Thalassemia Patients and Friends
Discussion Forums => Miscellaneous Questions => Topic started by: confusedgirl on November 13, 2008, 08:08:08 PM
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Hey,
Hope all of you are in the best of health.
Im not sure if im posting in the right place, sorry its my 1st time.
Im writting because i would really like so advice.
My boyfriend has thallassemia major, hes 24, he has asked me to marry him and i really want to but im scared. He leads a really normal life and i never notice that hes thallassemic until he goes for his transfusions. He also has hep c which he had tried treatment for but has not worked. Otherwise he is alright at the moment. He does have iron in his heart but his heart is stil in the normal range at the moment. We went to a fertility doctor and it he is infertile. He is currently on sustanone. But apparently doc sed he can go onto another hormone which may allow him to have kids.
My biggest fear is losing him and im scared of marrying him and losing him. i dont think i can cope. Im scared of not having kids too but im adjusting to that now.
I just dont know what to do. Can a thallassemic have the same life expectancy and other ppl? Will his condition deteriorate when hes in his 30's?
Do thallassemics get married? Do you know any with thallassemia major who hav had kids?
Sorry if this email hurts anyone...Im just so confused..
Waiting for ur response
Thanks
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Hello Confusedgirl,
Thallassemics do marry too. Some thal. major have also children.
I am not the best person to answer this questions, because I dont have a boyfriend. I do think about the future.
I think it's very important that you do a dna test to rule out that you got thal. as well. This might be something to do with your background. But, all new babies in the uk are tested for thal.
Btw do you know how high your boyfriend's ferritin is? Is he doing any treatment? If he does he has a change that his heart function will improved. Deferipron (L1) is the best with removing the iron out of the heart.
I am sure they will getting answering your questions at the begin of the new day.
Good luck!!!
Best wishes, Dore
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Dear confused girl,
Welcome to the forum:) I understand your confusion. I am the mother of a 10 year old boy who has thalassemia.
I know of many thalassemia majors who are married and have children. I know a 40 year old female who has 3 children, and I know a 27 year old who is married - he and his wife have a one year old daughter (cute as a button).
With proper treatment a thalassemia major can expect to live a normal life span and quality of life. Much of how well a thalassemia major does depends on his/her support system. If you love your boyfriend and want to spend the rest of your life with him, you can be that support for him. Your love and encouragement can allow him to live a healthy and long life. With patience and faith, perhaps you can have children too, assistance may be required for you to have children even though this is not the case with everyone.
Of course there are risks with anyone, especially if they have a chronic condition but in this day and age you have every reason to be confident that you and your boyfriend can have a long and healthy life together.
I wish you luck and happiness with any decision that you make,
Sharmin
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Hello! :hugfriend
I think the most important thing that you have to think about is whether you love him or not. If you love him, don't give too much importance to kids, you can always adopt if he finally is steril. Think about that quote that says "The greatest thing you'll ever learn is to love and to be loved in return."
I would tell you to think about you two leaving aside other circumstances of your life. If you love him and you feel that you want to be with him forever, just do it. Don't get mad thinking about future. I really don't want to hurt you or make you feel bad but illnesses are not the only reason for death, you can die in a car accident or other reasons. Just live the present and enjoy the life with him.
About if thals can get married and have a normal live, I would say yes. In my case, I'm not married but I know 2 girls of 38 who are married (one of them has a kid) and they are completely happy. Just think about your boyfriend, you said that you only remember he is a Thal when he goes for his transfusions so you know he can have a normal live. Maybe you'll have to get used, if you are not yet, to scheduling your activities, I mean, to plan things depending on his hemoglobine. If he has just been to have his transfusions, you can do more busy activities and if he has to go to the hospital in short, you can do more calmed activities. That's the way I plan my life with my friends and family.
Well, that's the way I see it. Welcome to the forum and do not hesitate to ask as many questions you have, you don't hurt anyone, we are all here to help each other.
Kisses,
Laura.
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Confused girl,
Welcome on the forum,i hope you got your answers.
