Thalassemia Patients and Friends
Discussion Forums => General Chatter => Topic started by: Jos.- on May 15, 2009, 06:52:04 PM
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Hi all,
Today I visited after four weeks my (new) internist. After the first exploratory exchanges of politeness he congratulated me with my blood reports of Monday May 11. 'The Exjade did its work, your serum ferritin came down from 920 µg/L on April 4 to 637 µg/L.'
He looked a bit surprised when I told him that I didn't start taking Exjade which was prescribed by my former internist on April 17. Just keeping to my diet and starting to use IP 6 ('huh?') But he was quite straight forward when I told him that I decided to not take Exjade until there were any results of an iron study with at least an MRI of my liver. (Ferriscan and T2* aren't possible yet in The Netherlands.) He said that this was a right decision with such a rather low level of serum ferritin. On August 20 I'm going to have my intake at the expertise center for Sickle Cell Anaemia and Thalassemia in Rotterdam. Then we're going to learn if there's any iron deposition on my organs.
Because of my very good blood pressure and great blood reports regarding diabetes and cholesteremia I could also persuade him to do an experiment completely stopping medication (i.e. metformin & atorvastatin). We'll see the results of that action halfway September.
Thanks again Andy and others for your advice regarding not taking Exjade in the blind and the IP6.
Just to let you that I'm happy!
Regards,
Jos.-
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I am also quite happy that you have continued to avoid taking drugs for what looks like a marginal problem. :clap
I hope further testing confirms that you are not carrying any serious iron load.
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I am happy to know these results. Please keep on taking IP6 until the ferritn is normal and even onward, it is a good antioxidant
happy for you :wink
manal
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Good decision Jos, i m happy for you .. :goodluck Best of luck for future
Best Regarrds
Umair
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Thanks for the kind words.
Manal, of course I'll keep on taking IP6 and I'll stick to my diet, walking the dog, cycling twice a day for 20 minutes and using my nordic walking sticks as much as possible in the weekends!
Jos.-
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Jos,
I am happy too :biggrin after hearing that ,keep up the good work :thumbs
Zaini.
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Since Jos has started this topic, and because I am happy too - though for another reason - I'll announce here my MRI results I got yesterday:
T2* liver : 32,5 (normal is >19- no iron at all)
heart : 29 (normal is>22 -no iron at all)
Though these ranges show a free from iron heart and liver, I am not going to decrease the dosage of desferal and ferriprox I take.You see, I am almost sure that if I decrease it, iron will be increased on heart and liver(I would like your comment on that).This is the correct dosage for me, that which maintains iron within normal range, in other words a non-thal's range.
Lena.
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Congratulations Lena, i am really soooooo happy for you :congrats :congrats
Lena, you are a real inspiration and a model to follow, keep up the good work :yahoo :yahoo :clap :clap
manal
:bigparty
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Hi Lena,
I can't give any expert comments on your question about keeping your dosage at the same level as it was before these results, and I don't know where your MRI results come from, but these must be great results! And I can say congratulations! Great!
Jos.-
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Hi Lena ,
(http://i95.photobucket.com/albums/l131/rsaputri/animecard62.jpg)
its nice to hear this , ... you r an inspiration for other thals to controle Fe levels , i m still trying hard to get to the mark you're standing on .... i hope to reach that mark soon i m happy to say that you're one of the inpirational thal here on this forum ... Best of Luck for the Future ..
Lots of Best Wishes
Best Regards
Umair
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Lena,
That is such wonderful news!! I am so happy for you!!
:congrats :congrats
Thank you for sharing this wonderful news!
Sharmin :hugfriend
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Thank you guys, thank you all.
I wish the same for all of you. It's nice to have this kind of encouragement from you.
The reason I proceeded to announce my MRI results was to just show you that there are no limits to what one can do if one complies. Wasn't Andy who said that we all must benefit from one another's experience?
Lena.
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Lena,
Your T2* results are fantastic! I am so happy for you! :biggrin
I do have a question. Have you ever had high iron or have you always been completely compliant with your treatment?
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Thanks Andy.
To answer your question both of what you said is true.
That is when I started chelation with desferal 25 years ago my ferritin had risen to 8.800 and that was normal for that time because desferal had not been circulated back then.
Imagine, I started desferal injections first and then the pump got into use. I started using the pump when my ferritin had reached 8800 and started ferriprox in 2003. Ever since, I am on combined chelation.So yes, I started with high iron because desferal was not discovered and I remember my first MRI showed medium iron heart and liver absorption.And then, I made it my point and the MRI results got better year in year out.I have always been in compliance. From the start.
And I still am, I do not relax, because the enemy is round the corner...if I may say so.
