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Old 08-21-2009, 09:54 AM   #1
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Question Dont want to mess around, need a straight answer, please..

Hi, I'm a 40 y/o caucasian female just diagnosed with stage 3 and was wondering how long any of you stayed in stage 3. I am researching and researching (And of course I know that every case is different) but the one thing I cant figure out is how does this progress?


Here is the history:

GFR in:

2006- 64
2007- 65
2008- 61
2009- 47

So I found out yesterday that this is an issue. Ive researched and found out that for CKD the prognosis is "Gaurded", ok, and that diet and some meds "May" help you live longer, and....really what the heck is the bottom line? I dont like tip toeing around stuff...

If you have CKD does it mean you will most likely die from it or a complication of it? (Barring any unfortunate incident with a bus or something)

When they say certain things may prolong kidney function for years, how many for most people before stage 4 or 5...2 years, 20 years on average?

What ARE you supposed to take for pain medicine?. All I read is what not to take which is everything. (My doc is being kind of hush about stuff like this right now until more tests come back)

HOW LONG did you stay in stage 3 before getting worse?

I know you are not foturne tellers, but If I have this kind of a number at 40 years old (no hypertension, cholesterol or diabetes problems) will this most likely mean dialysis or transplant sometime in the next decade in your experience?

I wont hold you to anything, just want your opinion or experience so I can have something a little more solid to look at. Thank you in advance a million times if you can give me any direction or ideas.

Holly

 
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Old 08-21-2009, 10:21 AM   #2
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Re: Dont want to mess around, need a straight answer, please..

Hi Holly, and welcome to the HealthBoards.

I understand your concerns. I am also struggling with Kidney Disease, and I am 48 years old. I am in stage 4. I personally was in Stage 3 for approximatlely 10 years, and have been in Stage 4 for about a year now. In the last month, my kidney function has actually improved 5%, from 22%, up to 27%, or a GFR of 22-27 now.

I am a positive thinker, so I give myself a few more years before dialysis, but I am also prepared for it, should it come sooner.

Even in Stage 4, I am still a very active person. I still go camping, ride my quad, am a parent of a teenager, volunteer, etc. I do tire more easily than before, but I just take things a little slower. I do see my doctor every 4 weeks, with lab work each time. I do manage my BP closely, eat a renal diet, and such...but it is easy enough. Considering you do not have the Diabetes, or Hypertension, you should do well.

For minor pain relief, I use Acetomenophine/Tylenol.

I hope this helps a little. I am sure you will get some very good information from the other folks on the boards, that really know their stuff!

Last edited by writeleft; 08-21-2009 at 10:42 AM.

 
Old 08-21-2009, 12:44 PM   #3
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Re: Dont want to mess around, need a straight answer, please..

Unfortunately, CKD is a very individual disease and the progression varies from person to person. If you are lucky and stay healthy (washing your hands is very important to keep colds and flus away) things may be fine for a very long time. I was diagnosed before they started using "stages" and it took over 20 years from the time I was first dxd with protein in my urine to the time I went on dialysis. Unfortunately, things like getting ill can hit your kidneys hard, and that can speed progression. So unfortunately, no 2 people are alike.

As for dying from kidney disease, that may or may not happen. It might be a factor in the long run, but again it depends. I know a man that spent 30 + years on dialysis and died in a car accident. You can live a long, wonderful life even if you have ckd. Are you planning on a transplant? It has been shown to extend life significantly.

Pain meds are always a difficult issue. I never had a problem with tylenol, but you should specifically ask if your doc thinks it's ok. Ibuprofen like advil is a definite no-no because it is hard on the kidneys.

There are important things you can do to help yourself along. Always monitor your blood pressure and contact the doc if/when it goes out of range. BP control will help maintain your kidney function. Also, as things progress, you will have to be careful with what you eat. I'm sure right now the doc wants you to restrict salt. You will be told along the way what things to avoid and what you can have. It is important to try to follow this to maintain your health.

The good news is that nothing is ever really as bad as you imagine it's going to be. I've been on different forms of dialysis and had a transplant. You can do this and still have a good life. Feel free to ask lots of questions too. There is a lot of experience here.
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Dxd T1 1966, 2001 dialysis, 2002 kidney transplant, 2003 insulin pump, 2008 pancreas transplant

 
Old 08-23-2009, 12:04 PM   #4
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Re: Dont want to mess around, need a straight answer, please..

Thank you both for your reply. I guess I'm just not good with ambiguity. I'll know more once I see the specialist. Thanks again so much.

God Bless,

Holly

 
Old 08-23-2009, 06:09 PM   #5
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Re: Dont want to mess around, need a straight answer, please..

Yes, that is understandable. Please keep us posted, OK?

 
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