Laura,
:clap :clap :clap :clap very well said querida,i love this positive attitude :hugfriend.
Zaini.
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Hey,
Thank you guys, your so nice. It must be a thallassemic thing coz you all seem so helpful and my boyfriend is like that too.
In reply to some things:
Iv already had a blood test and i dont carry the trait.
He is on exjade at the moment. I dont know his ferretin level,hes told me in the past and i dont wna ask him now coz i dont wna remind him.
To be honest hes active all month, he does too much, he does more than a normal person, i get so tired,he does so much more than me, he works full time, goes gym, is in charge of a football league, does charity work...the list is endless. He annoys me coz he does too much and i get worried for him coz a normal person would be exhausted let alone him.
Its nice to hear that thalls get married and have children..by any chance do you guys know ne1 i can talk to who has had children.
I know you said, if i love him, it shouldnt matter, i feel like i love him, but it does matter to me? i dont know what that means.. I am generally phobic of needles n get faint in hospitals so i dont think im the best person to deal with all this. Also im a pharmacist so i know quite alot about medical conditions so i guess it makes me more aware of everything.
We have been together for 2 years and i dont think iv still fully accepted the fact that we may not have children. i love kids. the doctor said 100% he cant have it naturally coz his pitutary is damaged.
Iv been reading these forums and i can see alot of you suffer alot. But one thing i know and believe in is that god only makes the people he loves suffer because he wants them to enter paradise. When you are put under hardship, god is giving you his attention more than some1 who has an easy life.
I have a question, my boyfriend really hates taking his exjade because he says its like eating sand. Are any of you guys on it too? Coz i dont seem to sympathise with him, its something he needs to do and i cant see why he cant be 100% compliant. He is compliant more or less, but i think he misses occassional doses which really annoy me.
Also does ne1 have info on hepatitis, i think his is dormant...But im scared of contracting it :(
Anyway, thanks alot for your help, and i hope you guys have a good day!! im off to work now,
All the best..
Lotsa love
xxx
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Hi confusedgirl,
welcome to the site
I am a thal major, 24 year old, and have been married for the past 2 years and let me tell u that it has been the best two years... i understand what u are going through to some extent coz when we were dating, me and my husband also used to voice the same concerns from time to time.. i want you to know its okay to be scared and worried... i am still worried about what the future holds for us.., but what i think is if you are going to be blessed enought to be with the person you love, you shouldnt let the "what ifs" be an obstacle...
as peartree girl and laura and sharmin said, there are so many thal majors who are married, and have kids.. a lot of them are over 30s and living a healthy life and like Laura said, death is the most uncertain thing in the world coz it doesnt take only those with an illness or a disorder..
u can be the support he needs... as long as he chelates and is regular with his treatment he can live a normal life.. you already feel he's normal, so the only adjustment will be the transfusions..
this is what i feel, however, the decision is entirely what you think is right for u and ure boyfriend..
if u have any questions, feel free to ask...
tc and hope we helped..
Maako
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Hello!!!
I am on Exjade. At the beginning I also felt like eating sand. Then, I realised that I was preparing it badly.
Right now, I put all my tablets (3 of 500 and 2 of 125) together in a full glass of water and I wait for at least half an hour before taking it. When I take it, Exjade is completely disolved and it is very easy to take. After having drunk the full glass, I add some water and I take the rests in the glass. Next, I wait for at least half an hour more and I have my breakfast.
About knowing married people to talk to, the two girls I know don't speak English so I think it is not going to be possible.
Best regards,
Laura.
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Well, am 21 years old Thal Major single at the moment :) but i have met two people at the hospital who are thal major age (25 & 28) they both are married and one have a kid of 1 year old.. so its like nothing is impossible! everything is possible :)!
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One thal major I know celebrated the birth of his grandchild recently, so with proper treatment, much is possible. If your boyfriend says exjade is like eating sand, he should let it dissolve in the water longer. It does make it easier to take. He also has to be honest with himself. If he wants to take the responsibility of marriage, then he also needs to take the responsibility of fully complying with his treatment. He can't make excuses about chelating. I feel that any thal major who wants to make a lifetime commitment to another, also has to make a complete commitment to treatment. You are right to insist on total compliance with chelation.
