that she could only do one side at a time, and that i still had some dimishing around the right side of my lungs, and that i may have to have the right side down as well, but that never happened. Soon i was back to the breathing issues, (shortness of breath), sleeping on three pillows for restful sleep, and coughing consistently. I immediately brought this to the attention of my neph, and he said i truly needed to see my cardiologist as soon as possible. To be honest with you, i had my theory, as to what actually occurred during my early transition back to hemo, (this perm cath, began to be a problem, i was given that med, to dissolve the clots), and it worked for me three times, but that thursday, before New Years, they gave me the med (2 hours before), and then began to start my hemo treatment, but it proved unsuccessful during the first hour of treatment, the venuous line was running very high, and my blood flow, wouldn't get no higher than 250, it was also great that my neph was there that day making his monthly patient rounds, he examined me, and saw that my hernia repair was completely healed, so he said i needed to report to the PD department to get started on PD immediately. I did, and was given instructions to do manuals for the first few days, and to try to take off as much fluid as i could (so i used the strongest strength dextrose - 4.25 - two red bags. I was also told to not move around while dwelling, to lay flat, as not to cause any harm with the newly repaired hernia, which could come back at anytime, with the dwelling of all that fluid, so i followed the instructions, and everything went well, so i was permitted to use my cycler on the next treatment, which was a 10 hour session at night, and that went well. However, i was still having issues with fluid overload, and like i said, i do have a theory, that this darn chest cath that i am sporting, is the culprit. I discussed this deeply with my heart dr, and she was in agreement, she even showed me an x-ray of my heart and lungs, from an x-ray down during the early spring months, vs. the latest x-ray, which showed a big difference. As i was lying down, while she examined me, she examined my neck and veins as well, and pointed out to my 25 year old med student daughter, that the fluid was steady collecting in a vein on the right side of my neck, which is where my perm cath is located as well. She also said why haven't you had that catherer removed yet, and i couldn't even give her an explanation as to why, because it was up to my neph to have this scheduled to be removed, however, he did tell me some bogus explanation, like we want to make sure the PD is working fine, before we have the catherer removed, just in case you will have to have some temporary hemo, but that is bull, my PD cath is working just fine and my treatments are going well on the cycler. It was planned for me to return to PD the first of the year, but because of all my issues with this perm cath, and i had to immediately return to PD, all my New Years holiday plans were a bust (and because new year's eve is my wedding anniversary, and i thought it would be nice to celebrate, and not have to cut the night short, because of my scheduled cycler treatment,the hemo would have been beneficial for my anniversary, oh well enough about that, i am starting to sound pitiful, and i am much stronger than that. Well this is my saga in a nutshell. I still haven't as of yet, been scheduled to have this perm cath removed, and i am truly sick of taking all these bird baths, so we will see, when i see my neph next week, if he will finally schedule to have this perm cath removed, i know that it will make my life much more bearable, and i know all this lung issues will slowly began to resolve. I know i am not a doctor, but living and coping with PKD and dialysis for as long as i have, i know my body, and how i should feel, as far as energy and strength goes, and i haven't had much of that since my return to hemo back in July of last year, plus i am losing some serious body weight (i was 52kg on my return to hemo, and within a month, i was down to 43kg, taking me down to a 98 lb weakling, but lately since trying to remove more fluid with a strong PD solution, i was down to 93 lbs, and this is not acceptable, i can't wear any of my pants, plus my underwear is beginning to fall off me (there are times, when my underwear is down by my knees, and this has never happened before, i had to go out and practically invested in yes, little girls panties to fit comfortably (lol). To be honest with you, i had to muscle up the strength to even type this blog. I am now getting very fatigue and exhausted, and besides it is time for my nightly cycler treatment to began, so until next time, and don't get discouraged, if i take so long to blog again, but just remember, i had plenty to blog about during my hemo days, returning to PD, there isn't much drama going on, vs. all the drama that goes on at the hemodialysis department of the unit, but i will from time to time, keep you posted on anything that i experience or have knowledge of, that could potentially be beneficial to many of my PD followers out there, and i will let you know when this cath is going to be removed, and most importantly how well i will recuperate from having it removed, i know in my soul, that i will triumph over all these trials and tribulations, (just like i have in the past, during these 20 years), that i have had to endure during this temp hemo saga. Until next blog, stay well and compliant with whatever is needed to keep yourself healthy, and learn all you can, because knowledge is key, in a life with dialysis. due to how ill i have been, i hope this blog makes sense. (lol)