Lena.
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Lena,
That's just great :hugfriend i am so happy for you,i hope one day we'll have T2* in our country too,or a ferriscan.
Zaini.
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So to all our members....
From Lena's expierence we can say that it possible to reverse the most difficult thing which is iron and liver overload, but as she said it needs a lot of compliance cause the enemy is round the corner...
... Lena i love this expression
Thanks Lena for giving us an excellent example for conquering our enemies :hugfriend
manal
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CONGRATIONLATIONS LENA. I am proud at you! Xxx
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Lena,
Thanks for sharing and yes, this is exactly what I mean about sharing your experience. Knowing what is truly possible is the best way for our group to be effective. It's easy to talk but when we can demonstrate the results of actions, it means so much to others who are dealing with these same challenges. What you have told us should be a wake up call for any adult thals who think that there is nothing that can be done to ward off the inevitable, and a statement of hope to all those struggling with being parents of thal children and who are uncertain about the future of their children. With dedication to compliance, a normal life can be achieved. Yes, there are many things that have to be done to ensure good health in thals but it can be done with work and this is the message everyone needs to learn from the experience of Lena and our older thal brothers and sisters.
What seems like a simple little post here actually touches on many subjects. In a few lines we see not only Lena's history, but a history of the treatment of thalassemia. When desferal first became available to Lena, who was a woman in her early twenties at that time, and who may have understood that her days were surely numbered, because non-chelating thals live only into their mid-twenties if they are lucky, Lena embraced that pump and the chance it gave her to live. Desferal and the pump gave Lena a chance to have a real life. What has always disturbed me since I first got involved with thal is the fact that so many thals choose a different path and pay for it with their lives. One of my earliest posts at our MSN site dealt with this. In an interview with Shilpa, this reality was addressed. Why do thals refuse the treatment that could save their lives? As it turns out, there are many reasons. Some of these I saw in Lisa. I think one of the things that bothers me most about what Lisa went through was that she really did not believe a thal could live longer. I wish I had known some of the older thals back then because I also didn't really know any better. Lisa's dad, who lived into his late 40's seemed an aberration and we surely could not expect this potential for thals in general. In addition, Lisa reacted badly to desferal. Her description of the pain and burning when using desferal made it easier for me to understand why one could neglect this life-saving drug. At the time, deferiprone had been tested in the US and Lisa had been in the trial, but this came to a quick halt and the only option was desferal and Lisa just could not stand taking it often enough to keep her ferritin in check. Shilpa, on the other hand, enlightened me about the host of cultural issues that can make it so hard for thals to gain acceptance in their cultures. Lena may have dealt with this in Greece, as thalassemia was actually known as the "stigma" and indeed held a stigma. Shilpa told me how thals are not accepted in India and I soon learned that the same situation exists in many countries, even in the Maldives where 18% of the population carry thal trait. I find it amazing that people can be so obtuse when they may even be carriers themselves, but this is the reality. Most parents in Maldives will not allow their child to even date a thal major, let alone marry one. This one issue is perhaps the most important outcome of the lack of social acceptance of thals that exists in many cultures around the globe. Why don't so many thals do what Lena has so faithfully followed for the past 25 years? Why won't they chelate? Of course we have the obvious reason that needles are painful and desferal does irritate. But is this enough reason to give one's life away? For most who don't chelate, the answer to that is no. The answer is more like "why poke a needle in your skin 5-6 days a week when life has nothing to offer a thal?" When your prospects in life are severely limited, what is the incentive to stay alive? When your options in life do not include relationships and marriage, education and careers and so forth, life can look pretty bleak and not worth the effort. I will say that oral chelation and the ease of using it, has somewhat changed this for many people, but the non-acceptance by society is still a major issue that does affect how many thals view their lives, leaving them with little reason to go on. This remains a major challenge and honestly, if the world is going to deal with this most prevalent genetic disorder, a change will have to come on a cultural level also. In a society such as what exists in India, marriage is so highly regarded that people often feel like their lives have no meaning unless they can marry. Living in the US, where so many people choose to either remain single or return to being single after failed marriages, this emphasis on the importance of marriage is not so easily understood as a life or death matter, but for a thal living in India, this is what it can become. In addition, thals are often seen as unemployable in India, leading to a situation where thals often have to hide their status if they hope to gain employment. For a woman like Gurleen Bedi, who was very small in stature and whose condition made itself obvious, it became a near impossibility to find employment in spite of stellar academic achievements. I have been told that doctors in India do not want to tell even minors about their status because it may lead to reduced opportunities for marriage. Obviously, we have a monumental task in the areas of education and awareness about thalassemia and creating acceptance of thals everywhere. But change does happen, just as it does in the area of treatment and I see some cracks in the status quo. When Maako and Akka, both from Maldives, married, we saw some evidence that for some in the Maldives, things are beginning to change, and it does give us hope that eventually, the world will recognize that thalassemia is both widespread and manageable. There is a lot of work to be done and we can all do our part in advancing understanding about thalassemia and creating more acceptance for thals everywhere. This can happen and it make take involvement on a huge scale by an entity like the Bill and Melinda Gates Foundation (keep writing them because the more we explain thalassemia to them, the more likelihood that it will eventually get some attention) but at some point the world will have to confront the reality that there are hundreds of millions of thal carriers in the world and that without awareness, we are in for a problem of tremendous proportions. As countries try to deal with this health issue, a realization that education and awareness are the keys will be made and as awareness is created, thals will become more accepted simply because it won't seem like an unknown to others. Creating awareness does bring acceptance.
