A little bit closer...

[kellyt]

Well, I saw my nephrologist yesterday afternoon.  It seems my numbers are continuing to fall, but he's still not ready to put me on dialysis (not that I'm complaining  ).
My GFR is now 9.6 and my creatinine is at 5.  He started me back on EPO shots, as my hemoglobin dropped from 12.4 to 11.6 (I think).  He want's me to stay around 12.  I'll probably only do a couple of shots.  It only took me three shots last time to go from 10.4 to 12.4.  I guess it's because I still feel really good and I'm not holding a lot of fluids.  My phos was up a little, but still in range.  He told me to increase my Tums to 3 after each meal.

Like I said, I'm not complaining, I just don't want to "not wake up some morning" or have to go to emergency dialysis.  I guess I'll just call  him immediately if I start to feel bad.  Because basically I feel really good.  My appetite is good, my energey comes and goes.   What you ya'll think?

[jbeany]

It's certainly normal to want to hold off on starting!  I know I did.  I stalled for about 6 months after my doc tried to get me on.  I watched my labs really closely.  When my creatinine dropped below what they sited for a normal range for a dialysis patient, I finally agreed to start.  I do wonder sometimes if I hadn't waited so long if the first month would have been easier to adjust to - I was pretty sick and miserable for most of it.  My best advice though, is just keep an eye on how you feel, and how your energy level is holding up.  Is the metallic taste in your mouth starting to bug you?  Do you still have an appetite?  Do you sleep more than you want to?  Does the ammonia smell from sweating out the toxins get to you?  When these small things start to add up to a big irritation, it's time!

[devon]

It seems we're in the same boat!  I am watching all my numbers and pushing off dialysis as much and as long as possible.  Like you, I'm not feeling nauseous but my energy is low.  My concentration is difficult too. 

the "tums"? Is that to get your PH less acid?  If so, you can also use Sodium Bicarb tablets that are much cheaper than Tumbs.  At least that's what my doc said.  1000 cost about $10.

-Devon

[MyssAnne]

Kelly, by all means, if you can hold off on it, go for it. Jbeany DOES have good questions though, to consider when considering if it is time
to start.

Tums are, Devon, to lower the phosphorus level, our levels tend to be high, so we take tums to control it.
But if the Sodium Bicarb tablets do the same thing, at a much cheaper price, go for it!!! Wish MY dr. had
said something, before he finally put me on phoslo!

[KT0930]

Kelly, how often are you seeing your neph? When I got to the point you're at, I was seeing mine about once a month. Are you feeling nauseaus? How's your BP doing? Like the others, I would say put it off as long as possible, but not at the expense of feeling horrid when you first start. Take care.

[kidney4traci]

I think you are doing the right thing trying to watch yourself now.  Better to do so now than being on a machine fior it.  Keep up the good work!

[kellyt]

KT, I see him now about every 6 weeks.  My BP is fabulous!       At my visit yesterday it was 116/76 (not 100% sure on the bottom number, but it was lower than 80).  My BP has been good for a while now.  It helps that I'm taking two BP meds.  But I usually skip the evening dose of Norvasc.  I personally think I can maintain a good BP on just the Lotensin, but he won't take me off the Norvasc.

I have absolutely NONE of the symptoms jbeany mentioned.  My appetite is good; never nauseous; no metallic taste; no ammonia smell.  Now, my energy comes and goes and I have absolutely no libido.  Other than that, if I didn't have the labs to prove I was sick neither you or I would know!  I'm sure alot of you are the same or were in my position at one time or another.

I never have the energy to run or dance or anything like that, but I can have a great time playing board games, watching TV, shopping, etc. for about 2-3 hrs and then I crash.  I don't normally sleep during the day, but I do take alot of breaks in-between laundry and general house work.  When I sleep during the day I know something's up.  I napped yesterday when I got back from my doctor's appt.  But then again, he said my iron was getting low.

I definitely don't feel like a healthy 40-year-old, but the bottom hasn't started to fall out just yet.  I plan on watching those symptoms jbeany mentioned and if/when they start I'm going to call him right off!  I don't want to be in an emergency situation!  That's a big fear of mine because my husband is currently working about 45+ minutes away.

I so appreciate all of your advice!  There's honestly no where else I'd go for advice right now!

[Sunny]

Sounds like you are doing as well as you can under the circumstances. You are doing a good job of staying positive and taking care of yourself the best you can.
I hope you can last a long long time pre-dialysis.

[angellady07]

Kelly, I'm glad you are feeling well. Please be careful. If like the others have said you begin to feel really tired or experience a lot of nausea contact your nephrologist. I hope your kidneys hold on until you get a transplant. Prayers are with you.

[oleboy]

It sounds like you and your Neph. are on top of things,all I can add is your body will tell you when it's time . I held off as long as I could but I finally got to point of wanting dialysis to ease the symptom's

[stauffenberg]

Patients usually begin dialysis at a creatinine level of between 800 and 1000 (8 to 10 on the scale you are using), depending on their symptoms, so you are a long way off from needing dialysis now.  Since the decline in renal function will be gradual, there is no reason why you will ever need emergency dialysis.

[kellyt]

I sure am hoping you're right, Stauffenberg.    However, if my first brother had been approved for live donation he wanted to donate in July.  My neph said I would definitely be on dialysis by then.  Personally, I don't thinks that's a 'long way from needing dialysis".  Now...my nephrologist might think that's a long time away, but I surely don't!     Actually, any time this year would be too soon!

[donnia]

I put of dialysis as long as possible too.... but it is very important to not put it off too long. You dont want to be too sick when you start.  How are things going with ur brothers testing?  We just got word yesterday from Baylor that my donor is a match and all our bloodwork came back great.  They are now in the process of setting up my donor's eval.

[kellyt]

I'll go on dialysis as soon as my nephrologist gives me the word and not a day sooner!   

That's excellent news, Donnia!  I have my fingers and toes crossed for you.

My second brother is a definite 3/6 match, but possibly more.  Apparently there were 3 "blank" antigens.    He will be admitted for the remainder of his testing April 24 & 25, as they are going to Vegas earlier that week.  I sure hope he doesn't over indulge and blow this!!!!!!!  He's been given instructions by me to stop drinking any alcohol on the 22nd or 23rd.  That should give him a 24+ hrs to rehydrate.  He's 55 years-old, so he won't be drinking THAT much, but I want him to be able to have a good time without feeling guilty.

Anyhoo, here's to pissing away (no pun intended) another month (April).        I hope everything goes well with your donor, Donnia!  Keep me informed!

[Sunny]

If my renal doctor's would have had their way, I would have had a transplant in 2002 or been on dialysis by then.
They are always soooooooooo negative and only present worse case scenarios. I told them I was going to fight
to eke out more years from the kidneys I have. So, here I am! Still pre-dialysis after spending every doctor visit for the
last seven years having them all tell me,"Your kidneys are going to fail soon." Every kidney disease patient is
different with differing reasons for their disease and different physiology. I'm just saying, it's never too late to fight for
yourself, because you never know: you may be the one to function very well for many years without a transplant or without dialysis.
The longer you can safely put off both, the better. Hopefully, things will work out best for your needs.