Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: Andy Battaglia on March 26, 2006, 02:27:58 AM
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I want to thank Faizan for bringing up this topic. I think it's an excellent idea.
What is your life like? Tell us as much or as little as you choose. What is the quality like? Do you have a job or career? Are you in school? Are you married and do you have any children? What is your health like? Do you feel that in your life, thal is manageable? Anything you can think of that would describe your life would be very helpful.
I want as many of you to answer this as possible. This issue may be far more important than you think. From talking to so many people in so many countries, I have found that the quality of life for thals greatly varies, but thals in one place may have no idea what it is to live life as a thal somewhere else. Whether your life is good or not so good, please respond. Those who feel that life as a thal can be good need to know that not everyone has it the way they do. Those who don't have it so good, need to hear from those who do feel their life is better, so they can see the potential that exists for thals in today's world.
This can be a very educational topic for all of us. We all need to hear different points of view and what we can tell each other can have tremendous value. Please don't feel you have nothing to say. Everyone has something to say about their life and what may seem insignificant to you may be of great significance to others.
Let's get posting.
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You are absolutely right! Many people living with lower morale can learn to live a happier life from other peoples' life state.
For me, it's the attitude that counts! Most of the people here in Pakstan think that only the financially strong patients can enjoy the life to full! This fact is somewhat true but not necessary. There was this patient who was two years older than me. He died last year. He was less financialy positioned than me but he never compromised on getting blood on time and getting Desferal from wherever he can get from. He fought till the end and got the title of the longest living Thal in Rawapindi.
On the other hand I see rich parents who don't even send their children to school just because the kid is Thal. Believe me those kids have even worse life than the poor kids. They are nursed like babies and always kept indoors. This causes so bad phsycological effects on them that they just don't want to live anymore!
This is the bitter truth here! Such children also don't get blood on time and their parents don't care about the chealation etc. This results in poor life quality and the children die before reaching their teens!
Thank God my Parents never compromised on quality of life and made sure that I had no different life than the normal children. They strictly followed the doctors orders and sent me to school, college and finally to a university. I never let Thal get in to my life. Sure there were ups and down due this disease, but I always had the attitude that this is a temporary set back and I will go through it. I won't tell you my old stories all over again as they are available in different places on this site. However I will share the latest that is happening to me.
Last week I had diarrhea like situation and my doc gave me a broad-spectrum antibiotics. I hoped he knew what he was doing because antibiotic act as nukes on my blood counts. After prescribing he told me to keep check on the HB. At that time I knew that bad time is about to come.
Anyway I was prepared to see the HB result after the 3 days of nuking session! :wink My HB went down to 5 g/dl and after getting the regular refrigerated blood on Wednesday, no much improvement occured. Then they adviced me to get hyper-transfusions of fresh donated blood that I had to arrange myself!
I managed to get one donor on Friday and got transfused and next transfusion is due tommorrow (Monday!).
I had Desferal last night and I think that I am trying really hard to survive! If I had the attitude that I can't manage the donors than you can guess that this could be the last few weeks of my life! But NO! I won't say "DIE!" I will fight and I will try my best wether I am able to do it or not. I know that the prayers of all my family and friends(You guys) is with me.
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Wow what a question!!!
How does one answer it though? Everyone has different issues on this...
Well let me start by saying that my life with thal major hasnt really affected me either mentally or socially...I have finished school and am working now as a pharmacy technician, It hasnt always been like this though...I have had some down sides to it..But I really didnt let it get to me...I have bounced back pretty quickly...
I havent also been stopped to do what I have wanted to do by my parents...they let me do things that I wanted to do...
Like everyone you have your moments, but I try and not dwell on things too much..otherwise there is something wrong with me!!!!
My health is very good, I try and get my ferritin down between 300 - 400 which I am happy at the moment if it goes down lower I will be estatic :yahoo
All my doctors are really pleased with my progress...So I really dont have to worry about anything....
I am pretty much normal as we speak...Do most things others do....
So Thal hasnt really stopped me in doing the things I have and wanted to do...
Hope this helps...
:wave
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Hi there, it is nice to meet you. If you want to talk about my quality of life, please read my post and get back to me. I am very open and want to help others as well as to be helped for my own issues.
thanks
Dan
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Sajid,
I can't believe what you just went through. You are such an amazing person; to deal with what you have to go through, and keep going and keep fighting for your life and health. You have such a strong spirit. My thoughts are with you, and I hope you are feeling better.
:getwell Jean
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Sajid,
I can't believe what you just went through. You are such an amazing person; to deal with what you have to go through, and keep going and keep fighting for your life and health. You have such a strong spirit. My thoughts are with you, and I hope you are feeling better.
