Sunday, April 3, 2011

My Time on the List: Welcome To National Donate Life Month

My Time on the List: Welcome To National Donate Life Month: "Welcome to National Donate Life Month to all with a vested interest in organ transplant which most obviously is me or why would I blog ..."

Welcome To National Donate Life Month

Welcome to National Donate Life Month to all with a vested interest in organ transplant which most obviously is me or why would I blog about this experience for my friends at Gift of Life Michigan and the National Kidney Foundation who help people like me beyond that's a run on sentence.

April is (in most normal places in the northern hemisphere) the month of new life, renewal and Resurrection of hope. A good month to represent the needs of over 120,000 people in the United States....I am thrilled we have gotten this recognition....this month will bring more organ donor registration but will it really educate the people uneducated about organ donation???? I doubt it seriously....Where we have to begin..and why this month IS so in all the elementary schools when little children listen to their teachers words as gospel. Adults are generally unconcerned unless something touches them personally...Children have all the energy, ideology and belief system to eventually create an Opt-Out society....So it is my prayer that parents won't complain to school boards about the discussion of Organ Donation and that if they do school administrations will have the gutts to stand up to them.The children are braver than their parents....the parents are the ones who don't want to discuss life and death...remember...Mom where is Fluffy???? Oh he went to live on a nice farm..... Learning about organ donation and the existence of death and life  at an early age makes acceptance that much easier. You never remember NOT knowing about it. Besides it may light the spark of many little girls and boys to LOVE science because they want to help....I have seen that happen many times.....How many docs do you know who had a sibling or parent die when they were young???? For the National Donate Life Month...let us educate the future...our children.

Sooo Peritoneal Dialysis is going great I am sure I have so many stars Barb needs to put a new board up.....I have had some interesting life bumps this month.....

I believe I have described how I am the Queen of kidney stone formers......but I have been doing very well for 2 in none. WELLLLLLLL......don't let anyone tell you God does not have a sick sense of humor.....Last Sunday I had what I thought was gas as my left quarter had was hurting...If you get gas with PD it can be pretty uncomfortable.......Praise Beano....BUT as Monday rolled around I began to suspect something....the pain started to get colicky...meaning it came and went until it decided to no longer go...I knew it was a stone...It has been many years since I needed to hit the ER for passing a stone. I know when I need to go and not but now I am on PD and not guessed Scott got the Bat phone and called Barb. Jill answered other blessed PD nurse...she agreed unfortunately...I was passing urine so I would take the pain meds and walk and rock and jump and run up and down the stairs.....Until I started throwing up..from the pain meds and the pain...The fluids are what push the stone down so at 7:30 pm I gave up and went to Troy Beaumont ER...Let me just say their triage nurses are the very best....They had me in the back with in 10 minutes..I am sure they suffered the wrath of the guy blowing his nose with the terminal cold. I got ER nurse Leanne who should really be a doc...if your reading this I mean it. She could tell I was an old timer at this and asked me what worked best...LOVE IT.....Got my IV and Pain meds Boom 1/2hour from home and I am set up. My doc comes in...sorry had meds by remember he was cute....He asked what I thought...I said after 4 bags of IV if I haven't passed it we have trouble BUT it is moving so I am thinking 2-4 hours....They were busy and I said put me in the hall by the toilet....They love me ;o))))) I got to talk to everyone....about dogs, exercise, perfume....I texted my girlfriend Jan and told her where I was as she knew I was working on a stone...She said she was praying for me...I looked at Hubby and said...Jan just started praying for me we will be outta here in a couple of hours.....9:58pm we were walking out. May I say I got applause for this stone....I have passed some HUGE ones..but this was huge and SQUARE...not a hook but points....I spent 3 very uncomfortable days but am fine now....Please understand positive attitude gets me through all this....and amazing ER staff who listens and triage nurses who fist pump when you pass the stone...♥♥♥ BEAUMONT ROCKS...OOOooo bad pun.

