Today is my "Kidnaversary!" (the one-year anniversary of my kidney transplant)...
In celebration, my nephrologist's office called and gave me the results of my bloodwork from last Friday - Creatinine .9 with a Tac (Prograf) level of 6.7. Awesome!!!
(((HUGS))) to my bro (and his kidney) that continues to produce the most wonderful pee on planet earth on an hourly basis. I wouldn't be here like I am without him.
Have you seen the news about "Airborne"?
"...The makers of 'Airborne'... will refund money to consumers who bought the product, as part of a $23.3 million class action settlement agreement [based on false advertising]..."
Did you know that if you're a chronic kidney disease (CKD) or kidney failure (ESRD) patient, you shouldn't be taking this stuff anyway? Wanna know why?*
The Six-Word Memoirs website is going viral. And, really, why shouldn't it?
I participated in NaBloPoMo 2007 and now I’m going for the ultimate blogging challenge from NaBloPoMo’s sister site, Blog 365: to blog every day in 2008 and to have at least 365 blog posts...
This post is for someone who needs it.
I had this whole article typed in last night, and low and behold my computer ate it or WordPress is hiding it from me *pout* HOWEVER, I think it contains very valuable information that is not only important to others who, like me, live in Florida, but for anyone interested in organ donation. Please take the time to read it and comment on your opinion!
Florida Governor Vetoes Legislation to Simplify Organ & Tissue Donor Registry
Although a recognized and long-term advocate of organ and tissue donation, Florida Governor Charlie Crist recently chose to veto legislation aimed at easing the process for Floridians to decide to become organ and tissue donors.
The bill, which unanimously passed the State's House and Senate in May, planned to allow individuals to sign up as organ and tissue donors from any computer, as opposed to the current process which requires visiting a driver license office or mailing a form to the Agency for Healthcare Administration (AHCA).
The Florida Organ and Tissue Donor Registry was one of the first of its kind in the nation back in 1995, but has been criticized as outdated and technologically obsolete. The new registry would have been managed and maintained by Donate Life of Florida, a statewide consortium of organ, tissue and eye recovery organizations and others interested in educating the public about the importance of donation. Plans included funding in part by voluntary contributions to the Donor Education Trust Fund; there were no plans to include funds from the state's general revenue.
Prior to the veto, State Senator Steve Oelrich (whos own son was a life-saving donor) championed the legislation along with Representative Larry Cretul. With more than 3,000 Floridians waiting for life-saving transplants, the effort quickly became a bi-partisan priority.
Donate Life of Florida, with the support of AHCA and the Department of Highway Safety and Motor Vehicles, sought to take on registry management in an effort to increase registered donors in Florida from 4,000,000 - about 30% of Florida's driving population - to 7,000,000 within the next year. This goal, part of a national push to increase registered organ donors and save the lives of more than 95,000 Americans currently awaiting transplants, remains a focus for Donate Life Florida while the organization regroups to readdress legislative challenges.
Ok, so I usually skip the voting on other sites that have annoying "VOTE FOR ME" pop-ups. But since I won't force you to endure those annoying things, will you please vote for me for "Best Health Blog"? Its not so much that I want to win, but I'd like to put my blog out there and find more people in common with those who read MyKidney.com. Consider also leaving a comment on the voting site if you decide to vote for me :) THANK YOU!
Please, vote for me in ALL FOUR of the categories I'm listed under:
Best Health Blog
Best Blogging Host
Hottest Mommy Blogger
Best Blog About Stuff
I don't want to say I've lived a "hard" life, because I really haven't. I grew up on my family's farm on the Plains of Colorado, I had a lot of freedom to go where I wanted without fear, my family was dead-center middle class (for the area, at least) and my parents are still married after 42 years.
I also don't want your pity: While my family life was somewhat normal (albeit the usual teenage angst) my individual life has not been easy. Not at all.
It started sometime around the time I was 14 years old. My life completely changed more than it ever had - I had no luxury of feeling "invincible" like so many teens do, instead I was told I had an incurable, untreatable (as in no known proven treatment) disease of my kidneys that would, from that point forward, never leave my life. In fact, it will probably end my life someday and it has certainly changed my life in more ways than I ever expected.
I've always taken on this kidney thing with as much positive force I could muster. I've faced it head-on an accepted it as the "cards I was dealt in life" Years and years of talking to others, advocating, publicly speaking about my experiences, encouraging, offering words of assurance and comfort, blogging and telling people "you make your own happiness" has made me into a fraud.
