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Author Topic: Hello from Oklahoma!  (Read 2355 times)
AnnaLee
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« on: March 29, 2011, 03:52:59 PM »

Hi, everyone.   :waving; I'm a 57 y o female from Oklahoma.  I've been on dialysis since January when I woke up from emergency bypass surgery with this funny little set of tubes planted in my shoulder.  I was covered with tubes coming out of just about everywhere, but found out awhile later that this one wouldn't be coming out like all the others.  How rude not to even ask me if it was okay! Healthwise, my life has been in turmoil for the last few years and dialysis was just the latest insult.  I'm lucky to be blessed with four siblings who are willing to be living donors, so hopefully, there is an end in sight...a day when I can say "I USED to hate dialysis."  Meanwhile, my most immediate problem has to do with the battle to make me get a fistula done.  My catheter has been working fine, after a short bout with an infection that landed me in the hospital.  The dialysis nurse in the hospital told me to tell the dialysis nurse in the center that the tubes were dirty and they need to take better care.  So I suspect that was the source of the infection.  Yesterday, one of the doctors at the center gave me a loud tongue-lashing in front of everyone about my decision to think about it first before I decide to do the fistula.  It seems silly to have a other surgery that may or may not work when a new kidney is on the horizon.  I found this site while searching for forums with people talking "fistula vs catheter".  Looks like I found something better!  I'm looking forward to reading about all of you and becoming friends..... :bandance;
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MooseMom
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« Reply #1 on: March 29, 2011, 04:06:24 PM »

It is hard to make decisions like this when you feel like your catheter is working well, but the fact is that you've already had one infection, and infection is the main reason why catheters are the riskiest of all vascular accesses.  If you can't trust your clinic to keep your catheter clean, then it may be just a matter of time before you get another infection.  Remember that a catheter goes directly into your heart...

It would be great if one of your siblings will be able to donate; how far along in the evaluation process are you/they?  How certain are you that one of them will be an eligible and willing donor?  It takes several months for a fistula to fully mature, so if you think you will get a new kidney before then, I can see why you'd hesitate going in for surgery to create a fistula.

Welcome to IHD; I hope you find lots of answers to your questions. 
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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."
Brightsky69
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« Reply #2 on: March 29, 2011, 05:16:54 PM »

Welcome !   :welcomesign;

Did they tell you about  Peritoneal Dialysis?
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
willowtreewren
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« Reply #3 on: March 29, 2011, 05:29:22 PM »

Welcome, AnnaLee!

You didn't mention whether you have already gotten on the transplant list. Even though you have willing donors, you will have to go through the process of getting listed even before they can be tested to see if they are able to donate and/or are matches for you.

It took my husband 8 months to get listed (partly due to an incompetent social worker).

While you are waiting, you might want to consider better ways to dialyze than through your catheter.

Look around here for answers, and if you don't find them, ask. Lot's of folks here will jusmp in and help you! I know from experience.

 :welcomesign;

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. :)
TexanSummer
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« Reply #4 on: March 29, 2011, 06:38:26 PM »

 :welcomesign;

I know the feeling about wanting to think before committing to the fistula...my husband is going through that right now. He only got his cath about a month ago. Unfortunately, HE doesn't want to look into what all it entails, good/bad, etc & has me do all his "dirty work"  lol....which is how I wound up on here....these people have been AWESOME & so informative...just by reading about their own experiences has helped out a lot.

I'm about to start a thread in a bit to ask more on the fistula...if you have any questions/concerns that I don't mention, you're more than welcome to ask them on my thread or start your own....which ever you like...everyone here seems to read most everything & someone will have advice to give.

I'm rambling now..sorry....glad to have ya here now!
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Wife of Charles --
   diagnosed with psoriasis in 2000?
   no diagnosed kidney issues until 3 weeks ago
   diagnosed with ESRD 2/24/11
   found out birth defect of kidney valve was cause 2/28/11
   started dialysis  3/1/11
   I still have a level head....most of the time
AnnaLee
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« Reply #5 on: March 29, 2011, 07:13:39 PM »

Thank you all for the warm welcome...in answer to the question about my transplant process - I am halfway through all the clearances through doctors. Dental, cardiac, gyn.  My sisters are matches with blood types (one with my type, the other a universal donor), not sure about brothers.  Of course, the transplant center will not do anything with my donors until I am officially on the list.  My sisters are pretty funny...they are battling for the privilege to donate.  Think maybe they want a little time off from work? LOL
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TexanSummer
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« Reply #6 on: March 29, 2011, 07:25:32 PM »

