new here

Hi!
hope i'm doing this right.
Chrissy told me about this site so
here I am.  I am married to a
man with Thalassemia....I think
he has Intermedia.  The reason
I am not sure is because he does
not like to talk about it and therefore
i am left to put the bits and pieces
of his life together.  I feel very alone
most of the time and sad because
i don't know what to expect of
our future.  I do know that as
a child he was very ill a lot of the
time and had a splenectomy
around the age of 6-7.  Growing
up he had transfusions off and on
when needed and then stopped
later in life.  He also had his gallbladder
removed although I don't know if
this has anything to do with Thal.
He also had skin cancer in 1999
(i believe) after his mothers &
grandmothers deaths.  I think
those incidents have taken a
huge toll on his health on top
of the Thal.  His hemoglobin
(i think that's what it is) level
is usually around an 8.  I apologize
for not knowing more but as
i said i am left to piece this all
together.  There is a great deal
i don't know.  Which is why i'm
here.  I keep mentioning to
him that we need to go to
Toronto to see an expert.  He
hasn't gone in years.  Any tips
or help from anyone would be
appreciated.  I don't know how to
handle this without him thinking
i don't respect his privacy.  I am
just scared.  Sorry for the length
of this post.   

Hello Artemis,

Welcome to the site!

Wow! How did you manage to collect information about a person who doesn't talk about it!?!? You seem to be very brilliant and truly dedicated to him.

Talk to him freely about thal. and don't feel that you are going to interfere his privacy. That's what husband and wife are for; to share their life and soul with each other.

You are doing this because you love and care about him very much and most probably he loves and cares about you too. So he shouldn't be offended by you. It is likely that he has kept this Thal. thing to himself all his life and is a bit conserve about it. But now with you in his life, he has the opportunity to express his fears and questions about Thal. with you and it is possible he wants someone to share it with him. Don't leave him alone with his Thal. to himself.

So go ahead make the first move if he doesn't. Tell him that there are many people like him and a place (Our beautiful site) where all Thals from around the world get to share their experiences with each other. Tell him to come here or at least share everything and question with you so you can interact with us for the solution. You will find that everyone here is really helpful and cooperative.

I hope you will resolve all the issues regarding your husband's Thal. Please feel free to ask anything about Thal. from us.

Take care, Peace!

Hi Artemis,
glad you found us, welcome to the forum!
i agree with Sajid    you've collected quite much information on him.
i think it's kinda unusual condition to not want to talk about thal to our own closest person, our closest person supposed to be the person i would want to discuss to about (if only i've got one   )
seems like ur husband (btw, what's his name?) has developed some fears in himself consciously/not   maybe one of his greatest fear is to bring suffering to his loved ones, so to avoid it he just don't want to talk about it. well, how is he doing right now? does he lead a normal life? i mean does he feel like having too many limitations in his life? because living with thal intermedia is kinda confusing, you know.. you'll seem to be okay but sometimes/maybe most of the time you're not feeling too fine as you seem to be.. kinda floating between thal major & minor, sometimes it's hard to get a good grip to balance ourselves.
  maybe you can start introduce him to us, let him know our community, we would be glad to welcome him & help him through the confusion. i guess when he feel that he's not really alone, he'll begin to open up.. he wouldn't have the excuse "you don't know how i feel, because you're not walking in my shoes" (that maybe he would say to you/any other normal people), here we walk in the same shoes.. and we'll be glad to share each other pain and cares.  :five
i'm sure you'll be able to find ways to help him.. yes, he's definitely need to see the expert to improve & keep his quality of life. Thal is something we live with for a lifetime, avoiding to feel the incovenient of fears is not a solution at all, we'll need to accept it & somehow conquer it. here we help each other up & we'll be glad to give you support too!
   he's so lucky to have you in his life!  keep trying.. do not lose heart, you'll find a way    and we'll be right here to help, okay?!
Take care  :blowkiss  keep in touch!