Another thing I want people to think about is how much things change in regards to treatment and managing thalassemia. We often hear frustration about the slow pace of developments but think about this. 25 years ago, Lena started on desferal. Since then we have also seen the introduction of deferiprone and Exjade as chelators. We have also seen great strides made in the diagnostic tools used with thal. Things like Ferriscan and T2* are making it so much easier for doctors to identify and correct problems. Our understanding of the nutritional needs in thalassemia is growing by leaps and bounds. Yes, as far as a cure, BMT is still the only answer but there are so many new therapies on the horizon and even another potential cure with gene therapy, and we see that the complaint that it is taking so long for anything new to develop just does not stand up to reality. In those 25 years, things have changed drastically for thal treatment and in the next 25 years we will see far more. A thal born 40 years ago had no real prospect of living beyond 25 but that has all changed. Thals are living into their 40's and 50's and probably beyond that and no one really even knows now what we can expect given the treatment that is standard in today's world. This is simply amazing and when you think about all the diseases and disorders that exist in the world and how really slow progress is made in treating and curing these health problems, we see that the changes in treatment of thalassemia have indeed been great. Step back and be objective and patient and you have to agree that things have developed at a rapid pace and more is on its way. Thals born today have a much better outlook for their lives than when Lena was born, so let's acknowledge this and avoid the negative thoughts that do creep in. Let's not complain about the slowness of new developments because if you're honest you will have to admit that as far as thalassemia is concerned, developments in treatment have happened at a rapid pace. Let's not bog ourselves down with negativity when we should be looking forward to life. Let's celebrate Lena's achievements and also let us recognize that determination and hard work are keys to success. The enemy may be around the corner but that enemy can be kept at bay and rendered toothless with good management and compliance.
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Though non-thal, Andy, you describe the situation in every detail. I have lived every step of what you mention.And yes, I was near twenty back then and really in the turning point. And yes, more or less I knew my dates were numbered, although the impact of having so high ferritin was not so well known at that time.
But a little more increase of the ferritin and I would not be standing in front of my computer writing to you just now.
Progress in thal has been tremendous. That is what I'd like to say.Young thals have nothing to worry about as long as they fully comply.They are lucky.
Last weekend a conference was held here in Greece and Dr. Stamatoyannopoulos made his announcement concerning the news on gene therapy. I was happy to hear, that he said everything is ready for the second phase, the side effects have been overcome and by the end of 2010 here in Greece, thals will start to participate in the second phase and their genes will be transferred back to them- healthy now.The only thing that delays the procedure is the financial problem, because Greek State has to give money on that direction.
Let's see. Thalassaemia may, by the end of 2010, become a memory for some of us. Hope and pray.
Lena.
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:pray :pray :pray
Zaini.
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Last weekend a conference was held here in Greece and Dr. Stamatoyannopoulos made his announcement concerning the news on gene therapy. I was happy to hear, that he said everything is ready for the second phase, the side effects have been overcome and by the end of 2010 here in Greece, thals will start to participate in the second phase and their genes will be transferred back to them- healthy now
Wow ... its gr8 to hear that, Lena .... i m soo happy :) ...
Let's see. Thalassaemia may, by the end of 2010, become a memory for some of us. Hope and pray.
always praying for that day for all of us , for the all thals of the world .. i hope that day will come soon ...
Umair
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Thank you so much Lena for sharing this wonderful news, i never stop praying. Please keep updating if you know anything more :hugfriend
manal
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Andy,
Your post should be read by every thal.
Lena,
That is such wonderful news. Come on thals keep chelating and taking your supplements - hopefully a cure is around the corner.
Sharmin
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Soo True Andy and Lena ... m really impressed to both of you .. Andy's Research and Lena your experiencea nd achieve , i m inspired to you people ......
