Exjade and kidneys

Dear All,

Today I'd a call from my doctor that my creatine (spelling?) level increased.(correct grammatica?)
Tomorrow I will let them do an other test and I will hear the results at tuesday

I was wondering of someone can give me more information?
Is there something to do?

I know I should drink more, can that be a cause?

Thank you all,

Dore

Dore,

How long have you been on exjade?

If your creatine levels have increased then you should have another blood test to confirm whether the previous test was right.  It is also important to know if this change is due to Exjade, if it isn't then your creatine levels will return to normal without stopping the exjade.  Also, when you have these tests done, try to have them done prior to your transfusion - rather than immediately after.  If the creatine levels are still off, your doctor may decide to take you off of the exjade for a while - but of course that is something your doctor will decide based on your results.

You are right, you should increase your water with exjade. 

Best of luck, please let us know how things are going,

Sharmin

My last transfusion was exactly last wednesday and the next is planned at the day before Christmas.
Is it the right time to do? I also want to let my doc know that I want to wait untill the transfusion. I wion't decided only after 2 tests.
If he isn't at the hospital at that time I will ask of an other doctor can give me the results (these special tests are blocked for nurses (and patients;)).

I've had a lot of pc trouble today, and it isn't over. Windows wanted to an update..... I hate pc's more than silly tests :P

Ok, I forgot one question. Where in your body do find you your kidneys? Is it the right or the left side? (If you look from your own view)

I dont drink or eat all the time good enough, because of the nauseau. I think I am also going to ask of I can take Exjade before I am go to dream world.

I haven't done a lot for my study today. I hope they will understand. I can't stop thinking about "what if I must stop with Exjade'...

Yea, I know: "Think positive" sometimes I can't

           


           

Hi Dore,

Hope these will help understanding.

Zaini.

Thank, yes it helped a lot.

Other question: can a kidney get swollen?

You see, since  I started with Exjade there has been something become bigger at my left side. I feel it when i lay in my bed and tries to sleep.

Ok, i went to the ENT doc and the ringing in my ear is gone. I've had it for almost a year. I was so scared that I didn't want to a doc, but it seems that i got my grandmother's ear trouble ;) I will tell more about that visit in the holidays, because he told me something that I didn't know.

Dore,

You can absolutely do your blood test now.  It is just immediately after a transfusion (same day) that may cause some of the numbers to be misleading.  I think that you should be followed very closely until your creatine levels return to normal.  

The excellent diagrams Zaini has provided should help you with figuring out where your kidneys are located -(by the way Zaini - you are increadible!!!)  

I also hope that you don't have to stop exjade, and that is why further testing is necessary because we don't want to jump the gun and assume anything.  At the same time, it is important to make sure that exjade is not affecting your kidneys - so this change in your creatine levels should be taken seriously.  The physiological change you described should also be looked at and you should not wait - if the swelling just under and below your ribs on the left hand side it may be your spleen (unless if you have had your spleen removed).  I suggest that you have your blood test immediately and see your doctor. 

Best of luck and please let us know how it goes,

Sharmin

Thanks Sharmin Dear 

Was just trying to be useful.

Dore,

Kidneys do get swollen,but i don't know if there is any relation with exjade,and i think if kidneys get swelling it will be painful,i got swelling on my kidneys in pregnancy and let me tell you it was awe full,i couldn't even breath,exhaling and inhaling was a really painful thing at that time,but of course it was due to pregnancy.

Zaini.

A sign of life:
Hi,

I have been very, very ill the past 5 days This was really one of my most worst flu every. Today it feels like i will lost my head. sounds funny, feels not funny. I just started eating after 5 days! And drinking after 2 days, I know it's very bad but the (sore) throat infection was horrible. Last night i was in panic because I couldnt get enough oxygen.
I have missed lot of dosis of antiobiotics, by all kind of possibilities...So doc told me that I could stop with that....:D ;) Amoxiciline or however you right it is disgusting. My parents mix it with limonade and then it's my turn....
Now I'm on panadol and anti-threw up meds (what's the right word?). i stopped with Exjade untill I am completely better.
The only thing I have eaten so far is cumcumber, broth, "rookvlees" (kind of meat from cow) and "beschuit with sucker. that's a kind of biscuit.
I still be hungry and got also nausea, because it's all very light. I can't drink anything else than water. But that isn't really a problem, is it? Normally I LOVE tea, but now yekk!

The thing is that I dont know what to eat more. So I need your help. I havent met de weight thing yet, but it won't be good. I feel so hungry.

I heard today that my kidneys are doing well. i will be carefull, because I must restart with Exjade and the target won't be reach very soon...

Best wishes,

Dore
p.s. My spleen and I are divorced since 1991

Dear Dore,

I am sorry to hear that you have been so sick    I hope you feel better very soon, I would suggest eating soup - chicken or vegetable broth with nourish you and make you feel better.  I am glad that your kidney's are healthy and hope that things go well when you resume exjade.

Take good care,

Sharmin

Thank you Sharmin,
It's a bit strange that you feel always good in the evening. I've had a kind of normal meal tonight. I have drink lots of water today so I restarted my body;). I also found out that orange juice with water is very tasteful. My throat still can't stand the best flavours. I hope the problem will be fixed before Christmas.
The pain in my head stays. It's so awful that I will have my hgb checked. I got this kind of headaches always then, but i can't remember that it was so bad... My bldtr is planned for 24th December (date won't change).
Voila!

Update:
My hbg was 4.7 mmol/l this morning. That's very low for me. Normally I am transfused by a hgb of 5.2-5.5
My doc don't want to change the date of transfusion.... So I have to live with this hgb for one more week. Let's hope it won't get much lower. The truth is that I will feel ill until the transfusion is done.

My God Dore!

My dear,hb of 4.7 can damage your internal organs,even hb of 5 is very low,i am sure you must have read threads where we discussed that ideal pre transfusion hb is between 9 and 10,why do they keep you so low,i know you don't have thal,but nevertheless,blood requirement is same in every body,please try to change your pre transfusion limit,bring it to 9 at least,you'll feel a big difference in your quality of life.
And why doc doesn't want to change the date,can't he see how miserable are you right now.

Please take care of your self 

Zaini.

Zaini, it's a little bit less terrible.
We are talking in mmol/l and not gl/dl or how do you write it?
I think that my 4 mmol/l is your 6.
I have no idea how to calculate more with these numbers. For already a long time i will make an topic of it, to ask of someone has an idea. It's a bit confusing now, but 4.7 is low for me.
Only the dutch haematologist wants to transfuse when a hgb is <4.5. That's too low for me to function well. I can't read a book now, so I can't study at this level.

Oh i am sorry Dore,   I just panicked at the numbers and didn't see the mmol/L thing,Silly me  ,

Any ways 4 mmol/L means 72 0r 7.2 mg/dl, And 5.5 mmol/L on which you transfuse normally is 99 or 9.9 mg/dl,whish is fine really.

http://www.diabetesmonitor.com/m37.htm

Zaini.

Thank you for the wonderful link!!!!