:getwell Jean
Thanks for the kind words!
Just wanted to tell you guys that today was my transfusion appointment and when I got my HB checked, it was 10 g/dl. The doctor told me to come next week as my HB was not that bad and I had recently had hyper-transfusions, so it is better not to get transfused this week.
I know it is low but here it is considerd good as our transfusion schedule is every two weeks and blood availabity is poor.
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If only the third world countries made Desferal and proper blood available to the Thals, what a difference it would make! Having a proper attitude is one thing and having to run around for blood and medicine ( just read the plight of Pakistan) is another thing.
Yes, I know it can be quite terrible to find quality care in "third world countries" (detest the term, btw), but things aren't necessarily that great in "first world countries" either - you only have to read about Andy's and Danielle's and Smurfette's (mis)treatment to realise this. At least, most of our doctors care about us. And, this is without even going through the cesspool called medical insurance in USA.
I can't get too heated up about the govt not doing enough for us, because, honestly, I can think of many other more important priorities for them - malaria and water borne diseases, to start with. Both kill more people in India than the number of "new" thals born every year. Cynical? Just facing reality.
I have made this point earlier on this forum, and did the same at the Pune conf - we can do lots more for ourselves, for less fortunate thals in this country by organising better and using non-govt resources better. Instead, TIF in India spends all its time and resources trying to lobby a non-responsive govt. :wtf is going on?
Ok, I will get off my soapbox now ... sorry for the digression to your original topic, Andy.
Poirot
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I didnt mean the Govt. to do anything, because I have mentioned that Thalassaemia is way below in the priorty list of the Indian Govt.
But can you deny the fact, that how many in India can buy Desferal and pay almost Rs1000 per transfusion? Some of us got lucky in India, because the company you work for pay for your medical expenses. I dont know about you Supratim, but you have a great job with a big firm.. so access to medical care maybe far easier. But in Pune, you heard how many patients are getting enough medication. And most of it not because they do not have an attitude towards the problem or not trying other sources, but most of it because they cannot afford the cost.
If my husbands company was not paying for the costs of my daughter, I also would also not have been able to afford the treatment.. and in India, we probably fall into the high income bracket.
Yes in the USA, they have major issues with the Insurance.. but at least they provide a help to a large extent. If you have the proper insurance, there are no problems.
At least this country has provided my daughter with a LIFE!!! And no matter what the arguments are, what she is doing today and the kind of opportunities she is getting here both at her workplace and in her personal life, would not be possible in India.
One can avail of any opportunities, only when one is in good health.. dont you think so?
Today the treatment of EXJADE per month is 3500$ and my daughter's co-payment is just 40$... so this proves that at least there is a way in this country.
Here at least no one will differntiate you because of your illness.. if you can work and work well, the sky is the limit.. anyone with any shortcoming can persue the great American dream. By that I DO NOT MEAN getting richer. It is the quality of life.
About mis-treatments in the USA.. well, people living here cannot even imagine the kind of mistakes that are made in India.. so they get affected by smaller stuff.I have made the rounds of several hospitals many many times in this country( USA) and I know the difference.
Please do not think that all Thals should come away to the USA or something like that...
This is solely my experience. I really tried very hard to find opportunities for my daughter in India. But she was rejected in so many ways, including the job offer from a large company, because she was honest enough to tell them that she had Thalassaemia and that she needed top be posted in a metro city.
It was also not easy for me to send her away so far from home.
But when I see her doing so well both professionally and personally, I do think that I made the right choice.
Yes India cannot be considered to be a Third World country .. but we still have so many problems, that to take away the tag of a third world country is still far off.
shikha mitra
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wow
a very interesting question indeed. well, i have thal minor, my mum and dad both have thal minor, my brother has thal minor and so does my teenage son. we all experience alot of sweating, we all suffer from headaches and we all feel fatigue at times. i am married and i have a teenage son from a previous relationship. my parents did not know that they had thal minor when my brother and i were born. mum found out about 20 years after dad and us kids found out. i guess you could say that i am just an average aussie mum and wife who just goes about life like most other people. i have known about thal minor since i was a young child so i had my son tested as soon as i could. i don't plan to have anymore kids but i have told my son about his thal minor and i have stressed on him how important it is for him to get a partner tested before they ever decide to start a family. i am so lucky to only have thal minor, given that my parents both have it. it would be very sad if my son had a thal major child due to carelessness. apart from that, there is not much else to tell about my life with thal minor
theresa
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"If only the third world countries made Desferal and proper blood available to the Thals, what a difference it would make! Having a proper attitude is one thing and having to run around for blood and medicine ( just read the plight of Pakistan) is another thing."
