Phobia about doing lab tests!

[MooseMom]

If your neph had seen something alarming, he would have remembered and would have told you. 

I figured you were not in the US, going by the times that are shown on your posts.  Australia!  Now it all makes sense. 

I have a standing order for my monthly labs, and it specifically states that I can phone the lab for results, so maybe you and your neph can work out a way for you to get results in a more timely manner.  Anything other than having to wait for a phone call, am I right?!!!

[Sue]

Hi Athena. I am in Australia too, on the bottom of the blood test request form there is a box that says ' copy to' so I would think  you can put your name and address or email there and they will send you results.

[Athena]

Well I finally got rest of all of my results today! Except for the serum creatinine & BUN levels, everything else was actually excellent. My PTH is now just a whisker above the maximum normal level! (Thank you Calcitriol!). My phosphate & calcium levels are normal. Potassium normal range and sodium on the low normal border.

Though my creatinine level has fallen slightly, I still think it is elevated due to all the trauma involving the recent hormone therapy (my egfr is now 28 but it was in the 30s before all this trauma). I am hoping creatinine will continue to fall back to Stage 3 level after I have my surgery & recover from it next month.

For the first time in a long time, all my blood chemistry results were all normal. My cholesterol is high but it has fallen in the more familiar pattern of normal Trigs, good levels of HDL but high level of LDL. It seems statins is what I should take instead of fenofibrates.

Based on my results, it would seem that I can continue to live on my existing normal diet for still a while longer, which includes some occasional dark chocolate! 

Depression/anxiety is somewhat under control now. Until my next labs are done, I can just live to fight another day, as the saying goes 

[MooseMom]

I can feel your relief all the way from Australia!  Well done!

[Sue]

Good news Athena! Its stressful waiting for results isn't it, but you can relax a little now Diet is important and from your lab results it looks like you're getting that right ! Enjoy the chocolate haha

[Athena]

Thank you Sue and Moosemum 

Sue, I hope you've gotten through your lab tests by now as well.

[Sue]

Yes thank you Athena , got the results last Wednesday, still hanging in there lol function has risen slightly, up from 12% in December to 14%! So still stable and avoiding dialysis! Creatinine down a bit , potassium levels reasonable

[Athena]

Well it's THAT time again and not surprisingly I am running late for getting my latest lab results done ....

[Athena]

I got my latest lab results and I am still holding on in Stage 3b, eGFR 31. That's the good  news. The bad news is that my Hb has fallen to 9.1!!! This can't be true as my Hb was 12.7 in early May. My Neph thinks that it may be a false result. I still have a higher than normal transferrin saturation level at 45% (it was 60% in May).

I will have the result repeated soon but am just wondering what to think. Do false lab results happen frequently I wonder?

[renalwife]

If you are dehydrated, e.i., Have'nt had much liquid intake, your hb will have a higher reading. If you are hydrated. e.i., you consumed liquids, then your hb wiill read lower.  So it is best if you are in a non-fasting or a fasting condition for the blood tests. For example:

When I was hospitalized and receiving IV fluids my hemoglobin was reported as 4.2 gm., which was a false reading. That same afternoon, I had another c.b.c, (the IV was discontinued 5 hours before the blood draw) and my hb came back at 6.3gm.

So if there was a great (or even a small) difference between tests, it is wise to have the test repeated.

[Athena]

Thank you Renalwife for your reply. That does make sense about false results. I once had a very high triglyceride result that was clearly a one off result that has never been repeated. If I have had such a dramatic drop in Hb, I surely would be really feeling very weak & tired. I will get it tested again in a week's time. Thanks again.

[Athena]

I don't know what to do. I think I'm suffering from anemia. Today I was told by 2 people who saw me that I'm looking rather pale. And tonight, after a day out walking, I am feeling quite weak & frazzled & feeling like I'm drained in the head. I now recall that I've been feeling a bit depressed recently. I will have a second round of tests by end of this week - but right now, I feel like just taking an Aranesp shot.

