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Normie
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Ellie

« on: November 03, 2008, 10:27:28 AM »

Hi my name is Norma and my nickname is Normie.  I realized one day that when I put my first name and first letter of my last name L together it spelled Normal.  So therefore the nickname Normie.  Of course that doesn't mean that I am normal at least not anymore.  I am 59 years young.  I live in Wisconsin in the USA. I have been married to my hubby for 37 years.  We have six children, 2 girls and then 4 boys.  They are all grown up now and out of the house.  Three of them are married.  I have 4 grandchildren, 3 boys and one girl. They range in age from 15 to 4.  Waiting for some more :)

 My story is probably a bit different than most of you.  I don't have any disease that caused kidney failure.  Mine was caused by damage. On (5/22/06), I was perfectly normal with a Creatinine of 0.6, GFR of 110 and BUN of 16. This was less than a year before it happened. It all started when I went to the dentist.  I had a bad tooth.  She sent me to the root canal specialist who decided that he couldn't guarantee the result.  It was decided that I needed to have it out.  Since I was going to the oral surgeon anyway she threw in another tooth for good measure.  I'm sure the greedy woman really wanted two bridges instead of one. Well she got NONE. I went to the oral surgeon on (4/16/07).  The first one went fine.  We decided to go ahead and do the other one right away.  This time he did not let the gum numb up enough before he stuck the needle in.  It caused great pain.  Since I had had high blood pressure, they were monitoring me with a BP cuff on my arm.  The cuff inflated at the same time and my blood pressure was 200's over 100's.  The blood pressure had come down some before I left.  No one said anything. 

Four days later (4/20/07) I had terrible chest pains.  I didn't go to the ER.  I saw an eye specialist (4/26/07) for a lump that suddenly appeared on my left eye lid.  He said it was a chalazion.  I also had blurry vision.  He said nothing.  Two weeks after the oral surgery (5/01/07) I suddenly developed vertical double vision.  I went to the ER.  I had a CT an MRI and found nothing, so they said I had a TIA (Transient Ischemic Attack) or what they call a mini-stroke.  They gave me a prescription for Accupril and told me to take a baby aspirin.  They did not tell me about the kidney damage which showed up on the labs as creatinine 1.0 and a BUN high at 24.  They also did not use contrast dye for my tests which showed they knew I had kidney damage.  The next day I had an ultra sound of the carotid arteries in my neck.  It was fine.  The follow-up doctor said I did not have a TIA.  I said well what was it.  He said he didn't know (LIAR).  He did know and didn't tell me that my kidneys had been damaged.  The ER did not tell me either.  He put me on Lisinopril an ACE inhibitor and Hydrochlorothyazide a diuretic.

The time came for a blood test, so I decided to go to another doctor.  I picked up the labs before the doctor's office called.  I saw this thing called a GFR L 54.  I had no idea what it was.  I looked it up on the computer.  It said I was third stage kidney disease with my kidney function low at 54%. Well you can imagine, I nearly fell off of the chair.   The surgeon blew out 49% of my kidneys taking it down to 61% and the doctor took it down to 54% with the ACEI.  The nurse called from the doctor's office.  She said that I should keep my blood pressure below 130/80.  I should see a dietian and loose some weight. I should come back in 3 months.  I said well what about the kidney thing.  She said what kidney thing.  I said the GFR being low at 54 she said what did you do look it up on the internet?  I said YES.  She said the doctor didn't say anything about that.  I said don't you people tell someone when they have something wrong with them????  I was mad.  Later learned that there are 26 million people walking around that don't know that their kidneys are failing and their doctors aren't telling them.  The lying scumbags.  They had to take me off HCTZ because it caused high uric acid up to 10.5 enough to cause more kidney damage and caused pain in the big toe.  I had pain in my back (kidneys) for two months 24/7 after that.  They wouldn't even listen.