But no one knows. They all think I'm great and positive and so very informed and wise "for my age"...
... but they don't know what REALLY happens behind closed doors, away from faces looking to me for "wise words" while bloggers read every word and wait for my positive return comment. They don't ever see me at home, feeling angry, frustrated, depressed or needy. They don't see me struggle with parenting, doing house chores, keeping up with my relationship with My (wonderful) Ken. They don't see the pill-popping, craze of constant pain from recent surgery and how I have to have people help me with even the simplest things like STANDING UP. They NEVER see my other medical struggles with constant insomnia, chronic fatigue, genetically-gifted headaches, and irritatingly, annoying extra sensitive skin. They don't see the fact that I don't like to eat, or that its how I control my stress. In fact, they don't see ANY stress in my life.
NO, instead they think I'm the bright happy positive ADVOCATE all the time. I handle my kidney disease perfectly. I'm informed. I'm motivated. I'm educated. I give advice because I've "been there done that". Yes, I'm the universal advocate for all things KIDNEY.
Advocate?! I think I'm the very essence of the exact opposite of what I 'preach' on a daily basis. I really don't give a damn if I "help others" or "give them inspiration". I get many compliments, private emails and comments on my blog and I act nice, play the game - all the time being mad at myself for not TRULY opening up and sharing the realities of my life. I can't admit all those things, what would people think? They'd think I'm just like them or maybe now that I must be world's biggest disappointment.
I AM lost in life - lost between two realities I've created for myself. There's the public me and the private me. The private me is ugly and flawed and doesn't care, while the public me does a damn good job of covering things up, and being that "inspiration".
I guess the reality is this: I'm the same as you, THE SAME, I've just found my voice and relied on my positive attributes to get me through. I never started out to change anyone or be a hero, it just sort of happened... and then I felt I had to keep up appearances so I wouldn't disappoint anyone. Even though I'm the same as you, I've placed unreachable standards upon myself that NO ONE could ever live up to.
Why do you listen to me? I feel the exact same way that you do, I'm just really good at faking it. I'm so sorry. Forgive me, please?
I was recently asked by a reader of this blog:
"I have been so focused on [my] AV Fistula that I did not think much about Peritoneal Dialysis. I have a great wife and son so I want to be able to keep my job as long as possible. It seems like PD would give me a lot more freedom to do that.
This is indeed an important question to ask one's self when one is nearing the stage of needing a form of kidney replacement therapy to sustain one's life. In this article I will list my personal views about hemodialysis (HD) vs. peritoneal dialysis (PD). I will share with you some facts about both, as well as my opinions on why I chose the modality I did.
Lets start with the easy stuff: Here are some facts about HD and PD:
Dialysis is defined as: "A medical procedure to remove wastes and additional fluid from the blood after the kidneys have stopped functioning." There are two types of dialysis:
Hemodialysis is defined as: "A mechanical procedure used to remove toxins and waste from the blood. Blood is removed from an artery, purified by a machine, and returned to the body."
Peritoneal dialysis is defined as: "A method of dialysis in which fluids are pumped into the abdomen resulting in the removal of wastes from the blood."
How Hemodialysis Works (NKUDIC)
In hemodialysis, your blood is allowed to flow, a few ounces at a time, through a special filter that removes wastes and extra fluids. The clean blood is then returned to your body. Removing the harmful wastes and extra salt and fluids helps control your blood pressure and keep the proper balance of chemicals like potassium and sodium in your body.
One of the biggest adjustments you must make when you start hemodialysis treatments is following a strict schedule. Most patients go to a clinic—a dialysis center—three times a week for 3 to 5 or more hours each visit. For example, you may be on a Monday-Wednesday-Friday schedule or a Tuesday-Thursday-Saturday schedule. You may be asked to choose a morning, afternoon, or evening shift, depending on availability and capacity at the dialysis unit. Your dialysis center will explain your options for scheduling regular treatments.
Researchers are exploring whether shorter daily sessions, or longer sessions performed overnight while the patient sleeps, are more effective in removing wastes. Newer dialysis machines make these alternatives more practical with home dialysis. But the Federal Government has not yet established a policy to pay for more than three hemodialysis sessions a week.
Several centers around the country teach people how to perform their own hemodialysis treatments at home. A family member or friend who will be your helper must also take the training, which usually takes at least 4 to 6 weeks. Home dialysis gives you more flexibility in your dialysis schedule. With home hemodialysis, the time for each session and the number of sessions per week may vary, but you must maintain a regular schedule by giving yourself dialysis treatments as often as you would receive them in a dialysis unit.