Hi & welcome to the site,
Im from sydney australia and have thal major (requires blood every 4 weeks) and ive had blood trans from birth.Your husband it does sound like he has intermedia thal.does he require deferal infusions at night? Thal patients are more prone to gallstones( i also had my taken out) and also most thals have had there spleen taken out also these are normal for thal patients .I hope you find the info you require.

Hi Artemis,

Welcome to this site  . I have thal inter too. Thal inters can lead a fairly healthy life if the minor problems are taken care of. Is he seeing any hematologist as of now? Hat's off to you for being such an understanding partner. Don't feel sad or lonely, we are all in the same boat.

Take care of yourself.

Regards,
Namitha

HI Artemis and welcome to our group,

Your husband is definitely intermedia from your description. Splenectomy can sometimes reduce the destruction of red blood cells enough to where the patient no longer needs to transfuse. Your husband maintains an Hb of 8 and as long as he does, it will most likely be recommended that he not transfuse because of the dangers of iron overload brought on by the frequent transfusions. Once a patient does transfuse regularly, it creates a state of transfusion dependency, so this is avoided if possible.

What can you do? Keep being a loving and supportive wife. Understand that his energy level may be low and that there are times he should avoid stressing himself physically. Make sure he eats a nutritious diet, but please avoid foods high in iron, as this can lead to excess iron absorption in intermedias. Some intermedias need iron chelation because their bodies will absorb too much iron from the diet. He needs understand this and that a simple thing like drinking tea with meals can help prevent this absorption. He should also be taking some nutritional supplements, especially folic acid. Please refer to our thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=118.0

What should he be doing? As previously stated, he should be under the care of a hematologist. Treatment has changed greatly over the years and he may not be aware of current treatments. He definitely needs to have his serum ferritin checked as iron overload is very possible in intermedia and can lead to a host of problems if left unchecked. With the current oral medication Exjade available for chelation, it is now a much easier task to lower the iron levels. Also, if he is willing, have him read the posts about intermedia here. We are here to be supportive and he will never be made to feel that thal is something to hide.

His quality of life can be better. You both should read the experiences of other intermedias and see what others do to make life more manageable. Our friend, Jean, has seen both sides of the transfusion issue and can give a wealth of her own experience on how this affected her well being. Nudge your husband in our direction. I think he will be happy he came here.

And anytime you have a question or just need some friends, we are here. 

 
Hi Everyone,

First i just wanted to say thank you so much for your
replies and kind words.  It means so much to me to
know that other people are here.  When Eric and I
first got together in 2003 I had a hard time finding
any information on Thalassemia.  At the time I did
not even know what it was.  Now there is this site
and I am so thankful.   :hug 

Eric (my hubby) was born in '63.  Growing up he
was teased for looking different.  Even now we
get comments and especially stares.  He has gone
into stores where the clerk has said to him, "are
you going to puke?"  because of the way he looks.
Pale, greyish/green skin.  People have called him
kermit or frog.  The cruelty has shocked me at
times.  We are both from small towns in Ontario
Canada so prejudices are still very common.  It
disgusts me.  I dont see those things in him, never
have.  But I do see how tired he is all of the time,
or how easily he can get sick.  I know he cannot
do what most people can do, physically.  He does
not see a hemotologist presently.  I am trying to
get him interested in it.  He has been through
some very painful procedures and i think that in
part has led him to hate the site of doctors.
I believe that his family was in denial even after
he almost died many times as a child.  It was to
painful for them.  His parents split up eventually
and Erics' health just got lost in translation i
suppose.  He has only been hospitalized when
something serious occurs(like he almost dies )
and other than that he just deals on a day to
day schedule.  He off and on takes folic acid.
Thank you for the tea tip.  He likes it so that
shouldn't be a problem.   I was wondering about
all the current treatments, like the pump, does
anyone use it? and if so how has it affected
your lives?  I forget my others questions at
the moment but i'll come on later when i
remember them.  Eric doesn't like me coming
on to these sites because he thinks i am spilling
personal info about him...which i guess in a way
i am.  But i need to talk to someone.  So thank
you again for being there for me.  I appreciate
more then you can know.  All of you.  Talk to
you all later.

thanks again,
Artemis

Hi Artemis,

Before you think about the pump or Exjade, Eric should get a serum ferritin test done to see if he has an iron overload problem. He should have this done because even without transfusions, his iron levels can possibly rise to levels that will be harmful to his organs. You can ask your local doctor if the can get this done locally. It is essential for him to know if his iron is under control. Also, encourage him to take the folic acid daily.

