Dore's appt

I have no idea where else I should post it so here it is. At this very moment I restart Exjade. It's in the solving process at the moment. First dose will be 375mg. I think for longer for a week since bt is next wed or earlier because I will feel poor anyway. Good thing: for first time in a loooooong while my hgb is 5.8 mmol/l (x1.6 = yours) so I have postponed it to next week. Part of my decision was based on forecast of extremely good weather. I spend enough of those days....
Why I take it during nights? I took it at the very first morning of my bike trip and all day I was sleeping or taking the bike and luggage in and out trains. (due bad weather we decidded to travel to Dresden immediate and start with biking there.

Hopefully I have soon the energy to visit the forum.

Best wishes, Dore

   wishing u a fine Tx day  and super smooth Tx  ....

Best Regards
Take Care
Umair

Hello,

At monday I had still a hgb of 5.4. I was so glad it didn't went down too fast. This last blood transfusion went very difficult. I had so much pain that I cried in that room.  Everyone wanted to comfort me and they let me take 2 paracetamol. It took a long time before it started to work.

I still don't feel 100%. I realize that this is my new way of life, but I can not accept it yet. Yesterday I went out, but thankfally there was a wall. I suddenly was very dizzy. It might be caused by Exjade. Fact is that I feel most of the time dizzy. (that's what I meant with new way of life)

I'm at 750mg of Exjade now. It's not even 20mg/kg - if I calculated well - but I am a bit scared to take more. I still take it in the evening, but it messed up the whole night.

Zaini. I can't find the right place but I talked about possible liver/kidney problems, right?
They only let me do a normal blood test at monday. Nothing else, I don't know why. At the time I found out it was already too late to go back. I still believe my organs had a hard time. I had pain around those organs and dark urine. I don't know what caused the last though. I noticed that I was a little bit too yellow at the beginning of the week. Now I know my hgb I can not believe that caused it.

I also received my tests of last week. It's good I didn't see the ones from the last time earlier. The paper with results is upstairs, so I might want to edit this later. So far I as remember where my liver and kidney functions in the very high normal ranges. (I took no Exjade). My ferritine went in 2 weeks up from 1050 to 1358. I guess it is around 1500 since I didn't take Exjade and nor the diet.

Dore,

Are you monitoring your SGPT and Serum Creatinine regularly? its a mucst,plus keep yourself well hydrated,Lil Z's hemo asked me to give her as much water as possible,she said elevation in SGPT can also be caused by dehydration.

Zaini.

I know Zaini, I know. I fight for it, everytime I get in contact with any medical thing, but sometimes I am so tired of this fight. At Monday I saw it too late. In two weeks it's time for a new fight.
I'm glad Little Z's hemo can also be a little mine. It's true I'm not good in the hydration job.

Thank you.

Dore
ps I forget to mention that I had a blood pressure of 80 over 38. Everyone was getting it on her nerves, but I felt ok at that moment. Bp is alwys low, but now I let of a lot of alarms LOL.

Dore

Such a very low blood pressure can be a reason for all the pains and fatigue you suffer. What did the doctor say about it??? It is very important to correct it, please update on this

manal

Best of Luck Dore  .. i hope your it will b in normal range very soon  ..

Best Regards
Umair

Manal, never heard about that! If that could be the reason! Eureka, Eureka!
I know that the cold is caused by the low temperature, between 35.4 - 36.8. Idiot, but reality.

Thank you :-)

Dore,

I hope that this can be resolved soon.  Drinking more liquids will definitely be helpful. 

Sharmin

Hello Dore

I know that the cold is caused by the low temperature, between 35.4 - 36.8. Idiot, but reality.

I am not sure that we are talking about the same thing or not, but what i understand is that we are talking abut blood pressure and that you mentioned that it is

I had a blood pressure of 80 over 38.