Sunday, December 18, 2011

Hi all, and Happy Holidays! Saturday's treatment went very well, my blood flow was at 400 for the entire 3 hr. 15 min. treatment session, but let me get back to the beginning of the morning of the treatment. I came in at 6:00 AM, and did the usual weigh, and then preceeded to my regular assigned chair. I am feeling so much better in the last few days, i came in with a smile on my face, and greeted varies fellow pts, as well as techs and nurses, but i can't understand for the life of me, why some of the techs and nurses at our unit, seem to be in a sort of funky mood, (so to speak), that when i would say good morning to him or her, it is though, they are struggling with just saying those two delightful words to me, i feel that most of us patients, do come in from time to time, not feeling our best, but we still have the kind consideration to say good morning to those varies techs and/or nurses. Now don't get me wrong, there are some that say good morning to me first, and that truly pleases me, and makes it so much easier to endure the hours of treatment, with much peace of mind. I am aware that some may come into the unit, with some personal issues that they may have experience that morning prior to entering the unit, but why bring your problems or issues to the unit, and take it out on your dialysis pts., what you should be taking into consideration is the fact, that without us dialysis pts, you wouldn't have a secure job (especially with the economy the way it is these days), they really need to get a clue, and wakeup and smell the coffee, and try their best to show some kindness to their fellow dialysis pts., well so much for that. As you usual, i am not put on, at a decent time, still waiting with other dialysis pts. as well, especially this being Saturday, and i had plan on doing some much needed christmas shopping (with my college daughter) after hemo treatment, that i had been putting off and avoiding all these weeks (lol). Now, because of this late put on, i have to go shopping a little later on, and have to put up with all the chaos, with parking, as well as waiting in these long lines at the register, they should have a line, just for people that are disabled or handicapped, right! and that of course, could be very long as well, as i notice that trying to find handicapped parking, is very difficult in itself. All the handicapped spaces are usually taken as well. I was forced to park, almost outside of the Mall parking lot, ain't that something, that i am sure, many of you out there, are coping with during this holiday season, right! Well, it is all good. I never dreamed possible, that i would become so exhausted and fatigue, just shopping, there was a time, even being on dialysis, that i could shop until i drop, and maybe that is because i am in my mid 50's and still on dialysis, so maybe that should be taken into consideration. I just took a moment here and there, and sat and rest for about 15 minutes at a time. At times, it was very difficult to find somewhere to sit, and i noticed there were even children sitting, like they are so tired from shopping, i even was forced to sat on the corner of a shoe display in Macy's, and people were just looking at me, some look at me with pity, and some just observed me with confusement (especially with that big bandage showing throught my blouse) that in itself, makes me look like i am ill and in pain, and i just continued to chill and rest, until my energy returned somewhat. and i was able to continue on with my christmas shopping. My daughter was a big help in holding my purse and the packages, because for some reason, just holding my purse, (which is enormous - lol), would exhauste me somewhat, go figure! I even observed some patrons in wheelchairs, so i thought to myself, (i should be ashamed of myself, i do have leg capability, right!), let me muscle up the energy, to continue with this shopping, however, i did do some of my shopping online, but it is very beneficial if i would frequent the actual stores, such as Macy's, JC Penneys, and Sears, because if you go into the store, they have so many clearance items, with as much as 50% off, and then when you go to the register, they even inform you of an additional discount of as much as 20% more or even if you by one item, you get a second item for free, ( just love holiday shopping), ain't that something!, so yes, dialysis pts. muscle up the strength to take a trip to the mall, and indulge in these benefits for your gift shopping, OK. I want to thank my friend, Alton Milton, (who is a transplant recipient), on sharing those you tube vidoe on facebook, that truly take me back down to memory lane, (i even think about the time for a moment, when i wasn't on dialysis, when i first heard these varies tunes, not a care in the world about my health). He always brightens my day, sharing these varies videos, just keep them coming my friend, i look forward to what he will surprise me with next. Much love to him, and all the best to Alton and his family this holiday season. Now, if any of my followers, have touchscreen tablets, such as any