Most likely the nearest thal center to you is in Toronto. If it turns out he needs more specilaized care, he may need to contact the center there. There is no reason for him to be nervous about more medical procedures because he already has had his gallbladder and spleen removed and those are the major problems intermedias face in terms of surgeries. At this point he should be investigating ways to improve the quality of life, and this may mean a more comprehensive approach, especially as he gets older. This is a point Eric needs to understand. As he gets older, the thal problems may become more difficult and his Hb may also drop, once again requiring transfusions. It is in his best interest to inform himself and to do what he can to improve his health. I hope he will check out this site and read about intermedia and also feel free to ask any questions he has. We do our best to answer everything and also to lend support wherever needed.

Unfortunately, Eric's story is not unusual for intermedias. Since often they don't need to transfuse, they tend to get put off or lost in the shuffle, and the problems they face are often not recognized by medical professionals who may not be educated about thalassemia. Often, it is up to the patient to educate the doctors, or at least to get them looking for more information.

Hi artemis,
    I have thal intermedia and did OK growing up although I was sick all the time. I too was always a greenish, yellow color.  I am 55 now, and I didn't even get my condition diagnosed until I was in college. In my 20's, I  started getting infections all the time and my hemoglobin started going down to the 6 and 7 range. I was not doing very well, but I kept up with my jpb and activities as best I could. None of the doctors in my small rural town knew much about thalassemia. I was in the hospital 6 or 7 times in one year with severe pain, and I finally called a thalassemia center in Oakland, California, where I eventually went for treatment. It is really important for people with intermedia to get care from a thal specialist, because most hemotologists have no experience with it. Unfortunately some of them act like they know more about it than they actually do. This can cost you time, money, and emotional stress. Go to a center where they specialize in thalassemia, that's really iimportant.
     I eventually had my gall bladder out, and then my spleen. I felt somewhat better, but started getting sick all the time again. Then I finally started on regular monthly transfusions and that's when my health started to improve. I still have problems to deal with, but at least I am not chronically sick. I think as people with intermedia age, it just gets harder to live with such a low hemoglobin. At least that's my experience.
     Once you start regular transfusions, your body will start to get too much iron from the transfused blood. The body doesn't have a way to get rid of it, and it starts settling in the organs. This eventually causes severe medical problems. That's why we have to use an infusion pump at night with a drug call Desferal, which chelates the iron out into the urine. The blood transfusions take a lot of the stress off the body so it fuctions better. The blood unfortunately comes with iron. But if you use the pump, you can bring your iron levels down. And there is a new drug out, Exjade, which is taken each day, dissolved in water or juice - no pump, no  needles. I personally, wish I would have started regular transfusions in my twenties. I think the improved quality of life would have been worth the nightly pump. As it is, I didn't start the transfusions until about 4 years ago. I have much more energy, better health, and better coloring.
     I think it is wonderful that you are trying to help him, but I know people can be sensitive about their health. Sometimes you get so discouraged by certain doctors that you just say forget it, I'll just keep going like I am. From what you say about him, though, I think transfusions would really improve his quality of life. But of course, I'm not a doctor. How old is he? Just getting transfusions here and there is not the same as getting regular monthly transfusions. When you get monthly transfusions, your body never goes back down to those low hemoglobin levels, and this allows your body to thrive as it has never been able to do. The nightly pump is a commitment and a necessity. It's a nuisance, but worth doing for the improved level of health.  The oral chelator is working fine for some people. Others have had difficulty getting it paid for by insurance.
     Anyway, lots of rambling. I would be happy to talk to your husband, if he wanted to, we could compare experiences. He may not be ready to do this yet. I know I was overjoyed to finally talk to others with thal when I found this site. You start going a little crazy if you can't talk to someone who goes through similar health issues as you. You start getting isolated and withdrawn. There is a ton of information at this site on all issues concerning thal. I look forward to checking it almost everyday. It's a great support group.
     Good luck. Keep us posted and take care, Jean