How PD Works (NKUDIC)
In PD, a soft tube called a catheter is used to fill your abdomen with a cleansing liquid called dialysis solution. The walls of your abdominal cavity are lined with a membrane called the peritoneum, which allows waste products and extra fluid to pass from your blood into the dialysis solution. The solution contains a sugar called dextrose that will pull wastes and extra fluid into the abdominal cavity. These wastes and fluid then leave your body when the dialysis solution is drained. The used solution, containing wastes and extra fluid, is then thrown away. The process of draining and filling is called an exchange and takes about 30 to 40 minutes. The period the dialysis solution is in your abdomen is called the dwell time. A typical schedule calls for four exchanges a day, each with a dwell time of 4 to 6 hours. Different types of PD have different schedules of daily exchanges.
One form of PD, continuous ambulatory peritoneal dialysis (CAPD), doesn’t require a machine. As the word ambulatory suggests, you can walk around with the dialysis solution in your abdomen. Another form of PD, continuous cycler-assisted peritoneal dialysis (CCPD), requires a machine called a cycler to fill and drain your abdomen, usually while you sleep. CCPD is also sometimes called automated peritoneal dialysis (APD).
In the next segment, I will discuss the differences of each modality, the pros and cons and the things one should consider when the time for dialysis nears.
Other resources:
National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)
American Association of Kidney Patients (AAKP)
How Dialysis Works (Animation) from DaVita.com
Recent USRDS (United States Renal Data System) data shows that at least 40% of ESRD patients currently on dialysis, and who are being treated with an anemia drug (such as EPOgen or PROcrit) have an actual red blood cell count above the FDA's level recommended for kidney failure individuals. More shocking: USRDS reports that at least HALF of the 40% have such a high level of RBC's have a higher than normal risk of cardiovascular "events" (heart attack, heart disease, etc.) and mortality. This is according to a New England Journal of Medicine article that was published in November 2006.
Anemia management is not a perfect science. It seems that managing anemia could actually be more difficult than the process of determining an effective dialysis treatment/modality (also not a perfect science). After all, each individual with kidney disease and failure has a different body type, as well as other conditions and diseases which might interfere with managing anemia.
On a more personal note, I have struggled with managing my anemia for six years (or two years prior to my starting dialysis) The biggest struggle has been keeping my "numbers" from roller-coasting too high to too low. Because of a particular resistance to typical anti-anemia medications (such as Epogen and Procrit) if my blood count gets too low, it will continue to drop even when I'm given increasingly larger and larger doses of Epogen. Then, the exact opposite happens - about 4 weeks of painfully low (not to mention, painfully physically exhausting) I suddenly "spike" my numbers to not just above the recommended levels, but MUCH MUCH higher than normal levels - i.e. higher than even a 'healthy' person!
I never thought much about being "not anemic" as a bad thing, in fact, I was happy whenever my numbers were so high - I had all the energy in the world, my treatments went better and I got more done in a day and more sleep at night...
... that was until, in November 2006 I was diagnosed with heart disease (albeit very minor, but still not normal for a 30 year old!)Â a few weeks later I was surfing the web and found an astonishing amount of information that linked higher-than-normal blood counts in ESRD individuals and to a higher risk of cardiac problems and disease.
You can bet I wasn't happy to think that not only was I dealing with kidney failure, but (mild) cardiac disease. I thought back to all the times when my blood counts were high and how great I felt and really realized that I had probably done myself damage for always questioning my anemia management nurse's suggested doses. I was so afraid of the "roller-coaster" that I always asked to be given the largest amount allowed by Medicare and my doctor. In all fairness I have to say that I pretty much disregarded all the information they supplied to me about problems that could occur (none of which at that time listed heart disease) such as clotting of my access, the burden of the increased fluid volume and the probability of clotting the dialysis machine (which I've done on a few occasions) because my blood was too thick. Did I listen? Yes. Did I stop and let go of trying to be the decision maker for ALL of my care? Nope. And that's where I went wrong.
This new information about blood levels of an ESRD individual being too high and now associated with heart disease is something we can't ignore. As almost any kidney patient knows, cardiac episodes are the leading cause of death in dialysis patients, NOT the kidney failure itself.
We MUST encourage our health care providers to re-examine the recommended levels and come up with a plan. I think all of us have enough on our plates to deal with, who wants another?