So we figure my week should improve...HAHAHAHAHAHA.

Well cowboys and cowgirls when we last left this ranch I was told I had missed an appointment at Social Security to have my Medicare application reviewed that I had not submitted...which they sent back to me a week earlier and never told me I had. Yea I know read it over a few're gonna have to do that again in this blog. As you may remember once  a kidney patient starts dialysis you apply for Medicare as they help pay for your dialysis and transplant so you don't wind up on Medicaid with your insurance and money wiped out and they have to pay for everything....At least I think that is their reasoning,,idk it makes sense so maybe not. Okay I passed the boulder on Monday night and my NEW appointment was Wednesday morning 9:00am. I'm a trooper plus as we remember Loretta my beautiful social worker and the NKF had NEVER heard of a dialysis patient having to do this. We were all wondering if this was going to start happening more often to the chronically ill...So I was going in to see what was up.....This isn't pretty...

We got to the  Social Security office in a 'shall remain nameless' city 10 minutes before our appointment...yes we had an appointment. I would like to say the security officer was a very very nice man who knew many of the incoming people by name...that is sad. My name was called over a PA system out of WWII. We sat down and a man introduced himself and said he would be reviewing my application...for 'let's see Medicare due to Renal Failure'. Scott proceeded to explain the whole thing and asked why I was told I had to appear in person??? Never got an answer to that... The 'man' went over the application that had been sent back to me because I didn't send it to them...Hmm how did you get it then????? Whatever.. I could see this was not going anywhere I wanted to be...and I was pretty sure I was going to toss my cookies as I was still nauseated from pain meds. We reviewed all of my information and he said...You are denied. Huh??? Yes well you don't have  enough quarters in the last  10 years to qualify...and you aren't 65. Scott patiently reminded him I was a stay at home parent and HIS dependant for the last 28 years..with sporadic working...He said yes I didn't qualify because I hadn't paid enough quarters in the last 10 years....Scott AGAIN said I was his dependant and he had paid his part and several other peoples to the US Gov't since he was 16. The 'man' said that made no difference I was denied ..that he would go ahead and apply and I would be denied I could appeal but I would be denied. This guy loved the word DENIED. So Scott asked for his supervisor.....he said certainly but let me type up the the time he was done she was "in a meeting". I refrained from name calling only because he was too ignorant about his work for words...We knew he had no clue...So off we went DENIED..I actually looked in the parking lot for a car with a license plate DENIED. As soon as we got home Scott called Loretta my superwoman social worker and she did what she does....I went to bed, Scott went to work...within an hour Scott called to say Loretta kicked some he got a call from the head of that office saying a mistake was made and I was more than qualified then an hour later Scott got a call from Mr Denied saying he had investigated the 'rules' and I qualified....Yea I am sure he investigated it after getting his butt kicked....Anyway I am glad I did my mole work so now the NKF can watch to see if this happens more often. I pray it was just some arrogant man who feels being a mother of 3 boys less than 6 years apart is a useless waste of time. We had other little tiffs during the interview like he insinuating I didn't read my  paperwork before "attesting legally with risk of prosecution" that it was all true and deciding he should read it for me. I cleared him up with a 'look' and YESSSSSS I did...ask the people waiting in the office. The voice even scared me...Whoa possession at the SS office. I think my eyes even rolled back a little.

Yes I did file two complaints with the Social Security Department...big deal got a "Sorry my bad" from them and a cut and paste list of the rules for qualification given my case....I responded with yes well I knew these HE didn't perhaps you should CC him.....This are the people you want running health care  cause trust me this is how it will be.

So I am off to make baby clothes for an up coming shower.

Feeling better every day
I am sorry but YOU ARE ALL DENIED any negativity in your life.....

Talk to ya next week...when I will be another year older...YEA!!!!!  let me remind all of you who don't like getting older the alternative involves pushing up daisies.


