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

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

Wednesday, February 16, 2011

My Time on the List: PET testing and More Peritoneal Dialysis Education...

My Time on the List: PET testing and More Peritoneal Dialysis Education...: "World Kidney Day March 10, 2011 I am back at it!!!! I am feeling much better but def have had a few glitches..."

PET testing and More Peritoneal Dialysis Education

World Kidney Day March 10, 2011

I am back at it!!!! I am feeling much better but def have had a few glitches figuring out how to get my exchanges timed right and what amounts are right for me. Additionally eating correctly is still tricky...I limit my salt intake but seem to be extra sensitive to sodium chloride.
 My kidney disease is technically called  Classical Distal Renal Tubular Acidosis. Your kidneys are responsible for excreting acid waste out through the urine and putting back a base..bicarbonate into your blood. This neutralizes pretty much all of the acid from food breakdown. We kidney people know this as transport.
There really are basically now 3 types of RTA..1,2 and 4...when I first got in this game there  were all 4 but they combined 1 and 2 and realized that was 3 so out it went. My defect is farther away from where the transport occurs. The biggest sign of #1 is low potassium levels...Hypokalemia. I have had paralysis occur from this before Dr Dancik was the one doc that could diagnose me. Potassium is responsible for nerve and heart potassium level once was 1.5...dead people have more potassium then that..normal what is called serum potassium is 3.5-5 mEq/L. Additionally Classical Distal RTA results in stone formation and bone disease..So how does one get it???? As a result of other diseases and genetics...we don't really know how I was so lucky..I have no other diseases...genetics I am sure played a part and I feel all those untreated kidney/urinary tract infections I had as a child probably were the culprits.
I lasted a long time by taking potassium and sodium citrate supplements, passed over a hundred stones but finally the kidneys just couldn't get the job done. Think back to Tiny Tim in Charles Dickens's 'A Christmas Carol'...he had bone deformation, weakness and was small. All these are seen in children with untreated RTA...Once Tiny Tim received medical care thanks to good old Scrooge he became stronger...probably sodium bicarbonate...So I have that going for me..Tiny Tim and I.
The important thing to learn from this story is once a year have a complete blood panel done.
This can be caught early....and remember any doctor reading this to make sure your kids go for checkups...back in the day I never saw a doctor unless I needed a shot..and my dad was a goes on.The answer to everything in our house was Epsom's salts...I soaked that ankle I hurt mogul racing for a week...strangely enough it didn't heal the broken bone.
Okie Dokey....Monday I have my  PET my doggies and cats are not included. This is a Peritoneal Equilibrium Test..btw your docs will throw these terms around many times like you know what they mean....I am fortunate I have those B.S and M.S. degrees but I realize most people have no clue.....SPEAK UP AND ASK QUESTIONS....don't just really isn't the medical people's fault totally...they do this stuff all day every day and are overworked because they are so devoted to their patients they forget...cut them some slack and OPEN YOUR MOUTH.
Your PET test is done one month after you have been on peritoneal dialysis. If you remember from a prior post I explained how the peritoneum acts as a filter...well it never has been used for this until you go on peritoneal dialysis so you don't really know how well it will work i.e. fast transporter- remove waste fast, water slow, average transporter- both an average speed, slow transporter- waste slow, water fast. This tells you how to adjust the dwelling time of the dialysate. I think I am average to fast. which means a cycler, CAPD (Continous Ambilatory Peritoneal Dialysis),  would probably be best for me. So I may tell Barb to get one on order. I have trouble letting the dialysate sit overnight and the cycler cycles 3 bags overnight on shorter dwells.The PET test is done at your center basically they fill you for 10 minutes remove a sample and then you go about your business for 2 hours they take a sample and test your blood to see how much creatinine and glucose are in your system then another 2 hours you drain completely and the test again and determine your PET. Sooo that is what I am doing on Monday....I don't mind because I love seeing Barb and my team..W. Beaumont Troy has the most caring and knowledgeable dialysis staff ever. If you have to do this that's the place.♥♥♥
I am getting more and more energy every day. However I still have to be careful with the foods but I have been touchy with foods my whole life....hummm and I am a trained chef as well..because cooking at  that level is like chemistry and art mixed two fav things.
One thing I have done is quit being the obsessed cleaner. I am sure once I am healed totally....remember any surgery takes at least 6 months to completely heal...most 1 year... I will polish toilet seats again. As soon as I finish helping youngest son get scholarship apps in for his summer in China...I am breaking out the new sewing machine and going to town....Looks like I am going to have a team for the NKF Walk at the Detroit Zoo in May
I haven't come up with a name for the team....def will have to be something amazing...One of my youngest son's best friends ♥♥Allison Pavloff♥♥ who attends Central Michgan University and her sorority PHI SIGMA SIGMA are going to join in...It really makes me cry...and  that is hard. DO NOT tell me today's young people are not the most amazing group...they will go on to make this world a better place. I will blog more aboutthe NKF Walk when I get the name together...I really never thought about it but I think it should be a gas....I just wish Kidney Disease and Traumatic Brain Injury got half the press Breast Cancer does...5 times as many people suffer from those as Breast Cancer but I believe in and support the Breast Cancer work as well. I am thinking next post I will talk about the signs of kidney disease and what you SHOULDN'T and SHOULD do for your the importance of having many many things to do in your life to keep you on the positive living page.
The sun is out and it is pretty warm...♣☻start getting ready for National Kidney Month 2011 March. It is international so next post I will teach you all how to say kidney in many many ways☻☻ As you can all see I have learned a new trick with my keyboard...I am sooooo easily amused..