ereaders, ipad, ipod, kindle, nook, any electronic way of downloading books to their mechanism, my 2nd book - My Twenty Year Journey with PKD in the Dialysis World - is available on ebook, very easy simple reading, and i have tried my best to share the meaning of varies technical words, used throughout my book. You can purchase it at xlibris.com, (my publisher), barnes & nobles, and you can also google my name and title of my books, where varies bookstores and outlets, that have discounted my books, as well as my 2nd book on ebook. I have shared so much in my 2nd book, as a briefer, (my pre-dialysis days, which have improved so much since my diagnose of ESRD back in 1990), a great deal is shared about those very important minerals and how important it is to keep them in normal range, so that you can maintain good health on dialysis, and most importantly i have shared ways of how to keep those minerals in normal range, with the diet as well as your medication regiment. I also share my first transplant experience (though the medication has changed somewhat, the scenarios that surround the post transplant protocol, hasn't changed much), i also share an array of renal friendly recipes as a bonus, in the cookbook section of my book, with very important nutritional facts, to help you to better understand this very complex renal diet, which has a stigma of restriction attached to it, that i know and experience all too well all these years. I even share my extensive experience with both hemo as well as PD, and the advantages and disadvantages of both of these forms of dialysis treatment. I also share my transition from hemo to PD, and why! and also my transition back to hemo from PD, which couldn't be avoided, and why i had to return. Also my development of congestive heart failure, during my ten year run with hemo, and mainly why it occur, and most importantly ways of preventing it from happening to you, or preventing it from re occuring with some fellow dialysis pts. There is so much that i have packed into this 2nd book, that i am sure you can benefit from my many years of dialysis experience and of course, the knowledge, that i have achieved all these years. Downloading my book, is a more inexpensive way of owning my book, that could potentially become your dialysis bible (so to speak), you can refer to it, from time to time, if you experience some of the varies health issues that i have coped with all these years, and i hope in my heart, that my books, could potentially be beneficial to so many out there faced with dialysis for their continued survival. I don't protest to know everything there is to know about the renal/dialysis life, but i am here to say i have experience and learned a great deal living the dialysis life this way for so long so far. 22 years and still going strong, need i say more! Well that is it for my blogging today, until my next blog, i wish all my followers all the best, and Merry Christmas, and with much happiness, good health and prosperity for the upcoming New Year. And please chime in, with your thoughts, concerns and similar experiences on my blog, i do look forward to receiving all your thoughts, concerns and experiences. Get tested for possible early diagnose of CKD, if you haven't been tested, (especially those with a history of diabetes and/or high blood pressure (two of the main causes of CKD), early diagnose can be so beneficial, to so many out there, because i can't stress it enough - preventive measures can be taken in prolonging CKD, and even reverse the progression in some cases. People the awareness needs to continue to be spread in a very serious way, about CKD. We need some media attention, (that we are not getting enough of), Help us get our voices heard from the renal/dialysis communities in the USA and all over the world for that matter. Sending much love and concern from the bay area. Glo

Sunday, December 11, 2011

Sunday, December 11, 2011


Hi all, & Happy Holidays to you all. Wow! i do have a great deal of blogging to catch up on, so i will start with, the day of my double hernia surgery, Wednesday, December 7, 2011, well the night before the scheduled surgery that morning, i had to do a little aseptic cleaning, hours before the surgery. Let me share something with you, before i get too deep into my actual surgery day. I saw the surgeon, Dr. Besman, two weeks before the surgery, for a pre-op visit, you know to see the surgeon, and then the anthesiologist. After my clinic visit with, Dr. Besman, he tells me i need to see his nurse assistant, before departing, so i thought that might be, to go over the scenarios about the upcoming hernia surgery, but she hands me this burgundy colored packet, which contained some sort of aseptic cleansing kit, and i thought to myself, what is this all about? she said i had to cleanse my body and the area, where my surgery is suppose to be repaired, and then i looked at her, and said, when did this all happen, I said with surprise, "So i said viciously, so the patient has to do their own cleansing of their body, before surgery" and she said, it is a new policy enforced, but we will inspect the body, before surgery to make sure that the body is well cleansed and sanitary for the surgery, and i responded with, I have had a past hernia repair back in 2006, and the cleansing was done in the surgery room, so what gives! I began to explain to her, that i had been forced to take