"Even if half of these facilities were available in India and Pakistan for example, I am sure changing the attitude would be much simpler. Imagine a boy have to run around for bloood with an Hb of 5 !What if he does not find a donor in time? How tough that can be.. it is the same in India too !! I had to hunt for my own donors."
shikha mitra
Dear Shikha aunty,
You have been making some excellent observations and points. Thank you for being outspoken and having the guts to admit the bigger picture. I know some thals may find it demoralising to admit to all this...but facing realities is not = being pessimistic or negative; rather it is being really brave enough to see it as it is. Fact is even to change anything one has to first face it. I agree with Poirot that thals have to get empowered or pull together etc. However even to make changes one has to first acknowledge the problems : that is: undeniably, the very first step. Denying the larger picture is not going to help change anything/anyone, :mad
but "getting real" about it just might touch the tip of this iceberg .
By not even accepting there are problems we can never bring about change.
You are so right that when treatment becomes less stressful and less of a financial burden it is a lot easier "Living with Thalassaemia".
As you and I know that is not the case for most people in India. NO use burying our head in the sand about it. I still see and know about a lot of children that are not even getting proper transfusion due to the lack of funds of their hapless parents, and ever so many taking blood without filters and worse getting reactions. The care for some is better no doubt, but the exceptions do not prove the rule.
Sorry to say >> not enough caring doctors, who know enough about thalassaemia, to go around either...can count em on fingers.
Also btw ....how will there be "mass screening" without Government involvement ??? I find this very much a big enough issue. :banghead Right up there with not just malaria ,... but cancer and AIDS !!
Kudos to you for being so vocal and able to share your experiences with us. :biggrin :thumbsup
Let 's hope we all have the courage to face reality as it is and not just "our own myopic reality". :smile2
Cheers,
Shilpa.
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Hi Shilpa
Yes the basic problems are so huge in India, that one wonders where to begin. So we see each parent just struggling to keep their child alive than think of the bigger picture of helping others.So I guess each one of us will just have to get educated about Thal and try and accept the given conditions and then get on with our lives to the best of possibilities.I have faced this reality for 30 years.. things are better no doubt in the form of availibility of filters, washed blood etc.. but at what price? How many can still afford all that?
We have to face the real picture ......and the Govt. will do nothing unless there is serious lobbying.. They have other priorities.
Maybe the Delhi Thal association can take some steps since they are sitting in Delhi and have renowned doctors on their panel. It is good to oraganise Seminars and attend conferences all over the world, but we just got to lobby at the Govt. level to get some real results.
All the very best to you Shilpa at all times.. just grab whatever opportunity comes your way and you will see all things will fall in their own place. All problem does have a solution in time!!
shikha (aunty)
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Shikha,
Don't let people get to you with their comments. Success speaks for itself and there is no doubt that your tremendous efforts have paid off for your daughter. Not only that, but a positive attitude has been instilled in your daughter and you should feel very good about that. You have done what we hope all parents will do, and that is to attend to the needs of the children and never say I can't do it. And you are right. We need a massive lobbying effort to get through to government, but perhaps the old lobbying methods are not the most effective. In today's world, it is essential to get the attention of the media if you are also going to get the attention of the government. I am thrilled when I am told that in some Indian movies, thalassemia plays a role. We have to get the public eye and this is one way to do it. You and Shilpa have both suggested that we find a way to get thal on Oprah and that is a fantastic idea. We have to take every advantage we can to promote our cause. Nothing is too big or too small if we put our minds to it.
On another note, I hope we can keep our conversations here civil. Some uncalled for things were said, and that can only lead to resentment. I'm sure your daughter also did not feel the comments were warranted and really, she is the only one suited to comment. We are here to help each other so please let's stay positive.
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In today's world, it is essential to get the attention of the media if you are also going to get the attention of the government. I am thrilled when I am told that in some Indian movies, thalassemia plays a role. We have to get the public eye and this is one way to do it. You and Shilpa have both suggested that we find a way to get thal on Oprah and that is a fantastic idea. We have to take every advantage we can to promote our cause. Nothing is too big or too small if we put our minds to it.
Yes, here is a link Link Mentioning Awareness of Thalassemia in Movie (http://bsnl.in/entertainment.asp?intNewsId=54801&disstyle=block&daysbefore=1) where we can find information on a Indian Movie - Salaam Namaste in which there is a mention of Thalassemia so that the general public is aware of it(through the movie)
http://bsnl.in/entertainment.asp?intNewsId=54801&disstyle=block&daysbefore=1
and here is the quote's of the director
Siddharth Anand, director, Salaam Namaste, "I came across thalassemia while reading up on issues about pregnancy for my script. Further research convinced me that it would be a good idea to introduce the thalassemia motif as a social message. But even I was not aware of the impact till organisations working for the cause barraged me with calls and mails congratulating me. Some even requested that they wanted to put up stalls outside the halls screening the film and distribute pamphlets that elaborated on the issue."
