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Poll
Question: To those with thalassemia, how often do you need blood transfusion?
more than 1 per month - 2 (100%)
1 in 1 to 3 months - 0 (0%)
1 in 3 to 6 months - 0 (0%)
1 in 6 to 12 months - 0 (0%)
1 in more than a year - 0 (0%)
Never - 0 (0%)
Total Voters: 2

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caraiti
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« Reply #75 on: February 17, 2009, 01:53:59 pm »

Hi everyone I bet you thought I had forgotten you all... Shocked
You are not that lucky Cheesy hahaha.
It has been full on with the new boss and his changes. I'm enjoying the new and old ways and loving being back with the students, but its the new hours that I am having problems with. I start at 8am and morning internal is not until 11:20 so its abit scary for me at times keeping my diabetes under control until then, then lunch at 12:45.
I have had a check up with my haematologist who is not happy as my ferritin must be hitting 5000. To be honest I didn't want to look as I was scared. Her reaction was enough to scare me. We filled out another application form asking Pharmac to subsidise the cost of exjade. This is our 4th application so I am hoping that they will accept this one. My fingers are crossed. Might have to go back to 24 hours. This is a real blow for me. I have decided to keep to the 5 days a week but have 2 days a week that I have 24hours. This is my way of easing my body back into it. For some reason my haematologist has noticed over the years that I am reacting to the desferal.
None of her other patients are but we thought that maybe I have been on it the longest as well as the fact that I'm her only Thalassaemia patient so far. My port will be celebrating its 10th birthday this year but it seems to have become sensitive to the extreme that I will only have the needle in it for as long as the transfusion and then its out. The nurses say that it is probably starting to wriggle and thats the scratching pain I can feel. My haematologist has suggested that we look into putting in a new one but I'm not keen at the moment as I want it to last 10 years. She thinks I'm mad but she loves me. hehehe.
My diabetes has risen as well and so we are starting to adjust my insulin but now its getting scay as I have had 2 hypos in the last 2 days and nearly had another one today due to the long morning. My diabetes nurse wants me to inform the principal that the time between 8am to 11:20 Is too long for a diabetic who needs regular snacks. I can understand her concern but I'm at a lost in how I bring this subject up and I really don't want to be treated any different to my peers but I know that if the hypos continue I will need to step up and talk to my boss. Undecided
Over the holidays I had a nerve conduction study and this is the comment from that study...

COMMENT

A reproduible but low amplitude sensory nerve action potential could be recorded from the right sural nerve.
The median sensory nerve action potential was of slightly low ampitude but a normal ulnar SNAP was present.

For technical reasons, no compound muscle action potential could be recorded from EDB following stimulation of the peroneal nerve at the ankle. However, a normal appearing response was present with stimulation at the fibula head, though the response was of low amplitude.
Motor conduction in the tibial and the median nerves was normal.

There was no definite denervation of tibialis anterior or abductor hallucis.

INTERPRETATION

Nerve conduction studies confirm that there is a mild axonal sensory peripheral neuropathy.
The cause for this cannot be determined on the basis of the nerve conduction studies.

Sort gives me an idea of why I have been getting numbing sensations of parts of my body I guess.
Better than my GP telling me that I might have a tumour. hahaha

Hope you are all well
Catch up with you all later
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« Reply #76 on: February 17, 2009, 07:48:49 pm »

Welcome back  Wink
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kkmalaysia
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« Reply #77 on: February 17, 2009, 08:23:57 pm »

Hi, how are you doing? So long vever hear from you. I think your NCS is unremarkable. What remedu have you tried so far?
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caraiti
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« Reply #78 on: February 18, 2009, 04:30:57 pm »

Thats a good thing I think if you say its unremarkable Wink
Yes it has been too long.
When I think I have everything under control, something else pops up.
Must admit that doctors saying Im too complex or don't know doesn't help me with my issues Lips Sealed
Thats why I asked the nurses to get me an appointment to see my haematologist.
The good thing is my diabetes is coming down again but I'm having at least one hypo a day and one in the night averaging between 2.6 - 3.9 Cry
Never mind.
Never do things by half I say hehe
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caraiti
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« Reply #79 on: February 20, 2009, 06:42:20 pm »

Thaltrait -
How are you?
I hope that everything is fine with your life and health.

Tony1111 -
How did your friend's splenectomy go.
How is he coping after the operation.

Smartusha & Jolly55 - I would also like to know how things are with you both.

« Last Edit: February 20, 2009, 06:55:47 pm by caraiti » Logged

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thalatrait
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« Reply #80 on: February 26, 2009, 08:01:52 am »

Hi, nice to hear from you again!!

I am fine and more active now. I have my regular visit to my family doctor and my hemoglobin maintains aroung 10 to 12. My doctor said I do not need blood transfusion.

How about you? I have been waiting for your posts for past few weeks. Please post more good ifo about thalassemia here. I am waiting... Wink
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caraiti
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« Reply #81 on: February 26, 2009, 01:45:13 pm »

I am pleased to hear that you are more active. It's not much fun watching the world get the action.
I am glad that you don't need transfusions however I would have been surprised if you did considering you are trait.
Have you started taking vitamins or pills or have you been taking better care of yourself?
It is so nice to hear from you and to know that you are much more active.
I'm sorry for my absences but I will try to post more. I do have one request though, feedback would be great in letting me know what I should be posting here. Undecided
Take care Thalatrait and I look forward to being updated with your life.
Caraiti
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caraiti
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« Reply #82 on: April 16, 2009, 04:59:50 pm »

Came across this information so I thought I would post it.

G6PD deficiency and beta thalassemia have no relation to each other and neither condition would have an effect on the other. Some basics. If you have a child with a thal major, all of your children will be thal minors (carriers). This may or may not cause some symptoms of anemia, depending on how high the hemoglobin level can be maintained. The odds are that 50% of your male children would have G6PD deficiency and 50% of female children would be unaffected carriers. G6PD deficiency. also known as favism, can have no symptoms or there can be hemolytic episodes caused by ingestion of fava beans and certain drugs. A complete overview can be seen at http://drug.pharmacy.psu.ac.th/wbfile/159254520461.pdf
Most people with G6PD deficiency will have no problems as long as the precautions described on that page are followed.

So, your children would be like hundreds of millions of other people on earth who are thalassemia carriers. There would be no added danger if they carried both thal trait and G6PD.

What you need to find out from your partner  who has asked for your hand is what condition his health is and is he compliant with his treatment regimen. If he is compliant and has low iron stores and no other health problems, there is no reason that he cannot continue to have a full healthy life. The treatment available for thalassemia today has completely changed the long term prognosis for thals, as long as they comply with their treatment. Please be aware that treatment does take up some time and that there are routine annual tests that should be done. However, we know many patients who work full time and have lovely families. As long as this man is compliant with his treatment regimen, there should be no medical reason to not marry him.
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spulliah
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« Reply #83 on: August 05, 2010, 10:27:03 pm »

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.
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