sponge baths, since my return to hemo temporary, in order, to have my double hernia repaired, and this is because, i have a temp cath in my chest, which it is very important, to not get it wet for a potential risk of infection, and i think in my opinion, this is just more for me to cope with, doing my daily cleansing of my PD cath, plus this hernia area as well. So, i just said, well if this is required, i will try to do my best to cleanse it as best as i can. She even gave me a sheet of paper, with the instructions on how to cleanse the area. I thought to myself, now, on top of the anxiety, that i felt the day before my surgery, i have to carefully the night before do all this cleansing, right along with my daily PD cath cleansing, as well as my sponge bath all over my body, and carefully cleanse my surgerical area. I got through all this, now back to that tuesday night before the surgery, i guess you know, i didn't get much sleep, as i had to be up and ready to leave around 5:30 AM, i was requested to be there at 6:00 AM, for registration, and the usual disrobing and cleansing inspection from a surgerical nurse. When i arrived, there were about 1/2 dozen patients already sitting and waiting in the surgery center registration room, my husband and daughter accompany me to the hospital, so i felt pretty comfortable and calm at that moment, about 15 minutes, i was called to come up to the booth to register. I was shocked when i finish the registering aspect of the drill, but she startled me with these words, (i truly didn't expect to hear), after she took my kaiser card and driver's license, she informed me that i had a co-pay of $175.00, boy things have changed, since my past hernia repair back in 2006, Bush has truly did a number on us longtime insurance holders, all these co-pays, and something i think, why am i even paying insurance premiums every month, what in the hell is it going towards, well i could only pay half, as i didn't expect to even have to pay any money, it was a good thing, i had one of my credit cards with me, because she wouldn't have had no alternative but to bill me, right! Well on with the scenarios, there was this retired elderly guy, who is a longtime volunteer at kaiser, so he was directing instructions to my husband and daughter, stating that they could sit in the waiting room, outside my hospital room, and that they could even go get breakfast in the coffee shop of the hospital, and i guess i wasn't really paying attention or listening to him, and i attempted to go sit in the waiting room, and he promptly said before i could sit down, the volunteer remarks with "Aren't you the patient", and at that moment, i felt so stupid, and said yes i am, "well you need to come with me, so he escorted me to another area, where there were was this very large room, with partition station lined up on either side. I was told to go into this particular stall, and disrobe, everything, and remove all jewelry, well i didn't really have much jewelry on, but i did have my diamond stud earrings still on, that i forgot to remove the night before. It was a very pleasant atmostphere in this room, (some pts. already fully covered and lying down comfortable in all that warmth, i guess just waiting to be wheeled into the OR), inspite of all the anxiety i was experiencing. They even had this new way of keeping you warm, it was this quilted white covering, that had a suction pipe attached to it, to distribute the heat, and yes, i was warmed up in no time, and it was to the point, that when the nurse came in, she took my temp and it was 101.5, and she said you maybe running a fever, and thought to myself, i don't feel any chills, and that is normally what i experience, when my temperature maybe going up, so she decided to do a manual temp, something else that was very new to me, she ran this temperature mechanism across my forhead, and the temp read - 98.4, so she said, the temperature on this bed warmer, maybe too hot, but i wasn't complaining, i was feeling so warm and comfortable, that i wasn't aware that i was burning up with warmth (lol). All that morning, i was having visitor after visitor, varies doctors, nurses, anthesiologist, and even staff, that i had known from my many years of being a patient at this hospital. I started getting confused as to how many staff personnel was looking over my chart. Now, it is time to do my IV, (issues, issues, issues), i know this was going to be a challenge, as i have dealt with this so much throughout my 20 some years of hospital life (lol). The nurse was glad that i was so warm from that warming gadget, that my veins were very visible, so she saw a vien, that she was excited to say, that could work, but of course, as she inserted the needle, that little sucker, did what it usually does, run and hide, i think my veins have a mind of their own,(they despise needles), especially being very small veins, and tricky at the same time, she did finally get the needle in, but no blood returned, and then as usual it began to blow, so she had to look further at my right arm, and try to find a cooperative vein, and she didn't have much success with this second stick, so finally the anthesiolgoist, took a look at my veins, and was very eager to take on the challenge, and at that moment, i thought in my mind, what am i, a contest to win, like who will succeed at this task, well the anethesologist, (i hope i am spelling this