Friday, February 11, 2011

My Time on the List: Memories of a Friend

My Time on the List: Memories of a Friend: " Sometimes things happen and you ju..."

Memories of a Friend
 Sometimes things happen and you just can't find a way to make sense of it..because there is no sense to it.I have realized we all walk around our daily lives thinking things happen to other people never us. It is true....there are probably some of you reading this who have never been sick a day in your lives...let me tell you don't take it for granted. The same goes for people who have been in your life and you always planned on getting back in touch with.I grew up in the summers on an island in Michigan. there were 2 girls and 10 boys between our 4 houses. The times we had and the things we did were right out of Huckleberry Finn. Right down to painting the dock and finding the drunks at night under the big spruce trees on the back of our property. The freighters went by endlessly, we fished everyday, climbed trees....and fell out..a lot and never broke anything. We camped outside with the skunks, played Canasta, Rummy and every summer had movie night....with a projector and family movies of water skiing, badminton, somersaults off the dock and taking baths in the river with the Ivory soap hidden under the raft...(it floats). At night we played endless games of Chase where the older kids would run after the younger ones who tried to get to the safety spots....and there was worm hunting  for the next days perch fishing. Endless days of touch football, lawn mowing and going to the mainland for movies at Seaway Drive-in or a day of horseback riding at Chartiers Stable. We spent days in the wetlands behind our cottages making paths and just looking. The leader in most of this was the oldest...Jimmy. He was so funny, a little crazy and smart. He always looked after me, gave me the Archie comic first and let me go when he caught me playing chase, He was 10 years older but always...always had time for us. Jimmy grew up and married a beautiful, kind and spectacular girl..Katie who was waaaaay pregnant at my wedding. They had three talented children....My last clear memory of Jimmy is dancing with him at my wedding...always the the swirling two step waltz...faster and faster..laughing like crazy. Well time slips away people go in different directions..Christmas cards are passed between the families but......I had his Facebook page and kept meaning to get in touch but..but...but....January 27th one of his employees put a gun to his head and killed him.Why I have no clue nor does anyone else. Now I am too late. I couldn't go to the service in Ohio as I am still on 4X a day I wrote what I could and prayed Jimmy and I will see each other some day where time is of no importance.


Thursday, February 3, 2011

My Time on the List: Chinese New Year Good Time to Clean up your Chi

My Time on the List: Chinese New Year Good Time to Clean up your Chi: "►gōng xǐ fā cái 恭喜发财Congratulations and Prosperity Things are moving along very well in this new year of the Rabbit. I had enough ener..."

