Discussion Forums > Thalassemia Major
In Need Of Your Advise Andy
Andy Battaglia:
Hi Emby,
The liquid Ferriprox does not taste good even though it is cherry flavored, so that can be a factor in willingness to comply. It is equally effective and has a lower rate of stomach discomfort but with kids, the taste can affect compliance, so as long as they have a problem with it and the pills don't bother their stomach, I agree with that it's best to use the tabs for now. Believe me, Apo Pharma is well aware of the taste issue and it was even compared to taking a medicine like NyQuil 3 times a day every day, so I can understand why it may not be a pleasant experience.
As far as transfusing 5 units at once, it seems like a large volume that could cause some stress to the heart (it's a high volume of fluid to add in one sitting), but I would prefer if some of our veteran thals can advise us on this. I've never heard any thal tell me that they got more than 3 units at one sitting. Usually, if there is a major correction needed in Hb, it will be done with weekly transfusions until the desired level is reached. Can we get some input from experienced members?
I believe the idea with the spleen is that if you can keep the Hb higher, this shuts off most production of the inferior thal red blood cells in the body, so they are no longer being filtered out by the spleen, causing enlargement, but the transfused cells are also removed by the spleen, but the hope is that there will be a net benefit and a reduction in spleen size. One important note, is that a slightly enlarged spleen isn't really any danger.
Emby:
Hi Andy,
Our boys are both having upto 4 units of blood. On average they would need 1000mls every four weeks. I am thinking that this is the most they could have regularly and less stressful for the heart. However on occasions they may require the 5th unit but not the full amount and it would be in one sitting. they usually run the transfusion at 200mls per hour. Do you think this is safe?
Looking forward to hearing about what you have learnt at the conferance. I believe that with every sickness God has made a cure for it. Untill He Wills to reveal it we have a duty to care for our bodies inside and out. Like you say, care for thalasseamia has come a long way and God willing it would only get better.
Take care, Big Hug
Emby
Lena:
Andy and Emby,
thank you so much for your kind words. Sorry my reply comes late-I was away from Athens and just returned.
I would like to comment on the transfusion frequency.
The only time I got 3 bags of blood was 30 years ago when I was in Cardiff, Wales, for some tests and that was when I first got my pump there from the University Hospital of Wales in Cardiff. They had me transfused overnight then with 3 bags of blood and that took so many hours. Is it a habit in England to be transfused that way? I do not know.
Since then I never repeated that and to tell you the truth, as I see it now, it was a bit dangerous as they transfused me with hb 7 (due to some tests they let me without transfusion for a long period) and heart would have suffered a little receiving 3 blood bags at one stroke.
It is many years now that I have adopted the "one-bloodbag-every-15-days" scheme. I think this is much too good for the heart and everything, as you manage to keep your hb at approximately the same level and always get fresh blood. I even disagree with the two-bloodbags-every-20- days scheme, which is widely done here in Greece, but only due to thals not wanting to be to the hospital so often. For me, my health comes first and do what I consider best. That's why I adopted this scheme, although I have to travel for one hour to get to the hospital which is outside Athens-in another city (Korinthos).
There is one other thing I want to stress out. Every blood bag I get is around 300-400grams and the transfusion takes almost 3 hours to be completed.
Emby, you are talking about 5 bags amounting to 250mls(how many grams is this?), or is it 250mls each one of them? Because this makes a lot of difference. If it is 5X250mls, I will agree with Andy it is a very large volume of blood for one sitting. Why have the doctors adopted that scheme?
Lena.
Narendra:
Emby,
Refer to the link : http://www.thalassemia.com/documents/thalhandbook2008.final.pdf
I have copied over the transfusion section below for ease. This is published by Children's Hospital Oakland
If possible, print it out and keep the complete handbook with you for reference. It has complete details for care of thalssemics.
--- Quote ---4.3.3 Target hemoglobin and frequency of transfusions
The amount of blood received on transfusion day is determined by pre-transfusion hemoglobin levels. The target is to maintain the pre-transfusion hemoglobin level between 9 and 10 g/dL. Attempts to maintain pretransfusion hemoglobin at above 10 g/dL increase transfusion requirements and the rate of iron loading. Transfusions should be given in an outpatient setting with an experienced transfusion team that uses proper safety precautions (patient/blood identification bracelets). Blood should be transfused at 5 mL/kg per hour, and the post-transfusion hemoglobin should not exceed 14 g/dL.
In patients with severe anemia (hemoglobin less than 5 g/dL) or cardiac compromise, the rate of transfusion should be reduced to 2 mL/kg per hour to avoid fluid overload. Diuretics such as furosemide (1 to 2 mg/kg) may be necessary for some patients. If cardiac insufficiency is present, higher pre-transfusion hemoglobin levels (10 to 12 g/dL) should be maintained with smaller volume transfusions given every one to two weeks.
The patient’s weight and pre-transfusion hemoglobin and the volume of transfusion should be recorded at each visit. These values should be periodically reviewed to assess the volume of blood required to maintain the desired pre-transfusion hemoglobin level. Annual blood transfusion requirement in patients without hypersplenism is usually below 200 mL packed red blood cells/kg per year.
--- End quote ---
Emby:
Hi Lena....thanks Narendra,
In one of my post I wrote about our older sons Hb dropping to 8.0 and maintaining at that sort of level pre transfusion. We were told by his Dr. that because of growth spurts he would probably need to come for transfusion a week early for a few months and then go back to once a month after his pre transfusion Hb maintains at 9.5. He doesn't want to come to the hospital so often so the Dr. has raised his desired Hb to 15 after transfusion. This works out with him receiving about 200mls more each time. We do not want him to stay with this formula all the time. We would like to look at what levels his Hb stays at pre transfusion and then God Willing, come back Hb 14 formula.
Both our boys need about 900/1000mls of blood every 4 weeks and they have it in one sitting for a period of 5-6 hours.
Emby
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