The unusual thing about my recent results is that I have no iron deficiency, still having an elevated transferin saturation level of 48% (Hb 9.1) - is this how renal anemia looks like?. The comments about looking pale seems to me to be a certain sign of anemia. Can anyone provide any advice?

[casper2636]

Anemia is anemia. Yes, you feel and look like crap. I get Aranesp for mine, but my dr. lets my Hb. get to 7.5 before she'll transfuse me or give me a shot. At that point, I'm usually stuck on stupid, babbling that I have no ummph. I'd ask to get tested earlier this week. The sooner you know for sure, the faster they can remedy the situation.

[Athena]

Thanks Caspar. What's puzzling in this instance is that I have enough iron in the system, even have a bit of iron overload, yet I have apparently have a low Hb. I just called my Neph to ask for advice & he told me he thinks I don't produce enough erythropoietin in spite of adequate iron. So I've just taken an Aranesp shot. Let's hope that wasn't a false result of low Hb last week & that this terrible feeling is also due to low Hb - because I've now got an Aranesp in the system.

Kidney patients should have their own DIY labs at home! It's so depressing to know that, with my periods now being stopped from surgery I've had in April, that my Hb can nosedive like this!

[Athena]

The Placebo effect is alive and kicking! 
After taking my Aranesp shot today, I did a moderate amount of exercise and now, I'm feeling normal again. I know the Aranesp hasn't yet taken effect barely a few hours after taking it, so that must mean that it's some placebo effect! In other words, mind over matter kind of stuff. I just find this funny. It's almost like - if we only could stop thinking, we'd all be feeling a little healthier! 

Let's see how long the placebo effect will last!

[obsidianom]

Thanks Caspar. What's puzzling in this instance is that I have enough iron in the system, even have a bit of iron overload, yet I have apparently have a low Hb. I just called my Neph to ask for advice & he told me he thinks I don't produce enough erythropoietin in spite of adequate iron. So I've just taken an Aranesp shot. Let's hope that wasn't a false result of low Hb last week & that this terrible feeling is also due to low Hb - because I've now got an Aranesp in the system.

Kidney patients should have their own DIY labs at home! It's so depressing to know that, with my periods now being stopped from surgery I've had in April, that my Hb can nosedive like this!

Hi "Princess"/    Yes you can have plenty of stored iron but low Hg.   You need the E-Poeitin hormone produced by the kidneys to actually use the iron. Its like having plenty of gas in the gas tank of your car but no fuel pump to pump it to the engine to burn.
Aranesp and Epo work very well.

[Athena]

Thank you Obsidianom - it's so great to hear from you! 

I've had repeat tests and my low Hb has been confirmed again. 2 days after the Aranesp shot, I'm only at 9.4. The other worrying development is that my Bicarbonate levels are now low (17) and I take one sodium bicarbonate capsule per day already! Now having to rely on regular Aranesp shots and also bicarbonate supplementation 3 times a day is so depressing. Both Nephs have said that diabetics can show this tendency relatively early in CKD. Neph 2 mentioned that the renal anemia & dependence on Aranesp may abate but he's not too optimistic about this.

When I asked him what else can I do for myself, he told me to just keep doing what I'm doing - which now feel like empty words to me.

[obsidianom]

Give the Aranesp a chance .  My bet is in 4 to 6 weeks you will be back over 10.5 to 11 Hg.    It does take a few weeks.   
Interesting that my wife needed EPO for 3 years , but suddenly after going on steroids for a brain tumor the anemia improved to the point she hasn't had EPO in 2 months.   Her last Hg was over 11.5.    So you never know what might happen.

[Athena]

Give the Aranesp a chance .  My bet is in 4 to 6 weeks you will be back over 10.5 to 11 Hg.    It does take a few weeks.   
Interesting that my wife needed EPO for 3 years , but suddenly after going on steroids for a brain tumor the anemia improved to the point she hasn't had EPO in 2 months.   Her last Hg was over 11.5.    So you never know what might happen.

That is so interesting to know. It seems to suggest to me that there might be more than one factor that can be influencing or driving this result, (eg recent change to Ibersarten, some hidden post-surgical internal bleeding, etc).