Seeing as they said and my research said that my BP should be no higher than 130/80 with kidney problems I was upset because it was still at 157/82.  I went to Urgent Care one day.  The doctor laughs and says that it was better than his.  I said not when you are in third stage kidney disease.  I said I wanted to see if there was protein in my urine.  They did a dip stick test and it said there was a trace.  He wanted to do a EKG, so on the table I went.  Unfortunately the nurse says to me that I should trust the doctors.  THAT DID IT.  I started screaming and couldn't stop.  They gave me a shot of Ativan and my husband came to pick me up.  I slept and slept.  I had to follow-up with a doctor.  My new one was gone, so I had to see this other guy.  He tries to tell me that I have had this for years due to my high blood pressure.  How would he know -- this place has never seen me before.  I told him I wanted a urine test for protein.  It showed that I had proteinuria.  I wanted to see a Nephrologist, so he referred me.  This is now July.  This jerk of a Neph just said I should come back when my numbers are in the thousands.  Such wonderful compassion.  I believe they do nothing on purpose.  After all, a chronic patient is much more profitable than one who gets better.

It is now August 07.  While I was doing research, I kept coming across Malignant Hypertension.  So, I finally looked it up.  WOW was I shocked.  There it was just what happened in the oral surgeon's office.  He had spiked my blood pressure 200's over 100's which can cause malignant hypertension/malignant nephrosclerosis.  This causes damage to the smallest arteries in the kidneys, and kidney failure progresses rapidly.  This only happens in 1% of people with high blood pressure (lucky me).  I called the doctors office right away to tell them that it was acute kidney failure.  They never listened, they never put it in my chart and they never gave me anything else to bring down the BP.  I had an Ultrasound of my kidneys.  It showed two lesions on my left kidney and a normal right kidney.  I wouldn't go back to the original doctor there because he didn't tell me about the kidney thing, so they wouldn't let me have a primary doctor there.  When I went in to see my chart they kept running away with it and taking it apart before I could see it.  When I went to see the dietitian, I found out it wasn't covered by my insurance, so she didn't see me but didn't charge me either.  While I was there I told her I wanted to see my chart.  She told me to sit in this one area then ran off with my chart.  I followed and she was in back of this office with this lady on the phone.  They said she was taking so long because someone was on the phone.  Yeah right.  I went in and just like I suspected they had taken my chart apart.  They sure have something to hide.

I went to see a Neurologist.  He did an echocardiogram to see if there were blood clots in my heart.  It showed a trace mitral valve insufficiency.  So, now I have heart damage too. 

The MRI also showed hypertensive spots on my brain--which is probably some brain damage too.  They said it was old age--Yeah right.

You see this malignant hypertension or even accelerated hypertension causes end organ damage.  It can damage many organs-even cause aneurysms.  If not treated properly 50% of people with it will die within 6 months and most within a year.

I saw this young new doctor.  He did some blood work.  He just got nervous though and dismissed me.  Interesting.

I finally got a doctor in October 07.  I have had him for a year.  He did a few things more natural like giving me cinnamon for cholesterol control, sugar control, and fat  metabolism.  I do not have diabetes.  He also gave me Magnesium for muscle cramps (works great) and irregular heart.  He let me go on Atkins for weight loss.  I lost 60 lbs. from Oct. to April.  I exercised and went to the pool.  Everything was great until the end of Feb. 08.  I had right kidney pain and foam in the toliet.  I probably went into acute kidney failure.  Of course they never confirm anything.  Blood test (3/07/08) showed I had a creatinine of 0.8, GFR of 74 and BUN H at 24.  Then I needed a new prescription I told the office girl (doctor's wife) that I had to have the same kind.  She was too busy getting ready for their trip.  She just called it in.  I picked it up and it was not the same maker.  I took it for two weeks and I swelled up.  The pharmacist said it was an allergic reaction.  I searched it out and found my pill at a different pharmacy.  I first swelled in my legs.  I asked him if I had heart failure.  Then all of a sudden my belly got big (Ascites?).  Doctor said no, but I don't believe it.  My legs swelled up, my breasts swelled up.  Still have it to this day.  Now about 8 months.  Blood test (3/16/08) showed creatinine of 1.0, GFR of 57 and BUN of 30 H and uric acid 7.7 H.  In 9 days it went from 0.8 to 1.0. and GFR from 74 to 57.  It is scary when it jumps like that.
6/26/08 Creatinine is 0.8, GFR 71, BUN 23 H. Back down to 0.8 such relief.
7/20/08 C is .91, GFR 67, BUN 20 and uric acid 6.8 H

I went to see a Podiatrist (8/4/08) who said I had Achilles tendonitis and maybe gout.  But while I was there he said he thought I might have Lymphedema.  Oh great now I have another disease anymore!!!  I think the oral surgeon compromised my lymph system too and when it became overloaded with the allergic reaction it gave out.  Of course mums the word at the doctors office.  In fact they keep telling me I have venous insufficiency even though I just had a venous study which said that there is no blood clots and NO venous insufficiency. 

