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Author Topic: Hello - low platelets - uremia - & neprhologist referral  (Read 4910 times)
swramsay
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My son, Scotland, is my heartbeat.

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« on: December 31, 2008, 12:06:10 PM »

Hi everyone. First post. I began dialysis in September after surgery to remove my second kidney. My first kidney was removed 2 years ago - both as a result of bladder cancer. I am 51, married and have one amazing 10-year-old son. I am trying to remain as normal and active as possible but am experiencing some problems associated with uremia as far as I can tell. High potassium and phosphorus. Low platelets. I was feeling very faint at the gym yesterday while doing cardio.

1. Ever since surgery and dialysis the day following, my platelets have been a problem going as low as in the 20's. They hover between 40 and 80 most of the time. I suspect strongly that is it associated with something going on in dialysis. I have found an article here and there referencing dialysis associated platelet loss but my current nephrologist, my past nephrologist, and the dialysis team say they are not familiar with this. Has anyone here experienced dialysis associated platelet loss? I have has the heparin antibody test 3 times. Each time was negative. Even so, I do not receive heparin during dialysis nor for my catheter blocks. I read somewhere that the membrane composition of some dialyzers can influence platelet loss. Any other ideas? I am to begin training for home dialysis in a couple of weeks and am concerned about bleeding due to low platelets.

2. I am also experiencing symptoms of uremia. Difficulty walking, chewing, writing etc. (very disturbing), restless leg syndrome, sweats/chills, feeling toxic/cruddy, tired. My nephrologist seems disinterested and is unavailable for an appointment for 4 weeks (my first appointment with her). My phosphorus and potassium are high although I feel like I am watching what I eat fairly well. I am concerned about the symptoms. Any input from anyone?

3. I live in the Seattle/Tacoma area and am looking for the best nephrologist that I can find. I hope I am not limited to the geographical area surrounding my dialysis unit. The rest of my medical team is in Seattle. I often travel to Seattle for the rest of my care. I am very proactive in my care and need a nephrologist that welcomes that and is willing to work & communicate with me and the rest of my medical team. ANY REFERRALS FOR A NEPHROLOGIST FOR ME?

Because I'm new here, if any of these questions should be posted elsewhere for better exposure, please let me know. Thank you. I am grateful for the resource that this email group will hopefully provide.

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JUST KEEP GOING.
March 2009: NxStage Pureflow Home Dialysis 5-6 x's week
Sept 2008: In center dialysis
Sept 2008: Left kidney removed (bladder cancer)
April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets.
April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer)
Feb 1994: Original bladder cancer diagnosis & beginning of this journey

www.marykay.com/wramsay
paul.karen
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« Reply #1 on: December 31, 2008, 12:14:26 PM »

Welcome to the community  :waving;

We have several members from the Sea-Tac area.  Maybe one could point you in the right direction for a new Neph.

May the new year bring you some good news.  See you around

P&K
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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
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #2 on: December 31, 2008, 02:12:13 PM »

Welcome to our community!  This is a good place for information as you will soon find out.  I can't help you with your questions.  However, you didn't say if you were prescribed phosphorus binders.  We need to take them with our meals to bind the phosphorus and increase the calcium.
I hope that someone from your area can help you (I am far away in the Caribbean).  This is a great place for support, and a place to vent when you need to.  In fact, we are family here  :grouphug;  Keep reading and keep posting, letting us know how you are doing.



Bajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
pelagia
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« Reply #3 on: December 31, 2008, 02:21:30 PM »

 :welcomesign; to IHD. 
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
lola
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I can fly!!!

« Reply #4 on: December 31, 2008, 02:57:22 PM »

 :welcomesign; my husband had MANY of the same problems and so we switched to home-hemo and that made him feel "normal" again
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willieandwinnie
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« Reply #5 on: December 31, 2008, 03:07:00 PM »

 :welcomesign; swramsayHope we hear more from you and please let us know what you find out.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
boxman55
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« Reply #6 on: December 31, 2008, 04:27:50 PM »

Welcome to IHD. You are going through alot. There are members hear who have also and can help. Ask your dialysis questions in the general forum for more exposure. Again welcome

Boxman,Moderator
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
jessup
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Gemma - the tucker monster

« Reply #7 on: December 31, 2008, 10:01:34 PM »

g'day and  :welcomesign;
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Wallyz
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« Reply #8 on: January 01, 2009, 07:28:30 PM »

Cyrus Crist, Virginia Mason.

anyone in that practice is good.
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Joe Paul
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« Reply #9 on: January 01, 2009, 11:24:13 PM »

Welcome swramsay, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
Chris
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« Reply #10 on: January 01, 2009, 11:36:03 PM »

 :waving; Hello and  :welcomesign; to the group
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Hilrose
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Me and my sister 09/08

« Reply #11 on: January 02, 2009, 04:43:52 AM »

Hello and welcome to IHD :bandance;

I hope you find the answers to your questions within the forums, perhaps when on home dialysis you will feel better. :welcomesign;
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hilrose- hemodialysis patient since April 2007
Transplanted from living donor March 2007 and failed
Kidney rejected August 2008 no longer considering removing
No longer on waiting list 2008

Neverless very happy to be alive!
G-Ma
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« Reply #12 on: January 02, 2009, 06:42:10 PM »

 :welcomesign;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Mimi
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For any who do not like me I use - prayer.

« Reply #13 on: January 02, 2009, 10:44:52 PM »

Hi and Welcome to IHD swramsay.  Keep reading and you will find the answers to your questions.
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Normie
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Ellie

« Reply #14 on: January 29, 2009, 03:17:40 PM »

Hi and  :welcomesign;

Glad you found us.  Welcome to our family.

Normie                  :grouphug;
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Normie

Kidney damage 4/22/07

Predialysis
MandaMe1986
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« Reply #15 on: January 29, 2009, 03:27:04 PM »

 :waving;
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
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