-Narendra
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Thanks Andy... yes I guess this debate can go on for ages and there is really no point in useless arguments..
All we can do is stay positive and hope for the best.. so just did a little modification to my posting.. :smile2
shikha
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hi everyone!
andy, this is a great question. i think my life is as normal as it could be. i went to school and then to uni to study for by bachelor's degree. had lots of fun. now i work in a private university and am still having fun everyday. i'm married and i'm thankful for such a supportive and loving husband. my family is great and my friends are great too. i just celebrated my 30th birthday and can still remember the tale my mum told me when i was 17. she said that the doctor who diagnosed me when i was 2 years old said that i might not live to see my teens. well, goes to show that with the miracles of modern medicine and lots of faith, anything is possible.
of course, not everything is a bed of roses, but i'd rather focus on the positive.
sometime in the future, i would like to have my own family. that's something to look forward to....
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Hi
Am Shareefa (Akka),
At first i found life boring when i didnt know this website and also my pals in Maldives. But now I should say being a thal i dont have much probplems other than one. That finding a good life partner. As a thal I think am doing good like others. Working in a shipping company for last 5 years. I have got promotions and also pay rises. My superiors are v. happy about my work, they say that i have no difference being a thal. Am v. grateful to GOD who showed me this website and also my thals brothers and sisters in this world. We should take life challenging and try to achive our dreams and goals. I feel much better after i met Andy and Shilpa and my friends in Maldives last thalasseamia day celebrations , June 2006.
My dear brothers and sisters if there is a will there is a way. So, lets go ahead in life and life as normals. Well no difference v been thals, only thing is it mite take bit of time.
U may kit with me always.
My mobile - +94 777209174.
LONG LIFE THALS.
LUV
AKKA
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Hey, you are finally on this site!
Don't forget to post regularly and make sure you post how your life has been in the past.
Take care!
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I am luck that I was born in Hong Kong and later moved to US. I had been in good hand over the years (Dr.V is great in Oakland Children Hospital) and have been relatively complience. Therefore, I do not have any serious medical condition yet. Thal does shape my life. It brought me to God, so I guess it is not a bad trade off :biggrin.
Thal does not really limited my life. I graduated from UC Berkeley and am currently working in Quality Control in a biotech company. I plan on go back to school for my master after some time off.
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Hi, I am Stephen from Singapore.
I do not represent Singapore in what I say, its more of me myself.
I am a Thal minor. And have been living OK. I can run 6km, i can play, i can do all kinds of sports. But i cannot donate blood.
Things are normal mostly, except that i notice recently that i seem to have depressive traits. I tend to think negatively more also, although I have been mostly an optimistic person. I become sad and disappointed easily. And only just, that I read in Wikipedia (which led me to this website) abt Thalassemia, that I realise that Thal minor patients may also suffer problems of asthma and/or bipolar disorder (depression or at least mood disorder).
Does anyone here have similar experience?
I dun like being unhappy! But i dont know what to do to alleviate it. It seems a psychological problem, but I have read that bipolar disorders, or depressions are usually biological problems.
I dont know what to do! Its frustrating. Its affecting my relationships.
Is there something I can eat or do to have a healthier psychological mental balance?
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First of all, welcome to the site! Don't be sad! Be optimistic! Think of the fact that being a Thal minor, you don't need to be transfused or have to go through Desferal every night!
Thank All-mighty God for all the blessings that you have. Think about the ones who are in worse shape than you are. Try to stay happy and make friends! Take your Folic Acid daily and everything will be o.k
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Welcome to the site Stephen. I possibly have Thal(Minor) too {not sure as the doctor's day I might have it as my MCV is low but the A2 values are in normal range}
I am a Thal minor. And have been living OK. I can run 6km, i can play, i can do all kinds of sports. But i cannot donate blood.
May I know - who told you - that we cannot donate blood. Is this because of Thal(Minor)?? I have queried a lot of doctor's on this and after their affirmative answer about Thal(Minor's) able to donate blood, I have donated blood a lot of times
-Narendra
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I think the decision on whether minors can donate is based on the Hb level, the same as anyone else. If your level is too low, they will not allow you to give blood. Many minors have fairly normal levels so there should be no reason for not donating.
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There werent a doctor when i went for the blood test at the transfusion centre. The nurse however, who did the tests on me said that my blood is not suitable for donating. Possibly because I am anemic, and hence need the blood more for myself. haha.