I had another echocardiogram.  It showed all  four valves are now leaking.  The doc just said that it was a different machine and different interpreter.  Yeah right such an excuse.

I had my yearly woman's exam and the Gyn doctor told me I had a heart murmur.  Interesting.  I went to see another doctor who also said I have a heart murmur.  Interesting.  My doctor's notes always says without murmur.  Do you smell a skunk???!!!

I had my Gyn refer me to an edema clinic.  The lady there said she would be able to tell me if it was lymphedema.  I was to go three times a week, etc.  Well the next visit she changed it to once a week.  Also said it was not a classic case of lymphedema.  She checked with other therapists and they said they didn't have any luck with just edema.  She wrapped one leg for a week.  No swimming :(  Well it worked.  The swelling was down and I got a new stocking thing to put on.  A compression stocking.  I am suppose to wear it in the pool.  Other people with these things take them off!!  I refused to have the other one wrapped the day she wanted to wrap it.  I didn't even have the right clothes on and hadn't brought my special shoe.  She was mad and discharged me.  Too bad they don't include the patient in their treatment plan.  I wanted my chart and guess what.  She wouldn't give it to me.  They gave me a number to call the hospital and to get my records from there.  Well I called the lady right then and there.  I told her I wanted my chart and it is my legal right.  She called me back to check of course that I was there and to see if they had a copy machine.  Well she had them copy my chart for me. Of course I would bet anything it is not all there.  Needless to say it said Dx BLE Lymphedema.  Doesn't anyone know how to tell the truth?!  She told me it wasn't lymphedema.  I am right again.  So now, I have one regular leg and one fat leg LOL.  Well it is still swollen above the knee, above the stocking.  What about that?

By 9/03/08 my C is 1.02, GFR 55 and BUN 22  I also had granular casts in my urine.  The doc sends  me to a Neph.  I tell the guy how the oral surgeon blew out my kidneys.  I have no kidney problems in my family.  Guess what--he writes to my doc and says that I said that the oral surgeon by not controlling my pain that he caused my high blood pressure.  No where will they write it.  They are all covering his ass.  It is so disgusting.

In March I got off Atkins.  I figured it was not good for me since the acute kidney things and the gout.  I changed my diet and added more veggies.  Then the new Neph said to on 1g of protein per kg of body weight but in my case ideal body weight.  It should be 75g of protein a day, but he said 60 grams which is really 0.8g per ideal body weight for me. It is kinda hard.  I usually go over by a few.  Usually between 62 and 65.  My latest blood work shows C at .79, GFR 79, BUN 18 and uric acid at 6.6H.  It has improved and is the best since the kidney damage.  Hope I can hold it here.

I had another MRI and it showed multicysts now bilateral.  They are peripelvic cysts.  Doc is trying to say I now have polycystic kidneys.  The Neph said it could be a possibility of being polycystic kidney disease to my doc.  Of course, no one tells me.  Who's business is it anyway.  I don't even have it in the family.  Besides a year ago it was only two little cysts on one kidney.  They can't possibly believe that it would cause such a drop in my kidneys.  Not when now there are more and I am holding steady.  I have been reading (of course) and it says when there is a loss of nephrons that it can cause cysts to grow.  Interesting.  Also, I learned that peripelvic are more rare and can be linked to the lymph system and can be caused by blockages.  Interesting.

My doctor sent me a letter dismissing me as a patient which I got yesterday.  That is ok because I wasn't going back to him anyway.
I am seeing someone new anyway and she might be able to really help me.  She gave me some kidney complex and I am doing some castor oil packs with the heating pad.  Right after, I have to take a gallbladder nano detox.  I also have a new diet.  It is by blood type, so I hope this all helps me from progressing to dialysis or transplant.  Even if I can just stay here at 79% I would be happy.  Hope you guys will still let me stay even if I beat this thing.  I have been lurking for a few months already and have gotten to know some of you a little bit.  Hope I can be part of the family.  Looking forward to finally posting.

