Hb Levels

Hi Dore!
What did your doctor tell you about having your Hb higher? Did he agree?

Kisses,

Laura.

I am sorry it took me so long, Laura. He did agree but warned me for the higher ferritin levels. However, while looking at my lab work I know already I will not make it to forever 9.6gl/dl levels. I must admit that I am pretty sad about that but I am not giving up my wish of having 2 bags every four weeks. That is something that is more important for me.  Only time can show us what is going to happen.

Hope everything is Ok Dore.

I'm going on holidays in a few days time. I'll write again when I'm back.

Kisses,

Laura.

A bit late, but have a wonderful few days off. Where have you been?
If I find some time I will send you an email. I'll let you know of things go. I do feel pretty good but...
Dore

Hei Dore!

I'm still in Barcelona. I like your shakira quote. Je je.

I'm going to her concert in Barcelona in November. By the way, by that time i'll have my own flat so you can come if you want to stay in Catalonia (region without bullfighting at last!) for some days,

Have a nice summer!!!

I'll be waiting for your e-mail.

Yours,

Laura.

 hi, 
my daughter's age is 7  and a Thal Major was prescribed Asunra 800 gms as per her body weight that is 20 kgs. As her previous reports showed her ferritin levels are quite high that is 5,500 And as I had a word with you before so accordingly have got her S. creatinine, urine routine and S. ferritin tests  SGOT and SGPT  done at DR LAL Path Lab and the test results were as follows: -

CREATNINE SERUM                                  0.29   mg/dL
SGOT                                                           55.00   U/L
SGPT                                                            53.00   U/L
FERRITIN                                                     4792.50   ng/mL
Protein total random urine                     5.30        mg/dL

So I thought that I should consult that is everything going fine, I know results cant be very good but yes I do need your opinion as if any changes are needed or any thing that is to be looked upon .



would eagerly wait for ur replies  

Hi Pleasance,

I'm glad to see some progress with ferritin level, even if only a small decrease. The SGPT and SGOT are both in a good range, so no worries there. The serum creatinine seems quite low, which makes me wonder about the accuracy of the test. But it's not high, so that's not a concern either. The urine protein level is also normal.

My reaction is you are going in the right direction and your child is tolerating Asunra well. She is on the right dose, so let time and Asunra do their work and see how things look in a few months. Regular chelation compliance is the key. She will do well as long as chelation is daily. Once her ferritin comes down to a safer range, the Asunra dose may be revised, but for now, keep things as is.

thanks andy for ur continous suggestions as i really wait for them and also i always have that feeling that yes i am not alone but u all are there for me if i need your opinion any time .thaks a ton ..........................and as far as serum creatnine is concerned do u want me to repeat the test and send u the report .......................i can do that for u

Pleasance,

These tests will be routinely done, so please do continue to post the results. Serum creatinine and liver function tests are required on a regular basis when using Exjade or any of the chelators that contain the same drug (Deferasirox).

By the way, your child is on a high dose of Asunra, so we should expect to see substantial progress on the ferritin level over the next six months. (I'm assuming the dose is 800 mg, not grams).

Hei Dore!

I'm still in Barcelona. I like your shakira quote. Je je.

I'm going to her concert in Barcelona in November. By the way, by that time i'll have my own flat so you can come if you want to stay in Catalonia (region without bullfighting at last!) for some days,

Have a nice summer!!!

I'll be waiting for your e-mail.

Yours,

Laura.

No worries, I will delete this message when i finally did what I said. I will send your email monday night. isn't the concert sold out yet? Last time i went to concerts in Netherlands (1) and Germany (2). My wish is to attend one in Spain to feel it like Espagne......
Tomorrow, or later today, I will do blood work. Based on that I will make a decision. I have still no idea how many bags are planned for friday. i am still confused on what results I had to stop Exjade.

Hi!

Pleasance: I'm glad everything is going in a positive way. Hope it will continue this way.

Dore: The tickets are not sold out so if you want to come just tell me and we'll manage to find the way to catch them. About Exjade... I've been a little too out of the forum. What happened? Did you stop it?

Lots of kisses from the beach of Torrevieja (Alicante, Spain).

Yours,

Laura.

Hello!

I talked to my doctor around 2 months ago and things have changed.

I currently have 3 bags every 3 weeks and my hb level before transfusion is between 9 and 9.5.

At the beggining we thought it was going to be the same as having 2 bags for 2 weeks but it really isn't.

When I had 2 bags I didn't feel good most of the time and I was always looking forward for the next transfusion. Nowadays, I feel very good at least 15 days and the rest of the period I'm just ok. In fact, last week I had to have my transfusion on Monday but I was ok so I phoned the hospital and I finally had the transfusion on Thursday so between on transfusion and the other there were 3 weeks and a half!!!
I couldn't believe that after having been feeling bad for around 10 years I was calling to say that I didn't need a transfusion.


I just wanted to thank you all because everything started changing because of your posts in this forum. You really helped me a lot.

Thanks for everything.

Kisses,

Laura.

Glad to hear it Laura, keeping you hb high doesn't only save you the discomfort but also saves your organs too .

Zaini.

That is so great Laura! I am very happy for you!!!      I am beyond the moon for you. I hope your doctor notice this also and I wish more people are able to experience this feeling!!!

It is almost a year since I am going in every 4 weeks for 2 bags. Due a vacation I had to put my tx a few days earlier. Although Despite that my hgb dropped a bit during those last pre-transfusion checks, but it stays witin appreciated values. I like the fact I have more time between transfusions and my energy level stays longer "normal". However I must work on that part as I tend to worn myself out within the first two or three weeks/ That is a little difficult as I feel so great. Especially during the four days after tanking up. It like I am flying. (even my sight seems to improve)