Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: Laura on June 11, 2010, 06:55:17 PM
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Hello!
As you know, I have a little problem with my pre-transfusional Hb levels and I'm trying to know a little bit more about which are the levels of the rest of you.
I'll use this poll when I talk to my doctor to ask her an "upgrade" of my level.
Thank you all for your participation.
Kind regards,
Laura.
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Laura,
It's really what the rule is more than which is our personal pretransfusional level and the rule is not to let your hb drop below 10.
Lena
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Mine is not under 10.0
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Unfortunatly, patients who depend on free treatment that is paid by the goverment don't transfuse until they reach below 6. that is why i find a lot of thals here that have facial deformity and alwyas wondered why they have this deformity though they are transfusing while other patients whom i met in abroad conferences don't have such deformity. .....That was the reason
If you want to maintain a level of 10 and above, you had to pay for private transfusion which is really so expensive.
As long as there is no awarenss of how donating blood is so important, this problem will not be solved :( :(
manal
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above 10.5 is my ideal Hb level that i want to maintain .... and always try to get transfusion bfore lleting hb down to 10 ... i think , 10.5-11 is right level ..
Umair
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Hello everybody!
I think I'll change my vote in the poll 'cause I've been talking to my doc and we've change it from 9 to 9,5.
I know is not a big change but it is a step in my way. At least I'm am inside the TIF's recommended levels (9,5 to 10,5 if I remember well)
Well, It's been a little bit hard to convince her but I wouldn't have been able to do it without you all. The fact is that everybody in Spain that I know with Thal are below 8 or below 9 and when I told her that people all over the world was telling me that I should be a little higher, she got surprised, she consulted the rest of Hematologists in the Hospital and they decided to change it in less than an hour!
I think I'll feel better with the change because in the latest years I've been noticing that I start feeling bad when I'm below 9,5/10.
I'll tell you in a few months.
Thanks again!
Laura.
PS: I keep the poll open just in case anyone is in the same situation as me.
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I think this will work out for the best Laura. You need the higher Hb to feel good and for your overall health.
Treatment strategies change with observation over time, so patients should always make sure their own doctors are keeping up with the changes.
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Good job convincing your doctor Laura,if they change the policy for everyone,not only it will help you but it will also help kids in your unit,its necessary to have hb as close to normal range as possible to grow properly.
Zaini.
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:clap Laura
How do u manage to have ur hb above 9.5. I have a big problem with keeping my hb high. I think I will nevever be able to have 10 :(
How often do u go for blood transfusions ahd how much blood do u receive.
Here in my country the doctors say u shuld not go less than 3 weeks if u receive 2 units, which in my case means to have hb btw 8-9. They say if u go to regularly you receive much iron and on the other hand you make your body used to much blood which is bad for your organism and yur spleen. I am too confused.
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Hello!
I take 2 bags every 3 weeks. Well, at least is what I should do. When my levels where at 10-11 (like 10 years ago, until I was 18), I regularly go for the transfusion every 3 weeks without problems. From the moment we changed the level to 9 (10 years ago, as I was saying), I've been trying to mantain this routine but it is not always possible and sometimes I have to get 3 bags or go for my transfusion in 2 weeks time instead of 3.
Well, the point is that in some chemists of Spain you can check the Hb levels. I usually go there when I feel bad, they check my levels and if they're under 9 (well, now under 9,5), I call my doctor and go to the hospital.
About the iron, yes, I agree and I supose everybody would do it. If you get more blood, you get more iron but we depend on blood to live and we can't avoid it. I think being at 8 and receiving 2 bags is the same as being at 10 and receiving 2 bags. I see the same amount of blood and iron but a different feeling of the body, don't you think?
In general, it is only once that you have to move forward your transfussion. You get your 2 bags at the level you should (9,5, 10 depending on the case) and then you can mantain more or less the level for months.
In my opinion and experience, once you are at your ideal level the amount of bags should be the same as now. I mean, If you take 2 bags every 3 weeks at 8 and it works mantaining your routine (you don't need extra bags) then, once you're at 10, the same routine should work; so I think you could manage it with an extra transfussion when you're at 10.
That's my personal theory about Hb levels. My doctor doesn't share it with me. She thinks the same as yours but, as she has agreed to move the level from 9 to 9.5 now we're waiting for my Hb to be at 9,5 to move forward the transfussion. As I was saying, It is supposed to be only once so there's no going to be a high increase of the iron.
I hope I meant well cause it is a difficult personal theory to explain. Such a difficult theory that I have never had the courage to tell my doctor about it.
