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

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

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

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

November 12, 2012 - Monday

October 31, 2012 - Update on PKD walk 2012

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

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

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

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

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

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

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

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