Living with Thalassemia...What is Your Life Like?

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. 

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.

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

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   
     

Thank you everyone... 

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 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

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....

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.

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.

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..

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.

Thank you so much for the information..

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.

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!

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

Hello,

Welcome to the site and congratulations on your wonderful gift from God.

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.