Hope everything will be ok with you Rozitka and you'll manage to convince your doctor to move your level to 10.
Best regards,
Laura.
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I think being at 8 and receiving 2 bags is the same as being at 10 and receiving 2 bags. I see the same amount of blood and iron but a different feeling of the body, don't you think?
Speaking of iron , when you transfuse at 8 is much worse because you should take in consideration the iron that is absorbed from the gut, so the iron loaded comes from two sources here the gut and the blood itself.
I believe that transfusing on low Hb levels makes one get the disadvantages of non transfusing( high absorption of iron from gut + bone deformity _ low energy level + ......) in addition to the iron from the transfusion itself.
I hope everyone who is on transfusion would maintain a HB of 10
manal
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Thank you Laura and Manal for ur post.
It was very clearly explained. in the last months I try to do that - My hb wa 8.8 and I had 2 units of blood than I increased it above 10 and soon after that I went for another transfusion and got another 32 units of blood in order to keep it high. It was ok for the next 2 months and then it was 8.4. In my case it doesnt work very much. That is why I am considering to reduce the time inttervals btw transfusions- instead of 3 to go every 2 weeks and have 2 units.
Last month my hb before trasfusion was 9.2 . I received 3 units of blood. After 21 days my hb level was 8.8. Very disappointed.
Tnx
Take care !
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Rozitka
Last month my hb before trasfusion was 9.2 . I received 3 units of blood. After 21 days my hb level was 8.8. Very disappointed.
One of my friends here can have a duration of 2 months between transfusions and some other times she hardly finishes 3 weeks and needs another transfusion. The reason was how fresh is the blood. This is an important variable too
manal
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Hello everybody!
I think I'll change my vote in the poll 'cause I've been talking to my doc and we've change it from 9 to 9,5.
I know is not a big change but it is a step in my way. At least I'm am inside the TIF's recommended levels (9,5 to 10,5 if I remember well)
Well, It's been a little bit hard to convince her but I wouldn't have been able to do it without you all. The fact is that everybody in Spain that I know with Thal are below 8 or below 9 and when I told her that people all over the world was telling me that I should be a little higher, she got surprised, she consulted the rest of Hematologists in the Hospital and they decided to change it in less than an hour!
I think I'll feel better with the change because in the latest years I've been noticing that I start feeling bad when I'm below 9,5/10.
I'll tell you in a few months.
Thanks again!
Laura.
PS: I keep the poll open just in case anyone is in the same situation as me.
That is so very, very cool!!!!!!! Congratulations!!! Besos de Holanda, D
PS I had my transfusion last tuesday and my pre transfusional hgb was only 7.4. I won't have a tanking up earlier then 2 July. I only received one bag. Last time it was 7.7, so I fear it will be 7 at the time I'll have my next. I see my doctor 1 July so any ideas/suggestions/thoughts are more than welcome.
II a hgb of 10 gl/dl is here 6.2 mmol/l. I do not know any Dutch person who get a transfusion by that level. It is usually around 5.5mmol/l which is 8.85 gl/dl I might post here, or in a own thread (?) my whole problem later this week, OK?
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I talked with my doc. I am going back to montly transfusions with two bags. I have an extra transfusion next wednesday with one bag. On the way back I start thinking that two would be better and I just organised that. My pre transfusion hgb at Tuesday was 4.7mmol/ (7.5gl/dl) but i was dehydrated. Therefore it should be lower and even more lower 72hrs later. As for the monthly transfusions I told my doctor that I want to have my pretransfusion at 6mmol/l. As for me this is not common, but I am listen very well to you all. 6mmol/l is 9,66gl/dl. That is like your standards, right?
The above new treatment can have a bad outcome on my ferritin levels. But I have decided that quality of life is better than concentrate on those levels. I take 2x 750mg Exjade. If you have any thoughts on the transfusion scheme or new fe problem, please let me low.
Thank you very much,
Dore
ps we got tropical weather here. It is now already 25C and it is expect to be 37C today!! Very unusual for Dutchies! And there is that football match today ;)
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Hi Dore!
What did your doctor tell you about having your Hb higher? Did he agree?
Kisses,
Laura.
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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.
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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.
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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
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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.
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hi, :hithere
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 :smiley :pray
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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.
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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
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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).
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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.
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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.
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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.
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Glad to hear it Laura, :hugfriend keeping you hb high doesn't only save you the discomfort but also saves your organs too :) .
Zaini.
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That is so great Laura! I am very happy for you!!! :happydance 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)