right, (lol), i never could spell this word. He finally succeeded in getting a pretty good IV on me. It is now, about 7:30 AM, and Dr. Besman, the surgeon finally arrives, and comes in, to say hi and say that he is ready to rock and roll. Though he didn't have to go over, how he was going to proceed with the repair of the hernia,(because he discuss this with me, during the pre-op visit), He was ready to get started. It is now, 7:45 AM, and my bed is then wheeled into the OR, i am then told to transfer over to their surgerical bed, and then they do another cleansing of my hernia site, and of course, the shaving of my private area, and then i am told, to lay both my arms straight out on this narrow steel like tables on either side of my arms. One arm is used for the b/p cuff, and the other where my IV is stationed, i am then told that they are giving me a local sedation med, and of course, i become very drowsy and fatigue, i could faintly hear the music, that i could vibratedly hear, when i first entered the OR room, i guess i am just about asleep. The surgery was for about an hour and 1/2, and i woke up slowly, to another room, and kinda glimpsed at the nurse, that was sitting next to my bed. She smiled and said, everything went well, how are you feeling, well, i guess, i was having much difficulty coming out of that sedated med, that i fell back off to sleep, but the nurse insist, that i stay awake, and then she didn't waste anytime, telling me, that she was going to put me in a wheelchair for the remainder of the time, i remember when there was a time back in 2006, since my last surgerical procedure, that they didn't rush you out of the bed, so yes, everything has changed, there is no compassion or concern anymore for the patient, and as i aware that it was an outpatient surgery, i don't remember being treated this way ever. My husband was summoned to help me stay awake, and then the nurse had the nerve to say, now that your husband is here, he can help you get dress, by this time, it is 12 Noon, because i was glimpsing at the big clock on the wall facing me. Boy! this nurse, was in such a hurry to get me out of there, not even asking if i had any pain of such, well to my surprise i wasn't having any discomfort or pain of such. I finally got dressed, and she came back with the discharge papers. And i was wheeled to the front lobby, and my husband drove up, and i was on my way home, but before i could go home, my husband had to pick up my discharge prescriptions, which included painkillers as well, but there was so much confusement with my med order, that my husband had to return to kaiser, because the doctor didn't fill the orders for an outside pharmacy, (in which i am on my husband's military insurance), we were running around in circles, that finally i had to call my neph office, to find out, how am i going to get a prescription for an outside pharmacy, by this time, an hour had past, and surely, my sedation med had warned off, and i was beginning to have very excruiating pain, that i became angry and frustrated, this only made my husband more angry and disgusted, finally my neph called back and spoke with Dr. Besman, and this issue was finally remedied, as soon as they filled the order at Kaiser, in which i had to pay out of pocket, at the time, i didn't care about the cost for the med. All i wanted was relief. I popped two of those painkillers in my mouth, and i was glad my husband had a bottle of water in the car, but of course, it took about an half hour before the pills began to kick in, so i had to agonize for awhile, until they did. I am finally home and comfortable, and of course, the painkillers made me very sleepy, so i slept most of the afternoon, into the evening. More to share, about my very next day after surgery, at the unit, and that is detailed with a great deal of drama. Now about the day after surgery, thursday, December 8, 2011, I arrived at the unit at 5:15 AM, as usual to be put on by 5:30 AM, but that didn't occur. First, i was walking really slowly towards the weight machine, and then i walked slowly over to my chair, as i was walking, varies fellow pts. saw that i was kinda struggling to get to my chair, so i shared with them, that i had, had double hernia surgery repair on wednesday, it was so sweet, they showed so much concern for me. As i made it to my chair, i decided to stand, because if i would have sat down, it would've been very difficult for me to stand back up, so a PCT ask me why i was standing at my chair, and i explained to him, that i had had a double hernia surgery, and he said, just sat down, and of course, it was very painful for me to sit in that position, because bending with this incision wasn't very pleasant for me, finally at 6:30, the nurse got around to getting me setup for hemo treatment. The PCT and nurse, were still going slow with everything. I was sitting and then the PCT tech ask me for a standing b/p, and that is when my husband stepped in and remarked with she can't be sitting and standing with that incision in her belly. The PCT kinda had an attitude, and she went across to another pt. to assist the nurse with another catherer pt, but the nurse said, you need to get back over here, because i am ready to connect her lines, and she did have consideration to tell the PCT, that she can skip the standing b/p, because i was obviously experiencing some pain and discomfort at the time. I was so