Wednesday, February 16, 2011

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..

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