problems Im having

[BRANDY]

IM not on dialysis  Im 24 -21- now 24 again  GFR  Im having nausea  my pain pill lasted all day   which is unusual  my hair is fallling out  pretty bad  consintration is bad  which isnt too unusual  what do you think is problem   I called neph   waiting for nurse to reply after consult with doc... juat wondering what you think is going on

[jbeany]

Have them check your iron and hemoglobin levels.  Low iron levels may account for the hair loss.  I needed iron transfusions (I couldn't stomach supplements) long before I started dialysis.  My hemoglobin also bottomed out long before my kidney function was bad enough to need dialysis.

 

[Lucinda]

I am with jbeany, Brandy.  sounds like low iron levels.  Get your hemoglobin checked.  You may need an iron infusion.  There is nothing to them and the long term positive effects of them are great.  Have you started having Epo or aranesp shots yet.  That will also keep your hemoglobin levels up but you have to have the infusion first to correct the problem first.  I always know when I need one because my hair starts falling out and I start jumbling my speech.  Anemia is a very common symptom of renal impairment even before it gets to end stage.  xx

[Rerun]

I was so stressed about going back on dialysis that my hair was falling out.  I'm sure you would just like a DATE as when you will start dialysis.  They really can't tell you.  I hope you keep at 24% for a long time.

[okarol]

Did the tell you your creatinine or BUN?
Brandy, I think you can get evaluated for the wait list when your GFR gets to 20% so keep up with your labs.
I agree that you should get the other labs mentioned (iron panel and hemoglobin) to see where you are now.
Good luck 

[Sunny]

My hemoglobin levels hover around 11.0 to 11.6. By any other standards, I would be considered anemic. However, the medical insurance will not pay for EPO shots until you are under 11.0 which means many of us suffer from anemia. In my case, I have low energy, hair loss, memory muddling, muscle pain and can barely do any activity for an extended period of time. But my doctor still won't prescribe EPO. Check your hemoglobin numbers on your blood test and that will help the doctor to decide whether you require EPO. (If I'm wrong about this, somebody please let me know, because this is what my nephrologist tells me).

[BRANDY]

all of your responses sure does help me in to what questions I need to ask neph.  I still havent heard from  nurse   guess that will be one of the first things I do tomorrow..Call nurse    to all of you guys. I truelly do admire what you are doing on this forum  I have gotten lots of good info  for my future journey to dialysis   Im not near as afraid as I was 4 mo ago.

I have a question  I have been wondering  and was really afraid to ask  but here it is   DONORS -  everyone wants a  kidney  I have to ask  about the rejection rate  it seems everyone says they reject in a few yrs  so why go thro surgerys . I dont mean to be so blunt but this question is in my head for months. and afraid  I will be offensive by asking  there it is  can you please help me understand.

[BRANDY]

Now the ddoc says Im 16% but Davita gfr says 13%  which is right???

[monrein]

Gfr is not always so accurate so don't get too hung up on the numbers.  Measure of creatinine is important to know and also you should be guided by your symptoms.  You sound pretty symptomatic to me.

As for the question about living donors and transplant survival rates,  here's what the Mayo Clinic has to say:

"Mayo Clinic emphasizes living donor kidney transplants as the best option for patients. Live donors may be related or unrelated to the patient. Living donor organs offer many advantages including:

The living donor kidney is the best quality kidney that a patient can receive because the donor can be tested thoroughly prior to transplantation.
Living donor kidneys last longer. Half of living donor kidneys transplanted today will still be functioning 25 years from now, whereas half of cadaveric kidneys will fail in the first 10 years.
The living donor kidney can be transplanted immediately. The waiting time for a cadaveric kidney ranges from three to five years.
Most living donor kidneys function immediately after transplantation, while many cadaveric kidneys do not function well initially.
All three Mayo Clinic locations are leaders in laparoscopic donor nephrectomy in which the donor's kidney is removed through a remarkably small incision. This procedure is safer for the donor, involves less pain and allows quicker recovery."



Again there are no guarantees with any of this stuff, that's the only sure thing there is.  For example, my cadaveric transplant lasted over 23 years (super good quality years too), I started peeing right away and the kidney still hasn't rejected.  It was damaged by the transplant drugs.  It's still in me and even without the drugs, has not rejected so far.

We are all making a big leap of faith by undergoing transplantation.  We're gambling, but based on pretty good odds if everyone does their job properly.  Even if a transplant is successful, WE, the patients have a huge duty of care ,in my opinion, to do everything we can to prolong the life of such a precious and valuable gift.  That includes being on the ball about not forgetting out meds, exercising to keep our weight down and our hearts healthy and making sure that our diet is excellent.   I only gained about 10 pounds ,total, after my transplant  and exercise is my part-time job.  Not exercising is simply not an option and nor is eating some of the crap that passes for food in our culture.

Especially if I get a transplant from a relative or friend, any living donor, I will do everything in my power to safeguard it and me from potential harm. 

Some people get transplants and they feel so good, they forget that we are never cured.  We will never in this lifetime have the luxury (a fool's luxury really, even for the perfectly healthy) again of taking our health for granted.

So, I plan to try again but I know that this time around it may not work and we will have removed my sister-in-law's kidney for nothing.  If that happens, I'll be sad but that's the risk that we must be prepared for.

[BRANDY]

I thaank you for your reply .  I still think I would have to think about it    but Im not in dialysis and after I get there I may think a whole lot diffrent. Im sure I will.

[monrein]

Absolutely right Brandy.  I waited 4 years before putting my name on the list the last time.  Also some people are not even candidates for a transplant.  You'll discover what's right for you in good time.  Keep asking about whatever's on your mind.