miserable this day, it wasn't a very pleasant run, because the alarms kept going off, after even a half hour of treatment, it was evidence, that my blood was beginning to clot, because they were given instructions to hold my heparin for three treatments after my surgery, but that proved to not be feasible, as i had gotten into 1 hr. and 24 minutes of my treatment, they decided to discard my dialyzer and the tubing, and start all over, but even after 14 minutes into the treatment, it was decided that i needed to stop the treatment, and return an hour early on tuesday, for some medication to help with the clotting, and they would send a message, to ask the neph to start the heparin again on tuesday. I was pleased with this, though i didn't receive my full treatment, i wasn't very comfortable doing the treatment anyway, that i think God was in this plan, for me to go home, and recuperate some more and take some pain meds, so that i can rest comfortably. As i am aware, that they didn't take much off, so i really needed to monitor my fluids real closely, because after all this is Saturday, and i have Saturday, plus Sunday and Monday, to go without treatment, but i know i have the will power to do this, because i have done this in the past on hemo, with much success, so no worries. I hope on tuesday, i am put on at a decent hour. Tuesday, December 6, 2011, i was put on at a ridiculous hour, i arrived at 5:15AM, my usual time, and wasn't put on until 7:20 AM, and they come up with some bogus excuse, like they are adjusting to new protocol in the unit, and that we patients should bare with them, but what i don't understand is, if they know they are going to be behind putting patients on, why not give them a courtesy call, not to come at the usual time, but an hour later, so that they wouldn't have to sit around looking like fools, just waiting around to be hooked up to the machine, but no, they just have the patients coming in at their regular time, and sitting around in confusement, because of what happened tuesday at the unit, i decided to come in on Saturday, a little later, like a half hour later, and guess what! i was still sitting around for some time, until i was finally put on for treatment. The way things are going at the unit, it doesn't look like we patients are going to be back to our regular scheduled time for awhile, and in the meantime, i will come in a half hour later at each treatment, until i see that they have gotten a little more organized and abiding by our scheduled treatment sessions. Well, that is it for now, until next blog. Happy Holidays! to you all. take care and all the best to all my followers of my blog. Oh! I am feeling much better, minimum pain now, maybe it will have subsided all the way by Monday.
Glo

Friday, November 25, 2011 - Black Friday

Hi All, i hope all you guys had a wonderful, enjoyable and relaxing thanksgiving. Mine was awesome, the first time in a long time, my mom, two sisters and their families were all here in my home to celebrate thanksgiving with my family and I. Although it didn't start off so pleasantly. I was requested by the unit, to come in an hour early for my scheduled treatment, in which i obliged without hesitation, as i was going to my car (in the rain), my sisters had just arrived in their van, from southern california, (about 4:45 AM), i didn't have anytime for hugs and a chat, and besides it was pouring down raining, so i just waved to them all, and left for the unit. When i arrived, i soon discovered that they were backed up, and that i want be put on for another half hour, which it took unit 6:30 AM, before i was put on, which was my actual regular put on time, go figure! i just wasted my time, rushing to the unit, after getting only three hours of sleep, as i was cooking prior to that time, (all night), preparing my thanksgiving meal with my mom's assistance, she also flew up to sacramento, to help me clean up the house, before the rest of the family arrived on thanksgiving morning (as my time was limited, because of my hemo treatment session T, Th & Sat). Well back to the haps at the unit, i was finally put on at 6:30 AM, but you know, I was a little pissed off, coming in as requested 1 hour early, and just sitting there, (i think it was a little unconsiderate of them, not to have the decentancy to at least call, and tell us to not come an hour early, because there was an incident, that prevented them from starting the morning session as scheduled, but no, they just let us come in an hour early, and coming with some lamed excuse, like they had some flooding issues, when they arrived, but i do think that was completely bogus, i think the person that was supposed to open up the unit at 3:30 AM, didn't show up, because i noticed that there was only two RN's on duty, that morning, and of course, all us catherer put ons (myself included), need the assistance of an RN to connect our catherer to the dialyzer machine. If you had been reading my previous blogs, i mentioned that they had an 8 channel cable service, which is truly inadequate for any proper entertaining viewing, but that has all changed in the last few weeks, they finally have upgraded our cable to Direct TV viewing, with so many channels to choose from. I was very happy about this, but in the last few days, someone who has treatment after me, busted the earphone insert, where my earphone doesn't hold in the hole of the side of