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Whoa!!! A thal grand parent,it's definitely a very heart warming and pleasent news :).
Zaini.
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Wow, congrats to the thal grandparent! Congrats to all of us, seeing that this is possible!
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Hey,
Thank you all for your responses!!
Wow im really happy to hear that there is even a grandparent!! wow....
Its definetly reassuring to hear of all these ppl who have had kids....
You guys have helped..
thank you
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Oh one more qn...does anyone know if its allowed to leave the exjade to dissolve overnight? And drink it in the morning?
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Hi.
I am not sure but i remember that i once heard that it shouldn't be left for a long time to dissolve. But i guess members who use can answer better :dunno
manal
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Dear confused girl,
Exjade should not be left to dissolve for very long, for the same reason that exjade should be taken on an empty stomach. It is because exjade can be broken down by food in the stomach - so one should have exjade on an empty stomach in the morning and should not eat for 1/2 hour after taking exjade.
The fluid in which exjade is dissolved can also break the exjade down, so one should only leave exjade in the liquid very briefly (as long as it takes to dissolve it) and consume it immediately.
I don't let the pill sit in the juice.
Does your boyfriend dissolved the pill in juice or water? I don't think that exjade has any flavor, but it has a chaulky texture. However, this unpleasant texture is a small sacrifice considering what you are gaining - good health and a longer life. Oral chelation, if it is well tolerated and effective for your boyfriend is more convenient than desferal. I hope that your boyfriend is very compliant with his chelation - basically the length and quality of his life is directly correlated with regular chelation. He should not go more than 24hrs without chelation.
It is a good thing that you are thinking about what it entails, choosing to marry someone with thal It is good for you to know what is involved before you embark on this journey. You have every reason to be optimistic but there are a lot of responsibilities and a constant learning curve. I wish you the best of everything. Please feel free to lean on us - we will help you with everything that we can, you should never feel alone in dealing with thalassemia.
Best of luck, I wish you and your boyfriend all the best,
Sharmin
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Hello! :biggrin
I asked a year ago to the sales representative of Exjade and she told me I should not leave Exjade dissolving for more than an hour and a half or two hours maximum. In my case, I usually prepare Exjade when I wake up, then I have my shower, I get dressed and I take it. But sometimes, if I wake up earlier than usually, I prepare Exjade and I go back to sleep for an hour more. Next, I wake up at my usual time, I take Exjade and I continue with my things (shower, etc).
In my opinion, this last option is the best one because you only have to wait for half an hour before having breakfast; but it is very hard to do it on purpose because we would need two alarm clocks so I just do it if it happens that I wake up earlier.
Best regards,
Laura.
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Hi confusedgirl,
little late i replay on your post.
You have your boyfriend,he, believes in you and he loves you and want marry with you. Thals can get marry and have normal family and life like every person.
I know about thals males which are married and have families and are over the 30s. I know about 44 years man tahl major , he is married and have healthy daughter . I have a friend 30 year old thal major woman, she is married an have a wonderful family, and i hope they will have kids soon too.
I don´t know where are you and your boyfriend from, but i want to tell you that today in many developed countries with good health system and acts, with adequate treat and constance and responsibility the patients can have absolutely normal and fully life, with expectancy like the other people . Thalassemia can be controlled like chronic disease that not obstruct the patient to have a good education, career , work, to realize many activities, have family including kids. And form what you tell us about your boy he is doing very well.
I don´t remember in details but read something about infertility in males with thal- the process and the medicines to conceive kids, and the results were very positive. I can check it and if you want i can send it to you when I find it.
And also of course there are other solutions too- in vitro, donoring and adoption if having kids is so important for you.
And about the 30 years, its not correct- today there are patients 40, 50 and more years old and this who are over the 30s are not rare cases. As i said with the necessary treats and regiment thal can have same expectancy like health person.