Chinese New Year Good Time to Clean up your Chi

gōng xǐ fā cái

Congratulations and Prosperity

Things are moving along very well in this new year of the Rabbit. I had enough energy yesterday to run with the dogs in the knee deep snow in the field, use the snow blower and walk in the park with the doggies in the afternoon. I can hardly believe it....I did screw up, though I learned a lot.....Here's the answer to what I ate when I finally got really hungry....those of you who know me will pass out....Chicken Shack...OMG I never eat that stuff but Holy God I wanted it.......baaaaaaaaaaaaaad. Too much sodium...didn't drain well felt like one of those balloons that float in the air at the Thanksgiving Day Parade in Detroit.....probably Chilli Willi the penguin. Renal Patients pay attention...on PD these things can be fixed very quickly, the main thing is to learn from your mistakes.....However I really hadn't eaten much in a year so just this once I said what the its over I won't want it me....If you only cheat once a season and it doesn't involve alcohol or drugs and it isn't something you would see those people on the TLC Large programs doing or the ones where they have to cut people out of the house you will be fine. With Peritoneal Dialysis you have three different solutions 1.5%. 2.5% and 4.25%. The % indicates the amount of dextrose. This solution is called dialysate. The higher the dextrose the more fluid pulled out of your body. Each equally pulls the same toxins out. I don't retain fluid therefore I use 1.5% for all exchanges....except this a.m...I used 2.5% because that crazy Chicken was way toooo high in salt for me. I will only use it once and then be fine...Hey that is why Barb trained me so well. However I am usual....trying to be the perfect patient to get the most stars on the board at the Dialysis Center in Beaumont Troy so no more of this crap....Another thing PD patients deal with after a while is slow drainage.....Things get gummed up especially by your catheter. You are given Heparin vials and needles and dogs....oh my...I mean Betadine hehehehe. and you can put a shot of Heparin in your dialysate before you gas and go. Some people do it once a month others longer. I did it today because I was draining slow but that was probably due to the evil Chicken...however I wanted to make sure I remembered how I was supposed to do it......
I know this must sound like alot of stuff but it isn't really. I love being able to be in control of my toxicity. I know I am making myself better every day....if I feel a little off I can look at my log and figure out what I need or call Barb or Jill and they fix me right up. Except for my new crazy little umbilical cord I am feeling more and more normal everyday......Now I am thinking these guys should design designer Peritoneal Catheters....I am thinking colors, maybe some sparkles, cause ones etc..then I would wear my two piece bathing suits again. Ewwww NOT.
So lets talk about social life and friends after you start on whatever dialysis you choose....face it some people are going to avoid you like the plague. People who may have been lifelong friends closer than a sibling....There are several reasons for this and you MUST take it in stride because other amazing things will happen to you so long as you...what?????  reach out...don't turn in....remember my sickies this is vital for a positive lifestyle for everyone but especially for us. The pity train tends to pass by us is evil and can hurt your health both physical and mental...As people who have had life threatening problems for years we tend to blame ourselves for many things that go fact most things...why that is I am sure is different for everyone but you all know it is true. It is so wrong...even if your organ failure is due to alcohol abuse, drug use or obesity are not responsible for all the failures in the world....including relationships and friendships that tank. If you have cleaned up your act...that in itself is a major is your chance to start anew..i.e. Chinese New I was raised by a depressive alcoholic with a heart of gold...So I know how many of you think...... yes all of us will have friends back off no matter how we got where we are but it is not you who are lacking....and as my mom used to say about the guys I dated (Whoa a whole lot of rotten ass frogs to get the prince let me tell you) "there are a million fish in the sea better than someone who would treat you like that". Let me just say she was so very very right and they just start falling out of the sky when you reach out with your illness. I mean amazing life lifting people who offer you organs, middle of the night support and that kind of friendship where you don't even have to say anything. Geez I even have a whole cheer leading team at my beloved Vet's..Auburn Animal Hospital...they are family for sure.
Okay the big question you will ask yourself is why did this person or persons choose now to cut you??? I have given this alot of thought since it happened to me and I have to admit you must really examine the friendship before the BIG ANNOUNCEMENT...and no I don't mean Obama running for president...for me it was being put on the organ transplant list and.....hubby losing his job. I am going to be nice and think it had nothing to do with not being able to hang with us and hubby's prestigious job....I believe for most people it has two reasons.....first look at the dynamics of your friendship...were you always the one who was the supporter...doing things above and beyond???? I was, my hubby always told me ..but you gals know how we love to hear that...Scott sit down...he was so very right and insightful....damn he got me. We chronically ill are like that. We have MAJOR empathy for people because we know all the troubled roads  there are in life and want to try and prevent others from traveling long as we what???.....keeping reaching out not turning in. The second and probably most common problem is you are bringing to light their mortality.....if you can die so can they YIKKKKKES!!!!!! they look like the Road Runner cruising off into the sunset and we are like Huh???? We are so used to that idea after a while it is a non issue..everyone is dieing from the minute they are born get over it and live on. I haven't been asked how I am in over a year and a half and seldom have even heard anything except when she needed something....because talking to me is.....scary and as these friends age they do become different....they turn into themselves. Not everyone is cut out to maintain a friendship when reality sets in. Especially if everything is all about them. So what do you do????? Move on. You don't need to have any deep is what it is and no loss. BECAUSE if you look around all these amazing people start raining down on you like cats and dogs and then take a look at yourself and realize you do not and cannot live around negative people with unhealthy lifestyles.....There are a gazillion people out there who want to help you whether it is make you laugh everyday, keep conversations going on political and current affairs...because they see you as a vibrant live person, go and do fun things like walk therapy and don;t mind if you have good and bad days......Do not let waning old friendships get in your way as you create a positive lifestyle...snakes shed their skin to look more beautiful you have to move on to a world of positivity...can't drag the old stuff with you........also keep a bunch of younger people in your positivity  crew. They really keep you up to date and are amazingly positive people....just don't be an old fart and be judgemental.....I love sharing stories with them and I know many of them will be docs in the future and maybe they will look at their patients differently from knowing me.
Okay gotta get back to real life...more technical stuff to come and ideas for making life a ton of fun!!!Plus eventually my take on raising children when you have a chronic illness.....

