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jaydees 02-02-2008 12:03 PM

25% function - questions
 
My background;
I had rectal cancer in 2001, surgery, chemo and radition. I have no rectum at all now , I am sewed up in back. I have a permanent colostomy.

Last April I passed out getting out of bed and fell and cracked a rib. The doctor ordered bloodwork and found that my creatinine level was 230 umol/L (the units used in Canada)
Since then I have seen two nephrologists, a hematologist (I have elevated Ig(g) indicative of monoclonal gammopathy)
I have one ectopic kidney, the left side which I knew about already.

My creatinine level is now at 328 umol/L and two months ago was at 403 umol/L
I pass 1.5 g/day of protien(3 times upper normal range)

I had a kidney scan done showing that the ectopic kidney actually functions , the differential is 60/40 or 70/30. The range is due to the fact that my colon extends in front of the ectopic kidney and obscures it somewhat. The radioisotope had been excreting into the colon a bit which is what made seeing just what the ectopic kidney waas doing a bit difficult.

MRI - no contrast- showed some scarring on each kidney and a small cyst on each kidney as well.

I had an abdominal and colon biopsy done to look for amyloidosis which jas not come back yet but examination of the unstained sample indicated no amyloid plaques.

I am scheduled for a kidney biopsy on Feb 21/08.

My blood pressure is low normal, I am 185 pounds and 5'6" so not particularily overweight. My sodium level is normal. I am slightly anemic. I am not diabetic.

Thing is by all that I read I should be experiencing feeling ill. I do not feel ill.
I get cold hands and feet sometimes but it minus 20 degrees here now.
I get itchy legs but again it is very very dry here when the outside temp gets so cold.
I do notice lightheadedness when I stand up sometimes and more often than say 10 years ago.

Is there some other reason that creatinine levels could go way up that is not kidney failure?

Is there a diet that would make things easier on my kidneys?

I am watching my sodium intake but only as far as what is written on the labels (in Canada all packaged foods must show various things such as the amount of sodium per serving) but sodium is also in some raw foods. Does anyone have a link to a site that shows the sodium content of basic foods? For instance the sodium content of raw fruits and vegetables.

Long post, I know but one last thing.

How many people continue working 40 hours a week while on dyalisis?

flowergirl2day 02-02-2008 07:29 PM

Re: 25% function - questions
 
Hi,

[QUOTE]How many people continue working 40 hours a week while on dyalisis?[/QUOTE]

I can't answer any of your questions because I too am looking for answers. I swear I was thinking the same thoughts as expressed above at work just yesterday, wondering how/if I'd be able to work when on dialysis. What do people do in that situation? I doubt we could work a 40 hour week. Maybe like a 20 hour week, if that. :( We'd most likely have to miss work every other day.
I am glad you have your diagnosis and know what's going on. I don't. I just know that SOMETHING is. I hope I will get the biopsy done now that I am leaking protein again and things are getting slightly worse. Would you please post about your biopsy and keep us up to date about your progress? Do you know what type of biopsy you'll be having?

best of luck,
flowergirl

Cora1003 02-03-2008 07:20 AM

Re: 25% function - questions
 
[QUOTE=jaydees;3423261] My creatinine level is now at 328 umol/L and two months ago was at 403 umol/L


My blood pressure is low normal, I am 185 pounds and 5'6" so not particularily overweight. My sodium level is normal. I am slightly anemic. I am not diabetic.

Thing is by all that I read I should be experiencing feeling ill. I do not feel ill.
I get cold hands and feet sometimes but it minus 20 degrees here now.
I get itchy legs but again it is very very dry here when the outside temp gets so cold.
I do notice lightheadedness when I stand up sometimes and more often than say 10 years ago.

Is there some other reason that creatinine levels could go way up that is not kidney failure?

Is there a diet that would make things easier on my kidneys?

I am watching my sodium intake but only as far as what is written on the labels (in Canada all packaged foods must show various things such as the amount of sodium per serving) but sodium is also in some raw foods. Does anyone have a link to a site that shows the sodium content of basic foods? For instance the sodium content of raw fruits and vegetables.

Long post, I know but one last thing.

How many people continue working 40 hours a week while on dyalisis?[/QUOTE]

HI there.

First off, while it is important to keep track of your symptoms, everyone is different and gets different symptoms at different points of the progression. I wasn't anemic until my creatinine was much higher than yours. Some folks feel awful at 300 or 400, and I didn't go on dialysis until I was in the 800s and still feeling OK. so play it by ear.

Sorry, but kidney problems are what will drive your creatinine level up. And the spilling protein and the visually seen scarring help confirm that. Keep in mind, that it may still be many years before any intervention is needed.

Feeling cold could be the ambient temperature, or it could be the anemia together with the kidney problems. Don't worry about it until summer, and then you'll see. As for the itching, that could be too high phosphorus levels. Have you had them checked? If it is high, talk to your neph about a binder (sometimes as simply as Tums with meals). The light headedness can be from something I can't remember the name of (help me out here folks). Your blood vessels may not be able to compensate quickly enough for the change of position when you stand up quickly. It's simply something to get used to and be aware of.