There was a test on the blood they drew from me. They dripped a drop on what looks like copper sulphate solution, blue clear liquid. And while other's blood sinks, mine floats. I suppose in that light (no pun intended), it has already failed the density testing.
I would love to donate blood though, because of the health benefits, the regenerating of new blood cells, etc etc.. and u know I am not a lady, so i dun have means to err... lose blood regularly... Heh heh.
Does Folic Acid really help? My mum only takes them when she feels weak and sluggish. Does it have positive uplifting effects? I suppose it increases general health? If so, I would start a daily dose of it. I read that Omega 3 also helps with moods. Maybe I oughta get a big bottle of cod liver oil.
Thanks for all the response. I appreciate them. For now, I will start my daily dose of cod and folic. Shall review in a mth!
Thank you for the reminder of my creator. You are right, Sajid. I should be thankful. His power is effective when confronted in weakness.
:wink
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Folic acid is needed by the body to produce red blood cells. It is recommended for all thal patients, minor through major. It is the single most important supplement for thalassemics.
Being anemic can be a factor in depression, as are many health conditions, such as an underactive thyroid. Knowing this can be of help, when you realize that there may be factors that have nothing to do with your own mental state that are making you feel down. Finding some support with people who have similar problems is also helpful. Once you realize you are not alone, it can make it easier to cope with life.
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I am a 41 year old thal inter patient living in AZ, USA. I have had a very positive, productive life thus far. I am happily married for 17 years with one miracle child, she is now 14 years old. I have received my bachelors and master's degrees, with the assistance from the Cooley's Anemia foundation. I am a teacher, and loving it.
Yes, there are factors to having thal that bring me down at times. But, I have such a large support group of friends who are there for me during these times. They have sat with me during hospital stays and assist whenever my health has the better of me. My husband has always said that he married me "in sickness and in health," he has done a wonderful job with the "in sickness" part and is ready for "in health" :biggrin
He knows my limitations and steps up to bat when I have hit my daily wall of exhaustion. I thank God daily for his love and support.
I have been receiving weekly procrit shots for 6 years and they are helping to maintain my hgb around a 9. Thank God for my medical insurance who pays for these shots. I would be in a world of trouble if they did not, cause here in AZ teachers aren't paid very much. My spleen was removed when I was 18 years old and I have been carefully managing my care since then.
Overall, life has been good and I try looking to the positive on a daily basis.
Keep your chins up.
God Bless
Mrs. T
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What Is My Life Like ?????????
ROCKING & COOL
Truely I have enjoyed each moment of it till date & don't bother about the future.
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Stepchoo
In reply to your comment about Omega 3, it certainly does help with concentration. However the omega 3 found in cod liver oil is not concentrated enough to have the desired effect. The best form to take the oils in is with a omega 6 supplement. this can be obtained in both capsule andl liquid form. Many people find that the taste repeats on them. This can be avoided by taking the vegetarian capsules which are formulated from evening primrose oil and fax seed oil.
The supplements help so much that Durham council is now giving them free to all 16 year olds who live in their area to improve their exams in the summer. Results can often be seen within 2 weeks and some people recommend taking a double doseage for the first 2 months.
Omega oils are obtained naturally from oily fish e.g. makerel , trout etc and from ofal. these are product that modern western diets are often deficant in.
Now as for how IO live with thalassemia minor,I have had three times in my life when it has caused me problems:
First when i reached puberty. This is when the condition was first discovered. I was tired all the time and my doctor insisted on giving me iron tablets which caused so man stomach problems!!
Secondly when I was pregnant. I was constantly tired and despite my doctors attempts at supplying me with mild iron syrups and injections my iron count did not improve. Eventually he gave up. We now have two grown up children who do not have the condition, but I did have a miscarriage inbetween them and do wonder if the thal had anything to do with it.
Thirdly, I am now peri menopausal and having great problems, (see my posting on the Thalassemia minor section),It seems to me that in the last 30+ years, GP's dont seem to have learnt anything about treating the condition. I am still being told I can take iron supplemen cant!!
One thing that has always bothered me about my thalassemia is I dont really know where it has come from.Yes I know I got it directly from my father, but because I didnt know his famiyl, I dont know if he got it from his father or mother.
Everytime I see a doctor and tell them I have thalassemia they tell me I cant have because I am white and English. They dont believe me till they see the blood test results!!Then they insist I must have some Meditarianian blood. I suppose I feel like part of my heritage is missing. My father is now dead and I dont know anyone to ask to discover the missing link!!
