Am I sick? I don't think so.

Hi guys,

I normally go fortnightly for transfusions but since the last month I have to go weekly as first my Hb before the Transx was 6.2 then 5.8 and finally 8.8 and yesterday I got another Transx. I don't know what my Hb is will get it checked soon when the weather gets better for me to get out. Now I will go after 2 weeks and get a fresh blood (own donor) transfusion as I have a hunch that since the last transfusion made a sudden boost in Hb; the ones before it were not as fresh as they should be.

I really need to find some solid points to convince my doc. to not to take my spleen out, but they only believe that low T.L.C and PLT + no infections = Bad Spleen

 

Take care, Peace!

I am just curious, why is your transfusion so often?  Is it not bad for your liver? 

My doctor moved me out of the regular every 3 months transfusion because she said too much transfusion can create complications on my liver.  Actually my doctor lets my body adjust to low hemoglobin instead for as long as i can manage. Her justification is the body and the organs can adjust to the level of hemoglobin a person has.  So as of now even if my hemoglobin drops to 5 or 6 grams i don't undergo transfusions.  Yes, I get dizzy and feel weak when that happens. Sometimes my asthma and allergy even gets triggered.  It's just that I am advised to avoid stress and watch my diet plus an increase in my folic acid intake.  Can you believe that without transfusions at that level, my body can recuperate and reach 7 to 8 grams again when I visit my doctor again?  In fact I can manage my normal activities at that hemoglobin level already. I'm even pregnant!  It is like my body system fends for itself most of the time.

Anyway, I hope they save your spleen and everything will go well for you! Just keep your spirits high Sajid! The body is a temple of the spirit!  Miracles do happen.  God Bless you! 

Thanks Lei,

I really needed that

I know I will get over it in a day or two.

I wish the doctors would have a look at this site more often and learn from the more experienced persons from around the world than their text books.

As far as having low Hb is concerned; then I have a fair share of that experience too, like I said in the earlier post that even in these low HB (5-6) I don't feel much different, further more check out this post of mine and you'll see what I mean:

http://www.thalassemiapatientsandfriends.com/index.php?topic=71.msg276#msg276

Take care, Peace!
 

I am just curious, why is your transfusion so often?  Is it not bad for your liver? 

My doctor moved me out of the regular every 3 months transfusion because she said too much transfusion can create complications on my liver.  Actually my doctor lets my body adjust to low hemoglobin instead for as long as i can manage. Her justification is the body and the organs can adjust to the level of hemoglobin a person has.  So as of now even if my hemoglobin drops to 5 or 6 grams i don't undergo transfusions.

Lei,

Sajid is having Thalassemia(Major), so he would need transfusions more often unlike you(which seems to be Thalassemia(Intermedia)). With Intermedia, the doctors try to avoid the transfusions as much as possible and see if a person can maintain the low Hb and do OK. Your doctor is right about compications with regular transfusion as that might lead to unwanted Iron Overload and the Intermedia's body might shutdown Hb production and might become Transfusion dependent

Readers --> Please try to understand the difference in every other person's post. If there is a Thal(Intermedia) talking about his adjustments, that does NOT neccessarily means a Thal(Major)can do it. Our doctor's are our best judge and as much as I hate when some doctors are Ignorant and lazy to read and understand the latest deverlopment, we should respect them with their understanding. We can read and get more information and help ourselves and the doctors, but listen to our doctors and let them explain why something is being done or why something is NOT being done. Sure, we can relate other Thals with us when we feel the same but just do NOT do things on our own, it might hurt us because everyone's body is different and the doctor's can look at the complete results in details and have a clearer picture.

The difference between major and intermedia here is that an intermedia's Hb level will level out in the 6-7 range, but a major's Hb would just continue to drop without transfusion. An example of the latter would be my little "brother" in the Maldives who "forgot" he was thal and stopped transfusing. His Hb dropped to 3 and he ended up in the hospital for a couple weeks getting his Hb and platelets back up.

Genetically, majors and intermedias appear very similar as they normally both have two defective hemoglobin genes, but intermedias usually don't have the same severity of mutation as majors nor the same severity of symptoms. Because they both have two defective genes there is sometimes some confusion as to the classification, but the most commonly accepted definition has been that intermedias do not need transfusions as children and are able to maintain a hemoglobin level of at least 6 without transfusion.

Hi Sajid

I am sure you are going to pass all this soon. I know how confusing the situation is. The most important thing is to have high spirits as Lei said, it really makes a difference.

Take care
Manal

Sajid,
If your bilrubin level is much higher than what it used to be in past, then it can be a indication that speen is malfunctioning. Did you get your bilrubin level checked recently?

--Hallu

Hi Hallu,

Nope, Bilirubin test was not the test prescription. The only thing that the doctor assumed for a malfunctioning spleen was the low TLC, Platelets and no infections.

Thanks for the info, I'll keep it in mind

Take care, Peace!

Thanks Lei,

I really needed that

I know I will get over it in a day or two.

I wish the doctors would have a look at this site more often and learn from the more experienced persons from around the world than their text books.

As far as having low Hb is concerned; then I have a fair share of that experience too, like I said in the earlier post that even in these low HB (5-6) I don't feel much different, further more check out this post of mine and you'll see what I mean:

http://www.thalassemiapatientsandfriends.com/index.php?topic=71.msg276#msg276

Take care, Peace!
 

Ey Sajid I read your previous post! You're actually a  living miracle!  So keep the spirits high!  As I said in my earlier post you do inspire a lot of Thals including me! 

I also need more miracles now.  I just discoverd I have a faster bleeding time and a longer clotting time.  If I deliver my baby I may have problems hemmorrhaging according to the OB-gyne.  Now I am not only Thalassemic, I am also Hemmorrhagic!    Scary but I leave all things in the mercy of God. I am still up for the fight though! 

