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Subeat
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« on: August 18, 2011, 05:28:19 PM »

Recently learned I meet the criteria to join this board.  First the introduction basics...

My name is Susan.  I am soon to be 43, married, mom to a 17 year old boy and a 13 year old girl.  I have had hypertension discovered with my first pregnancy, under control with meds and no other issues.  Over the past year, I had noticed a decrease in appetite, and increasingly itchy skin.  In the last couple of months,  I added fatigue to my symptoms.  On our family trip to Disney World, the fatigue worsened dramatically.  I was convinced all of this was due to getting old and being out of shape, but decided to mention it at my already scheduled dr. appointment anyway.  Labs were run, and I was told to expect a call from the office Monday.

Saturday afternoon I get a call from the doc himself, all labs are great...except for one that is awful.  My creatinine was 10.  Arrangements would be made to refer to a nephrologist.  After some errors in communication, the neph's office told me no appointment, go straight to ER.  Creatinine was 12 by now, also extremely dehydrated.  Over the next few days, I had every test they could think of, permacath in place, and dialysis begun.  Fevers led to discovery of UTI and cellulitis, which kept me inpatient for a few more days, then the decision to have my fistula surgery while I was still admitted.  All in all, an 8 day stay.

While it was initially assumed my high bp was to blame, ultrasound revealed I actually have PKD.  No family history of kidney disease on either side.  To say I am overwhelmed by all the new info in am taking in would be an understatement.  I began my first week of in center treatments this week, and it is going well so far.  I am not a candidate for PD due to the size of my cysts, but the center will be offering home hemo in several months and I will definitely be considering that when the time comes. 

Anyway...I am so happy to find this site to learn from others knowledge and experiences.  I also appreciate the chance to talk with others in similar circumstances,  I don't seem to have much in common with the other folks I've seen at the center...other than the obvious I suppose.
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willowtreewren
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My two beautifull granddaughters

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« Reply #1 on: August 18, 2011, 06:06:14 PM »

Oh, Susan.

I had read that PKD could be spontaneous. I'm so sorry. It runs in my husband's family. Besides my husband, his dad had it, his sister and also our daughter (whose liver is also affected).

 :grouphug;

You have had alot thrown at you in a short time. Home hemo was wonderful for us and allowed my husband to continue working full time.

 :welcomesign;

Welcome to IHD. It's a good place for support and information.

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
monrein
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Might as well smile

« Reply #2 on: August 18, 2011, 07:42:13 PM »

 :welcomesign;  Susan...glad you found us but what a dreadful time you've had.   :cuddle;
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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
MooseMom
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« Reply #3 on: August 18, 2011, 07:46:22 PM »

What a shock you have had!!!  I'm hoping that you will find lots of information and support here; I think you will!  I will be very interested to hear your thoughts about starting home hemo because that's what I plan to do in the future. 
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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."
boswife
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us and fam easter 2013

« Reply #4 on: August 18, 2011, 07:57:35 PM »

wow...  im so glad you found your way here and please post away.  It is amazing the help it is just knowing that someone really understands..   :welcomesign; and hope you get the help you need...
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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
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #5 on: August 19, 2011, 08:46:53 AM »

Welcome to our community, Susan!  So glad that you found us - so sorry that you had to!  This is just the place for information, support and encouragement.  You will be certain that people here 'get it'.   You are now a part of the IHD family  :grouphug;  a genuinely caring and sharing group of people.  Just read as much as you can, and post as much as you can.  We need to know how you are doing.





Najanne, 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;
Rerun
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Going through life tied to a chair!

« Reply #6 on: August 19, 2011, 09:10:22 AM »

Hi Subeat, and welcome to IHD.  I'm so glad you found us.  It is so hard to be flung into dialysis without any time to prepare yourself.  I was the same.  Didn't know a thing but that I was hooked to a machine that was supposedly saving my life.  That was 25 years ago.  I've learned a lot since then.   :urcrazy;

I hope you come here often.  The more you read and learn the more confident you will become with all this.

Rerun, Moderator       :welcomesign;
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looneytunes
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Wishin' I was Fishin'

« Reply #7 on: August 20, 2011, 12:32:25 PM »

Hi subeat and welcome!   :welcomesign;  Great intro you've given to us.  I hope we can help you along the way. 
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"The key to being patient is having something to do in the meantime" AU
texasstyle
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« Reply #8 on: August 20, 2011, 03:24:45 PM »

I'm so glad you're here because I sware, you will learn so much on these boards and from these great people. It's a lot to take in. My husband is on dialysis the past 4 years. Don't feel that being being on dialysis means your life is over, is it actually a life saver! In time, you will learn how to manage your life accordingly and make the best of it. I'm not even on dialysis and I have my crappy days too lol.
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caregiver to husband using in-center dialysis 4 years
Ang
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« Reply #9 on: August 20, 2011, 07:36:12 PM »

 :welcomesign;
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live  life  to  the  full  and you won't  die  wondering
Poppylicious
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« Reply #10 on: August 21, 2011, 09:44:42 AM »

 :welcomesign; Susan!
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
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