Had My Neph App't Today

[AnnieB]

So I went to see my neph today. I had some labs in hand, and my creatinine is now 3.62, BUN 62, eGFR between 13 and 15. My Hemoglobin and hematocrit are okay, even if my RBC are a little low. He thinks I can probably stay around this range for a while yet since my labs haven't varied too much since the beginning of the year...and he said I probably wouldn't need to think about getting a fistula placed until my creatinine was staying pretty solidly in the 4 range. I am really not in a hurry for that (like MooseMom, I think it's the finality of that I am not ready for yet), so I'm trying to baby what function I have left until I absolutely have to do something. There is also the possibility of a preemptive transplant, if one of my sisters is compatible...or I got on the list if they weren't. Right now I am still working on the diet and exercise angle. He gave me a script for a dietician and also some recommendations for diet restrictions...I asked him about nocturnal, and he thought that was a great way to go if I chose dialysis....so I didn't have to call it "extended" (good thing, I'd forgotten about that anyway)....I'm going to keep tracking my labs to see when I need to take the next step  but as I don't have any symptoms yet aside from occasional feet cramps (no nausea, etc) I'm hoping to be able to forestall D for a bit longer... Does anyone here know about "good" protein and "bad" - or "not-so-good" protein. I have been trying to cut out red meat, pretty much, but I feel like I still eat an awful lot of turkey, chicken, eggs and fish.....I'm wondering if that is one reason my BUN is still so high.

[Alex C.]

Well, Turkey, Chicken and Fish have probably the highest amounts of protein by weigh of anything you can eat. Red meats are not 'low protein', but they are certainly lower than poultry and fish are. Frankly, if you are trying to reduce your protein intake, those are the FIRST things to limit. If you are loading up on such ultra-high protein meats, of course your BUN numbers are going to be sky-high.

A bit of red meat might be O.K., but get some idea of how much protein there is per ounce. For me, I can handle maybe a 6 oz. piece of steak once in a while, but never any piece of chicken larger than 4 oz., and fish never larger than 3 oz. That's one single McD's plain hamburger, 5 pcs of chicken Mcnuggets, or HALF of a fillet-o-fish. Often, I eat vegetarian 2-3 days a week for the entire day. Other days, only ONE meal with meat portions as noted above.

Protein is protein. You sound like you are confusing fat with protein. Fat is O.K. for kidney patients. The fattier the meat is, the less problem it is for your kidneys. Unless you are diabetic, you'll need to get the bulk of your energy from fats and carbs.

[fearless]

Annie,
BEFORE patients go on dialysis they may want to cut down on protein.  The less protein, the less protein waste, and whatever the kidneys are still doing will go further towards elimination.  However, if you're losing a lot of protein through "leaky" kidneys (when they fail to keep the blood protein in the bloodstream) you may have to eat a little more.  24-hr unrine collection will tell you how much protein you may be losing through your kidneys.

It's also important to limit salt because that can make you retain water.  Depending on the nature of your kidney disease, you may or may not be having trouble eliminating enough water.  One of my earliest symptoms was swelling. bad swelling - i couldn't bend my knees all the way    If your body is still balancing potassium ok, potassium can act as a natural diuretic.  Your labs will also show if you're having any problem with potassium.  I didn't have trouble with that for a long time (but I also didn't know that it might have helped me with the fluid elimination)

Those of us who are on dialysis may have to actually increase our protein because, for instance, PD takes protein out of your body.  And if you're still urinating, you may have increasing loss of protein through the urine as your kidneys get worse.  Then, if you stop peeing, you don't lose any protein through the urine anymore.  yeeha!    Once I switched to hemo from PD, my blood protein went up without any diet changes.  I had stopped peeing a few years before that.  So now, I don't need to eat more or less than I ever did!  But of course there's phosphorus, potassium, calcium, etc.

Sure do hope you get a transplant before you have to deal with any of that crap.
Are you on the list?
I was hoping my sister could donate to me.  The transplant center had me go through all the tests.  They said it was the same protocol regardless, so then I can be placed on the list regardless of whether my sister could donate or not.  (she couldn't)
I don't know how bad you have to be before you can get on the list because I waited until 5 years after I started dialysis (you might not want to do that 
But I guess what I'm saying is, if you're "bad enough" and you want a transplant, you might as well go ahead and get on the list now.

I hope your kidneys hold out for a very very long time.

[AnnieB]

No, not on the list yet. Haven't decided yet whether to go for a transplant or dialysis, but it does make sense I guess to go ahead and get tested anyway just in case. I am, I admit, dragging my feet on this. I'm still at the point of starting to think about evaluating some of the dialysis centers around here, let alone taking steps towards a transplant. I guess I can talk to my sisters when I see them next month, maybe start to think more concretely about what, when, where, etc.

