Hb levels

[GoingThere]

Hello my fellow fighters!

Yesterday I received the news that one of my co-patients, who was transplanted in August, fights for his life. He got a pneumonia and then sepsis.
Such stories  reminds me that Tx is very, very risky.

It's been more then a Year since may Tx.

I have a question for you. At the beginning of my Tx Hb level was low, then went high and now it is dropping again. I've been sick now for 3 weeks (bronchitis) and yesterday I had labs and my Hb was 11.5. Normally it is around 13.

I hope this is due to my cold and bronchitis and not the sign my new kidney is failing. Any ideas?

GT

[MooseMom]

It is soooo easy to turn ourselves into pretzels worrying about any and every little number!  I think that's just part of it all.  So I try to live by the concept of "if they're not worried, then I won't worry."  You can't take just one number in isolation and extrapolate it to tx failure!  If you are really concerned, call your coordinator and ask!

Good luck!

[obsidianom]

Best advice is to retest in 2 to 3 weeks. There are a number or possible reasons this could be occurring including simple lab variation/error. My rule is to always retest a bad number if possible before doing anything unless there is clear clinical correlation to the number. In your case it could be the stress of the illness  . So before worrying too much I would just retest in 2 to 3 weeks and hope for the best.   11.5 isnt that low anyway .
My wife recently had a WBC of 19.5 which is double the norm. She felt fine. So there was no clinical evidence of illness. We just retested 2 weeks later and it was back to 7.5 which is normal. So instead of treating the number we looked at the lack of clinical correlation and didnt over react. It turned out fine.
Since you have been ill you cant really tell whats going on. In this case it is best to just retest later.    Good luck.  Let us know when you retest .

[MooseMom]

GoingThere, I take it that as a tx patient, you have labs every month, is that right?

[jeannea]

I agree with the others. No reason to panic yet. 11.5 is not that low. If you were sick you probably changed your eating habits. You might have eaten less red meat because you were eating soup or whatever. Concentrate on getting better.

[GoingThere]

Hello!

I had a schedule at my doctor. My kidney function is stable and my HB level was 12,6. That is still way lower than 15,6 in Avgust. Doctor explained to me that this is due to increased MMF dosage. 

GT

[RichardMEL]

Wait.. your hb was 15.6?!! That seems a little high to me for some reason.. even for a "normal" person I thought 15 or so was at the higher end of normal.

I agree with 2 of the points above:

1. re-test (which it seems you did ) when over a cold or something

2. try to not panic over every little number. I know - I can talk - I get anxious prior to every clinic visit and labs.. but it's more for the "big" numbers - which at this point is basically the creatanine. If that is stable, the others will shift around a fair bit as you see. Perhaps your guide in this case should be less about the specific number, and more as to how you feel energy wise (that may not be related to a cold or something at the time). If you feel extra drained over a period of time, then sure get checked out, but otherwise... try not to panic. 11.5 is still acceptable.

When I had my tx I started off at like 7.1 or something, and they declared if it got below 7 they'd transfuse me - which I strongly resisted. Luckily the more senior doctors agreed, and agreed to wait on it as it is apparently common in the first few months post-tx to go from low and slowly build up, and apparently this process can continue up to a few YEARS out in some cases. So slowly I went up 7.5, 8, 9, etc. My last one was my highest ever - 13.6 (well 136 in our numbers, but same thing) and that's beautiful. A bit of a surprise as sometimes I don't feel like i have some energy, but that's just the way it is.

If your kidney function is good, and the major indicators like your K, Ca, PTH and so on levels are OK then I think you're probably doing OK.

finally to the point about your fellow patient's fight. transplantation is "risky" but then again so is staying on dialysis as we all know. Let's face it - kidney disease is a biatch whichever way you look at it and every day we're doing OK really is a gift because as many of us know from experience, or what we've seen ourselves, you just do not know what is around the corner. So, try to worry less about the hb, and enjoy this day with your kidney gift. Treat yourself. Go for a swim, or run (I know you like to keep active ) or whatever.. heck, enjoy an ice cream or something that reminds you how wonderful it is to have these relative freedoms - I do - because unfortunately there are no guarantees with CKD. Life's short. Make the most of it. That's what I try and do

[jeannea]

I thought 15 seemed a bit high for hemoglobin too. With hemoglobin, too much can be bad too. It happens mostly in men. I think it causes heart problems. Can't remember.

For the panic thing, I talk a good game but panic easily. And this is my second transplant. I try to rely on my good docs and do what they say. But every strange feeling makes me wonder what's wrong.

[RichardMEL]

I thought 15 seemed a bit high for hemoglobin too. With hemoglobin, too much can be bad too. It happens mostly in men. I think it causes heart problems. Can't remember.

For the panic thing, I talk a good game but panic easily. And this is my second transplant. I try to rely on my good docs and do what they say. But every strange feeling makes me wonder what's wrong.

yes me too. It's hard not to worry about such things... like if I wake up and feel a twinge from the tx area, or overly tired when I didn't have a reason for it, or approaching lab results and the like. For me it's an understanding, as I posted above, that these gifts are finite and could be taken at any time.. I also never want to take what I have for granted and become lax about it and never remember to treat it right.