Thursday, March 24, 2011

My Time on the List: It's Spring Let's Check Our Body Image

My Time on the List: It's Spring Let's Check Our Body Image: "I am ending my 8th week on peritoneal dialysis and I have to say other than a few learning experiences this whole PD thing is fantastic. Now..."

It's Spring Let's Check Our Body Image

I am ending my 8th week on peritoneal dialysis and I have to say other than a few learning experiences this whole PD thing is fantastic. Now don't think you will go on PD and immediately feel like a regular I thought, of course. Every day you feel more energetic and all of a sudden you stop itching, I don't  have to wear readers anymore and best of all no nausea. I have learned how to supplement my protein, that restaurant food is full of insidious I didn't drain!!! and I still have to watch for kidney stones. If you have been a stone former in the past it doesn't necessarily stop when you go on dialysis. Do not stop checking the toilet after you urinate for foamy urine, cloudiness or pink tinge. I had gotten complacent about it and one day last week stood up, turned around and was met by a toilet bowl full of very bloody urine. At this point all you can think of what..why can't this stupid body just behave. My temp was normal, my dialysate (stuff you drain out of peritoneum) was clear, I was draining fine...what the heck.  So I filled up a little specimen and called Barb (PD nurse at W. Beaumont Troy). We talked it over and decided to let the lab figure it out..obviously I wasn't infected. It gradually stopped late in the day and a light bulb went off..... The day before while I was changing the wash over I had a big cramp pain in my back right flank which I totally ignore anymore unless it doesn't go away. Truly after hundred's of stones I pretty much have the pain tolerance of an alien. Which is bad...pain is God's way of telling you to do something.

 The best thing is that through it all my Barb  is there for everything. I mean if she doesn't answer when I call I get a call back w/in 10 minutes AND if I don't call her she calls me. I just don't know what I would do without my Beaumont crew. So she called me the next day and said everything lab wise was fine...did I think I could have passed a stone??? Great minds think alike..hehehehe. I didn't pass one but when they move around in your kidney they rip and tear tissue and I know that is what happened. I have actually passed stones with kidney tissue hooked to them. Barb made a great statement though...when you are on dialysis of any kind or have a chronic illness anything out of the ordinary health wise that happens you tend to blame it on your condition... that is so true..I wouldn't have given it a second thought if I hadn't just started on PD. I would have said wow damn stones. Another example of not letting your illness define everything you do....

I had my second clinic Tuesday......I am the STAR QUEEN.....I even got an Excellent on written on the top of blood work!!! I felt like a little kid back in elementary school. LOVED IT!!!! Barb called yesterday to tell me my blood work was amazing...But you know what was special????She was as excited as I was....that is what makes the difference in this battle. Even Jerry (Dr Dancik the hero) was thrilled....All the team was so happy for me and that makes me want to walk the straight line with this PD. I do not want to disappoint any of them because they work so hard for me. If you don't have this kind of support as a kidney patient start looking around because it makes the difference.

So any's spring (supposedly)which for the ladies means breaking out the razors or hitting the wax salon...for the guys lets just hope they cut their toenails before putting on the sandals...I don't ask for much. Those of us with chronic disease can easily lose track of our body image. Even if you are feeling relatively well the simple knowledge that you are fighting with your body can tend to make you let yourself fall into the blando world..You know..constant baseball cap, pony tail, BIG don't wear anything that isn't in the laundry basket you just washed...Anyone recognize themselves???? Or if you have had physical change because of your I have a hose in my stomach, we all tend to obsess about that area. So I gave away 8 bags of clothes.and took out my scissors and chopped my hair off  (myself with a pair of Fiskars) so I couldn't put it in a pony tail.I am sewing new things to make me stay in the fashion lane and camouflage my recharge unit. If you don't sew I have another hint...the Salvation Army...go Fridays for the tag sales. It is such a blast to walk out with a bag of great items for 10 bucks, Just make sure you don't buy back  something YOU donated....EMBARRASSING!!!!!