What is the guarantee when someone marry to completely health person and happen some accident or something else and also can lose him and be alone.
Year after year doctors, patients, families , other people do many things and the treatment of thalasemia is going better and converts it in chronic disease like many other and not means the scary word thalassemia that it was many years ago.
Don´t be scared, listen to your heart and if he is the person that you love don´t think in what can happen the next 6 or 60 years, but believe and fight next to him and next to all the persons with similar mission. And i say mission, no problem because as you said God gives difficulties to the people that he loves more, because they can resolve them.
Enjoy every second together with your boyfriend , try to do many things together, make trips, and enjoy all the little and everyday human joys that the live gives us.
And why not after 6 and much more that 6 years steel be together and be one happy family and his health not only not to be worse that now, but to be better. With the advance of the medicine today many things are possible and hope soon it will be accessible for all the persons that need it.
Wish you not 6, but 60 and more years of happy family live, if you accept. and wish you many belief. And give him courage, because thals are persons with very strong spirit, fighters and they do well with many difficulties, much better that people without health problem, they can achieve many in the live if they decide it. And they did not did all this to surander and they will live much more then statistics say.
Marriage is big responsibility in which we decide to share the good and the bed moments with someone special and he the ours too.
You have to decide if you feel ready and if is the write moment to take this responsibility,and the same means for him.
My opinion is that we marry to someone because all that virtues that is he like a personality, we marry the person, not the illness, we love the person , not the illness by the same way that we don´t love because the car or the house or whatever, and you have to listen what your heart says. And to take your decision
I hope i don´t hurt you with my words, i tell this with all my best wishes cause i see you care vary much for him and i think you love him very much
I hope he also is familiar with all the responsibilities of marriage and he appreciate you and care for you as much as you for him. Hope he understand and appreciate your difficulties and worries too and to permit you to be next to him in all. And because of both to fight even more.
Wish you to be very happy the both,
marry or not, whatever you both decide, the decision must be only yours, of the both.
best regards :hugfriend
Tsveta
p.d.
if you want more information and want to send you for the fertility tell me please or in my profile is my e-mail, you can write me and i will send you what a have
kisses
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i always heared about MALE thalassemic patients who have daughters
but i did not hear about MALE thalassemic who have sons
is there anyone who know MALE thalassemic who have son?
and do that have any scientific background or not?
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Mohammed,
in my Blood Transfusion Unit there are two male thals with sons-one of them has twin sons, the other has got a son and another baby on the way.
Lena.
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Thanks a lot Lena for informing me :yes
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dear confused
i checked all the replies, everyone is in the favour of marring. but no one talk about HCV pls don't forget that he got HCV positive... so the chances are there to get infected with sexual relation.. and also there is a chance to get a baby HCV positive so pls take a advise from ur doctor.... with best wishes of ur happy married life
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Hi Mumtaz
The percentage of getting HCV through sexual relation is a very low percentage (about 3% only) and it decreases if this relation is a monogamous long term relation
http://www.hcvets.com/data/transmission_methods/sexual_exposure.htm#New
No Evidence of Sexual Transmission of Hepatitis C among Monogamous Couples: Results of a 10-Year Prospective Study
The risk of sexual transmission of hepatitis C virus (HCV) infection was evaluated among 895 monogamous heterosexual partners of HCV chronically infected individuals in a long-term prospective study, which provided a follow-up period of 8,060 person-years. Seven hundred and seventy-six (86.7%) spouses were followed for 10 yr, corresponding to 7,760 person-years of observation.
Also the transmission from the mother tothe baby in pregnancy is considered very low
This transmission appears to be inefficient, occurring in approximately 5 percent of live births to infected mothers.
http://www.hcvets.com/data/transmission_methods/hcv_and_pregnancy.htm
Hope this helps
manal
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One of my friends has a new child (some know him too) and it was a son. I think he was very suprised too, because the new babyboy still hasn't a name! :biggrin Nothing is impossible!
:heartred
Dore