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Hi sue,
Thanks for the info. on omega 6 oil. I think I'm going to try it. I wish you were not having difficulty with your thalassemia. It is so frustrating when doctors don't know anything about it and they act like they do, or they give you information that is not right. :gaah
Like you, I also wish that I knew more about my family's health history. I know my father had the minor form, and that some of my other relatives had or have the minor form, but I don't know yet how I got intermedia.
Well, it's been nice talking to you. Good luck with your health. Jean
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Hi Jean,
it could be that you have also an silent mutation what is not easy to detect (not by electrophoresis only by DNA analysis). Combined with an other mutation or if it is homozygote it will cause an thal intermedia.
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May I know - who told you - that we cannot donate blood. Is this because of Thal(Minor)?? I have queried a lot of doctor's on this and after their affirmative answer about Thal(Minor's) able to donate blood, I have donated blood a lot of times
Hi Narendra, Hi Stephen
I'm from Singapore too and a thal maj. We have this policy here in the blood banks where they do not accept blood from people who are anaemic or are thal min. Not sure exactly why, but it's probably they are concerned about the welfare of the thal min after giving up blood when they 'do not have enough' themselves.
However I just heard that the blood bank now accepts blood from people who are thal min. Not too sure how valid this is but maybe Stephen you can give it a try again and let me know how it is. They probably changed the policy due to a constant shortage of blood here.
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It was nice reading everyones stories here! Hmm. I'm thal major and life's always been hard for me - I dont know. As a small child I missed a lot of school due to my thalassemia, so school was hard to cope with because all the kids had made their little cliques and I was alone most of the time at recess and cried a lot. So I never could really get along with kids my own age, I still struggle now with only a hand full of friends. Also I get along with older people much better and I think thats from being around nurses and doctors all my life - anyone else who had nurses who were like mothers to you?
I've been struggling with depression for 3 years - wow miss gloom and doom I am eh? Life's not all that bad but it does have its lows and I'm always very weak and tired and never have energy so I don't do a lot of things and school was very hard to finish due to my anemia. I work at a library as a page and I put books away, but when I'm low on blood (like now) I feel really useless and I don't like dissapointing people but I can never catch my breath. Right now I am sick too and I have to work tomorrow and I need my transfusion on friday so if I go into work tomorrow I am just asking for it. I had my spleen removed at a young age - had a port for 14 years, was just removed in october. Had to go through 24/7 desferal infusion for a year via port and portable pump. I've chosen to get my life in order and get healthier because I hate being all unhealthy and unactive and bleh.
Seems my older sister has had it easier - but i just guess she has that tougher personality. :biggrin
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Gosh,
I had severe anemia from blood loss during surgery and found it extremely depressing. I am not one to sit and do nothing and the anemia forced that. It was a very hard time for me and gave me great empathy for thals who deal with this daily and it was also one of the factors that brough Lisa and I close. Her knowing that I understood this broke down some of the barriers that normally exist between thals and non-thals. I take my hat off to the thals who deal with life long anemia. I think you are all incredible people to have the strength to deal with this ALL the time. My anemia slowly corrected over a period of several years but it is finally gone. I wish every thal could know that same thing. Anemia caused depression is a very real thing and should be seen as a clinical problem.
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Hello Ida-Maria,
You are a special individual and you need to love yourself unconditionally.
It is not easy for you, life is a struggle, each day it appear with its challenge and I feel you have cope tremendously well so far.
Try hard to stop crying ,gather the strength from the thought that you are alive and doing the best you can.
You are not alone you have all of us here that loves you unconditionally that is because we accept you and will befriend you for as long as we are here,
Believe me there are some wonderfull generous people here and lots of love to go aroud.
Make today the day you look at your life in a positive way.
Take care
LOve kathy
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Hello,
When my hemoglobin level goes low, I also start getting depressed. I agree with Andy that anemia can cause depression. Do you feel better as far as depression goes, after a transfusion? How low does your hemoglobin go before you get a transfusion?
Kathy can give a good pep talk! You ARE doing the best you can do, and you have had a lot to deal with. Many people have difficulty being compassionate if they have never had health problems. I am a teacher and worked with a teacher's aide in my room for some years. She was unbelievably healthy, she was literally NEVER sick. I, on the other hand, was sick all the time. I felt that she just didn't understand how I struggled with my health, as if I was just a wimp. Unfortunately, that is what thals have to deal with often.
I hope you get to feeling better. Just know that there are others like you out there in the world. It's just that we're scattered all over. Take care, Jean
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Thank you everyone... :biggrin
I go 4 weeks until my next transfusion and yes the depression gets worse right before the transfusion. I didn't always have depression I got it in the 10th grade when I got a really bad thing called Henoch-Schonlein purpura (http://www.nlm.nih.gov/medlineplus/ency/article/000425.htm) and it was horrible - lasted 6 months so I missed a lot of school and then I had to have the 24/7 desferal infusion and missed more school. I just felt like poop and didn't want to do anything.