[fearless]

I don't know what point your kidneys have to be at before you can be listed.  Like I said I waited quite a while.  The problem is the list keeps getting longer.  When I started dialysis it was only a couple years.  When I finally decided I was ready for a transplant the list for my blood type was up to almost 6 years 
Of course it's different in different regions & for dif blood types.
But you don't have to take a kidney if one is available before you want it,  It's just that you have to wait so long now that if you wait until you're sure you want it, then you have to wait some indefinite period of additional years to get it.
But there's not a hurry,  it's such a crazy and possibly scary time anyway.  And people can generally stay very well on dialysis for at least a few to several years.  It depends on your disease and the quality of care you get.  It's good to check everything out ahead of time, as you say.  That is smart.
MooseMom has always been on top of such things.  She and her nephrologist apparently postponed dialysis a long time with diet and meds. 
If you decide to do transplant it would be really cool if one of your sisters could donate.
Sisters are special.      mine is my home D care partner 

[Sax-O-Trix]

I had my preemptive transplant when I was almost exactly where you are right now.  I was hovering around 15% GFR and 3.5 Creatinine levels.  Everything else was okay.  I am 18 months out.

I am glad I went ahead and had the transplant as early as I did.  I was still relatively healthy, which worked to my benefit when I had a potentially fatal reaction to Tacro/Prograf within 24 hrs. of the transplant.  I went through hell for a couple of months because of it, but I was lucky that I was not really ill going into the transplant.  No prep for dialysis whatsoever.  I was naive enough to believe I would get the transplant before I needed dialysis and was fortunate it worked out that way...

[Jill Marie Evans]

My neph hasn't stressed protein reduction as much; he's more interested in keeping sodium, potassium and phosphate levels low. I don't really eat a lot of anything, and I usually only have protein at one meal, either breakfast or dinner, depending. Once you get over losing most of the salt, which was very grievous for me--I mean I really mourned that--the battle is finding what to eat that doesn't have either too much potassium (which can kill you), or too much phosphate. That is pretty tricky, and still a constant battle; I find losing a little of your appetite isn't such a bad thing for me. Of course, my gfr is 12, and for some reason that I still don't understand, my neph says it's likely lower than the reading from the lab. I am never nauseous, and I don't have headaches, so I guess I'm lucky there. I wear a clonodine patch to keep my bp down--maybe that's why. I'm peeing a lot of protein, and you can't cut it out altogether without having problems from that. Your heart could become too weak for a transplant, if you should decide to have one.

[Jill Marie Evans]

My focus is on protecting my heart, because people with CKD usually die from cardiac events. That is why the sodium/potassium thing is SO critical....you MUST keep those DOWN.

Too much sodium=bloated and straining the heart.

Too much potassium=you will feel weak and could die in your sleep.

Too much phosphate=you will be itchy all over and your bones will become weak, and it will eventually weaken your heart.

Those are the biggies!

[Fatkidney]

There may be some locations that are different but in general you can be listed for transplant when your GFR reaches 20 or lower.

[MooseMom]

AnnieB, with your gfr at 13-15, you would be eligible for starting the listing process.

I would ENCOURAGE YOU STRONGLY to start the process NOW because you never know if/where along the way you may encounter an obstacle.  You will have to have a dental exam.  Might the dentist find some active infection because if so, that has to be cleared up before you can be listed.  You will need a chest x-ray; might they find some funky result there that requires treatment?  And then there's the cardiac testing.  What if they find you have a coronary blockage or some other issue that you don't even feel?  That will have to be treated before you're listed.  Then there's the mammogram and the Pap smear.  Should they find something weird in those tests, you'd need to be either retested or treated before you can proceed onto the list.

Getting on the list can be easy peasy lemon squeezy for some, but many people find they have some medical issue about which they had been completely unaware.  Left untreated, some of those issues could be made much worse or even fatal during transplant surgery or with tx meds.  So it is worth starting the pre-evaluation process now.  If once you do get on the list you decide you do not want to go down this route, you can always ask to be deleted.  No one is ever going to force you to have a tx.

I know it may seem counterintuitive to eat less protein when you seem to be losing protein,  but eating a lot of dietary protein actually stresses already compromised kidneys.  You can probably safely eat no more than enough protein that's the size of your palm.  That's the guide I always used.

You will still have to go through the pre-eval process even if your sisters were all willing and able to donate.  And it takes time for them to be evaluated, too.  So, you might as well get started.  I can certainly understand dragging your feet regarding getting a fistula, but I personally found the pre-eval process much less scarier than getting my fistula.  I actually started the pre-eval process a couple of months before I got my fistula.

[Sydnee]

I agree with those that said you should get on the transplant list.
Although some tests will very due to age and gender.
 transplant hospital is in Denver CO. Ed and I went down together I got on the list within two months of the visit.
All the drs kept saying that they were so happy we came down before we got on dialysis. We were told " It's really a shame more people don't get listed sooner" University of CO lets you get on the list with a gfr of 17.
They did blood work and chest X-rays, along with meeting several drs, social workers, and transplant coordinator. Other than the tests they did that day I had to get an EKG and a pap smear. I have PKD and was 36 at the time. Ed had to have an EKG,  Colonoscopy, a ultrasound of the vessels in his legs. He has diabetes and was 49 at the time.

The wait time for Ed is over 6 years (O+ blood type) My wait will be around 6 years (A+ blood type)

Even if your sister is going to donate get started now.