Till I Blog Again......that sounds like something Roy Rogers would say....and to those of you who just said...Who??? GOOGLE it kid


Tuesday, February 1, 2011

My Time on the List: First Week of Month of 4 Exchanges a Day

My Time on the List: First Week of Month of 4 Exchanges a Day: "Okie Dokey. I have to admit there have been a few tears and a little frustration but only because I expect my body to do everything perfectl..."

First Week of Month of 4 Exchanges a Day

Okie Dokey. I have to admit there have been a few tears and a little frustration but only because I expect my body to do everything perfectly....The first week or so of doing PD yourself is fine tuning the procedure....very few people are text other words.what you put in and what you put out exactly matches....or the timing doesn't work for your body....The blessing is your PD Nurse of which I feel Beaumont has two of the finest. Barb and Jill. They are amazingly knowledgeable about absolutely everything, Additionally Lorreta the MSW literally knows everything there is to know that could help you and dietitian Soon really understands the challenges of PD patients when it comes to eating and has answers help you get that protein in. My point is it takes a village and amazing husband and friends to get this thing off the ground. PLEASE renal patients reach out to all the available help there is for you. These people are not in it for the money they really really care about you. I have never left a message for Barb that I wasn't called back with in 10 minutes. DON'T WAIT and ask questions so things don't go down the crapper...and they will quickly if you don't stay on top of your procedures.

My deal is apparently I have a fast transfer rate. The first day doing at home I felt like a balloon and was a little short of breath...bad sign for fluid retention...Barb developed a better schedule for me and it worked like the bomb....then I woke up with a stabbing pain where my catheter is  by my bladder....of course I am sure I am a goner....Barb figured it out in a minute...I needed to leave some dwelling fluid in to cushion where the catheter is....went and did it and sure enough it worked like a charm....The last two days I am right on schedule with 4 transfers equal in equal out...It took me one week to get my body to agree to this. I am detailing this so you patients can understand how important it is to talk to your support people. You cannot do this on your BP is already going down...It's like trying to get an antique clock to keep the correct time...ya gotta fiddle with it until you find the right swing of the pendulum. I can see this is going to be a great energy is increasing everyday...everyone was right I really didn't realize how crappy I felt because I had gotten used to living with it over the years.....the light I see the light hehehehehe.

Well I don't go to clinic till next Tuesday so we will learn more then. You do have a few aches and pains as you get used to the PD and I do get tired but nothing like before....I have learned to listen to my body and not push too hard yet.

I am so excited because I have enough energy to go out in the upcoming blizzard with our dogs.... I am still working on more  'Words of Wisdom' blogs for those living with Chronic Illness but I want to cover the progression and technical details of PD for my renal people....I am contemplating dual listing in two other states...ones w/o helmet laws...I know that sounds sick but facts are facts and if they don't care about preserving their lives who am I to turn down a kidney. Oh and all you sky divers make sure you sign your donor card BEFORE you go. You may not appreciate having a perfectly good body and want to throw it out of a plane but if that chute doesn't open and your organs are smashed beyond you see my hand up????? You don't appreciate what you have until you don't have it. anymore.

Another thing I am going to start working for is making each state an 'OPT OUT' state. In other words you are an organ donor unless you opt out. The benefit to minorities would be phenomenal..because while a race to race match is not necessary it can open up many more matches for minorities on the list. This would also help reduce the number of donors who have signed consent yet whose family refuses to allow it...Yes this happens so all you donors make sure you #1 have it in writing notarized and #2 talk very sternly to your family and tell them you will come back and haunt them if they go against your wishes. Realize people that organ being alive in a person who needs it means your loved one lives's a fact.

Some things I want to cover in the future are : Raising Children when you have a life threatening illness, dealing with difficult friendships and accepting your new life, staying positive even though your patience is wearing thin, accepting your new body image and dressing to look great ( I am making all new clothes to disguise my 'new umbilical cord')...and many other things

I want to congratulate my oldest son Dan on his big promotion and thank him for sharing this exciting time with his mom and dad. I appreciate the daily check up calls so much, don't worry Danny my little (big) buddy I am here to stay for a long time and love watching you enjoy your life so much...xoxoxox We are gonna find the perfect house I just know it.