:P
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hi all this is my 1st reply to a topic and i want you to tell you guys that i dont let thalassemia come into my life and my thoughts i think normal and stay normal i get transfussion aftar 15days and only those 3hours i know that i have thalassemia.. and i run my own buissness that is a shop and i try my best to stay healthy and think heathly i keep trying to move on my perents was quite sad when they came to know that i have thalassemia major too bacause my big brother who also had thala mojor died at the age of 17 bacause at that time there was no treatment for thalassemia in pakistan not even desfral and they have to arange blood from another city so thats why i want to show them that i will fight thalassemia and i will stay healthy and i will be there for them so just make a habit of knowing that you have thlassemia for only 3hours of blood transfussion....
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hi.. im now pregnant for 5 months. Yesterday, i went to see my gynea for monthly check up. I was suprised when my doctor said that im having bitter thalessimia.. Im not sure the meaning.. can someone explain to me? Can this affect my baby? My husband is normal. I forgot to get the explanation as i was shocked yesterday. Now i feel like very dissappointed and dont have excited anymore to the pregnancy. Thanks.
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Ask your doctor for a better explanation. I think what he said is beta thalassemia, but if you haven't known about this previously, then you most likely have thalassemia minor. That means that you carry one gene for it. The main concern is if your husband also has it, which means the baby would have a chance of being thal major, which is a much more serious condition than minor. It may be necessary for your husband to also be tested for thalassemia trait.
If you are a minor it may have some effect on the pregnancy, but it may also proceed with no problems. It will be necessary to have your hemoglobin level monitored during the pregnancy to make sure it stays high enough. Occasionally a minor will need some transfusions during pregnancy.
Right now you need to get some information from your doctor, concerning your own blood test results and also whether or not your husband is also a minor. We can give you better information when we know a little more.
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Andy,
Thanks for the info. Fyi, my husband is normal. Means that i now hv thalassemia minor.. Can you advise me about the transfusions during pregnancy? Is there any medicine i should take or anything to make sure my level of hemoglobin stays high enough? fyi, my doctor gv me calcium, acid folics and iberet to take twice a day. Is that enough? Do you have any tips about picking up energy or any health tips for Thalassemia minor?
Thanks..
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Folic acid is very important and you should take it even when you aren't pregnant as it helps build red blood cells. 1000 mcg folic acid is recommended.
Whether or not you need any transfusions will depend on how high your hemoglobin stays. Usually, minors don't need blood but occasionally the hemoglobin level drops enough to require some blood. It is important that the doctor is aware that transfusions are occasionally needed during delivery so they might need to be prepared as a precaution.
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Thank you so much for the information.. :)
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In the Philippines Thalassemia is quite rare, so when I was diagnosed to be suffering from it after 3 weeks of hospitalization when I was 20 years old, my family was disappoineted and took my sickness like I have lukemia. There are also a very few information about it so I resorted to knowing more about my condition through the internet. There were days that I would feel so down, but I know God gave me this condition because he knows I can manage. I never gave up that attitude until this day.
I used to look normal and feel normal since I am able to do normal activities, except that I was very sickly when I was younger and I was pale skinned. In fact everyone thought I was only a fair-skinned Filipino. Then my condition was diagnosed, my red blood cells are hemolytic and I am suffering from spleenomegaly. In fact my rbc self-destructs at 80 percent and it only reproduces at 20 percent. My hemoglobin level is normal at 7 to 8 gram. Since I was dignosed, blood transfusions became a regular routine just to make me feel comfortable and meet my hemoglobin needs whenever I go below 7 grams. I am also under folic acid and iron medication to compensate for my hemoglobin loss.
It was actually difficult for my family emotionally and financially, since healthcare in the Philippines is quite a luxury. Being an upper middle-class Filipino my treatment is quite a burden. But still my family and with the help of some relatives did everything to support me with my condition and we are managaing so far.
I had been in and out of hospital since then and I have my regular monthly check-ups for monitoring. I never gave up on living a normal life though, so I continued wiith my profession as a college instructor and I continued with my masteral studies. What makes my condition worse is that I am also asthmatic. Not until August last year that I decided to file a leave of absence with school and my teaching so I could take a rest and give my body a chance to recuperate, that was when I had recceived the most wonderful blessing a person with my condition can have.