Honest, no matter what your challenge a little spruce up helps...earrings, a cheapo new lipstick, scarves are amazing.....If you dress like you are sick you will feel sick and people will do the lower their head, nod with a sad how are you doing??? thing I talked about at Christmas...ugh.Positive living invades all parts of your life...Try to put zest in everything you do...even if you feel like a stepped on dog's better to look as good as you can even laying on a gurney in the hospital.....People realize you care about life if you care about yourself....and if you don't care about yourself how do you expect others to???? People like us are amazing, wise and strong...I am proud of all of us! We must represent our challenges by looking oh so fine.

The most important thing I have found since finally hitting end stage renal failure is to stop putting toxic things on my body. Really it only makes sense. When I think of the years and years (since I was about 12 and discovered good old hydrogen peroxide) I have been trying to hide the red that pops out in my hair....oh lets just be truthful....I have red brown hair. Obviously my temperament came from somewhere....and my mom's family were a bunch of red haired Scottish settlers. So when I started feeling really rotten and Scott lost his job I quit going to get the hair done which I hated doing anyway...AND I discovered the wonderful world of natural hair coloring and I figured out how to cut my hair into a really cute shorter style myself!!!!!(After the nutso Fiskars attack) What a blast. It's cheap, it is wonderful for your hair and your body and best of looks amazing.!!!! Many cultures believe that henna, indigo, amla, cassia, walnut powder, sage powder, clove powder and all the other myriad essential oils, teas and powders you can use to create wonderful hair color also detoxify the body. Well, I don't know but when I make my batches of henna and other ingredients and use them I sure feel amazing after. I really mean clear headed and more vibrant. It is def more labor intensive and it takes a bit of time but it has  such a positive effect on your whole outlook.Even blonds can use cassia powder to brighten up their hair plus other herb rinses. All these things have been used for 1000's of years by many civilizations.The Internet and You Tube are a gigantic source of all kinds of info about natural hair color and care. I learned most of my methods from a wonderful woman, Khadija Dawn Carryl. She is a Mendhi artist and lovely caring person. . Her products and You Tube videos are amazing. Make no mistake, I receive nothing for mentioning this. It is an honor to be able to share all of the many creations she puts together which make me feel so very much better PLUS look terrific ;o) These are kind extremely knowledgeable people.If you have any questions Henna Sooq or the discussion site Long Hair Community can help you start to detox your hair.....Such wonderful positive moves to make your life more brilliant.

Then I took a look at my shampoos, body wash, conditioners and gels.....there is a lot of rotten stuff in those. I have made my own face oils, perfumes and body creams for several years  but I just didn't want to get into the soap deal. There are many great natural soaps on the market. You don't need foam to get clean...Kadija Dawn makes one that has saved hubby from scratching himself nuts. For Kidney patients dry skin is a never ending problem.....PLUS I am naturally dry anyway. I use rose hip oil and evening primrose oil on my face and fractionated coconut oil and kokui nut oil on my body. These items are not expensive, are organic and toxin free and work. I also use no bottle shampoos anymore. Natural shampoo bars that create little or no suds....I can't tell you how much better my hair and I feel...I know you are saying it is all in my head (hahahaha) but so what if it is...which it def isn't because people have commented on my 'head o' hair more than ever in my life....well except when I modeled for Dodge in the 70's and they bleached my hair WHITE....oh it was attractive with my dark olive skin....not..but I did love the white boots and shortie white pants cowboy outfit...thank God they put a white cowboy hat on my head. My point is just these little things can make you feel better and change your whole attitude which in turn holds whatever chronic illness you are challenged with at arms length.

Of course I have many more idea's for blogs after talking to Loretta my social worker at Beaumont Troy....I am fighting the fight for Kidney patients with her help. That story will be next week after I go and straighten out the Medicare office..IN PERSON....Back off Will Robinson she is on a tirade!!!!!!
Hey I don't have red hair for nuthin'.

Until Later My Friends,
Elizabeth the world is less bright without you. You will always be my favorite.