More after the big blizzard....
Stay Safe and Warm!!!!!

Tuesday, January 25, 2011

My Time on the List: On my way

My Time on the List: On my way: "Well peritoneal dialysis training has started and I am already doing the exchanges myself. It is amazing I thought all those college de..."

On my way

Well peritoneal dialysis training has started and I am already doing the exchanges myself. It is amazing I thought all those college degrees were history...I was a bit rusty but I got the touch back...I am not lying.... for a person with no medical experience the beginning could be a bit daunting. However I bet with an experienced PD nurse like my Barb every single one of you renal patients could do this like a pro. So if you are considering PD but are afraid of doing all the exchanges you can ask your dialysis nurse to show you the whole procedure and you can do hands on. It is very freeing to know you can cleanse your body of the build up of toxins everyday.
How this works is are some valuable words with definitions...peritoneum or abdominal cavity- contains your stomach, spleen, liver and intestines.  Peritoneal membrane -the lining that surrounds the peritoneum. PD solution is  placed in the peritoneum through the permanent catheter. The peritoneal membrane filters waste and fluids from your blood into the solution. The solution containing the wastes is drained from your peritoneum after several hours and replaced with fresh solution. It displaces through the peritoneum so you don't look like a balloon...I really didn't believe this. I mean I have dissected more cadavers then I can remember but when it is YOUR peritoneum and you are looking at putting a 2 liter in there...well I thought I was going to be Hilda Hippo and sound like a washing machine when I walked...Not at all....Now I am pretty small so we started out with a smaller amount. But I have to tell you my body has taken to this like a fish to water. I am still not hungry but my nausea is gone. I do 4 exchanges a day for the first month then I go on a cycler that exchanges 3 bags while I sleep. I can expect to see my energy level return pretty quickly..which will make EVERYBODY happy because I am pretty grumpy not being the Energizer not grumpy I believe we could use the B word here.
So that's what I have been doing...I encourage all renal patients not to be intimidated. I realize this isn't for everybody but investigate all options before deciding how you want to treat your renal failure....and my best most important advice is....BE COMPLIANT....let me say that again..BE what your dietitian tells you...yes now you can eat protein that doesn't mean you go out and grab a tub of fried chicken and a beer. EXERCISE....get off your arse as soon as you can. You want your peritoneal catheter to heal correctly so for the first few months walking is great...I won't be weight training for 3 months when the weather breaks bicycling will be great and I am going to have to adjust my beloved Pilate's. I doubt I can develop much that doesn't stress the peritoneum...I am not very optimistic so we will see what I find that's doable for active PD'ers. Next don't miss your clinic and doc appointments and keep getting your labs pulled. Sticking your head in the sand only shortens your I found out something....if your team feels you are not following the instructions of your clinicians and abusing your care they can recommend you be taken off the transplant list.  It makes great sense...if you can't follow the PD parameters why should you get an after transplant is dependant on following a strict regime of medications.. so that is that.
Oh I know what I am going to Scott almost passed out when I told him this. Honest I thought I needed the paddles. I mean I have had golf shoved down my throat my whole life. My mother would have been on the early Women's PGA tour had she not gotten preggers with me. My dad lived to golf....of course I hated it. Then God played a sick joke on me. Vowing never to get married I ran into a guy in a bar one snowy April Saturday...actually a blizzard. The beginning of the Stanley Cup playoffs was on the TV. Ya think I would have noticed he had a golf shirt on...UGHHHHHH and then I gave birth to a.......scratch golfer..I knew I had problems when I saw him cutting teeth on the handle of his dad's putter. So I have finally given in....What the hell I think I will look sharp in a Hawaiian shirt and plaid pants. OOO and I am thinking Panama hat..

All my love to my team of backers and you know who you are.....I am working on a design for team caftans...Erin you are in..:o)

More later... the big question....what will be the first thing I eat when I get my appetite back????


Monday, January 17, 2011

My Time on the List: I Am On My Way

My Time on the List: I Am On My Way: "I am sorry for not updating sooner but sitting up and typing was not a particularly comfortable thing to do. I had my peritoneal access surg..."