You are so lucky to have a family that is so close! I pray everything works out soon for you! You are truly blessed hun   :grouphug;
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Wife of Charles --
   diagnosed with psoriasis in 2000?
   no diagnosed kidney issues until 3 weeks ago
   diagnosed with ESRD 2/24/11
   found out birth defect of kidney valve was cause 2/28/11
   started dialysis  3/1/11
   I still have a level head....most of the time
Poppylicious
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« Reply #7 on: March 30, 2011, 01:14:16 AM »

 :welcomesign; AnnaLee!  How lovely that your siblings are fighting for the honour of being your donor!

 ;D
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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)
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Everything was beautiful, and nothing hurt.
galvo
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« Reply #8 on: March 30, 2011, 04:41:05 AM »

G'day, AnnaLee, and :welcomesign; :ausflag; My experience has left me believing that catheter=nasty infection. Fistulas rule!
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Galvo
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« Reply #9 on: April 01, 2011, 11:58:46 AM »

Hi Annalee and welcome to IHD.  I'm so glad you found us.  I sure hope you get your new kidney soon.  You have a very giving family.

Rerun, Moderator    :welcomesign;
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looneytunes
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« Reply #10 on: April 02, 2011, 06:21:32 AM »

Hi AnnaLee from a neighbor (Southern MO) and welcome   :welcomesign;.

My hubby has had several catheters which have all ended with infections/sepsis.  Like your spouse, his thought was why go through another surgery when I have this perfectly good catheter to dialyze with?  Though each patient is different, we totally understand (NOW) the reason a catheter is so dangerous.  He much preferred using a catheter because it didn't involve needles.   But the tradeoff was not worth his life.  He now has a graft and has learned to self-cannulate. 

Hope to see more of you on the boards! 

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"The key to being patient is having something to do in the meantime" AU
boswife
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us and fam easter 2013

« Reply #11 on: April 02, 2011, 08:12:13 AM »

Im jealous looney!!!  That would be a big 'less' pressure/stress.  But, while i say that, im almost feeling this odd protectiveness over those buttonholes for even HIM to touch them....lol
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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
fc2821
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Just another hamster on the dialysis W.O.F.

« Reply #12 on: April 02, 2011, 02:40:57 PM »

 :welcomesign; AnnaLee  glad to have uou here.  Don't let them bother you wht is done can't be undone you just have tog on from where you are now.   I know about waking up with a cath in your chest, that's how I found out my kidneys had failed. One minute I was work and the next I wake up in a hospital room (it was really many, many hours later) with a  Dr standing next to the bed with such good news  :sarcasm; said "Your are lucky to be alive.  By the way your kidenys have failed and you might be able to walk again, but you're alive."  I just closed my eyes and went back to sleep, good drugs,  ;D .  Next day that was repeated this time I actually stayed awake.  He was right and I intend to stay that way, no matter what it takes. 
   You have come to a great place.  If you need a question answered, or know something this is the place.  If you need to vent or rant about soemthing, this is place.  Why?  Because we re all in this mess together and we will listen and help if we can.  So, please come back and join us. 
    By the way I use to live in SW Kansas right on the border with the panhadle of OK. 
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In center hemo dialysis since Feb 14, 2007. 

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peleroja
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« Reply #13 on: April 03, 2011, 06:57:44 AM »

Welcome to the group AnnaLee.  The main reason they get so gung ho about the permacath is that it leads directly to the heart.  You definitely don't want an infection traveling along the leads into the heart.  I went 7 years without a fistula because I was on peritoneal dialysis.  Sadly, now I have to get one due to a lab error which made them take out the catheter and now they can't put one back in.  I do agree that they err on the side of caution.  My friend had her permacath in for 13 months and nothing ever happened to her. 
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boswife
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us and fam easter 2013

« Reply #14 on: April 03, 2011, 08:51:06 AM »

 :embarassed:  I didnt even welcome you AnnaLee..  :embarassed:   Well, i do now  :welcomesign; . Im so glad you found your way here to these great helpers.  Hope you find as much comfort and info as everyone here :)  again..  :welcomesign;
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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
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