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 http://www.worldkidneyday.org/ 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

http://www.worldkidneyday.org/

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 health....my 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 doc...life 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 test..no 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 nod..it 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 together...my 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  http://donate.kidney.org/site/TR/Walk/Michigan?pg=entry&fr_id=3394
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 kidneys...plus 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..
Tootles!!
Bonnie

My Time on the List: Memories of a Friend

My Time on the List: Memories of a Friend: "http://www.legacy.com/obituaries/toledoblade/obituary.aspx?n=james-lewis-schueler&pid=148156860 Sometimes things happen and you ju..."

Memories of a Friend

http://www.legacy.com/obituaries/toledoblade/obituary.aspx?n=james-lewis-schueler&pid=148156860
 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 exchanges...so I wrote what I could and prayed Jimmy and I will see each other some day where time is of no importance.

Bonnie

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

恭喜发财

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 Hell.....now its over I won't want it again...trust 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 ...as 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 frequently...it 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 wrong....in 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 whatever......you 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 accomplishment....now is your chance to start anew..i.e. Chinese New Year....today. 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 them.....so 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 discussions...it 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

Bonnie♥

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 book...in 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 ...call 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 own....my 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 success..my 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 use....do 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 on....it'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!!!!!
Bonnie