I Am On My Way

I am sorry for not updating sooner but sitting up and typing was not a particularly comfortable thing to do. I had my peritoneal access surgically put in last Tuesday 1.11.11. I must say the night before I kept looking at my body thinking, "geez I am going to be like Bionic Man....wake up and my body really isn't mine anymore". Thanks to all my great PD nurses and new great friend Peggi Speers at Patients Pride I went in well informed. My nephrologist the great Jerry Dancik made sure I had the very experienced dream surgeon Dr McIntosh. Renal patients all these things are you responsibility. You have to talk talk talk to people and investigate who is the best and what you should do. Positioning of your peritoneal port is so very very very important....I am very active so this was super important.....did I say this was important???lololol Prior to seeing the surgeon who will do your PD access surgery make sure you go in and meet your PD nurse for a conference. Your first meeting you  learn A LOT of things so take your partner or person closest to you. Scott remembered a lot of things I didn't. As the patient no matter how many notes you take or closely you listen you miss things....I have a huge medical education and background so I focus on the technical however those wind up not being the crucial things you need when you are feeling like need to remember that Dr McIntosh said it would take well over two weeks for there to be no discomfort.....aka PAIN. I have that wonderful patient personality...I was crying 2 days after because I hurt considerably when I fact to be honest it hurt like a mother. I thought I should be all better....what an idiot. I thought I would run right out to the grocery hahahaha.In recent weeks I have come to be more realistic about expectations I have for myself...Thanks to my husband Scott and dear dear friend Jan I see myself more realistically......I no longer have to be super human I can a regular person and I must say it is freeing. As people with chronic illnesses we are always battling something...utmost our bodies. We get so tired of every time we run into someone the first thing they say are you feeling. UGH. We deal 24/7 with this issue lets talk about the weather, the kids, the pets anything else. However I digress, thanks to Scott having his listening ears on he was able to take me in hand, comfort me and give me information I needed to make sure I slowed it down and let my body heal itself. You just have to have that second set of ears .My procedure was outpatient at Unisource with amazing nurses and the first time I have ever had anesthesia and not been sick as a dog.  Everyone was so kind it just made you feel better. I went into surgery about 1:30 and was home at 5:00 with slow driving because of snow. Basically there are tiny incisions to the left of my belly button and in my belly button and the tube comes out about 4 inches below and 3 inches to the left of the bb. No muscles are cut, just eased apart. Bleeding was minimal. I didn't do anything to the surgical area until Friday when I went to see Barb my PD nurse and she cleaned the site, flushed my line for the first time and showed me the best way to take care of it..This consists of cleaning the sites once a day with soap and water and gauze and redressing the area making sure the tube is secured with tape.I got lovely parting gifts of a brand new IV pole and fancy schmancy scale which will probably be my enemy as eating is just not something I do anymore....that will change I am sure once I feel better and can eat something other than cardboard. Once the port was placed I was able to call Patients Pride and order my custom PD band which will hold the tubing in place and give me support. Additionally the people who run the Patients Pride are full of helpful and crucial imformation for successful PD. So that is where I am today.....healing correctly which is the most important thing. Wednesday is another visit Barb and have her flush out my lines, Thursday is visit my surgeon then next week is the big week.....I start my day long training for a week with Barb and all the PD people(Nutition, social work etc) and begin living on PD. I am feeling like an old dishrag so I am excited as heck to get going....I am going to try walking to day and hopefully hit Joann's for the red tag material sale.....I am making a ton of new clothes to accept my PD access. How exciting....gotta learn to use my fancy new embroidery/sewing machine.....I think a hear swearing in the future

Monday, January 10, 2011

My Time on the List: Last Note Before a lifelong Change

My Time on the List: Last Note Before a lifelong Change: "A short post before my life changes dramatically...From here on out I will not be the only one in control of my body for the rest of my life..."

Last Note Before a lifelong Change

A short post before my life changes dramatically...From here on out I will not be the only one in control of my body for the rest of my life. I will have a foreign body of some kind keeping me alive until I pass to the next life whether it be my PD filter or hopefully God a transplanted kidney. To be honest it is a little sad to realize this body which has served me so well for the last 55 years is going to feel different and look different. However I have been so inordinately blessed in my adult life that I can't feel bitter or mad. I feel blessed that the doc's and medical community have figured this whole treatment out and created a support system for me at Beaumont that fills every need. So my friends I will talk to you about my adventure from the other side later this week and we will all learn many new things...Oh and I will include an epiphany I had about myself and try and write that darn piece about friends that just can't deal with your illness...


My Time on the List: Two Tube Boogie AKA Peritoneal Access Surgery!!!!

My Time on the List: Two Tube Boogie AKA Peritoneal Access Surgery!!!!: "Well, I can hardly believe I was scheduled so fast for the implantation of my peritoneal access. In fact no one else could believe it either..."

Sunday, January 9, 2011

Two Tube Boogie AKA Peritoneal Access Surgery!!!!

