Another big blow

cherieann

277
Gender:

Re: Another big blow

« Reply #45 on: June 25, 2008, 05:52:34 AM »

Thanks Andy, My haemotologist and I know that but not all professionals know that.
My doctor is trying to get the govt to grant a special order so that I can have the pill as well as my needles but she doesn't have much hope.
At the moment my desferal is nightly at the maxium dosage 5 days a week. But I know that I will probably decide to go back to 7 days 24 hours like before. I'm not keen as the pain and irratation was pretty bad but I'm tough... I just got to get my head around it.
I think once I can start knocking the levels down again. If that fails, I'll go back to prolonging the transfusions as much as I can to give the desferal a chance. Not recommended but I'm back in my fight mode.
You know Andy, that this last visit to the diabetes clinic was the first time it was acknowledged that although I'm on insulin I'm not really a type 1 and that its only because of my pancreas getting overloaded. Took me to speak up before they acknowledged it.
Hopefully they will start treating me as a whole and not just what they specialize in. That's what my haematologist always says. Boy I'm glad she is the boss and takes care of me.

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Thalassaemia is a lifestyle not a burden.

namitha

114
Gender:
Drop of Life!

Re: Another big blow

« Reply #46 on: June 28, 2008, 12:46:33 PM »

Sajid and all my diabetic friends,

I am joining the diabetic club too!

Got diagnosed in Sep 2007. I am on Insulin twice a day. I use the pen which is actually painless. I was shocked initially but I am cool now. I totally empathize with all of you. It's hard to cope with so many illnesses. But somehow we all cope.

Take care my friends and don't get disheartened.

Regards,
Namitha

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no less than the trees and the stars;
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Max Ehrmann's Desiderata

nice friend

Thalassemia Major
2836
Gender:
If I Can, Why Not You??... If I Can U TOO !!!...

Re: Another big blow

« Reply #47 on: June 28, 2008, 07:58:09 PM »

Hi Namitha
i m sorry to read abt ur diabeties ....
it is one of the problem to which sometimes some thals has to suffer b strong ..
dont dont loose ur patience ...
its nothing which can stop u to fighting to thalasemia.....
keep fighting

umair

« Last Edit: June 29, 2008, 03:59:23 PM by nice friend »

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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair

cherieann

277
Gender:

Re: Another big blow

« Reply #48 on: June 28, 2008, 10:46:33 PM »

Quote from: namitha on June 28, 2008, 12:46:33 PM

Sajid and all my diabetic friends,

It's hard to cope with so many illnesses. But somehow we all cope.

Take care my friends and don't get disheartened.

Regards,
Namitha

Well put, both you and nice friend.

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Thalassaemia is a lifestyle not a burden.

Poirot

402
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Re: Another big blow

« Reply #49 on: July 07, 2008, 02:54:50 PM »

Sajid,

Am sorry to hear about your diabetes.

I was recently reading about a new pill that they are using to treat diabetic patients, especially obese ones. Apparently, these pills try and stimulate the production of insulin in the pancreas and try to extend the life of "beta" cells to enhance the effect. Are you aware of this and if yes, have you tried them?

I will try and see if I can get hold of the name of the pills.

Poirot

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nice friend

Thalassemia Major
2836
Gender:
If I Can, Why Not You??... If I Can U TOO !!!...

Re: Another big blow

« Reply #50 on: July 07, 2008, 07:23:23 PM »

hi buddys :
i wnt to add an info abt insluin that is ....
Exubera is the inhaler insulin of novarits/pfizer u can search abt it ..
almost a year ago i heard abt it ...
i think its available now in market ..
here is the liink for
www.exubera.com
i also heard that insulin pillls will b available soon in the market ....... u can find out to this link .. writen below ..

http://search.yahoo.com/search;_ylt=A0oGkjS1bHJICjgAsk9XNyoA?p=insulin.tablets&fr=yfp-t-501&ei=UTF-8

here u will find sevrel results abt insulin pills

« Last Edit: July 07, 2008, 07:29:04 PM by nice friend »

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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair

§ãJ¡Ð ساجد

Beta Thal Major
1991
Gender:
اَسّلامُ علیکم Peace be Upon you

Re: Another big blow

« Reply #51 on: July 08, 2008, 05:12:05 AM »

Poirot,

No, I don't know about them. Please tell me more about it.

Umair,

I've heard about the inhaler and also know that it's discontinued due to cost issues. oh well,

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Poirot

402
Gender:

Re: Another big blow

« Reply #52 on: July 17, 2008, 11:00:58 AM »

Sajid,

I can't locate the article where I had read about the tablets that stimulate insulin production in the pancreas. And, I can not even remember the drug name. It started with Sty.........., but that could be the brand name and not the generic one.

