Wednesday, January 9, 2013

Hi all and Happy New Year to you all, I hope you guys had a wonderful holiday season.  Now the shopping, presents and making preparations for the holiday dinners hoopla is over, we can get back to the business of getting back on track, especially with the management of good health with CKD and dialysis of course.  I don't know if you are anything like me, I have marked the  holidays as the time, when I do get a little naughty with my renal diet, and yes  I ate over the so called (eat in moderation), (lol), I even ate Mac and Cheese a couple of times, yeah! I said it, don't be surprised, I still adore Macaroni and Cheese, and I make a mean mac and cheese casserole, but I did take a few extra phosphorus binders to be on the safe side (you know our enemy Phosphorus!, Itch! Itch! need I say more).  Though I might have overindulged on the christmas as well as the New Year feast, I went to the unit for my scheduled monthly lab draw and EPO injection on Friday, and I do hope that my lab report comes back in normal range, but I won't know this until sometime next week, so it is all good.  I did however began to eat a little more healthier, after New Year, and of course, I did make that very same New Years resolution, I have for last 23 yrs of living this way, (I will be more compliant with my renal diet, as well as my medication regiment), but I started off wrong for the New Year with my medication regiment.  Just a few days ago, I woked up one morning, and did the usual, I slowly rised from my bed, as to not tumble over from one of those dizzy spells, as I do suffer from vertigo, I know what you thinking some of you, if it is one thing, it is another, my sentiments exactly, (I can't win for losing, it is enough I have ESRD, congestive heart failure, four bleeding stomach ulcers, RA in my left hand, and other health issues, from prolonged dialysis, but no worries, and dialysis is not the end of the world, so what! big dilly woo! right! life goes on and we all have challenges that we must face sometime in our lives, we are always being tested on some aspect of our lives, whether it be health, financial or our personal happiness, that is why I say I wish everyone a Happy, Health and Prosperous New Year always), Well after rising, I continued and did the next thing to Godliness, (you know), and my husband fixed a nice breakfast with two eggs (in which I so desperately need, because my proteins have very much been in question (on the low side of norm) and of course a couple of breakfast link sausages and some apple sauce on the side, I also had a protein drink as well, but when I attempted to take my usual phosphorus binders, I was finding it very difficult to swallow them, I kept gaging and for some reason, I throw them back up, well I have been taking phosphorus binders for well over two decades now, and I never had this problem before, it was evidence, that I was tired of taking these large phosphorus binders, but reality popped back into my head, and I said to myself, I know I need to take these binders, especially if I don't want my phosphorus levels to rise, and then I start having those darn itching attacks, that I have experienced in the past, so I decided that the binders weren't going down, because the water was a little too cold, and it was best that I start taking them with room temperature water, and it worked, but I can't for the life of me, understand that after all this time, I can't take these binders with cold water anymore.  Do any of you guys that have taken medication for many years, all of a sudden, they don't seem to want to go down anymore.  Do please chime in with your thoughts, experiences or concerns about my experience( you know the pill taking).  Well that is it for now, until my next blog, stay as compliant as you can with your renal diet and medication regiment. .  Oh, my 2nd book - "My Twenty Year Journey with PKD in the Dialysis World" is available on ebook.  You can google my entire name and their will be varies online bookstores that have discounted my books.
take care and all the best to all my followers.
Glo

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