Well, I can hardly believe I was scheduled so fast for the implantation of my peritoneal access. In fact no one else could believe it either!!!!! This Tuesday....yes 1.11.11....and double digits are my lucky numbers especially 11 i.e....April 11th..the royal birthday MINE LOLOLOLOL This is done outpatient. I heal for 4 days and Friday I go to the Troy Beaumont Dialysis Unit and see my Barb and she flushes my lines to help prevent blood clots, change my dressings and check on everything. My BF Jan and I decided while walking that is was just the best thing as I don't have time to ruminate over the whole thing....Jan...I don't know what I would do without her. I have written briefly about her. She lives across the lake from me and we therapeutic walk together either outside or on the track at our beautiful Older Person's Commission facility 6 days a week....even God rests on Sunday. We call it more than walking because the talking is probably even more important...Jan has MS..she is still doing well after all these years but is dealing with increasing yea I basically don't have to explain anything to her.The progression of our illnesses and our hiding them, then giving up on that, are mutually shared on the same time line. She just totally gets everything and like me is brutally honest...which is what I live for...if I am acting like an ass or have the wrong take on something call me on it....feeling crappy makes me a major grouch some days and I have learned the fine art of apology. Everyone reading this who suffers from a chronic illness knows no matter what a fabulous person you are ( Yes Kimora Lee and I have FABULOSITY!!!) there are days when you want to bite the head off a rat...sorry PETA people that is just a euphemism...:o) So the importance of reaching out from our situation and having communication with others is truthfully healing. Listen sickies.....don't buy a ticket on the pity train because you will see yourself get progressively worse. Asian cultures have long known your Chi or mental balance plays an integral part in how you progress in your illness. If you are unable to physically walk....walk with you mind and personal interactions. DO NOT STAGNATE. Jan is my Guardian Angel and I am hers.....Thanks God!!!
Okay so the two tube boogey.....for those looking to learn more about the PD process check back after Tuesday. I will then start to blog more about the particulars so I can take the mystery out of this dance. I also will be learning more about supply deliveries...for PD you get a truck load of your dwelling solution, tubes and supplies about every month,..I have hooked up with Sheila Shaw's Patients Pride and Peggi Speers who helps guide PD patients like myself through the ordering of a miracle band that supports the PD tubes. I will write extensively about this when I can order mine....have to have the tubes in to measure correctly to have them made....All this helps to keep your sites less stressed and clean,....Sam's old bedroom is going to be my PD room for the month I have to do exchanges 4 times a day....clean, no animal hair and storage of all my tools. A corner of the walkout has been designated for storage of the gazillion boxes of IV bags....Planning for me is cathartic...I feel in control. Dr. Dancik sure knows his patient. He told me I would love this because I was the boss. The main worry with PD is sepsis and keeping infection at bay. If not you wind up with peritonitis and on hemodialysis. Soooooo can you say HAND STERILIZER by the gallon and 3 times a day vacuuming any dog hair. NOW some people will say you have to get rid of your pets....Nooooo. You have to be careful while doing exchanges to keep them away from you...and to keep fur cleaned up which we do anyway. My pets help me to live a sane life....
Okay that's what going on for now...gotta get the 2 youngest boys packed up and sent back to school to do that thing they do so well. Oldest son Dan wants to sit with his dad during the surgery.....says he can work from surgical center. Gotta love him. We'll see. I don't like to interrupt their's not like this is my then there will be a huge partayyyyyyy!!!!!!! I believe I hear the word BURDEN coming to mind...Unless there is a major affair occurring I prefer to let life go on unimpeded. However you have to consider what makes your children (and at 25 they are still children) most comfortablele and secure. So we will talk...the very best thing you can do.
Also I start my PD training Jan 24th...a week of day long training on doing my exchanges....thank God for my medical training....However doing it on yourself is a whole different ballgame so I am going to be the STAR pupil....don't ever want to piss my medical people off..hehehehehe. I will also continue my discourse on friends. I am trying how to delicately write about a baffling failure in a lifelong friendship. It hasn't upset me at all just disappointed me...BUT I have so many amazingly wonderful things happening in my life already 2011 is 100X better than 2010....what could they be???????? stay tuned Power Rangers
TTY after the Two Tube Boogie