Why do thals refuse the treatment that could save their lives? As it turns out, there are many reasons. Some of these I saw in Lisa. I think one of the things that bothers me most about what Lisa went through was that she really did not believe a thal could live longer
!00% True , in my thal center a few of my friend's thiought's the same and when i told them a few members of this forum , the results ccame out , and they're compliant with chelation and their Fe levels are decreased alot ( bfore that their Fe was above 9000 and after starting chelation now they're below 3000 ) soo its pretty much good thing to share your experience and to encourage the people around you ... they wasn't my friend bfore that , but i took the 1st step and start talking to them why they are not compliant with chelation and why they're wasting remained desferal ...
The answer is more like "why poke a needle in your skin 5-6 days a week when life has nothing to offer a thal?" When your prospects in life are severely limited, what is the incentive to stay alive? When your options in life do not include relationships and marriage, education and careers and so forth, life can look pretty bleak and not worth the effort
they raised this argue too , and i replied them that " man make's his life with his own efforts , no one will give you everything in your plate , you have to strugle to fill your plate , and everyone has its very own kind of strugle , look at normal persons how much they are strugle for their life and future and you have to do that as well " ...
i mentioned this all just to say that dont hesitate to talk to encourage other , they will reply with rudeness and that is time when you can take the charge of their minds ....
once , one of my friend was raising argeuments about pump and IV desferal , he said " with pump u cant do this and that u feels like this blah blah " and with IV u comes sticked to one place "... after listening and discussing alot i rant over him and replied " if u wana do this then do or if you won't to do this then please don't try to make me afffraid of it " and then he said " wow, for the first time i m seeing u in this mood "...... and the same person raised the this one arguement :
why poke a needle in your skin 5-6 days a week when life has nothing to offer a thal?" When your prospects in life are severely limited, what is the incentive to stay alive? When your options in life do not include relationships and marriage, education and careers and so forth, life can look pretty bleak and not worth the effort
in addition he said " life has o meaning for me "
and for a moment i was un-answerable to him ,, but then a thought came in my mind that was "its the time for an emotional lecture" and then hahahah : here it is wat i replied :
you cant even die by refusing all this buddy , you have to live untill the time come's up .. you have to live for your parents, for your younger bros & Sisters ... you have to be the right hand of your Father , cant you imagine how they feel by seeing you in pain?? i can tell you they feel too bad ..
dont want to live na ?? okey dont live for your self live for your parents and family ... give relief to your father and take the charge of your treatments and health ... etc...etc...etc... it was almost 90 minutes lecture .. ( he's a faithfuly chelating thal now a days since last 6 months, 4 days a week + Ferriprox ) .... and i feel very happy to see improvements in his health .....
i dont wanted to share this story , but i shared to let u people know how tackle a thal when he come's to refuse everything ...
i think , its a long post aahh .... i should have to finish it now....
Thanks Andy, Lena & all other for super duper post under a super duper topic ...
Lots Of Best Wishes &
Best Regards for you all
Take Care
Umair
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Umair,
I loved your post! I also love that you are taking the spirit of being thalpals and helping your peers. You've got to be pleased to see the ferritin drop in those who listen. I am really proud of how our members reach out and help others. We are making a real impact in the world of thalassemia, reaching patients, families and friends and even doctors. And all this without a board of directors or a budget. It just shows what can happen when people take a positive and giving attitude to heart. :thumbsup to everyone!
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Lena
This was a real turning point, i really can imagine how hard were these days :hugfriend
Well said Andy :hugfriend
Umair,
i am sooooooooo impressed. How wonderful being able to change a life, amy God bless you and reward you with the highest ranks. Thank you for being part of our lives :hugfriend
manal
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Umair,
You are a true thalpal soldier buddy. You never stop surprising us. Good job.
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Umair,
Great job, you are so inspiring :hugfriend
Sharmin
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Andy, Manal, Tariq & Sharmin ,
Thanx Alot buddies for always being there for encouraging me to take the step like this ... its the result of the encouragement and support of you people that i got my confidence back and i m back in this the game of Life ... Thanx alot buddies indeed you People deserve's the Credit of it equally as me .. but it doesn't mean that i will bcome serious and will stop annoying you people :grin indeed you people deserve this as well hahaha :rotfl :rotfl ....
Best Regards
Umair
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Umair,
(http://i263.photobucket.com/albums/ii124/karma1193/MISCELLANEOUS%20SAYINGS/Good-Job.gif)
Good job bro,keep it up...
Zaini.
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Thanx Sis , :grin . i will keep trying my best ...
Umair :)