Meanwhile, I did find this resource - do not know if this is helpful?
http://www.diabetesselfmanagement.com/articles/Diabetes_Basics/Oral_Medicines_for_Type_2_Diabetes/Print

Poirot

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Sharmin

4155
Gender:
Little A

Re: Another big blow

« Reply #53 on: July 22, 2008, 08:42:41 PM »

How are you doing with all of this Sajid?

Sharmin

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Sharmin

§ãJ¡Ð ساجد

Beta Thal Major
1991
Gender:
اَسّلامُ علیکم Peace be Upon you

Re: Another big blow

« Reply #54 on: July 23, 2008, 05:09:20 AM »

Hi Sharmin,

I'm doing nice. Yesterday I got my insulin changed to a mixed version instead of the rapid one. The cool thing about this is that I don't have to take it at lunch, so one needle less.

I hope your son is doing nice now. All these needles and medicine would make anyone cranky.

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اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

nice friend

Thalassemia Major
2836
Gender:
If I Can, Why Not You??... If I Can U TOO !!!...

Re: Another big blow

« Reply #55 on: July 23, 2008, 02:13:56 PM »

good to hear that sajid ...

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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair

Sharmin

4155
Gender:
Little A

Re: Another big blow

« Reply #56 on: July 23, 2008, 02:33:40 PM »

I'm glad to hear that you are adjusting well - and also to hear that you get one less poke now

Sharmin

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Sharmin

nanuaru

28

Re: Another big blow

« Reply #57 on: July 23, 2008, 02:37:08 PM »

Quote from: §ãJ¡Ð ساجد on June 17, 2008, 06:42:45 AM

Hi Sajid,
this the first time i'm writing to you .i know how painfull it for u. dear keep it up and cheer up we have to fight it out till we live . my daughter was declared thal major ten mths back it was heart breaking news for me specially if u were counselled at most premier institute pgi chandigarh privately ur seeing most expensive gyanecologist and if ur self are a doctor. day and night i curse my self but in end it was me only who came to terms that my baby will fight out with me to live a cheerful life.bye
guilty fatherof acutie pie
I have to sadly announce that I have experienced another consequence of Iron overload...

For a last few days I had been experiencing frequent thirst and dry mouth. I had felt the same several times before and got my Blood Glucose checked which always came out normal and I was just simply dehydrated.

So, this time I again got my Blood glucose checked just to be on the safe side and was expecting the usual result, but.... alas! it finally happened... The Gluco-meter was showing off in BIG FONT "HI" and Ketones flashing above; which when checked in the reference guide was >500mg/dl

My doctor advised me to get the Fasting levels checked in the morning which came out 344mg/dl which was quite an improvement in my opinion but not satisfying enough for my doctor. He then referred me to a diabetic specialist who was constantly insisting me to start on Insulin which I refused to start without trying the pills first.

Well, he eventually gave in and put me on Getryl (Glimepiride) 3mg for a week and said if this doesn't work then it's Insulin for sure.

Well, there was nothing much I could do. I just wanted to keep out another needle prick out of my life. Well, I've got six days to go to make the best of these pills and stay on them after the evaluation period and avoid another daily prick for the rest of my life. If not, then there's nothing else I can do about it $:-\$

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Zaini

3448
Gender:
Life is too short to be perfect.

Re: Another big blow

« Reply #58 on: July 23, 2008, 03:08:28 PM »

Hi Nanuaru,

Please don't feel guilty,whatever has to happen ,it happens,sometimes life just don't work our way,but to tell you the truth i feel myself blessed that my daughter is born in an age where oral iron chelators and other medicines are available,other wise 22 years back i saw my cousin dieing with the disease beacuse there were no chelators available at that time, at least in my contry. So cheer up ,roll up your sleeves and be ready to fight,

we are all here to support you,your daughter is lucky she has a doctor for a father,you'll be able to understand medical terms more easily which i don't

don't worry your cutie pie will live a long and healthy life INSHALLAH.

ZAINI.

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^*^Xaini^*^

Sharmin

4155
Gender:
Little A

Re: Another big blow

« Reply #59 on: July 28, 2008, 03:10:24 AM »

Sajid,

You had mentioned previously that you were going to pose some other questions to your doctor - I hope that they gave your concerns the attention you need. Just a quick reminder in case you forgot when all of these other issues came up.

sharmin

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Sharmin