Monday, January 3, 2011

Your Eyes Don't Really Tell You Much

Gosh, I have a lot of things that have been running through my mind. Like why is our society such a visual one???? For those who don't know our youngest dog and I had a major accidental head butt and I got basically knocked out AND a lemon size bump on my noggin, swollen almost shut left eye and double black eyes..I still have one slightly black eye and a golf ball bump. I also was still limping from the pseudo gout in my left foot ( this comes from a build up of phosphorus in the same joints as gout sets in.....a clear indication my renal function is shot when the binders can't pull PH enough out). Soo when I used my handicap sign to park no one ever said anything...Now, I seldom use it but lately I know how tired I will be coming out of the store so I have pocketed my pride and used my brain and used the darn thing. People in stores were so sympathetic when I was banged up yada yada yada.....Okay flashback a few months to when I really was feeling like crap and used it. I looked perfectly fact I looked beautiful thanks to years working as a model and learning the fine art of hair and makeup....God bless Revlon. Let me assure you I am not. I had 2 people make nasty ass remarks as I went into the store....excuse me if this bothers you so much why not call call the police????? Who made you the handicap spot God????? A friend of mine had a quadruple bypass and had the same thing happen...he ripped open his shirt and displayed a 14 inch scar to the offenders...awesome!!!! However I have boobs so I think when I get my PD access if I do that I could wind up in jail for indecent exposure. My point is we need to look deeper at people and actually use the brains God gave us before opening our mouths. When this happens I feel it is my duty to explain renal disease to these uneducated people...and I see their eyes glaze over. I finish by asking them if they are registered organ donors which sends most of them packing. However I am pretty sure they won't harass a handicap parker with a permit anymore. Having this disease has made me realize that when I look at a person I really don't learn a darn thing  about them. The outside is just packaging..or advertisement..or how they want the world to think they are. How does this relate to the friend issue???? That will be clear in my next blog...Would your friends have chosen you as a friend if you had a flaw they didn't know you have???? What happens when they realize you could die on them or you will be walking a razor tipped wall for a they stick like glue or back off???This whole visual approval thing comes into renal disease has made me so much wiser. It also has educated about the way the world works...not at all how I thought.Most importantly it has made me realize I am not an as astute judge of character as I thought I was. True Colors show when the chips are my friend blog will have a little sadness and disappointment and a ton of ...Wow people are amazing and good and have thrown out so many hands to grab I am dazed. People I just never ever thought of.....

Sunday, January 2, 2011

A New Year Thank Goodness

Well I almost slept through the New Year....thank God hubby woke me up. I felt bad but he had the TV to himself and got to overdose on hockey and football. He is so supportive I just know I would not be where I am without him. Obviously, I can't get on peritoneal dialysis (PD) soon enough I have NEVER slept through anything in my life. My butt is dragging big time, I don't care if I eat or not,,,which is not new for me..and I just feel like BLAH. Melanie was right you DO know when it is time. I kind of relate the holidays for a person like myself.....end stage renal disease... to that of being an unmarried career woman in a large family of married highly fertile siblings. I have such a friend and she has told me for years to look in people's eyes as they approach and you can tell if you should suddenly have to go to the bathroom or not. For her they have the....Sooooo are you dating anyone special (make sure the voice goes up here)????? look....and the killer...You know you are not getting any younger you'd make such a good mother....finale.  For me it's.....(cue squenchy eyebrows bent head little nods) Soooooooo how are you doing???? (Voice goes down) and the killer??? ....Be thankful for every day. OMG....SHUT UP. Think before you talk to a chronically ill person because I can guarantee we are thinking..what the He## do you know??? I have thanked her many times because she was right on the button and that insight has saved me many times. I have friends on both ends of the spectrum. So the next couple of blogs are  about what to expect when varied and all of your family and friends find out you have a life threatening disease. First lets deal with family. My parents have passed and I am an only child...which I have come to greatly appreciate (except for lack of an organ match).However I do have very close family and they are so supportive and treat me no differently than they did before....which is exactly what anyone in my position really wants..well most days except like now when I am tired but insist  I am not and say I can do anything...when I can't. So basically my family is screwed no matter how they treat me because I get mad at my body but I get over it. This is why I continually thank my husband and sons. They are amazing cuz I can be a real pisser right about now. They repeat back to what I say and we all laugh because I am so ridiculous.....Laughter IS God's greatest gift. Then there is my husband's family.....cue.... black cloud following over their heads wherever they go. Fortunately they do not live anywhere near us. They are just very negative people. I do not do negative and at this point in my life I am sorry but I have to put you in the out going mail if you choose to be like that. Surprisingly people like that really prefer to be on the outside...they are afraid you are going to die and in someway that will hurt them.....I see this a lot. I also understand it. It doesn't hurt my feelings..It is what it is and In am a happy camper who sees the glass half full...the exact opposite of how my parents were. If you are reading this and have a chronic illness start living like will feel better, heal better and life will be so much easier to live. So the can choose your friends but not your relatives is very true and for people like me it is a Godsend...however don't expect too much from some of your can't change their fears and you may be surprised who steps up to be your support and who backs out...I have been.