Dear Sajid,
     I wish I knew more about what your lab tests mean - all I can offer is support and love. I am thinking about you and hoping the doctors know what they are doing. Keep asking them questions, and hang in there. Love you, Jean   

Hi Lei,
     Welcome to the site.     I wish the best for you with your pregnancy. Take care, Jean

The difference between major and intermedia here is that an intermedia's Hb level will level out in the 6-7 range, but a major's Hb would just continue to drop without transfusion. An example of the latter would be my little "brother" in the Maldives who "forgot" he was thal and stopped transfusing. His Hb dropped to 3 and he ended up in the hospital for a couple weeks getting his Hb and platelets back up.

Genetically, majors and intermedias appear very similar as they normally both have two defective hemoglobin genes, but intermedias usually don't have the same severity of mutation as majors nor the same severity of symptoms. Because they both have two defective genes there is sometimes some confusion as to the classification, but the most commonly accepted definition has been that intermedias do not need transfusions as children and are able to maintain a hemoglobin level of at least 6 without transfusion.

Andy, I am just wondering, if I am an Intermedia, why do my Hb level drops to 5 sometimes?  Is that normal?  Or is it something I have to ask my doctor as well?

Hi Lei,
     Welcome to the site.     I wish the best for you with your pregnancy. Take care, Jean

Thanks Jean! 

Hi Lei,

If your Hb drops as low as 5 at times, it may be the result of some stress, especially physical stress like a cold or illness. You should try to avoid letting it get so low and transfuse before you reach that point. You can talk to your doctor about transfusing more frequently when needed if this becomes a regual issue.

You're walking a fine line with your Hb levels. However, as long as you normally are maintaining an Hb of 7-8 with only infrequent transfusions, you won't run the risk of becoming transfusion dependent. If your Hb begins to regularly drop to 5 you won't have any choice but to begin a regular transfusion program. Many intermedias who transfuse are still able to transfuse less frequently than majors but dependence does result, because the bone marrow activity will greatly reduce and the body may cease making red blood cells completely.

I was re-reading an early post of yours and wanted to address iron supplementation. It is virtually unheard of in intermedia and major to take iron because both transfusions and hyper-absorption of iron in the gut raise iron levels to dangerous levels and adding iron only adds to the problem. It is very important that you have regular serum ferritin tests to determine your range. The iron will not have a bad effect on your baby but it will continue to add to your own iron load. I think a good diet during your pregnancy might be better than taking iron. Folic acid should be continued after the birth as it helps build red blood cells.

Your doctors should be prepared for any event during the late stages of your pregnancy. Spleen size should be closely monitored along with Hb levels. If the spleen begins to rapidly enlarge, a c-section should be considered. Transfusion preparations should be made in case blood is needed during the birth. These are precautions to ensure both your health and the health of the baby, and in most cases, the most that is ever required is a transfusion at some point, but it is important to be prepared.

Sajid-

Your spleen has not swelled that badly, as Andy and Danielle have said - but is there another reason they might want to remove it? If your RBC count and platelets are low, and the spleen has swelled significantly since you've had to have more transx lately, it might be munching on all those goodies you need to feel healthy.  Mine was 19 cm when they took it.  Can you convince them to hold out? 

Hi Lei,

If your Hb drops as low as 5 at times, it may be the result of some stress, especially physical stress like a cold or illness. You should try to avoid letting it get so low and transfuse before you reach that point. You can talk to your doctor about transfusing more frequently when needed if this becomes a regual issue.

You're walking a fine line with your Hb levels. However, as long as you normally are maintaining an Hb of 7-8 with only infrequent transfusions, you won't run the risk of becoming transfusion dependent. If your Hb begins to regularly drop to 5 you won't have any choice but to begin a regular transfusion program. Many intermedias who transfuse are still able to transfuse less frequently than majors but dependence does result, because the bone marrow activity will greatly reduce and the body may cease making red blood cells completely.

I was re-reading an early post of yours and wanted to address iron supplementation. It is virtually unheard of in intermedia and major to take iron because both transfusions and hyper-absorption of iron in the gut raise iron levels to dangerous levels and adding iron only adds to the problem. It is very important that you have regular serum ferritin tests to determine your range. The iron will not have a bad effect on your baby but it will continue to add to your own iron load. I think a good diet during your pregnancy might be better than taking iron. Folic acid should be continued after the birth as it helps build red blood cells.

Your doctors should be prepared for any event during the late stages of your pregnancy. Spleen size should be closely monitored along with Hb levels. If the spleen begins to rapidly enlarge, a c-section should be considered. Transfusion preparations should be made in case blood is needed during the birth. These are precautions to ensure both your health and the health of the baby, and in most cases, the most that is ever required is a transfusion at some point, but it is important to be prepared.

Thanks Andy!  I'll be updating everyone after I see my doctors.  At least now I know what to ask them again. 

I'm really bothered with the Iron medication, up to now I was wondering why they gave me Iron supplements when my hematologist knew I have spleeenomegaly and I had high SF levels from their last test.  In fact, i'm more worried of its possible impact after I give birth. 

My OB-gyne decided for a C-section since the highest that my blood Hb reached is only 8 grams that was 2 weeks ago and last Saturday my Hb is only 7.2.  She said I could not go for normal labor at that level of blood since I also have a tendency to hemmorrhage (A few days ago they tested my blood's clotting and bleeding time and they discovered that I have a faster bleeding time and my clotting time is longer).  I'll be having blood transfusion this 30th of March, I'm not yet sure how many bags though since it will be confiremed on the 29th.  I am also to undergo another round of pre-natal testing and they are closely monitoring my sugar levels since I have gestational diabetes.