we're sorry you have to be here, but there's no hiding from renal
failure once you have it, so many people find it useful to be able to
communicate with others who have been there.
Renal failure is renal failure. Right now, you're not quite at the
point where you need dialysis yet, but you're getting close. It really
doesn't matter what specialist you see, because when you get to that
level of chronic renal insufficiency, you are late pre-ESRD (ESRD
means renal failure needing renal replacement therapy), and it doesn't
matter as much what specific kidney disease got you there. What
matters is that you are pre-ESRD. It's the stage where you have to
start considering dialysis options should you need them, and/or
transplant. Considering transplant doesn't necessarily mean looking
for a potential live donor, but also getting yourself evaluated and
approved for it. This way, you can start accumulating some time on the
waiting list should you need that. You never know, because we have had
quite a few on this group who unexpectedly were offered a perfect
match kidney before even starting dialysis, or soon after. No
guarantees of course. Some get lucky that way, others wait for years
on the waiting list like I did (4 years on hemodialysis before I got
my kidney transplant). But however it ultimately works out, you have
to get into the system as a potential kidney transplant recipient.
Then, if you do have a live donor, so much the better.
Kidney transplants don't always happen or work out as we would like
them to, so it's not a bad idea to also learn about what the dialysis
options might be. There is only hemodialysis and peritoneal dialysis,
but there are several options within those 2 methods. Don't let it
scare you too much to even look at it. I was on hemo for 4 years as I
said, and I'm still here doing this.
If it was me, I would forget about looking at it as IgA Nephropathy,
and start looking at it more as ESRD. Right now, the treatments
available to you are the ones to help mitigate the effects of having
advanced chronic renal insufficiency.
Unfortunately, the dietary goal posts do move and that's to be
expected, because any requirement for dieting will depend on your
blood work results. There is no universal diet that everybody should
be on. You only diet as is required. Not everybody even with full ESRD
has the same kidney function, or the same dietary requirements. For
example, it's only necessary to limit potassium if you have to limit
it. Some people don't, because their kidneys still have enough ability
to regulate potassium. IgAN patients frequently reach ESRD with only
minimal dieting needs. The ability to excrete certain things in urine
is not directly related to glomerular filtration rate, and so if you
still urinate well, that can take care of a lot of potassium (just one
example).
There is always talk about using a very low protein diet, but this has
to be balanced against the need to avoid protein malnutrition. Already
being malnourished by the time you start dialysis or get a transplant
is an added and unnecessary risk for greater morbidity (and even
mortality if it's severe). Because of this, your nephrologist may not
want you to diet in this way. There is nothing you can diet on that
will restore or truly preserve your kidney function. You only need to
diet for things that are too elevated if they are, like potassium,
phosphorus, etc.
I would love it if there was any product that helped, but there's no
product out there that will help with this. It's not like many people
haven't already been there and been seduced by claims about health
products. They are all on dialysis or have a transplant just the same,
and if they aren't, it's not because of any product like that. I would
encourage you not to take anything like that without discussing it
with your nephrologist first, as Sophia already advised in a previous
post.
What will help you the most at this stage is following your
nephrologist's recommendations, such as taking the blood pressure meds
and any others that might be deemed necessary (such as Lipitor, EPO,
vitamin D supplement or analog, etc.), AND, taking care of yourself.
If you don't have a prescribed renal diet, you can at least eat a
heart healthy diet. You can also try to keep as fit as possible with
your doctor's approval. That will help keep you healthier and stronger
even if you have to be on dialysis, and if you do get a kidney
transplant. The fitter and healthier you are before, the fitter and
healthier you will be after, and the easier the whole experience will
be.
Good luck. Let's hope your kidney function will hang on for a long time still.
Me, I'm looking forward to Spring when I can start taking my road
bicycle out again for my usual 10-30 miles rides every day. In the
meantime, I'm doing the equivalent of 30 kilometres every day on a
stationary cycle, plus I walk an hour a day on average (6 days per
week). I'm not always in perfect health, and certainly, I get passed
and dropped regularly out on the road and paths, but it's not bad for
someone with my renal failure history. I'm just saying this to show
that you need not think of dialysis or transplant as living life on a
deathbed. There are many people who are doing all kinds of things in
this situation.
Label: First time poster
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