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

My Time on the List: My Time on the List: PET testing and More Peritone...

My Time on the List: My Time on the List: PET testing and More Peritone...: "My Time on the List: PET testing and More Peritoneal Dialysis Education...: 'World Kidney Day March 10, 2011 ..."

Everybody Ready for March- National Kidney Month???

I apologise for no blog for a week or so. I have so much energy I once again have a million projects going at Energizer Bunnyness is BAAAAACKK!!!!! I was really getting angry with myself as I expected to feel like painting the house in a week after being on PD. All my peeps told me give it a month and quit your bitch'in. So last Monday.....the day of my PET test (See prior blog) and 12 new inches of snow...I shoveled for two hours with hubby and was still full of zip before going in at 8:30. I knew I was going to ace that test and YES I DID!!!!

 HOWEVER.....Lets get through the technical stuff and go on to talking about this important month..... With a Peritoneal Dialysis PET test they like to see a transport rate of at least 1.7 mine was 3.4. So I am a medium to fast peritoneum removes the wastes quickly ....I do better with shorter dwell times yet I remove fluid  well at the regular intervals. Plus I overfilled my 24 hour urine collection jug. That is a good thing. So I haven't asked Barb to order the CCPD (aka cycler) for doing exchanges automatically at night. I think I will next clinic. I am very comfortable doing the exchanges myself and tweeking and observing my flow times to see if I should add Heparin to clean out the catheter etc.

 Fast transporters must be vigilant to maintain their protein as we generally loose more than the others. As a fast transporter  I like doing the ambulatory exchange with shorter dwell times because I loose less albumin (protein).To estimate your protein intake need on PD take your weight in Kgs multiply by weight hopefully will remain at 125 but I doubt it...I have a difficult time keeping it up there. Presently I should eat about 75 to 80 grams of protein a day.The average adult should eat no more than 50gms a day. I have been a vegetarian most of my life soooooo. I really have a hard time digesting meat. Chicken breast, fish, turkey and  ground sirloin in small portions are okay but no way can I get 80gms in a day. Egg Beaters and Egg Beater Whites are my lifesavers but still you have to eat a ton to get that much protein.. 3 tbls has 5 gms. So thank GOD for protein supplements.

Now I  am not talking about the kind of yucky flavored drink things you see at the stores....I use Beneprotein is an instant protein powder produced by Nestle. No, I don't get any kickbacks from them but now that I think about it?? Wait am I starting to sound like Charlie Sheen???..who I really think is putting on half of this and really is dumb like a fox with a substance abuse problem..but I digress. It is made out of whey protein isolate (attn milk allergies beware) and soy lecithin. A serving of Beneprotein provides 6 g of protein. A 7-g scoop has 25 calories.If I use 10 scoops a day I have 70 gms of protein 250 calories. It is low in phosphorous but still take those binders to keep the dreaded plaque from forming. For people like me that eat to live instead of live to eat this stuff is the bomb. During the day I keep track in my head of how much protein I's not hard normally I eat Egg Beaters, low sodium turkey bacon, baby food meats, applesauce, jello. yada yada yada last night a sub from Jets ....hehehehe. This protein powder has no flavor and dissolves instantly so I pitch it into the food. A PD'er can lose as much as 30gms of protein in a day of exchanges. So mind your protein!!!!

Lets touch a teeny bit on body image. I cleaned my closet out this weekend...8 bags of clothes so long. My hubby has a favorite line he uses on me...just because you can still wear clothes you had in your 20's doesn't mean you should.True, True Daisey Dukes on a 55 year old are NASTY. Now with my new fancy catheter pants, shorts, skirts have to go either below or above. I can't stand anything on  it and I don't want to screw it up. Which is why I am preparing to make many  new clothes.So all those years of working out, Pilate's, running to have that flat stomach..which I had right up to the surgery....well lets just say I have a little Winnie the Pooh thing but it's there. You know what??? It is freeing.. that little tummy is keeping me alive plus I don't think that many people are looking at me and if they are it is probably because they are surprised to see me still alive....I have discovered many people believe that if you need a transplant you will be dead soon.......NOT.

In honor of NATIONAL KIDNEY MONTH  I will try and blog more as I want to raise awareness for those who might have CRF and not know it. The National Kidney Foundation's Kidney Early Evaluation Program (KEEP®) offers free screening for those at risk - anyone 18 years and older with high blood pressure, diabetes or a family history of kidney disease. Check the link for one in your area

I better stop for now. Next blog wiill be about something maybe seeing the sun for more than one day....I felt like a persson released from a dungeon today...MY EYES!!!! MYEYES!!!! OMG it's the........SUN  half hour latter I found my sunglasses where I left them a couple of months ago...when I wore them last....Don't worry in the summer you will hear me complain about too much sun...but I live in Michigan land of.. if you don't like the weather...wait 5 minutes

Ta Ta for Now
59 days till the Royal Wedding!!!!!!

Bonnie....Ever the Anglophile