Old posts

[jolly55]

Hi,

One of my friends has thalasemia disgnosed in childhood. But she was told that she only has thalassemia minor. But recently, she frequently complains of lethargy and low energy.

May I know what she can do besides resting so that she can feel more energetic? 

[caraiti]

When I become lethargic it usually means that I'm....
1. due for a blood transfusion
2. my iron levels are too high :'(
3. ive not well
Theres only one thing that I can do for myself and that  is to take it easy while taking my medicines.
But that's me. I would suggest that your friend goes back to her GP and explain her symptons.
She may need to see a haemotologist in regards to her Thalassaemia.

Below is a copy I took from a Thalassaemia site. Hope this helps.
But for more info log on to Thalpal.com

Thal minor can range from silent carrier status with no symptoms to transfusion dependency in rare cases of the dominant thal gene. There has been very little research into the health of thal minors and as a result, most doctors are unaware that it can have symptoms that adversely affect quality of life. In your case, if you do have it, it would be called silent carrier. The main danger here is for future generations so getting a diagnosis is very important.
While there has been little research into the effects of thal minor, we have many members who are minors and have repeatedly testified to health conditions that are all very similar. The common thread beyond minor is that the lower the hemoglobin level, the more symptoms that are experienced. You will find very few doctors who will acknowledge that thal minor can affect one's health, but we do hope that patients will also tell their doctors so that doctors can become better informed. 

I really hope this helps.

[caraiti]

I have been asked by admin to write about some of my experiences as I live my life with Thalassaemia.
It is not easy for me to know where to start or what issues to address.
So again I will ask you the members, to ask the questions or tell me what you would like to hear and I will try to fulfill your curiosity.

[tony1111]

I don't know much about thalassemia. What I know is it is blood disorder which makes people anemic. As a patient, what is your main worry or concern?

[caraiti]

Thank you Tony for your question, I have to really think as there are issues that either concern and worry me.
I have generalised the main issues that I deal with. Hope these help.

Number 1 Worry & Concern -
 Lack of Knowledge with some people of the medical profession or not being taken serious Not all, but some medical staff don't always accept what I know from experience with my body and will try to go text book. For me I have learnt that if there is a small chance I might get this.. then chances are I have.

Number 2 Concern -
Sometimes the lack of communication between the different specialists.
This can sometimes lead to various doctors dealing with their particular speciality and not looking at the big picture and upsetting another part of my medical issues.

Number 3 Worry -
Not being accepted
I'm not very keen to tell people about my medical life in person because of their reactions 1) Over compensate (sympathy), 2)Don't know how to treat me so they avoid me, 3)Treat me no different.
I class myself as normal because I am. I don't know what life is like without needles so I can't miss what I never had. I'm me and I get scared of people turning away from me.

Number 4 Concern -
More medical problems
In my life I have/had endometriosis, infertility, tachycardia, iron overload (haemosiderosis), osteoporiosis, insulin dependent diabetes, blood transfusion dependent, splenectomy, cervical carcinoma now removed to name a few. So I do worry about what else I will get hit with but I don't freak as much because I now look at it as "Oh well, another to my list" Its either I cry or carry on and I choose to carry on.

Number 5 Worry -
Limited Pubic Awareness
We could actually control the amount of Thalassaemics if people knew to have the blood test to see if they are carriers. Some people don't know they have it until they have children and/or they get sick.
If people knew, then they could make more informed choices of whether to have children and to know the odds. Some children are born with the intermedia/major as both parents had the gene and didn't know. That's what happened with me.

Nb
Depending on the management of the Thalassaemia will determine whether it is classed as a blood disorder, trait or blood disease.
Again thank you for your question and I hope this helps.

[tan_md]

Just want to drop a few lines here.

I am so glad to see motivated patients here. I hope you people with thalassemia will continue follow up with your doctors and be compliant to treatment. Please do not give up!!

May God bless all of you.

From: Dr Tan

[tan_md]

Can you tell us how often do you need blood transfusion. May be you can share with us your experience in tranfusing blood. 

[caraiti]

It depends on whether I have been sick or over doing things but generally I get transfused once every six weeks.
It should be once every four weeks but my haematologist and I have an agreement that I can try for six weeks but I must let the nurses know if I can't wait that long and then I go and get a full blood count so that we can see what my haemoglobin level is.

If my haemoglobin is over 100 then I will get two units of red blood cells.
If it is less than 100 then I am transfused three units of red blood cells.

My specialist has me on hydroxurea which has may some difference in prolonging the times between each transfusions and I did manage to last 10 weeks. The down side was I wasn't getting quality of life, I was barely living. I thought that if I could prolong each transfusion, then it would give the desferal extra time to knock my ferritin down. The idea was there and it did help a bit, but I was barely living. Everything was an effort. Tired all the time, didn't want to do anything and talking just made me breathless. But that is another story.

[caraiti]

Dear Doctor Tan,
Thank you for your words.
Sometimes its the things in between that mean so much like...
Your thoughts before you wrote your comments,
The time you took to sequence your thoughts
The effort in typing the words to post.
All are very much appreciated.

In my 36 years I have learnt an important lesson and that is...
No one can put a time on my life expectancy because I have decided that I will grow into an old lady so that I can harass my husband 
Does that give you an idea of how stubborn I am?
Seriously though, I know I am very lucky to have Dr Hilary Blacklock as my haematologist.
She is the best and we make a great team along with all the other specialist from the other departments.

[ministar]

Hi caraiti. I have read your posts. I am touched by your motivation. I love your motto: "thalassaemia is a lifestyle not a burden". I hope you will bring more people with thalassemia to this forum and share with us your life.

Hope to see more your posts in future

[caraiti]

Thanks, I will do my best.

[caraiti]

Hi everyone just dropping a line to say sorry that I haven't been on line like I normally am but at the moment it has been 7 weeks since my last transfusion and I am really feeling tired, sore and just miserable.
I am having my crossmatch tomorrow ready for the transfusion on Wednesday. It normally takes two days before I feel the effects and then theres no stopping me. Abit like a wind up toy.
There are a few things I want to do but my energy levels are nil and typing this is tiring.
Be back on track soon

[kkmalaysia]

Hi everyone just dropping a line to say sorry that I haven't been on line like I normally am but at the moment it has been 7 weeks since my last transfusion and I am really feeling tired, sore and just miserable.
I am having my crossmatch tomorrow ready for the transfusion on Wednesday. It normally takes two days before I feel the effects and then theres no stopping me. Abit like a wind up toy.
There are a few things I want to do but my energy levels are nil and typing this is tiring.
Be back on track soon

Well done caraiti!!! I am so touched!! Keep up your spirit!! May God bless you. 

[kkmalaysia]

Have you been educated on blood transfusion?

[caraiti]

Have you been educated on blood transfusion?

I'm sorry, I'm not sure what is the question?
I know about what my blood cells look like before and after a transfusion, I understand about the screening and crossmatch procedure and I understand that for me they do not give blood older than a few days old and why.
I also know that I shouldn't extend my transfusions too long as the possibility of bone marrow expansion could occur. I understand the complications and adhere to my specialist recommendations, but there are times when I will posphone an extra week if it is something important enough for me to do.
You could say I weigh up the pros and cons alot and try to balance my life so that I don't miss out on life and what I enjoy.
To be honest, it was worth it as I got to spend a week with my 15month old niece who was up from Gisborne.