the TV, so i don't have any sound, i had to put GMA on close caption, so that i can read what they maybe discussing at that given moment, but it is all good, i decided to just listen to some oldies, but goodies on my MP3 player for the remainder of my treatment session. Prior to thanksgiving day, for a week, Kaiser hospital representatives have been visiting our unit, and observing the protocol at the unit, and recording their evaluation. Everything was going smoothly with my treatment, the bloodflow pressure stayed at 400, which made me very happy, but 15 minutes was left for the completion of my session, and suddenly the electricity went out, the unit was totally in the dark, and i guess you know all the chaos that was transpiring with this latest development. I notice immediately how panick the RNs were, didn't know what to do, there was this very loyal and devoted PCT (Patient Care Tech) by the name of Mohammed, who was on the ball and in complete control - he began to yell out all over the unit - Open all the blinds, and "Return the patient's blood immediately" - and that is when the RN were running around with their heads chopped off, all in confusement. Boy! they were looking all pitiful and helpless. I thought to myself, why weren't they taught the same as the PCT, the emergency procedure, in case of disasters, that could arise. After returning my blood, my RN didn't even know which way to crank the machine manually, of course, Mohammed to the rescue. Some were finding it difficult to crank, especially the small framed techs, they were struggling to do the cranking, i felt so sorry for them. It took another half hour before i could be completely disconnected from the machine, because RNs were busy assisting with the fistula and graft take offs, and besides i had no other choice, but to wait, until an RN was finally available. I was finally off by 10:00 AM, and i promptly ask my RN how was i going to do my weight and also my b/p. I couldn't believe what i was hearing, they didn't even have a backup generator, nor a manual scale or b/p cuff. How pitiful could this unit be. I remember back in 1999, when we had a similar power issue, but there was a backup generator, that kicked in, moments later, so we didn't even have to have our blood returned, if we had more than 15 minutes left before completion of our hemo session, and at that time the unit was with a company called - Total Renal Care (TRC). Now that we are with Davita, what is up with Davita, and all these cutting corner issues, (no generator, no manual scales or b/p cuffs). In my opinion, they truly need to address these issues, because they are very serious, in case of future disasters at the unit. Now, i have to go home, without even knowing, if i reached my dry weight, or if my pressure is in normal range, and i am very concerned, as i will be eating way more food than i have eaten all summer long, so i don't even know if i have that spare room to over indulge (lol), well anyway i will take extra phosphorus binders to be on the safe side, and try my best not to drink too much apple cider, yeah right!, i love me some apple cider (lol), i will just try my best. I guess it was a good thing, that Kaiser wasn't there that day, so much they could have included in their evals, right! Well the unit lucked out, but i do believe God doesn't like ugly, because i still don't believe that story about the flooding of the unit, wasn't even true. Look what happened later on, all the power went out, and this is all because, they wanted staff to be home early with their families for thanksgiving, and it all backfired on them, they still didn't get home early, (having all us patients come in an hour early, just to sit around, looking like fools). This day just didn't turn out right, they had to stay a few hours later, than there usual open and close time, go figure! like i said God don't like ugly. What a disastrous day this was. All i have to say, is this unit needs to check themselves, before they wreck themselves (quoted from Ice Cubes lyrics). Well so much for that unit drama, i am finally off and going home. As my family have settled, and i did a second check to see how the food prepartion was going, my mom and husband had that well under control, so i took my usual NAP after treatment, about an hour into my NAP, my nephew, his girlfriend, my great neice and two nephnews arrived, so i had to get up, because i hadn't seen them in a few years. Of course, they had grown so much, since that time. It was so exciting to see the Jeff clan altogether, laughing and just enjoying each other. Everything done, the main guest of honor (that juicy, suckenling turkey). Other guest began to arrive, and we are now all around the table, ready to say the blessing, and then each of us, saying what we are most thankful for on this day. Of course my husband had to be at work at 3:00 PM, so he wasn't included for the first time at the head of the table, it was all on me. My baby sister, most definitely thankful for her new gift of life, (she received a cadaver kidney back in September). Even after all this chaos, at the unit, we all settled to a very wonderful, enjoyable and delightful thanksgiving feast. Well, that is it for my blogging today, unit next blog i wish everyone all the best, and i hope you all had a very enjoyable, and relaxing thanksgiving, and are looking forward to the coming christmas holidays, as i am.