Thanks everyone and God bless.
Norma

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Normie

Kidney damage 4/22/07

Predialysis
aharris2
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« Reply #1 on: November 03, 2008, 10:53:35 AM »

nice intro norma n :welcomesign;
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My dear Rolando, I miss you so much!
Rest in peace my dear brother...
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« Reply #2 on: November 03, 2008, 11:00:06 AM »

Welcome to our community!
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
willieandwinnie
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« Reply #3 on: November 03, 2008, 11:06:26 AM »

Wow Norma. Great introduction.  :welcomesign; We are a terrific group with lots of information and even more support. Hope you post often.  :cuddle;
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paul.karen
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« Reply #4 on: November 03, 2008, 11:55:11 AM »

WOW norma  WOW.

Thank God for the internet and your own willingness to do what the doctors wouldnt.

 :waving;  great to have you here.
Paul
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
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« Reply #5 on: November 03, 2008, 12:33:44 PM »

Norma.  Stop worrying!  Your creatinine is below 1.  You have almost 80% kidney function!  Go in once a year for tests... not everyday.  Glad you got off the Atkins diet.  Really bad for kidneys!  If you do have kidney problems one of your docs was right a low protein diet is best.  Protein is Hard Hard Hard on your kidneys.  You are not doing your blood pressure any good by worrying!  Stop!  Take a breath!  Go get a massage once a week and stop paying these doctors your hard earned money.  You kidney function may be reduced but you are not NEAR kidney failure. 

I hope you stay on this site.  It will make you feel better to read about really sick people. 

                                                                                      :welcomesign;
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« Reply #6 on: November 03, 2008, 12:46:04 PM »

Welcome aboard.  Lots of good info here.  Come back and post often.
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monrein
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« Reply #7 on: November 03, 2008, 12:55:12 PM »

 :welcomesign;  Glad you decided to join us Normie.  Good you quit the Atkins diet for sure and my one other caution is to be very careful of naturopathic stuff.  Research them very, very carefully and check them out with a western medicine type doctor.   :waving;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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« Reply #8 on: November 03, 2008, 03:04:46 PM »

 :welcomesign; Is there a teaching university near you? I have noticed for the most part since all my care is based with the hospital that did my transplant (pre-transplant as well) that I didn't get a run around as much. The different departments commmunicate with each other.

I had 70% function after the birth of my youngest and was assured my function was returning, a bad bout with the flu 5 years later I found out I had less than 20%.
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« Reply #9 on: November 03, 2008, 03:12:07 PM »

 :waving; :waving; :waving;
 :welcomesign;
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« Reply #10 on: November 03, 2008, 03:14:30 PM »

Welcome Norma, Their are a couple of us on this site who live in WI. I am in the Milw area and can help if you want with Doctor referrals. Great intro and stick around for as long as you want.

Boxman, Moderator
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« Reply #11 on: November 04, 2008, 12:49:37 AM »

Welcome Normie, good to have you aboard.
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Normie
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Ellie

« Reply #12 on: November 04, 2008, 03:15:24 PM »

Thank you all for the warm welcome.   :grouphug;

Glad you liked my introduction.  I was a little worried that it might be a bit toooo loooong.
I hope to learn a lot here from all of you.

Rerun   I don't think I could wait a whole year to do tests.  I would worry too much.  The new Neph is already going to check for anemia in March.  That is scary.  Maybe that was because my GFR was 55 at that time.  It is 79 now  :)

Monrein  I was referred to her.  My primary DO even told me to go see a Naturalpathic person.  Hopefully she can help.  It is the Western doctors that would worry me.

Paul   Yes, thank God for the internet or I would not know what happened with the damage to the kidneys etc.

Romona  I will look into the teaching university or something like that.  Thanks.

Boxman  You already gave me your doctor's name and number.  I contacted you by PM.  Thanks.