To help preserve your kidney function you need to watch sodium (keep in mind that 2000 mg a day is a "low sodium" diet, so natural sodium and some addes sodium is ok, just don't eat a lot of processed foods and don't add salt. Also, a low animal protein diet is important too because protein is hard on the kidneys. Try to get in to see a renal dietitian. They can give you general guidelines as well as specific guidelines based on your particular blood work - they will tell you what to avoid, and what you can eat more of.

Finally, some people continue to work, others don't while on dialysis. It really depends on you and how you feel when you get there. Here's hoping you'll be able to continue.

Best of luck, hope this helps.

Cora

jaydees 02-03-2008 10:23 AM

Re: 25% function - questions
 
Flowergirl, actually I do not have a real diagnoses. They do not realy know why my kidneys started failing. The thought is that it a result of the radiation treatments I had for rectal cancer. That would certainly explain why the ectopic kidney would do so since it is in my left hip area but the right kidney is well away from the radiation target area, and to top it off the radiation treatments were in 2001 so it tok 6 years for this to show up. I am told that the radiation could very well have been toasting the good kidney too and that the added stress of the ectopic kidney also being scarred could have started a slow progression that gets me here. Then there is the issue of the monoclonal immunoglobulin which could be the beginning of a cancer called multiple myeloma.
If it is MM then I will likely not be a candidate for transplant. So far I do not meet enough criteria for a dx of MM.

Cora, thanks for that. Only once did any doctor mention a creatinine level at which dialysis might start, and that was at 800.
As you did, I feel pretty good, its only the doctors telling me that I am sick.
My last test results include a measure of phosphate of 0.70 umol/L which is actually lower than the normal range given on the test sheet of 0.81 - 1,45.
Alkaline phosphatase (ALK) is given as 75 U/L right in the middle of the 30 -120 normal range.
My urea/creatinine ratio is 38 and normal is anything less than 70 , though my urea level is 12.4 mmol/L which si higher than the 2.8 - 7.1 normal range


Just as I thought, unless one has had a severe crushing injury creatinine levels are soley the result of how well the kidneys are working.

I have been watching the sodium intake. I also have simply not eaten as much meat as I used to. Cutting back on meat has been the harder of the two. I love pepperoni and now see it as posion for me(salt and protein).

I am to see an oncologist tomorrow and have asked the renal health care nurse in the same hospital to see if she can get me in to see the dietician. This would be good since its a two hour highway drive to that hospital.

If it comes down to dialysis then that can be done at the local hospital which is only a 5 minute drive.

I walk to work, its a 3 minute walk each way and my job is somewhat physical, so I have been able to keep my weight in check.

I need to contact human resources of the co. I work for and find out what my options will be for work and compensation if it comes down to that as well.
I know that long term disablity is pretty good but after two years all other benefits lapse, no life insurance, no dental, no vision care. If I can continue as part time that might be avoided.

flowergirl2day 02-03-2008 11:05 PM

Re: 25% function - questions
 
Wishing you the best of luck, Jaydee! Thanks for your reply.

Cora, how would one go about seeing a renal dietician? I had no idea there were any that specialize in renal diets. I had a couple of sessions with a general dietitian. She recommended a DASH diet...this diet is not recommended to people with impaired kidney function & several other conditions. I had to tell her that anyone with GFR <60 should not be on it due to its high protein, phosphorus and potassium content. It was news to her, I could tell. Which does not exactly fill me with confidence. I need to see a dietician again and would prefer to see one that can put things into a perspective. Are these specialist dietitians difficult to find?

thank you,
flowergirl

Cora1003 02-04-2008 05:16 AM

Re: 25% function - questions
 
[QUOTE=flowergirl2day;3425068]Wishing you the best of luck, Jaydee! Thanks for your reply.

Cora, how would one go about seeing a renal dietician? I had no idea there were any that specialize in renal diets. I had a couple of sessions with a general dietitian. She recommended a DASH diet...this diet is not recommended to people with impaired kidney function & several other conditions. I had to tell her that anyone with GFR <60 should not be on it due to its high protein, phosphorus and potassium content. It was news to her, I could tell. Which does not exactly fill me with confidence. I need to see a dietician again and would prefer to see one that can put things into a perspective. Are these specialist dietitians difficult to find?

thank you,
flowergirl[/QUOTE]

Hi there.

Most nephrologists, especially those that work with a hospital nephrology clinic, work with renal nephrologists. Ask your neph. If he/she doesn't work directly with one, he should be able to refer you one. I find that typically they are both extremely knowledgeable, and kind. Let's be honest, the restrictions aren't easy, so they tend to help you maintain at least some of the foods you enjoy. The good thing is that they often base the diet they give you on what your blood work is.

