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I need Dialysis soon
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Topic: I need Dialysis soon (Read 6197 times)
irv31
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Re: I need Dialysis soon
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Reply #25 on:
December 26, 2008, 08:04:07 AM »
You guys are so supportive its amazing Ive told my family and friends about this site and they are all joining so they can see what Im going thru and ask alot of questions, I go to Cornell Medical Jan 6th,Irv
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Irv
monrein
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Might as well smile
Re: I need Dialysis soon
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Reply #26 on:
December 26, 2008, 08:27:39 AM »
Good move Irv and we look forward to meeting your family and friends too.
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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
pelagia
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Re: I need Dialysis soon
«
Reply #27 on:
December 26, 2008, 08:57:29 AM »
We look forward to meeting the family, Irv!
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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
Wallyz
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Re: I need Dialysis soon
«
Reply #28 on:
December 26, 2008, 09:41:30 AM »
Hey Irv, welcome.
Ditto getting the fistula, and start pushing now for home hemo dialysis. You will probably want to go on dialysis before you transplant.
I have diabetes as well, and I am on the list in Seattle. I have kids about your kid's age, and I know how sad/frustrating/scary that can be.
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kellyt
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Re: I need Dialysis soon
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Reply #29 on:
December 26, 2008, 09:45:38 AM »
Irv, that is
wonderfu
l that your family is interested in joing and, more importantly, learning about your struggles! Before joining this site I knew no one personally with kidney disease or who was or had been on dialysis. I
myself
knew nothing about the disease or the struggles to come. Bless them and bless you! This site is great!
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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!
Ang
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Re: I need Dialysis soon
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Reply #30 on:
December 29, 2008, 10:15:00 PM »
Irv
i wish you well in your journey ahead, when to get a fistula is the $64,000
question, you need to be guided by your neph who should go by your bloods and your general well being.
remember information is power and you can always get a second opinion.
get the fistula earlier rather than later as it takes 6 weeks too mature and too be able to use
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live life to the full and you won't die wondering
Chris
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Re: I need Dialysis soon
«
Reply #31 on:
December 29, 2008, 10:41:51 PM »
Hello and
from another diabetic who has the eye problems, neuropathy, and a few other things wrong.
I suggest getting something done sooner than waiting till something gets worse. That's my experience with diabetes and it's complications.
«
Last Edit: December 30, 2008, 11:51:09 AM by Chris
»
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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?
Lucinda
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Life is great!
Re: I need Dialysis soon
«
Reply #32 on:
December 30, 2008, 10:47:06 AM »
Hi Irv and welcome. I am due to start dialysis next month and I have been putting it off for two years. I am afraid I am a bit stubborn and I am not enrolled in the very sensible school of thought - start early! All in all, I don't feel too bad. The nausea is a little irritating sometimes and the anemia is not great but is controlled with infusions and EPO. You will get a lot of support and knowledge here. I think everyone goes through the same thoughts as you are at the moment - as everyone here knows, I REALLY went through it. But after a while you come to terms with the changes you are going to be experiencing. Everyone here is absolutely terrific. The advice is invaluable and people like Kit, Zac, Monrein - everyone in fact, are an inspiration. Best advice I can give and it has been a great help to me over the past two years is to stick to a good diet and exercise regimen. Do everything that will maximise your remaining kidney function. Blood pressure is really important. Get blood pressure medication if your pressure is anyway high and cut back on eating a lot of salt. Try and keep you stress levels down and remember, of all the diseases you can get this is one of the best. There is at least an alternative there to keep you alive. One of the best ways to keep your stress levels down is to get your fistula in place ASAP. Just tell the doctor you want to have it done now. It will give you a much greater sense of security that it is there if you need it. As I said, mine has been in for two years now and has not been used but I feel so much better knowing it is there if anything goes wrong suddenly. I have had many family members with renal disease and most of them have lived to a good age, others weren't so lucky but my Dad died at 77 and his sister who had a transplant was well into her 80's and they had renal disease most of their lives. You need to take each day as it comes and try not to look too far into the distance. Take care of your health and fitness and don't waste this time when you are free from restraints worrying about the future problems. When you have to cope with it, you will.
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irv31
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Re: I need Dialysis soon
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Reply #33 on:
January 02, 2009, 06:53:52 PM »
Thanks lucinda
I just got out of the hospital , I came down with Pneumonia and had a congestive heart,ugh, I'm home now but i still feel weak, my creatinine level is still hovering around 4, Dr says my kidneys are around 20 percent, I wish I had an answer for everything but I don't, thank for all the support, Irv
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Irv
graeme
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Kathy, Graeme, Henry and Kallie
Re: I need Dialysis soon
«
Reply #34 on:
January 02, 2009, 07:32:12 PM »
Hi Irv,
I was diagnosed with IGA Nephropathy and hyper tension 10 years ago with a kidney function of about 20%. My renal Dr. prescribed blood pressure medication and which stabilised my kidney function which remained at 20% plus until late last year when it shot down to 8%... I had a Tenchoff cathater inserted and went on to Peritoneal Dialysis 4 weeks ago.
I have been fortunate that I have no other complicating diseases like diabetes and am otherwise quite healthy.
From my point of view, while there is something that can be done about removing the impurities out of your blood the sooner the better.
With regards to the fistula... Due to my location and the fact that there is no hemo clinic here they didn't give me one but I would take the advise from others in a similar situation to yourself (and your doctors). It may seem daunting at first but I'm sure you get used to it and you also have to consider the alternative...??
Lucinda offers good advise re diet and the resources on this site are fantastic.
I hope you are feeling better
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Diagnosed with IgA Nephropathy in 1999 aged 47 with 20% kidney function remaining.
October 2008 8% kidney function and introduced to Peritoneal Dialysis December (CAPD) 2008
April 2010 received a kidney from my living younger brother
Mellow
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Re: I need Dialysis soon
«
Reply #35 on:
January 03, 2009, 01:59:45 PM »
Sorry to hear about the hospital stay. There is a pneumonia shot you can get. I had one several years ago and so far so good. I guess I don't understand your doctors reluctance to recommend you get a fistula. I had the fistula put in about 3 weeks ago. They put in two. One at the wrist and one near the elbow. Something to do with my veins probably not developing at the wrist area. So probably just an ugly scar there. However, the surgery was simple and all my activities are back to normal. Can do yoga poses, lift weights, play pickleball, and anything else that involves my arm strength. Having the fistula makes me rest easier knowing that in a couple of months if I do need dialysis I will be ready.
I hope diet and excercise will keep me off dialysis forever but that may be wishful thinking. I monitor every bite of food that goes in my mouth for carbs, calories, protein, sodium and postassium. I would probably eat slugs if I thought it would help. Our situations are differenct in that you have chronic failure while my is acute. Caused by my immune system attacking my kidneys. My kidney biopsy showed my kidneys 85% scarred. Dead. I do go out to the mall every couple of weeks to Brookstone and sit in one of their $4,000 massage chairs for free for 15 minutes. And I am looking into reflexology (foot massage) to stimulate my kidney and immune system function. So far my creatine has reduced from over 7 to less than 3 in four months. However life seems to be a crap shoot. So who know what is really going on or to happen.
Since, I don't have any expertise to offer all I can say is what I am doing and maybe give someone a new idea that may or may not work for them.
Good Luck.
Mellow
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