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Hello from South Dakota
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Topic: Hello from South Dakota (Read 3580 times)
Tallons5
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Hello from South Dakota
«
on:
August 10, 2009, 09:58:59 PM »
My name is Frank, I am a Dakota Sioux Native American, just celebrated my 49th birthday and on the 25 of this month will receive my tube?, home Dialysis. home Dialysis, something I am having great difficulty accepting and even more difficult to type, this really is real.
On the 9th my wife and I celebrated our 11 year anniversary, she is Type 1 diabetic, we always new that one day this might be her future we could actually joke about it! Mom was saving her kidney for her daughter, I have read many things here that lighten my spirits and wish to say Thank you for accepting my membership.
I was born with only one kidney and congenital birth defects, have had many hospital stays over the years for complications, infections, surgical corrections I should say all this up till age 18 nothing after that except for urinary tract infections now and then.
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Rerun
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Going through life tied to a chair!
Re: Hello from South Dakota
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Reply #1 on:
August 10, 2009, 10:06:55 PM »
Hello Tallons5 and welcome to IHD! I'm sorry you have to be in this world of dialysis, but you will learn here that life does go on. And we have a choice to live where people with some other organ failures don't.
I'm so glad you found this site. It a great support!
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willieandwinnie
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Re: Hello from South Dakota
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Reply #2 on:
August 11, 2009, 04:45:03 AM »
Frank. Glad we lightened your spirits, stick around. Great information and support all around here. Please post often and Happy Anniversary a little late.
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"I know there's nothing to it, but I want to know what it is there's nothing to"
monrein
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Might as well smile
Re: Hello from South Dakota
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Reply #3 on:
August 11, 2009, 04:45:44 AM »
Frank. Glad you found us.
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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!
Re: Hello from South Dakota
«
Reply #4 on:
August 11, 2009, 07:06:25 AM »
Welcome, Frank. When you say "tube," are you talking a fistula for home hemo or a catheter for PD? Just wondering. Come on back and post often.
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Tallons5
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Re: Hello from South Dakota
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Reply #5 on:
August 11, 2009, 09:37:02 AM »
Greetings to all, and thank you for the hello!
I have learned a lot already been reading so much my eyes are burned I think! anyway still trying to grasp this Dialysis thing, difficult as it is I do know life goes on I have been through more than most in life perhaps and have not given up yet I guess I have a strong life will.
When I said -tube- I believe its called -Catheter- placed in my lower belly to come out somewhere perhaps top of my head! not sure depends on the doctors mood I think! this is for home Dialysis tho no machine like many I have read about is to be just gravity I am told was told this was easier, 4 times a day more I am not sure of went to the class but spent most of the time starring out the window!
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paris
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Re: Hello from South Dakota
«
Reply #6 on:
August 11, 2009, 10:20:45 AM »
Tallon, we are very glad you found us. This is an incredible site for information, but also for support. Someone will always have an answer to any question you have. I have learned more here than any of the doctors I have seen. There is so much to learn and when they are explaining things to me, sometimes all I hear is "blah, blah, blah". It can all be very overwhelming. We are here, anytime you need us.
Looking forward to reading more posts from you. Welcome to IHD
paris, Moderator
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Tallons5
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Re: Hello from South Dakota
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Reply #7 on:
August 11, 2009, 11:13:10 AM »
Yes that sounds like what I heard and inbetween something about sitting on my head to fill up and sitting up right to empty....not so sure if thats right, seems kinda wierd you know.
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Tallons5
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Re: Hello from South Dakota
«
Reply #8 on:
August 12, 2009, 09:15:58 PM »
I feel it important to say that I don't drink Alcohol or smoke or even take drugs! you know the bad ones I guess the only vice I have is that I love potato chips, My wife has argued for years how terrible it is to eat chips but I found ways to sneak and hide the bags!, I can't believe that this was the cause of my kidney failure, just kidding about that, About 4? years ago I found I was having a lot of pain in my lower legs, I have always been physically active and in shape we went to doctor after doctor and no reason was ever found finally the pain was with me morning to night making it difficult to walk then the numbness set in along with weakness, I couldn't feel my toes but stranger still the pain became burning, someone said Neuropathy and I was put on pills, 1200 milligrams daily it helps except at night sometimes well most times. I have always had infections from time to time never had Insurance so managed myself drink a lot of water and eventually the infectons went away, when we finally had insurance we went to lots of doctors and specialist but no one had any answers, later as I became weaker I stopped working became a stay at home dad. Finally year ago? met a Neph. who asked if anyone had ever talked to me about kidney failure and transplant, I always had high protein in my urine and my keratin? was 5+ my percentage is at 19% from what little I have read it seems to be not bad, altho I do have only one kidney perhaps that is a factor, no insurance but I am going to the closest Tribal hospital (2 hours each way trip) a blessing especially now, Doctors and clinics seemed to be more concerned with how they were going to be paid less with my situation it seemed. so as I am still trying to accept what is to be my future the day comes closer, I finally got an appointment with Social Security to file for Disability would you believe the day after my Catheter surgery! it was either that or wait another month or so! and I need to get things started so will need to be strong.
