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Author Topic: I need Dialysis soon  (Read 6194 times)
irv31
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« on: December 13, 2008, 02:18:09 PM »

Hello all, My name is Irv, I have watched my creatine level go from 1.5 to 4.3 in the last 6 months. I have been a diabetic for the last 20 years. The Doctors say its time to consider dialysis and put my name on a transplant list. I'm nervous to say the least. I dont know if I should wait until the numbers get worse or do something now. A friend recommended this site and it seems there is more to learn here than any clinic or doctors office. I am also now anemic,I have had 5 eye surgeries over the past year and a half. I have drop foot,neuropathy in my feet and now my stomach. The past 8 months I have been throwing up in the mornings,really just dry heaves. Doctors aren't really sure if its from the kidneys or something else. Upper GI series test said nothing was wrong. Pleas help me out there, I feel like I'm my last straw here.
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Irv
nursewratchet
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"Either do it, or don't do it, don't try"

« Reply #1 on: December 13, 2008, 02:26:49 PM »

This will be a great site for you.  Much support, and many questions will be answered.  The nausea and vomiting are definate symptoms.  Ask your Dr. if you can get a fistula placed now. That way, when you are ready for dialysis, you won't have to have a catheter in your neck.  The fistula is a permanent access for dialysis, and can be getting ready while you are waiting to start.  The catheter is only a temporary access, and can be very annoying, and quite dangerous.  Good Luck, and welcome.   :flower; :flower;
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Romona
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« Reply #2 on: December 13, 2008, 02:29:21 PM »

 :welcomesign;
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willieandwinnie
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« Reply #3 on: December 13, 2008, 02:52:39 PM »

:welcomesign; Irv. We are so glad that your friend told you about us. There is lots of information here so make sure you check out some of the older threads. You should see about getting put on the transplant list as soon as you can and if you have family members that are willing to get tested, get them lined up. We are a wonderful support group and we hope to hear more from you.  :cuddle;
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« Reply #4 on: December 13, 2008, 03:54:50 PM »

G'day and  :welcomesign;
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peleroja
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« Reply #5 on: December 13, 2008, 05:30:40 PM »

Welcome aboard, Irv.  It has been frequently said it's better to start dialysis earlier than later before you get so sick that it would take months to bring you back to "normal."  I wouldn't wait.  Pick whatever dialysis you want to be on and get started.  You will feel so much better when the toxins are removed regularly from your blood.  Good luck, and be sure and come back and post how you're doing.
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boxman55
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« Reply #6 on: December 13, 2008, 05:38:44 PM »

Welcome to IHD. You have come to the right place to get your questions answered. Please post often. We have a very informed group of people on this site.

Boxman,Moderator
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
G-Ma
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« Reply #7 on: December 13, 2008, 06:39:24 PM »

 :welcomesign;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
pelagia
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« Reply #8 on: December 13, 2008, 06:41:58 PM »

Welcome Irv.   :welcomesign;
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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
paris
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« Reply #9 on: December 13, 2008, 10:06:21 PM »

Welcome!  We are glad you joined this great group.   There will be many people here that can answer any of  your questions,  The members have expericed so much and will give you great advice.  Ask any question.  This is a great place to learn.  We are really good at giving support, too!!  Post often and tell us more about yoursel    Our battle cry at IHD is "knowledge is power". So learn all you can from those who are already living with kidney failure.   We are here to help.  :cuddle;






paris, Moderator
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monrein
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« Reply #10 on: December 13, 2008, 10:12:43 PM »

This will be a great site for you.  Much support, and many questions will be answered.  The nausea and vomiting are definate symptoms.  Ask your Dr. if you can get a fistula placed now. That way, when you are ready for dialysis, you won't have to have a catheter in your neck.  The fistula is a permanent access for dialysis, and can be getting ready while you are waiting to start.  The catheter is only a temporary access, and can be very annoying, and quite dangerous.  Good Luck, and welcome.   :flower; :flower;

What nursewratchet said is right on the money.   I look forward to getting to know you here.
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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
Joe Paul
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« Reply #11 on: December 13, 2008, 10:30:16 PM »

Welcome Irv, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
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irv31
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« Reply #12 on: December 14, 2008, 07:33:19 AM »

thank you all for your support, there is so much i need to learn, can some of you please share with me what your creatine level was when you started dialysis?  I spoke to my Dr about getting a fistula now they wanted me to wait a little while longer, in the mean time I have appointments for 3 different transplant places in the New York area. My biggest concern is that I have 2 little children, a son 3 and a daughter 7, this is so scary,sometimes I don't know if I will get to see them get married go to college etc. Don't you ever just feel like giving up all together?
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Irv
monrein
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« Reply #13 on: December 14, 2008, 07:50:53 AM »

I started with a creatinine of about 4 and a GFR of about 16%.  Everyone's different about how they experience symptoms so the numbers are not an exact guide to when you should start dialysis.  The first time around my numbers were worse but I can't remember them now as it was so long ago.