Hi Artemis,

Glad that you are on this forum. I emphathise with Eric. Denial is common. It happened to me too. I just ignored everything and pretended things were fine until a hip fracture (my cricket accident) shook me up. It helps to come to terms and find out info so we can help ourselves. Andy has told you about the tea thing. Green tea is very helpful for preventing iron absorption which is greater in intermedias, so also cheese in moderate quantities.

I am posting some info on nutrition so you can help Eric stay off the no-no foods. Get him to see a hemato for an evaluation. I really appreciate you for what you are doing. Keep up the spirit!

Diet for the Non-Transfused Patient

Non-transfused thalassemia intermedia patients are encouraged to avoid high-iron and iron-supplemented foods, and encouraged to drink tea with meals, which decreases iron absorption. Serum ferritin is evaluated in adolescents. Desferrioxamine is instituted early in the development of hemosiderosis. Iron overloaded individuals receive a liver biopsy. Early cardiac evaluation with Holter monitoring and stress ECHO cardiogram is done in individuals with significant hemosiderosis. In addition, folic acid deficiency appears to be more common in these individuals.

Low Iron Diet for the Chronically-Transfused Patient

Regular blood transfusions can lead to iron overload in the body. Extra iron from chronic transfusions is stored in the liver. Once the liver stores are full, the iron begins to accumulate in places like the heart and pituitary, where it can do damage. Iron overload can also result from increased absorption of iron from the gut, as can be the case with thalassemia intermedia.
To help keep the iron stores from building up too fast, a medication called Desferal will be used in conjunction with a low iron diet. Keep the iron under 10 mg/day for those children under 10 years old, and under 18 mg/day for those who are 11 years old and older.

Children who have thalassemia and are transfused are still relatively anemic, so their bodies might still crave iron. As it may be difficult to watch their diets closely, they should develop good habits early. Remind children to definitely avoid very high iron foods such as dried beef and other high iron beef products, even if they are craving it. Remember that the iron found in meat is much more easliy absorbed than other sources of iron, such as cereals and breads.

Do not cook with cast iron cookware (e.g. a wok) because iron from the cookware can transfer onto the food. Some foods, such as orange juice, can enhance iron absorption, while others, like tea, dairy and coffee, can decrease absorption. If you are using Desferal, however, it is recommended that you take 250 mg or less of vitamin C after beginning infusion to help increase output of iron.

On food labels, the percentage of iron in one serving of that food is usually listed. This is based on the U.S. Recommended Daily Allowance of 18 mg/day. If the label says the food contains 8% of the daily recommended iron, multiply .08 by 18mg to get the mg iron from a serving of that food. Don't forget to check candy bars and snacks!

Low Iron Diet for the Chronically-Transfused Patient
Very high iron sources are found in the following foods; they should be avoided or eliminated from the diet:

Proteins that should be avoided or eliminated from the diet:

    * oysters
    * liver
    * pork
    * beans
    * beef
    * peanut butter
    * tofu


Grains that should be avoided or eliminated from the diet:

    * flour tortillas
    * infant cereal
    * cream of wheat
    * Malt-O-Meal
    * cereals, such as Most, Product 19, Total, Kix, All Bran, Life, Raisin Bran, Special K, 100% Bran, Rice Chex, Rice Krispies, Cornflakes, Wheaties


Fruits/Vegetables that should be avoided or eliminated from the diet:

    * prune juice
    * prunes
    * watermelon
    * spinach
    * leafy green vegetables
    * dates
    * raisins

Hope this helps. You are doing right Artemis, don't worry about it.

Regards,
Namitha
    * broccoli
    * peas
    * Fava beans