Hello.

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Offline Pratik

  • Thal Major.
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Hello.
« on: April 26, 2012, 04:42:49 PM »
Hello.

My name is Pratik and I am from India. I am 17. I am a Thalassemia Major patient. I was diagnosed as Thal Major when I was 2 and half months old.

Right from my childhood, I was brought up in lovely care of my parents and my docs. My blood transfusions still takes place at home since I was 4 or 5 as far as I remember. Many known and angelic doctors comes to my house for blood transfusion. I am very thankful to them as well as my donors. I live on them, so they are pretty much god or angels sent by those god.

I had also wonderful support of my teachers and my lovely friends. All were helpful and treated me always as just a normal person.

Now, little on my side. I am currently doing diploma in Computer Engineering. I like computers.

Here is a little short story which I remember daily, the good and the bad days I had;

Well, 2008 was my favorite year. Many good things happened to me that year. I was cheerful and many things improved overall in myself including my more concentration towards studies and my point of view towards seeing the life.

After every good, evil comes, as we all know. Same happened with me. I was running fine with daily routines of blood transfusions every 3 weeks. Then, that deadly 2009 came and everything changed, forever...

After many complications and weary and tiresome days, I was finally diagnosed as Diabetes Juvenile on 25 January, 2009 - I remember this day, very well. It was Sunday. I had a visit to doc on the previous day, i.e. Saturday, and seeing the symptoms my best bet was that doc knows what I was suffering from. She asked us to do various types of report, though. My dad called the laboratory to do those extra reports as well, as the blood sample was already taken as the transfusion was due on the next to next day, i.e. Monday.

The next day, Sunday, we all just had took the launch and around 14:00, there was a phone call. It was from the Pathologist of the blood laboratory, claiming to meet up the doctor whom we consulted the previous day immediately, as my sugar level was detected as 655 mg/dl and I had high levels of Ketones.

I broke apart hearing that news. My parents said, son, be prepared, we're going to the hospital. I was in shock a bit that I ate 2 chickoos (a brown color soft fruit having very sweet taste if anyone doesn't know) in fear, that I won't be able to eat it, and it was the last time I was eating.

At Sunday night, the insulin doses were going constantly into veins. And at 6:00 in the monday morning, I sweated hard. I woke up my mom but she thought it was due to maybe, hotness. We didn't bothered and took it as casual.

And then, I did not remember anything what happened with me. I finally woke up at 8:30 seeing tears in my mom and dad's eyes. I went into comma due to Hypoglycemia - a state which occurs when sugar levels are dropped down below normal levels. My sugar level went 30 or so. I couldn't even open mouth as per what my mom said, the docs came ASAP and started giving me glucose bottles. My dad was about to hardly reach home to prepare tea and he got phone call from my mom saying Pratik isn't responding anything, please come fast!

That was my diabetes story, it is still present, today as well and I am now acquainted to live with it.

In the same year, 2009, April 16, 2009, to be specific. It was the day when my exams end of 9th grade. I had severe leg pain started in my legs on one side of a leg. I had so much pain that I could have cut my legs.

Months after months, nothing was being diagnosed. Finally in August, it was relatively diagnosed that I had developed Osteoporosis possibly and deficiency of Vitamin D. I went Mumbai by then and started all the treatment.

Months after, I felt a little well.

I have no pain today, but I still have to take Osteoporosis medicine. Also despite of having no pain, I am affected by that even still today. I used to be a badminton champ. I cannot run very long distances today and develop leg pain if walk very intensively or run for more than 100 meters at once.

So, that is my story. I hope I didn't bored you all.

I remember those good old 2008 days daily, when I was just living only with thalassemia. Life is all about fighting, haha.

See you there around.  :)
« Last Edit: April 20, 2013, 07:31:29 AM by Pratik »
Every child is special.

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Offline Narendra

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Re: Hello.
« Reply #1 on: April 26, 2012, 07:39:16 PM »
Hello Pratik,

Welcome to thalpal. I would say - You are blessed to have caring and wonderful family and friends around you.

Do you know what your Ferritin levels were prior to your diagnosis with diabetes? I  hear many times thals managing their lives with regular blood transfusion, but ignore the other side of life (vitamins/supplements/chelation) - I hear so many thals that don't know that they need to chelate regularly and blood transfusion only is NOT the answer to management of thalassemia.

I have seen thals in their 60s with better management and I am sure youths like you can take on this fight.

What chelator do you use? What is your current Ferritin levels? You can manage and win this game of life with other tools that come in now that you are open to the world of folks like you battling with thassemia major everyday. There are folks like Andy you have with you to guide you on your way to success.

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Offline Bobby

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Re: Hello.
« Reply #2 on: April 26, 2012, 07:45:51 PM »
Welcome Pratik. Glad to see you are better now. Feel free to share many more stories.

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Offline Pratik

  • Thal Major.
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Re: Hello.
« Reply #3 on: April 27, 2012, 05:45:45 AM »
Hello Pratik,

Welcome to thalpal. I would say - You are blessed to have caring and wonderful family and friends around you.

Do you know what your Ferritin levels were prior to your diagnosis with diabetes? I  hear many times thals managing their lives with regular blood transfusion, but ignore the other side of life (vitamins/supplements/chelation) - I hear so many thals that don't know that they need to chelate regularly and blood transfusion only is NOT the answer to management of thalassemia.

I have seen thals in their 60s with better management and I am sure youths like you can take on this fight.

What chelator do you use? What is your current Ferritin levels? You can manage and win this game of life with other tools that come in now that you are open to the world of folks like you battling with thassemia major everyday. There are folks like Andy you have with you to guide you on your way to success.
No Narendra, that was not in my case.

Due to God's grace, I am blessed financially very well. In my whole life, I never skipped any medical doses.

Regarding my iron chelation, I was given Kelfer (Defriprone I believe) till I was 12. Then in 2007 end, Cipla released its own tablet similar to Asunra, which we took for some 10-11 months. Then around September 2008 end, we switched to Asunra (Defrasirox) and in January, 2009, I was detected as Diabetic patient.

My Ferritin levels vary like anything. Around diabetes I had 6000 I guess. Recently 4-5 months ago, there was sudden increase as per reports which claimed my ferritin levels around 8000 whereas just 2 months back it was 4,500 I believe. Then after 1 month of that 8000 report, it again came back lying around 4,800.

I don't know why it never goes down too drastically. However, my build up is such that my face and everything looks like a normal person and you cannot identify me and say that I am thal major, thanks to my parents who looked after me intensively.

Any advice?

At certain times I believe Desirox (Asunra) isn't working well and think to switch to that pump, but my parents worry because I already take or rather bare 5 needles of insulin doses a day and that they don't want me to suffer anymore.

But I am again considering an advice soon after my exams end in May.

How about you Narendra? Are you father of Thal major or you're the patient? What does your ferritin levels vary around?

Nice talking to you.
Every child is special.

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Offline Pratik

  • Thal Major.
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Re: Hello.
« Reply #4 on: April 27, 2012, 05:57:22 AM »
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« Last Edit: January 25, 2013, 07:22:14 PM by Pratik »
Every child is special.

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Offline Pratik

  • Thal Major.
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  • Gender: Male
Re: Hello.
« Reply #5 on: January 25, 2013, 07:18:34 PM »
Today is/was 25th January. I can never forget this day and year 2009. And today was 4th year (or anniversary) since being Diabetic.

Living in hope everyday, that some day, some 25th Jan, I'll break this anniversary record. Well, hope is life. :)

-P.
Every child is special.

 

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