Happy Holidays! to you all.
Glo

Tuesday, November 1, 2011

hi all, i know it has been a few weeks since my last blog post, but i have been a little bit pissed off for the last week. For three months i have been enduring this catherer with hemo, and finally i became comfortable and accepted this temporary way of dialyzing, but my catherer was starting to give me problems in the last two weeks, and i was told that i would have to have my time changed to a later put on time, some bullshit about there isn't an RN available to administer the necessary meds to get my catherer functioning with a blood flow of 400 at the time when i come in for treatment, so they changed my start time to 6:15 AM, i have no problem with this new time, as it will give me a little more time to sleep. I come in to treatment last tuesday, do the usual take my weight, and then i walk over to my usual chair, but only to find someone else in my seat, well you know i began to rant and rave, and just cause a commotion, but before i could elevate my concerns (about why this man is sitting in my chair, and already hooked up as well), a PCT (patient care tech) comes over to me, and informs me not only that my time was changed, but my chair as well. You could imagine that i wasn't too pleased with this chair change, as i had become so comfortable and relax with my two neighbors, although the man to my left, recently received the blessing of a cadaver kidney, and that is wonderful for him, but at the same time, i can't help but be a little envious of him, because i wish it was me, but all in all, i wished him all the best on his new blessing and most importantly longevity with his new blessing. Betty, an elderly woman on my right, we became very well acquainted, we would joke, and chat while we were both having our treatment. Now, i am at the end and next to a real nice guy, who is also a member of the church i am a member at, we chatted some, but when he would go to sleep, he would snore, and this very much annoyed me. I put up with it for a week. On last Saturday, my daughter accompanied me to the unit, and she was happy about the new time, she also chatted up my new neighbor, and as they were talking, i discovered we had a something in common, he lived in Long Beach for quite a few years, before relocating to the bay area, as i did. We conversated for about hour into treatment, about places that we both frequent at one point, while living in Long Beach, he was so excited about talking about Long Beach, that this man, was practically coming out of his seat with excitement, and a tech told him he needed to sit back, because he was causing the alarms to go off, so i guess he got a little angry, and decided to end our conversation and then he was off to sleep, and snoring as usual, so this time, i was prepared for him, i brought my MP3 player, and listen to music the rest of the treatment session, because there is nothing on the tube on saturdays, but cartoons of such. I decided that since this is temporary, that i would just accept this new change and make the best of my new chair. I do miss sitting next to Betty, but i guess it is all good. Things have changed tremendously since my previous ten year run on hemo, it seem to me, that we had more patient privleges back then, and maybe this is a policy of Davita, since they took over. Even since Davita took over, we don't have the great cable programming, as we had when we were TRC (Total Renal Care). This cable program that we have now, there is about maybe eight stations, not even worth viewing. I remember when i was on dialysis previously, we even had three shopping networks, along with lifetime, tnt, tbs, espn, we, oxygen, BBC, PBS,etc. etc., and many other stations, so we were being well entertained at that time. I feel that they should provide some better tv programming, but what can i say, davita, is truly cheap, just taking over all these units, and changing everything, cutting corners of such, to me they don't care about the patients comfort and satisfaction, dialyzing at their unit. I finally have an appt. for counsultation with the surgeon tommorrow, i will keep you posted on when i will have my surgery and to finally return to PD. Well that is it for now, until my next blog, take care and all the best to all my followers.
Glo

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

!!

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.