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AguynamedKim
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« on: September 28, 2010, 11:14:32 PM »

First of all, thank you to all of you who post, reply and administer this incredible web site.  You all are an amazing family of people who's caring, warmth and empathy creates the kind of down to earth hope that can only exist with a site like this.  You have all done a wonderful job fulfilling Epoman's dream - I am amazed every time I visit this site (which has been an incredible amount lately).  I don't believe there's a place out there that further epitomizes the adage "Knowledge is Power".  Thank you for giving me the power to help take back over my life.

I discovered this site by researching everything I could after looking up what could cause foamy urine.  I visited my doctor, told her my symptoms, and went back the next day for urine and blood samples.  After coming home, I heavily investigated my symptoms further (I also have high blood pressure but have been taking meds to help control it) and after visiting a number of sites, had "self-diagnosed" myself into renal failure and panicked.  Absolute sheer terror.  I didn't know how long I had for whatever was to come...or not come...next.  Then I found this website.  I spent days and days on it.  It was a rollercoaster ride.  I have felt so many things:  Hope about people living a long time on dialysis and living well (you go Zach!).  Power from the knowledge of different modalities and treatment options within those modalities (when itís time, I sure will take a look at PD, peleroja, you just keep wearing those hats!).  Happiness from all of the incredible humor (lock up your women, RichardMel's here!).  Inspiration for those whoíve gotten transplants (holy cow tamara, I never thought an avatar of someone holding a bag of urine would make me smile every time I see it).  Along with all that, the terrible sadness at discovering the passing of Epoman, Goofynina and others from the family.  I was a full 2 days into reading the website before I discovered the remembrances section.  After my brief, intense sadness of the passing of these people I considered heroes, I dug back into the site and was once again inspired to take on whatever it is I was about to take on.  I order Dr. Walserís book about Kidney Disease and read it cover to cover about 4 times.  I continued reading all the posts I could and started getting to know all of the incredible people that share themselves on this site.  I already started to feel like this support group was behind me, and I hadnít even introduced myself yet.

After a few more agonizing days I got my results back.  Blood Creatinine of 1.26 mg/dL (just under the normal limit of 1.27), eGFR of ">59", and other numbers normal blood wise but a urinalysis with 1+ protein (and Hyaline casts).  The doctor ordered a 24HR urine test because of the protein and casts.  This test comes back with a 24 HR protein value of 118 mg/24 HR which is apparently within the ďnormalĒ range of 30-150 mg/24 HR.  My Creatinine clearance comes back as 136 mL/min which is in the range of 97-137 mL/min.  My blood Creatinine at this test was 1.20 mg/dL.  The doctor said my kidneys are clearing waste products normally and weíll monitor function every 3-6 months.  Iím still concerned that with an eGFR in the 60s based on calculators Iíve found out there, along with the daily foamy reminder that things arenít quite normal, Iím still going to take some significant precautions and have dramatically changed my diet (vegetarian, low-sodium, low-protein), lifestyle (working out strenuously every day for 40 minutes), and monitoring my BP daily.  Iíve been struggling getting it down there but so far itís generally between 130-140 / 80-90.  So am I dumb to be concerned and in believing that CKD is now or in the near future in my life?  It seems that from what Iíve read, a GFR between 60 and 90 along with proteinuria defines Stage 2 CKD and while I donít currently have clinical proteinuria, I seem to be near enough to that cut-off point of a GFR of 60 that I feel I should be taking action to preserve the kidney function I have.  I know I probably really need another test to establish a baseline, but it seems foolish to me to not take this very seriously based on the many stories people have so generously shared.

Thank you all again.  Without this website, Iím convinced I would just say ďwell, things seem OKĒ, bury my head in the sand and continue without a genuine concern for my well being (and new found zeal for life).  I feel lucky in that it seems like Iíve gotten an early warning sign that allows me to take action and try to slow the progression of this disease if itís possible in my case.  I feel that regardless of what happens, thereís a group of people here that will help me through this.  Heck, I even became a premium member before my first post (thanks for your help, Sluff) because I felt it was the least I could do after all yíall have given me.

If Iíve not bored you with my story so far I can also add that Iím a 38 year old guy named Kim living in Houston, Texas.  I was born an orphan in Vietnam at the end of the war and was lucky enough to be adopted and taken to America on ďOperation Baby LiftĒ where I grew up in California and was raised by my wonderful parents who were a mixed race couple of a Caucasian man (who was a Marine during the war) and Vietnamese woman (who was a CIA ďliaisonĒ during the war) so I ďblendedĒ right in being half-Vietnamese.  I came to Houston for college and have loved being here ever since (even in August when you have to cut the air with a knife and jump in a pool just to dry off from the humidity).  Iím married to an awesome woman who is my best friend but have not yet been fortunate enough to have children.