Now at 24 years old, I am 31 weeks pregnant, and I am actually grateful that my baby hasn't shown any signs that he has the onset of Thalassemia and he is a very healthy baby boy for a Thalassemic mother. I am still in the high risk category, but I am hoping for the a miracle 'til the day I give birth.
My family and friends' support, their prayers and my doctors' perseverance are the things that made things well all the time for me. I am advised to take a complete rest since the baby needs all the oxygen from whatever hemoglobin my body can produce. I am pending for two blood transfusions prior to my baby's delivery. There are still times that I don't feel well especially now that the baby inside me is growing and he has growing needs, but I always believed that God gave me Thalassemia because he believes that I can handle it. So, I am looking forward to the day that I will meet my Nathan (meaning God's gift). I am still praying that I will watch him grow and see his progress every step of the way. :smiley
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My hemoglobin level is normal at 7 to 8 gram. Since I was dignosed, blood transfusions became a regular routine just to make me feel comfortable and meet my hemoglobin needs whenever I go below 7 grams. I am also under folic acid and iron medication to compensate for my hemoglobin loss.
Hello,
Welcome to the site and congratulations on your wonderful gift from God. :clap
Do you go for blood transfusions on a regular schedule (e.g Monthly or after a few months etc.) or just when you feel low and get your Hb checked and it is low. If you go regularly then you might be Thal. Intermedia otherwise you might be one of the more severe form of the Minor category. In either case, taking iron is not a good idea if you are on transfusions as the iron you get from the transfusions will add to the splenomegaly problem that you already have and increase your Serum Ferritin level which is not good for Thalassemics who are transfusion dependent.
Have you got your Serum Ferritin checked? I'm surprised why your doctor prescribed you iron as it does more harm than good to Thals. unless your Anemia (low Hb) is from Iron deficiency.
Let us know about your Serum Ferritin results. Till then.
Take care, Peace!
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Hi Nuworld,
As i am reading through ur post, i felt your story quite familiar. True enough, you are from Malaysia. Welcome to the site. It is common for new mothers to be diagnosed as a Thalassaemia during pregnancy. I think that you might be a Thal minor so don't worry much.
May i ask which hospital did you go and which part of Malaysia are you from?
Nur
Kedah
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Hello,
Welcome to the site and congratulations on your wonderful gift from God. :clap
Do you go for blood transfusions on a regular schedule (e.g Monthly or after a few months etc.) or just when you feel low and get your Hb checked and it is low. If you go regularly then you might be Thal. Intermedia otherwise you might be one of the more severe form of the Minor category. In either case, taking iron is not a good idea if you are on transfusions as the iron you get from the transfusions will add to the splenomegaly problem that you already have and increase your Serum Ferritin level which is not good for Thalassemics who are transfusion dependent.
Have you got your Serum Ferritin checked? I'm surprised why your doctor prescribed you iron as it does more harm than good to Thals. unless your Anemia (low Hb) is from Iron deficiency.
Let us know about your Serum Ferritin results. Till then.
Take care, Peace!
My first doctor thought I only have anemia so I was placed in iron medication which worsened my condition, only to find out I have Thalassemia. I had my first blood transfusion with that doctor. It was followed by one more blood transfusion after a week. But my family was dismissive of the Thalassemia findings because of the doctor's initial error, so I went for a second opinion.
My second doctor confirmed my Thalassemia condition which he suspected as Beta Thal Major. Since I was already suffering from spleenomegaly and very high ferritin levels, and my blood proved to be hypochromic and microcytic. So I was treated as Beta Thal Major and he scheduled me to have blood transfusions every 3 months because that is the duration that I consume all the blood that I get, and together with that is my folic acid medication. It had been an expensive treatment so I went for a third opinion.
My third doctor stopped me from receiving transfusions and placed me instead on iron medication combined with the folic acid, that is since my blood didn't go below 5 and 6 grams since my last transfusion and I managed to stay between 7 and 8 gram. By the way, I had my last transfusion January 2006. I am undergoing several tests while I was being managed based on the previous findings. Then I was hardheaded and decided to have a baby against my doctors warning.
Actually, I was put in iron medication last January 2007 after my bone marrow aspiration. I don't know if that is for me or the baby but my hematologist prescribed that medication and it was increased by my ob-gyne from once a day to three times a day. And my ob-gyne is the one who suggested that I undergo blood transfusions prior to my 8th month of pregnancy and prior to my delivery so those were the transfusions scheduled March 30 and another one around 1st week of May. My hematologist agreed with my OB, so as of now I am just waiting for my scheduled appointments.
Sometimes, it hurts to have so many doctors handling one patient. In fact I have another one, my pulmonologist who is watching over my asthma since my immune system is weakening and I can't afford to get sicker.