 
So i hope i understood correctly

Anyway it is so this is really low. You can check this chart

Blood Pressure Range Chart Notes

NORMAL BLOOD PRESSURE
BP READINGS RANGE
HIGH Blood Pressure Symptoms -
Stressed, Sedentary, Bloated, Weak, Failing

Systolic - Diastolic
210 - 120 - Stage 4 High Blood Pressure
180 - 110 - Stage 3 High Blood Pressure
160 - 100 - Stage 2 High Blood Pressure
140 -   90 - Stage 1 High Blood Pressure
140 - 90 - BORDERLINE HIGH
130 - 85 - High Normal
120 - 80 - NORMAL Blood Pressure
110 - 75 - Low Normal
 90 - 60 - BORDERLINE LOW
 60 - 40 - TOO LOW Blood Pressure
 50 - 33 - DANGER Blood Pressure

LOW Blood Pressure Symptoms -
Weak, Tired, Dizzy, Fainting, Coma

 

http://www.vaughns-1-pagers.com/medicine/blood-pressure.htm

Here are symptoms od low blood pressure

What are low blood pressure signs and symptoms?

When the blood pressure is not sufficient to deliver enough blood to the organs of the body, the organs do not work properly and may be permanently damaged. For example, if insufficient blood flows to the brain, brain cells do not receive enough oxygen and nutrients, and a person can feel lightheaded, dizzy, or even faint.

Going from a sitting or lying position to a standing position often brings out symptoms of low blood pressure. This occurs because standing causes blood to "settle" in the veins of the lower body, and this can lower the blood pressure. If the blood pressure is already low, standing can make the low pressure worse, to the point of causing symptoms. The development of lightheadedness, dizziness, or fainting upon standing caused by low blood pressure is called orthostatic hypotension. Normal individuals are able to compensate rapidly for the low pressure created by standing with the responses discussed previously and do not develop orthostatic hypotension.

When there is insufficient blood pressure to deliver blood to the coronary arteries (the arteries that supply blood to the heart's muscle), a person can develop chest pain (a symptom of angina) or even a heart attack.

When insufficient blood is delivered to the kidneys, the kidneys fail to eliminate wastes from the body, for example, urea and creatinine, and an increase in their levels in the blood occur (for example, elevations of blood urea nitrogen or BUN and serum creatinine, respectively).

Shock is a life-threatening condition where persistently low blood pressure causes organs such as kidney(s), liver, heart, lung, and brain to fail rapidly.

http://www.medicinenet.com/low_blood_pressure/page3.htm


manal

Mine is almost always borderline low  .

Dore,

Manal is right,low B.P does cause fatigue,tiredness and pains in the body,do pay attention to it.

Zaini.

Manal 'the cold' is a dutch word translated into English what becomes senseless. I meant to say that I am always get it very, very cold during the first hour of the transfusion.

How can I pay attention to this problem?

I am wondering of this is related to my legs issue...?

I will start with the first, easy looking but not for me, "Drinking more liquids will definitely be helpful" advice.  Btw what kind of liquids? Only water?

Dore,

As i stated earlier that i almost always have low BP,so a friend of mine told me a home remedy,and guess what,it really really worked,my problem is that i sweat a lot,and especially in the morning when i am doing my household chores and in the kitchen while cooking,and what usually happened that by noon i was so dehydrated that i started feeling dizzy and light headed and my hands would begin to shake,and although i tried to drink a lot of water it didn't help that much,so what i did was i took approx 500 ml water,squeezed a lemon into it and a pinch of salt,and i kept drinking it through out the day instead of my plain water.And it really worked,i wasn't dizzy or light headed and i felt quite fresh,may be it replaced the salt i lost through sweating,but it did work  do try it.

Zaini.

Thank you. I will try it tomorrow. Promised! It's gonna be a very hot day.

If your BP is low, you probably do need a little more salt. Drinking water without also replacing minerals like sodium and potassium can make one sick, so if you're drinking a lot of water, make sure you also accounting for the increased mineral need, especially sodium.