Before I sign off on my introduction, I wanted to share a few thoughts:

I shall not mess with Rerun or Kitkatz.
Translations of strange,  foreign languages like those spoken in England and Australia are greatly appreciated.
Bajanneís avatar makes me smile fondly.
Okarol is never, ever allowed to change her avatar Ė that picture brightens my day every time I see it.  On top of it being an incredibly fun picture, I have a special fondness for Disneyland as I grew up in Anaheim, CA and it was my very first job.
Please keep posting.  I canít begin to list all of the little things that each of you have said that has been so important to me during this time.  So many of your stories have touched my life and the lives of others and you all inspire me to be a better man.  I canít thank you all enough.
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galvo
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« Reply #1 on: September 28, 2010, 11:30:30 PM »

G'day Kim. Howugoinmateallright? (Translated from Aus= :welcomesign;)
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Galvo
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« Reply #2 on: September 28, 2010, 11:34:27 PM »

Hello Kim. That was an awesome intro. I personally think you are doing the right thing by taking good care of yourself ahead of time. At a GFR of 60, that sounds wonderful to me, but you are young yet. So keep on keeping on and just keep an eye on things and you already know what they are. so,   :welcomesign;  to IHD and we are happy you joined us.
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One day at a time, thats all I can do.
RichardMEL
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« Reply #3 on: September 28, 2010, 11:37:44 PM »

WOW! Kim! What a intro post!!! (and not just because I got a mention, but I am sitting here blushing more than some of the women I chat up!  :rofl;).

That was an awesome post. It seems you've lurked for some time and quietly got to know all of us! Instant addition to our family - welcome, g'day!!

As I was reading your story I was actually thinking two things - much like you yourself seem to have been - on the surface your numbers are good, and right now there's no cause for concern *BUT* you are on the edge of some, and with the protein there, that's a sign that you probably do need to be concerned on some level.

What I'm interested to know is  what has the neph actually said? Have they encouraged you to change your diet and routine and stuff? How often are you being monitored?

I think it's great you're taking all these steps to preserve your function as much. The only advice I would give is to try and live as normally as possible though - make sensible changes but I wouldn't go overboard at this stage. There may be every chance that you don't get any further down kidney function wise.

It is great that you've caught this as soon as you have (whatever it is) and even doing things like exercise and being on BP meds I think will go a long way to improving your overall health.

Again a great post and wonderful to have you with us!

 :welcomesign;

RichardMEL, Moderator and locksmith  >:D
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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Photo is Jenna - after Disneyland - 1988

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« Reply #4 on: September 28, 2010, 11:55:03 PM »

 :bow; Very impressive Kim!
You've certainly done your homework! Great intro!
I hope your kidney function stays steady for a long time.
Thanks for joining the forum!
 :welcomesign;
okarol/admin
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
monrein
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Might as well smile

« Reply #5 on: September 29, 2010, 05:01:44 AM »

 :welcomesign; to IHD.  Loved your intro and your take charge attitude.   :flower;
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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
peleroja
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I have 16 hats, all the same style!

« Reply #6 on: September 29, 2010, 08:47:23 AM »

First of all, thank you to all of you who post, reply and administer this incredible web site. 

Can I get an AMEN on that!  Welcome to the group.  Tons of good information and friends here.  Glad you joined!
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cariad
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What's past is prologue

« Reply #7 on: September 29, 2010, 12:24:31 PM »

What an industrious little researcher you are, Kim!

Croeso i'r IHD!

(Welsh for welcome, a most strange and foreign language spoken in the UK, but thankfully not as strange as Galvo's Austrailian.....) :) 

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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #8 on: September 30, 2010, 11:48:25 AM »

Welcome to our community, Kim!  What a great intro.  That is the kind that would have brightened Epoman's day!  He loved wordy intro (and so do we all).  You know us so well now that it seem superfluous to tell how great this site is.  All I can do is give you the family hug  :grouphug;  And I do look forward to hearing more from you.  So keep reading and keep posting.
PS I have on occasion considered changing my avatar, but until their picts are on every page of this site, I just can't!


Bajanne, Moderator
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I LOVE  my IHD family! :grouphug;
AguynamedKim
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« Reply #9 on: September 30, 2010, 11:56:56 AM »


What I'm interested to know is  what has the neph actually said? Have they encouraged you to change your diet and routine and stuff? How often are you being monitored?

RichardMEL, Moderator and locksmith  >:D

Excellent question, Richard.  I am going back and forth with my doctor about getting an appointment with a Neph.  I have requested to get an appointment with a Neph and Renal Nutritionist last time I visited my doctor to discuss the results.  I was looking for a referral, otherwise the appointment is far more out of my pocket.  I don't need a particular doctor, just the referral to see one and on my last visit she didn't feel it was necessary.  I was a bit bewildered by everything so I didn't challenge it at the time but I've since scheduled another appointment and have been correspoding with my doctor via the patient website.  I am personally conflicted because I don't want to waste a Nephrologist's valuable time that might be "better" spent helping someone who's at a later stage of CKD but at the same time I'd really like to be as aggresive with my "treatment" as I can.  I take so very seriously the lessons I've heard from people on this website and while I'm not terrified like I once was, I also know I want to value any time I have and make it last as long as possible.