It is scary and of course many of us feel like giving up at various points but when you start to feel a little better you will gain the strength to go on so that you can see those sweet little children grow up.  Easy it isn't, possible it is.  You will hopefully discover, as so many of us here have, that you have a hidden reservoir of strength within you that you had no idea existed. 

We are here to help you find and recognize this courage and to encourage you along the way.  It can feel horribly overwhelming but if we can do it, you can too.
 :grouphug;

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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
irv31
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« Reply #14 on: December 14, 2008, 08:01:37 AM »

thank you Monrane, im trying to be optomistic and this site helps, I guess with the holiday time and so much going on it just seems so gloomy, I lost my Dad,aunts,both grandmothers to complications from Diabetes so, its hard to look at the bright side right now.
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Irv
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« Reply #15 on: December 14, 2008, 02:22:02 PM »

Hi Irv. I am new to the website too. My situation is a little different in that I have acute kidney disease.  An immune system problem. Now I am at a 4. Although I hope to put off dialysis as long as possible, I am going in this week and have a fistula put in my arm. Personally, I would rather have a unused fistula in my arm for life than have to go in for an emergency dialysis.  It is all rather scary. At first I felt devastated by the kidney problem. After about three weeks, I downgraded feeling devastated to looking at it as a major inconvenience. But manageable.

I don't have any of your symptoms so your situation is different. I have attended education classes at the dialysis center. They were free on the recommendation of my kidney doctor. I watch what I eat. So not only is the diabetic diet needed but also restricting salt, potassium, phosphorous and protein. Potassium is the hardest to control, cause it seems it is in everything. You are not alone. Mellow  :flower;
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irv31
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« Reply #16 on: December 14, 2008, 03:07:05 PM »

Hi Mellow
  I think Im leaning towrds the fistula for now as well, I htink part of me keep shoping I will get better and not need anything at all, dumb huh? Are you also considering a transplant?
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Irv
monrein
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« Reply #17 on: December 14, 2008, 03:20:43 PM »

I would highly recommend having the fistula surgery done as it will need a while to mature.  Three months isn't unusual although it depends whether it's in the forearm or the upper arm.
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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
Mellow
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« Reply #18 on: December 14, 2008, 03:52:11 PM »

Hi Irv,
Yeah, I keep hoping everything will turn around. Maybe they made a mistake? Slim to none chance of that since I had a kidney biopsy.  My only strategy for putting off dialysis at this point is too watch everything I eat and exercise.  It is the only power I have. My doctor doesn't even want to discuss a transplant at this point. But he does want the fistula in place. It takes anywhere from 2 months to 4 months to be ready for use after the out-patient surgery.

Maybe because you have young children, they will put you at the top the list for a transplant. 

I read where the famous writer Mitchner lived to be 90 on dialysis. Only reason he died was he took himself off dialysis. Guess he figured 90 was old enough.

Wishing you the best. Mellow
 :flower;
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kellyt
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« Reply #19 on: December 14, 2008, 06:47:20 PM »

Hi Irv,
Yeah, I keep hoping everything will turn around. Maybe they made a mistake? Slim to none chance of that since I had a kidney biopsy.  My only strategy for putting off dialysis at this point is too watch everything I eat and exercise.  It is the only power I have. My doctor doesn't even want to discuss a transplant at this point. But he does want the fistula in place. It takes anywhere from 2 months to 4 months to be ready for use after the out-patient surgery.

Maybe because you have young children, they will put you at the top the list for a transplant.  

I read where the famous writer Mitchner lived to be 90 on dialysis. Only reason he died was he took himself off dialysis. Guess he figured 90 was old enough.

Wishing you the best. Mellow
 :flower;




aaaahhhhh.......no.   That's a sweet thought, though.  :flower;
« Last Edit: December 14, 2008, 06:53:31 PM by kellyt » Logged

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!  :D
irv31
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« Reply #20 on: December 15, 2008, 06:13:34 AM »

Hi
 Well I'm off to Cornell medical center in New York City, to have my first meeting in the transplant clinic, I'm not sure what to expect, but here goes, Irv
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Irv
kellyt
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« Reply #21 on: December 15, 2008, 07:58:16 AM »

Good Luck!    :bandance;
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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!  :D
Mellow
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« Reply #22 on: December 15, 2008, 09:27:19 AM »

 :thumbup;
Wow. That was fast. Good Luck.
Best Wishes,
Mellow
 :flower;
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nursewratchet
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« Reply #23 on: December 15, 2008, 06:53:29 PM »

GET THE FISTULA!!!!!  If you never use it,  GREAT...  If you need it and don't have it :banghead;  This will all work out.  Get the fistula and be best prepared.  Why would your Dr. ever discourage that?
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« Reply #24 on: December 15, 2008, 10:26:57 PM »

Welcome to our community!  It is great to have you with us.  I know that this site will be one of your weapons in dealing with this challenge.  You have already received so much good advice.  This is more than a website - it is a caring and sharing family  :grouphug;  So stick with us.  Keep reading, keep asking, keep posting.  Let us know how your session went.
Looking forward to hearing from you  :flower;



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I LOVE  my IHD family! :grouphug;
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