Thursday, March 10, 2011

My Time on the List: WORLD KIDNEY DAY 2011..What it means to you

My Time on the List: WORLD KIDNEY DAY 2011..What it means to you: "On World Kidney Day I am going to start off with numbers I live with everyday from UNOS this morning March 10 at 8:00 a.m. in the Unite..."

WORLD KIDNEY DAY 2011..What it means to you

On World Kidney Day I am going to start off with numbers I live with everyday from UNOS this morning March 10 at 8:00 a.m. in the United States:

Waiting list candidates as of today 7:55am110,643

Active waiting list candidates as of today 7:55am72,261

Transplants January - December 201028,664

Donors January - December 201014,503

Really take a look at this you want to have to read it and realize you are one of those numbers in the top two lines????

That is if you are lucky enough to make it to the list....and don't die from complications of undiagnosed kidney disease. You need those kidneys healthy if some other trauma should befall you.  Please listen to me when I say you HAVE to live a healthy lifestyle with moderate exercise, limit your drinking, no drug use, maintain a healthy weight and stay active. I would like to to bet over half of Americans could prevent having kidney disease by doing this.
Your kidneys rule your body. They can make or break the other organs in your body...I did EVERYTHING right but genetics got me. I know there are those of you saying right now...see you never smoked, drank, used drugs, exercised everyday of your life and ate the perfect diet...what good did it do you???? Think if I hadn't??? I would be in an urn on the mantle right now. Do you have children or grandchildren???? IF you aren't doing everything in your power to keep your kidneys healthy you are screwing them over royally.

These are  the facts of the prevalence of Kidney disease. YOU think you are just reading them because I blogged them....Pay attention you never know when you will be reading them for yourself, husband, your child or grandchild. With the massive increase in kidney disease in this country it is very probable.

  • More than 26 million Americans over age 20 have chronic kidney disease. This number represents approximately 13% of the adult population. Millions more are at increased risk for developing kidney disease, and most don’t even know it.
  • More than 526,000 Americans are currently receiving treatment for kidney failure (also called end stage renal disease, or ESRD). This includes more than 367,000 dialysis patients and 158,000 people with functioning kidney transplants.
  • Every month, the number of Americans waiting for kidney transplants increases. About 83,000 patients are awaiting kidney transplants and more than 2,200 are waiting for kidney-pancreas transplants.
  • Chronic kidney disease has a disproportionate impact on minority populations, especially African Americans. The incidence of kidney failure (ESRD) per million people is: 998 for African Americans, compared with 273 for white Americans.
  • Diabetes is the leading cause of kidney failure, accounting for 44 percent of the new cases. Nearly 180,000 people are living with kidney failure resulting from diabetes.
  • Uncontrolled or poorly controlled high blood pressure is the second leading cause of kidney failure in the U.S. It accounts for 24 percent of all cases of kidney failure in the U.S.
  • The third and fourth leading causes of kidney failure in the U.S. are glomerulonephritis, an inflammatory disease of the kidneys, and polycystic kidney disease. These disorders account for 16 percent and 5 percent, respectively, of the new cases of kidney failure in the U.S.
  • Kidney diseases continue to be a major cause of lost productivity, physician visits, and hospitalizations among men and women.

From the NKF website what I feel is some of the most important information for every healthy person.

More than 26 million Americans—one in nine adults—have kidney disease. Millions more are at increased risk for getting it, and most don’t know it. Kidney disease can be found and treated early to prevent more serious kidney disease and other complications.
The National Kidney Foundation (NKF) recommends three simple tests to check for kidney disease:

Blood pressure. High blood pressure is the second most common cause of kidney disease. High blood pressure may also happen as a result of kidney disease. A blood pressure of 140/90 or higher is called high blood pressure. If you have diabetes or kidney disease a target less than 130/80 is recommended. Keeping blood pressure under control is important to lower risk of kidney disease, heart and blood vessel disease, and stroke.
• Urinalysis. A urinalysis is a test that checks a sample of your urine for the amount of protein, blood (red blood cells and white blood cells) and other things. Protein and red and white blood cells are not normally found in the urine, so having too much of any of these may mean kidney disease. Having protein in the urine is one of the earliest signs of kidney disease especially in people with diabetes. Several other tests can be done to check for protein in urine. One of the tests is called the protein to creatinine ratio. It is the most accurate way to measure protein in the urine. A value of 200 mg/gm or less per day is normal. A value higher than 200 mg/gm is too high. Another test, called the albumin to creatinine ratio, is good for people at increased risk for kidney disease—people with diabetes, high blood pressure, or family history of diabetes, high blood pressure or kidney disease. A value of less than 30 mg/gm per day is normal for the albumin to creatinine ratio; a value of 30 mg/gm per day or higher is high and may be a sign of early kidney disease. With either of these tests, you don’t need to collect a 24-hour urine sample, which may be hard to collect.
• Glomerular filtration rate (GFR). GFR is estimated from results of a serum (or blood)creatinine test. The GFR tells how well your kidneys are working to remove wastes from your blood. It is the best way to check kidney function. A serum (or blood) creatinine test alone should not be used to check kidney function. GFR is calculated using the serum creatinine and other factors such as age and gender. In the early stages of kidney disease GFR may be normal. A value of 60 or higher is normal (GFR decreases with age). A GFR number of less than 60 is low and may mean that you have kidney disease. Check with your doctor about having the GFR test (a GFR calculator can be found at NKF’s Web site If you are at increased risk for kidney disease (have diabetes, high blood pressure, or family history of diabetes, high blood pressure or kidney disease), you should find out if you have kidney disease. Ask your doctor about these three simple tests. They should be done at least once a year so that if you have early kidney disease, it can be treated right away. Early kidney disease can and should be treated to keep it from getting worse!

I would like to tell you a few a few small things you can teach your children that may keep them from having end stage renal. You might want to consider trying them yourself.

  • Throw out your salt shaker. Our foods today are so full of Sodium Chloride (NaCl) it is a crime.
  • Get up off the couch. If your body is strong from a good regular physically active 2 hours a day your kidneys will be stronger. I don't mean being in the gym I am talking about just screwing around outside or playing BB with friends. Hide those friggin Xboxes and such which are creating a whole bunch future new patients for the Nephrologists in med school.
  • Drink lots of water and throw out all dark colored sodas. I know you all have heard this a zillion times. This one thing can keep your healthy kidneys that way. If your children learn from infancy to leave the nasty drinks alone (and that means too much juice as well as milk) and drink good old H20 their body will thank them 1,000 times over as they age
  • Every year have a blood work renal panel done and learn what the numbers mean. This is important for children as  well. Checkups mean check the whole body not just your weight and height. The earlier any renal problems are discovered the better your chances are of saving your kidneys.
  • If you have parents, grandparents, cousins or any blood relative who has high blood pressure, diabetes, or renal problems TELL YOUR DOCTOR. They are not mind readers. Learn your families medical history. 
My personal wish is if anyone reading this has a substance abuse problem of any kind..and I mean drinking 24 beers on the weekend..KNOCK IT OFF AND GET HELP. There has been many a person destroy their renal function acting the fool.
MODERATION...Does not mean you can't have fun. BUT if you are in life for the long haul you HAVE to take care of your kidneys....You may never have renal failure but if you ever have to have surgery with anesthesia, food poisoning, cancer, become pregnant or the myriad of other things your body can experience while being used on this Earth if your kidneys are in tip top shape your life is going to be a lot easier.

So on this World Kidney Day say a prayer for all of us fighting the good fight and say a double prayer for all the Nurses, Docs, Researchers and Organ and Kidney Foundation workers who spend their lives trying to save people like me. Every day in the United States about 80 people receive a life saving transplant...not necessarily a kidney. That is not many....Please for me and all my friends on the UNOS list sign your donor card and keep your kidneys healthy...we don't need anymore competition.



Tuesday, March 1, 2011