Thank you all for the welcome.
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MooseMom
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« Reply #10 on: September 30, 2010, 01:53:58 PM »

Oh cool...I'm from Houston, too!  August in Houston...what a delight!

Your neph will be paid handsomely for the few minutes your appointment will last.  I'd bet that s/he will be glad to have a patient that is actually willing to do some preventative work.  I'm constantly astounded by the number of patients who are quite cavalier about their health and can't be bothered to do what it takes to stay healthy.

If you are concerned enough to want a referral, then you should have one.  End of story.  Your time is just as valuable as any doctor's.

If you are not diabetic, the most important thing you can do to protect your kidneys is to monitor your BP.  Diabetes and hypertension are the two most prevalent kidney-killers.

Keep copies of all of your labs.  I've done this since 2004, and it has been a very valuable tool that helps me stay on top of my disease.  Look for trends.  Try not to be overly concerned if one number goes wonky at one time; your lab report is a snapshot on what is happening in your body on that day.

CKD affects different people in different ways; I can't stress that enough.  So while stories you read on IHD are informative and interesting, you MUST remember that not everything you read here will be relevant to you and to your own body.    Welcome to IHD!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
AguynamedKim
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« Reply #11 on: September 30, 2010, 02:11:11 PM »

Thank you very much, MooseMom.  That's a lot of really good advice.  I've definitely been watching my BP.  It's finally getting into the 120's/70's so I'm cautiously happy.  Perhaps the working out, losing weight, taking my meds diligently, not stressing about work (or much of anything) and watching my diet is paying off.  I'm actually graphing my BP that I take twice a day and starting to look for a program to record my diet each day (I think I saw some trheads in the Diet section here on IHD).  And heck yes on recording my labs - I electronically scan and record everything (hopefully for a very long time).   :)
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MooseMom
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« Reply #12 on: September 30, 2010, 02:21:00 PM »

Well ya know, you're doing what everyone should be doing whether or not you have CKD...watching your weight, getting exercise, taking whatever meds you need to take, and more important than you may think, watching your stress levels.  You are diligent and active and watchful...the perfect combination to keeping yourself sane and healthy.

As far as the diet is concerned, do please be careful.  You probably don't have to watch things like phosphorus and potassium, so it will be easier for you to be well-nourished.  The difficult thing about the renal diet, in my humble opinion, is that advice tends to put a lot of weight on words like "limit" and "avoid" and "don't".  Since your diet doesn't have to be so restrictive, try to look upon your diet as nourishment, not a punishment.  I think if you cook your own meals from scratch, you will so easily avoid the crap that can be so destructive to ANY body, especially to a renally challenge one.  The foods that those of us with CKD4/5 have to avoid have GOOD things for people like you.  Enjoy your food, and enjoy the nutrition it gives you.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
AguynamedKim
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« Reply #13 on: September 30, 2010, 02:29:24 PM »

That is an awesome perspective that I really needed.  Thank you, MooseMom.
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boswife
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us and fam easter 2013

« Reply #14 on: September 30, 2010, 07:10:00 PM »

Welcome Kim  :welcomesign;  You are so right about this being an absolutly amazing place to be..  Wish i too had been on here way back.. WE would have been much more driven to do the right thing..  Lesson learned.  I love the advice your given, and your super intro.. You sure have a handle on this stuff, and may ward it off all together.. That would be great!!!  but at least your going to find out about living well pre and post D.
Glad you found your way here  :2thumbsup;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
RichardMEL
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« Reply #15 on: September 30, 2010, 07:30:32 PM »

I totally agree with MM that the neph would probably really be happy to see you - even if s/he thinks you're maybe jumping the gun a bit or being a little too reactive - I always live by the motto it's better to be safe than sorry - and specially in things medical!!! How often do you hear about men that refuse to even mention a potential health thing because they feel they need to be supermen, or macho, or something.. and then when it's too late... ugh! So you'd be mighty rare. They'd probably also love that you'd come in fairly well informed on the subject at hand and could ask informed and reasoned questions. It would NOT be a waste of time to get an opinion and checked out. I think it's great you're being so proactive and willing to do anything you can to stave off kidney damage (btw I'm still not 100% convinced that you are facing serious kidney issues at this stage, but then again I'm NOT a doctor).

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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
AguynamedKim
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« Reply #16 on: September 30, 2010, 08:41:16 PM »

You may not be a doctor, Richard, but I sure do value your opinion along with everyone here.  After hearing of so many stories of misdiagnosis, chance diagnosis, or very late diagnosis, I just want heed those warnings.  I already feel that my physical health has improved and my mental health has dramatically improved since discovering this site.  I really do owe that to you all, so keep that input coming, and thank you for putting up with my questions.
 :bow;
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Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #17 on: October 01, 2010, 02:59:05 AM »

I really do owe that to you all, so keep that input coming, and thank you for putting up with my questions.
 :bow;
There is nothing named 'putting up' here - you're family  :grouphug;
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I LOVE  my IHD family! :grouphug;
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