I know that those of us with diabetes often get caught in the middle because diabetic dietitians don't like to play second banana. But we all know it is necessary for the renal diet to trump any other diet. What can happen if you don't follow the diabetic diet? Well, your kidneys could get damaged. Oh, wait! That's already happened. LOL. But not following the renal diet properly can get you into some very serious, very immediate problems.

Best of luck finding a good one Flowergirl.

Cora

jaydees 02-04-2008 02:48 PM

Re: 25% function - questions
 
Flowergirl, I just saw the dietician again today. I am on a resticted sidium and protein diet but my potassium and phosphorus levels were good in the last 24 hour unrinalysis so at this time I don't have restrictions on them, and besides she told me that most of the foods (think meat) that contain high amounts of protein also contain more phosphorus so in cutting back on protein I wil naturally be cutting back on phosphorus.

Watch your intake of dairy products and meat and read labels for how much sodium is in prepared foods like soup or even canned veggies. In Canada all packaged foods have this info on them. Don't know if its the same in the States, if not then most companies have this info on their websites. I am to aim for no more than 2000mg of sodium per day.

The dietician took the results of the 24 hour urinalysis and told me what I had been taking in as far as sodium and protein. She took that and the values for phosphorus, potassium, calcium and gave me a sample menu. My meat portions are to be no larger than the size of the palm of my hand for instance.

flowergirl2day 02-04-2008 07:38 PM

Re: 25% function - questions
 
Hi Jaydee, :)

I am on a sodium restricted diet as well. I do read the labels and check the sodium content. I buy very little food besides fruits and veggies, chicken and fish. I cook everything myself from scratch. Right now I don't know what's safe to eat that might help fix the electrolyte levels. I try to eat less fruit and less veggies to keep the potassium level from getting any higher. Am not sure how to increase the sodium level. I also try to eat less starchy food in hopes of lowering the glucose. Also have to watch my cholesterol levels, so more diet restrictions. Eating is no fun anymore. :(Thank you so very much for your tips!

Cora,

Your post is much appreciated! It is amazing how helpful the dietitians can be. What would we do without them?
Thank you for putting things into a perspective. I agree with you that the renal diet should take precedence over any other. I am not sure which one of my doctors I'll get to see first but will make sure to ask for a referral to a renal dietitian. Thank you, Cora! :)

deedee1313 02-05-2008 09:06 AM

Re: 25% function - questions
 
You asked about working a 40 hour week while on dialysis.My husband tried the peritoneal(not sure of spelling) dialysis.He had a machine that he was hooked up to every night.He was able to do pretty much whatever he wanted during the day.While doing hemo dialysis he felt terrible most of the time.But the peritoneal was a lot easier on him.

Cora1003 02-05-2008 01:03 PM

Re: 25% function - questions
 
[QUOTE=deedee1313;3427278]You asked about working a 40 hour week while on dialysis.My husband tried the peritoneal(not sure of spelling) dialysis.He had a machine that he was hooked up to every night.He was able to do pretty much whatever he wanted during the day.While doing hemo dialysis he felt terrible most of the time.But the peritoneal was a lot easier on him.[/QUOTE]

Most people find PD (you did spell peritoneal right) a lot easier on the body. It gradually clears excess fluid every day, rather than 2 or 3 days worth of fluid over the course of 4 hours that you get on hemo. Also, in most people the potassium restriction is lifted, so you can eat much healthier with lots of fruits and veggies.

There are down sides to all sorts of dialysis, but PD is often easiest emotionally (you do it at home) as well as physically (I nearly strangled a friend on PD once who at a BLT sandwich in front of me - LOL)

Cora

flowergirl2day 02-05-2008 11:07 PM

Re: 25% function - questions
 
Good to know!
Thanks for sharing. This might come in handy some day. :)

jaydees 02-09-2008 09:48 PM

Re: 25% function - questions
 
I don't know if I will qualify for PD. The colostomy surgery and colostomy itself mean my peritoneum is hardly in pristine condition.

Cora1003 02-10-2008 07:22 AM

Re: 25% function - questions
 
[QUOTE=jaydees;3434608]I don't know if I will qualify for PD. The colostomy surgery and colostomy itself mean my peritoneum is hardly in pristine condition.[/QUOTE]

Sorry, I forgot about that. But it doesn't hurt to ask.

Best of luck.

Cora

jaydees 03-02-2008 11:25 AM

Re: 25% function - questions
 
I asked and the nephrologist confirmed in no uncertain terms that PD would be a very bad idea for someone like me. It would carry with it a severe risk of infection.

After looking into it I decided that that I'd rather not have gone that route anyway, even if it was a possibility.

flowergirl2day 03-02-2008 04:23 PM

Re: 25% function - questions
 
My girlfriend is a healthcare worker and as part of her job looks after people on dialysis. I made a comment about my kidney function she didn't like, saying I was not taking my situation seriously enough. Anyway, what followed was a lecture about the ins and outs of dialysis, complications and transplants. I really got an earful and if it was intended to shock and scare me, it succeeded. :( The bottom line is that I need to educate myself about renal issues.

flowergirl


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