Thanks again.   :grouphug;

Normie
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Normie

Kidney damage 4/22/07

Predialysis
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« Reply #13 on: November 04, 2008, 09:24:30 PM »

Welcome to IHD Normal,  :rofl;

What a nice introduction. Good thing you were on the ball, noticing your GFR early. I hope you learn plenty by visiting us. There is a ton of information and experience within these forums. If you need anything just ask. See ya in the forums.  :welcomesign;

Sluff/Admin
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Calvin

« Reply #14 on: November 04, 2008, 09:28:26 PM »

WOW Normie!!!!!!!!    That was a great intro but Lord, how in the world did you remember ALL THAT?????     Do you keep it all written down or was all that written from your head?   AWESOME either way!   and   :welcomesign;
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Diagnosed with ESRD-November 2006
I have had 2 fistuals-neither one worked
I have had 2 grafts the last one finally "took"
I had 3 different catheters from Nov. 06 - Dec. 08
Got on the transplant list - Halloween Day 2008

You can easily judge the character of others by how they treat those who they think can do nothing for them.    I BELIEVE THIS TO BE SOOOOO TRUE!
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« Reply #15 on: November 04, 2008, 09:40:02 PM »

Hi & welcome Normie. An intro can never be too long. It was good that you shared your experience, we all have much to learn from each other. Thanks for posting, stay & post often.
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Normie
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Ellie

« Reply #16 on: November 05, 2008, 08:00:08 AM »

WOW Normie!!!!!!!!    That was a great intro but Lord, how in the world did you remember ALL THAT?????     Do you keep it all written down or was all that written from your head?   AWESOME either way!   and   :welcomesign;


I have to write everything down.  Have trouble with memory.  I am building a running log of apts., tests, etc.
Thanks for the welcome. :)
Normie
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Normie

Kidney damage 4/22/07

Predialysis
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« Reply #17 on: November 05, 2008, 06:32:14 PM »

 :welcomesign;  Normie, glad to have you with us.  This is a great site and I hope you find help and support here.   Looking forward to more of your posts.







paris, Moderator
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« Reply #18 on: November 05, 2008, 09:47:12 PM »

Welcome to our community,Normie!  Of course your intro was not too long.  The founder of this site, Epoman, just loved long intros.  that way we get to know you and your situation.  You see, this site has become a family  :grouphug; so we want to hear how you are doing.  Since you lurked for a while, you already know what this site has to offer.  Just keep reading and keep posting.
Looking forward to hearing from you.



Bajanne, Moderator
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I LOVE  my IHD family! :grouphug;
florida.flyer
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« Reply #19 on: November 06, 2008, 06:39:59 AM »

Hi Normie!  I am so impressed with your pro-active attitude! You go girl!  I have always said we have to be in charge of our health because we are the only ones who truly care about the outcome.  I n-e-v-e-r trust what a doctor has to say until I check it out.  some people are just so shocked that a doctor can make a mistake.  well, they do. no body is perfect.
Here's hoping your kidneys can hang in there, it is possible.  :bandance;
Patty
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Normie
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Ellie

« Reply #20 on: November 06, 2008, 10:20:03 AM »

Hi Normie!  I am so impressed with your pro-active attitude! You go girl!  I have always said we have to be in charge of our health because we are the only ones who truly care about the outcome.  I n-e-v-e-r trust what a doctor has to say until I check it out.  some people are just so shocked that a doctor can make a mistake.  well, they do. no body is perfect.
Here's hoping your kidneys can hang in there, it is possible.  :bandance;
Patty

Patty thank you so much for your support.  It is risky to be pro-active and you don't always get support.  I agree with you that we must be in charge of our health care.  After all, it is OUR business not just the doctors.  Who pays the bills!

Thanks I hope my kidneys hang in there too.   :cuddle;

Normie
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Normie

Kidney damage 4/22/07

Predialysis
Normie
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Ellie

« Reply #21 on: November 06, 2008, 10:28:30 AM »

I want to thank everyone for the wonderful welcome.    :flower;

It is truly exciting  :bandance; to be here and part of this loving family.   :grouphug;

Normie
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Normie

Kidney damage 4/22/07

Predialysis
Ang
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« Reply #22 on: November 07, 2008, 06:25:10 PM »

 :welcomesign;


great intro  normie
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live  life  to  the  full  and you won't  die  wondering
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