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kellyt
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Re: Hello from South Dakota
«
Reply #9 on:
August 12, 2009, 09:35:58 PM »
Welcome to this crazy family!
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!
Tallons5
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Re: Hello from South Dakota
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Reply #10 on:
August 12, 2009, 09:42:18 PM »
Hi again..forgot to add that I was diagnosed with high blood pressure couple years ago and acid reflux? have been on meds for both. I was also on depression medication for 7 years until last year discovered that the medicine I was on was extremely harmful to Kidney function I went cold turkey something I would not wish on anyone!! perhaps that is why I am on the trail I now face well anyways my wife most certainly needs me as do my children, we have 2 a boy and girl, we wanted children after we were married and adopted both, my wife being type 1 diabetic I would not place at risk and being American Indian parents there were children who needed a home, my son is actually my nephew! his mother, my sister was killed by her boyfriend and our daughter was given up by 2 young kids in trouble with drugs, They are my life my existence, as much as I hate what is to come I will not weaken.
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Tallons5
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Re: Hello from South Dakota
«
Reply #11 on:
August 12, 2009, 09:44:49 PM »
To Kellyt, Thank you for the welcome! I was busy being long winded when you posted.
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kellyt
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Re: Hello from South Dakota
«
Reply #12 on:
August 12, 2009, 09:46:05 PM »
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!
Jean
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Re: Hello from South Dakota
«
Reply #13 on:
August 12, 2009, 11:42:24 PM »
Welcome to IHD. Sorry you have had such a bad time of it, and hope that all you learn here will help you out. Ask anything you want, every one here is glad to help. I myself am not on Dialysis yet, with a GFR of 22. Good luck to you and to your family.
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One day at a time, thats all I can do.
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
Re: Hello from South Dakota
«
Reply #14 on:
August 12, 2009, 11:49:00 PM »
Hi Tallon. This might sound strange, but I'm really excited you've joined cos I have never in my life spoken to a native American Indian before. I'm in New Zealand. Anyway, welcome to IHD. I also do PD and I find it really simple, and not too much of a burden. Lots of rubbish bags though - and lots of boxes! Your family sound lovely.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008. Now on PD with a cycler. Working very part time - teaching music. Love it. Husband is Paul (we're both 46), daughter Molly is 13.
paris
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Re: Hello from South Dakota
«
Reply #15 on:
August 13, 2009, 09:29:45 AM »
Tallon, your story becomes more and more fascinating. You and your wife are wonderful examples of pure love. I am sure your children are loved and cherished. And yes, you must continue to stay strong for them. I already posted a welcome, but had to post again, because I was moved by all I was reading about you. Keep posting -- we are reading all of them.
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten
Re: Hello from South Dakota
«
Reply #16 on:
August 15, 2009, 10:00:04 AM »
Welcome to our community! What an interesting history! I am truly looking forward to hearing more from you. You are now part of a wonderful genuine family
and as you would know by now, this is the best place for information, support and even fun. Just keep reading and keep posting. We will be with you all the way on your renal journey.
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!
Tallons5
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Re: Hello from South Dakota
«
Reply #17 on:
August 17, 2009, 12:04:38 AM »
To Hanify greetings from Indian country!! so sorry not to respond earlier I do hope this is not to late and to everyone thank you again for the welcomes and words so kind, I have learned much already some things worry me others give hope it is no more different than life I suppose, Hello to all!
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Tallons5
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Re: Hello from South Dakota
«
Reply #18 on:
August 17, 2009, 02:36:21 PM »
Hello! In my home I am the 'cook' my wife beautiful and talented as she is has never been a 'cook, housewife' type person not that I would ever complain my worry is at times like this my family eats only cereal because dad doesn't feel like cooking.
On Saturday my kids and wife went to the city fair I stayed home and with my father-in-law's help rebuilt my scooters motor, a situation caused by my not checking the oil when I should of!! when we had finished I cleaned up and then met my wife/kids at the fair and we stayed until closing time whew! longest day I have had in months....now having woke up from a sleep coma of 10 hours straight something I never do (sleep straight for 10hrs) I feel totally wiped-out with no energy at all, there will be a cold supper tonight, bad dad I know but experience has shown it will take couple days before I regain my strength and my pain level lowers, my children have more happy memories as do my wife and I, (we watched them ride the rides).
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jessup
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Gemma - the tucker monster
Re: Hello from South Dakota
«
Reply #19 on:
August 17, 2009, 05:41:18 PM »
G'day and
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