1st Transfusion in 20yrs.

Hello Everyone,

Over the last month I've been really tired and cranky.  I was reading a post about how everyone feels before transfusions, so I thought back to when I was little and remembered this is how I use to feel.  I went to the hematologist and my Hb was 6.9, Its usually 8-9.  The Dr. orders a transfusion for today and I get a tranfusion for the 1st time in 20yrs.  not sure how I feel about it yet.  I feel better and I'm glad, but why did my Hb drop all of a sudden?  I work out, I eat alot and I not very stressed usually. 

The Dr. want to check my spleen next time.  I fell its gotten bigger.  It works well, maybe a little to well now.    .

Anyone experience this?

Bobby

Bobby,

If you haven't been sick, then it is most likely your spleen that caused the drop in Hb. The low Hb will also cause the extramedullary hematopoiesis to grow. Are you using anything to try to raise your Hb level, like wheatgrass or resveratrol?

Hello Bobby,

From:- http://www.indianpediatrics.net/dec-99/99-dec-4.htm

Patients with thalassemia intermedia may need occasional blood transfusion because the hemoglobin can drop temporarily, sometimes below 7g/dl, especially in relation to infection. Hyper-splenism can lead to a persisting fall in hemoglobin level mimicking thalassemia major.

Did you have any infection recently? Also may be your spleen is acting up now. Another option for maintaining higher Hb levels is Hydroxyurea which have shown increase in HB levels for some thals. You can search for hydroxyurea in the search on this site and will be able to find results related to it's use

I think transfusion is more to do with the quality of life versus survival for thalassemia intermedia. Jean(one of the members on this site) has earlier mentioned in her post how she used to feel fatigued when she was not taking transfusion but felt quite better after she started transfusion.
From:- http://www.thalassemia.org/sections.php?sec=1&tab=6#1

Generally speaking, patients with thalassemia intermedia need blood transfusions to improve their quality of life, but not in order to survive.

Hi Andy, Narendra,

I've only had a sinus infection in the last few months.  I'm not taking any medicines, just a Multi-Vitamin/without Iron daily.  I'm planning on trying resveratrol soon and I've researched Hydroxyurea many times. Until now I haven't thought about requesting it from my Dr.  I'll be sure to bring it up next time though.

I haven't been able to pick anything in particular from my daily activities that would explain the drop in Hb. I had been excercising regularly and I have a great appetite. I eat almost 3000 to 4000 calories a day to maintain my weight.  When my Hb dropped so did my will to excercise and eat.  I lost 13lbs in a month. 

My next Dr's visit will probably include an MRI and Ultra sound to check my spleen size and extramedullary hematopoiesis. I don't want to lose my spleen, but if its causing my Hb to drop it may be necessary.

Thanks for your input.  The information and support you all provide is priceless.

Hi Bobby,

I hope you are doing well. This was happening to Olivia  maybe not for the same reasons but her hb was dropping for no obvious reason and we too had to give her her first tx last month. She is four yrs old and before that she was on hydroxyurea for 2 years and her hb was 8-8.6, however her dr wondered if the hydroxyurea was doing anything at all. We have a follow up on 6/30 I will let you all know what happens....Please keep us updated on your health too. Also we are going to try the carao syrup....I will keep you posted on the results. ( praying they are good)

KATH,
LAURYNS BEEN ON CAROA FOR 4 MONTHS. HER HGB WAS 10.6 AFTER 5 WEEKS FROM HER LAST TX!!! IT WORKS, BUT IT SMELLS DISSSSSSSSGUSTTTINNG.

I'm so glad to hear that it works Christine.

*imagines how Lauryn makes faces at the smell* 

christine,
how on earth did you get your daughter to drink it.  i have a couple of bottles and my son runs for the hills when he sees it or should i say smells it.
vic

I am so glad that it is working for Lauryn.  That is a great hg 5 weeks post tx. 

all the best for little Lauryn,
Sharmin

hi vic and sajid and sharmin!!!

vic-we just mix 1/2 tsp in her milk bottles once daily usually in the morning! she loves it!she thinks its chocolate milk and she asks for more of her "botty"!!! we really are blessed. and i have to retract my last post on her hgb. it was actually 10.9!!!!!! 5 weeks post tx. yes, we truly believe it is working. oh and get this... shes had 12 tx's so far and her ferritin has been mid 600's for 3-4 months with no increase so far,thank god!!! her drs are pleasantly suprised. they say this is wonderful and unusual.

i remember fretting 2 yrs ago when i first posted on here and now looking back, i am so grateful for the everyday blessings, and to be honest, i forget lauryn has thalassemia until her tx rolls around every 5-6 weeks.

love you guys and god bless!! hope all is well with u and your families!!!!

I am so happy to hear that Christine! 
I am so happy for little Lauryn - she will do very well!!
I remember thinking when my son was 5 years old - "if this is thalassemia, it's not so bad".
because we also forgot he had it in between his transfusions.  They are such little miracles 

All the best to your family    I look forward to more of your posts when we return from California.

Sharmin

It's wonderful that she's doing so well.  I hope she keeps it up.