I am excited to share that Ferripox is out on the market TODAY! This is a chelation drug that has been out in China for years and the cost from what I hear is less than half of Exjade. Granted is a different drug and may have different reactions to each individual, so make sure when speaking with your doctor that it is the best fit for you. Angelina is actually in the process of starting chelation and I called and requested if we can start her on Ferripox instead of continuing the plan of her taking Exjade. If indeed the price is true and the job is the same, I MIGHT still be under hard financing but be able to some what stay caught up some day! YEAH!!!
http://www.cooleysanemia.org/index.php?option=com_content&view=article&id=526%3Aoral-chelator-ferriprox-available-in-us-as-of-december-5&catid=1%3Alatest-news&Itemid=1
Monday, December 5, 2011
Friday, December 2, 2011
Dimitri's first blood Transfusion November 2010
Nurse broke his veins TWICE bad way to start a process ever since we use the IV team
Here comes the blood
Starting to turn pink
My now pink boy matches his then purple hair
Learning to Trust
My son Dimitri is now 13 years old, and just like any other 13 year old he has his friends and wants to hang out, meet girls and go to parties. When living with Thalassemia you still have to deal with the NORMS of life which is hard without any other stresses. Dimitri is the school clown, always the one making all the jokes and the one who most likely will get in trouble from the teacher because he was distracting the class. As a parent I have tried everything to guide him to change some things, but some times in life you just have to let your kids experience natural consequence which kill me. This morning I was thinking because after school he is going over to a friends house for a birthday party and it is a sleep over. So this morning I had to make sure he packed his blending cup for his medication, make sure he packed his Exjade (his medication), worry about if he will be careful of all the foods he shouldn't be eating and if he will be up all night and not wake up in the morning to take his medication.
THEN just to make my worries worse while I was at his school co-oping I past by the office and there he was in the office again. We just went through this last week. He got in trouble for disrupting others kids learning and being disrespectful to his class mates. I try to not pamper him or shelter him because of his disease even though it comes naturally to want to. I had the vice-principal come tell me what happened and I was up set and willing to discipline him by not allowing him to go to the sleep over. Then he went into tears about how the other kids said he did more than what truly happened. My heart began to break because I feel I have raised my kids to be honest with me and we have such a open relationship. That I didn't say anything and allowed him to continue his schedule. I have to learn to trust them that they will make the right decisions when it comes to their health and life. I want to protect them from every aspect but I have to let them learn and grow.
THEN just to make my worries worse while I was at his school co-oping I past by the office and there he was in the office again. We just went through this last week. He got in trouble for disrupting others kids learning and being disrespectful to his class mates. I try to not pamper him or shelter him because of his disease even though it comes naturally to want to. I had the vice-principal come tell me what happened and I was up set and willing to discipline him by not allowing him to go to the sleep over. Then he went into tears about how the other kids said he did more than what truly happened. My heart began to break because I feel I have raised my kids to be honest with me and we have such a open relationship. That I didn't say anything and allowed him to continue his schedule. I have to learn to trust them that they will make the right decisions when it comes to their health and life. I want to protect them from every aspect but I have to let them learn and grow.
Thursday, December 1, 2011
These are from September 16, 2010 when Dimitri just returned from a visit to Greece and right before his return he was in the hospital again for gall stones very common in people receiving blood on a regular base. Here he was submitted in for a kidney infection for un-known reasons and un-common for his age. The swelling is from a bad reaction to an antibiotic. During his stay he recieved a blood transfusion and after 3 days he was well enough to go home.
Hospital payments
So the other day I was going over my explaination of benefits from my insurance to point out tho the kids father that a payment of $150 doesn't cover any thing really. I noticed that I was being charged $2060 for a unit of blood in which I had never seen over $700. Naturally me being hot tempered I would want to yell at those I know how to contact, but I kept my cool, because in reality those are the people taking care of my children not creating the bills. They kindly directed me to the correct people over at the blood bank; whom charge on their own and separate from the hospital.
As I explained to the lady what was going on she was in return explaining that they miss charged in the past and are making up for those uncharges. When I asked to to show me where those mistakes were made, to show me on the months they are making up for she changed her story to no those are our new charges. The lies now blew off my calm but I still keep my Greek temper under cool. I started to laugh and flat out said "WOW you are guys are really ripping me off! If you are charging over $2,000 for a unit of blood and my kids need mulitple ever month I will not be able to support any one to eat just to keep them alive" I demanded that I sit face to face with their department and go over every little detail of their charges and I requested the manager since I could hear her tone nervious.
The manager got on the phone I explained that there is no way a unit of blood costs over $2,000 and that I want to come in and go over all of the charges and that it is impossible in order to keep my children alive to be charged that much. He kept insisting that I do not go in and he will look at my account. He later called me and said that they found a error for the amount of $1,200 and they will correct it. In that time I was waiting for his call I went through the bills and noticed that wasn't the first time they made an "ERROR" and I mentioned that to him. He said he would do a history check on our account. I still plan on going to his office on our next visit to the hospital and my word of advice for those dealing with the hospital on a regular basis always go over your bills. Get familiar with the average charges don't be afraid to ask. It is so easy to over look things that are common in our lives, don't ever get comfortable with hospital bills.
As I explained to the lady what was going on she was in return explaining that they miss charged in the past and are making up for those uncharges. When I asked to to show me where those mistakes were made, to show me on the months they are making up for she changed her story to no those are our new charges. The lies now blew off my calm but I still keep my Greek temper under cool. I started to laugh and flat out said "WOW you are guys are really ripping me off! If you are charging over $2,000 for a unit of blood and my kids need mulitple ever month I will not be able to support any one to eat just to keep them alive" I demanded that I sit face to face with their department and go over every little detail of their charges and I requested the manager since I could hear her tone nervious.
The manager got on the phone I explained that there is no way a unit of blood costs over $2,000 and that I want to come in and go over all of the charges and that it is impossible in order to keep my children alive to be charged that much. He kept insisting that I do not go in and he will look at my account. He later called me and said that they found a error for the amount of $1,200 and they will correct it. In that time I was waiting for his call I went through the bills and noticed that wasn't the first time they made an "ERROR" and I mentioned that to him. He said he would do a history check on our account. I still plan on going to his office on our next visit to the hospital and my word of advice for those dealing with the hospital on a regular basis always go over your bills. Get familiar with the average charges don't be afraid to ask. It is so easy to over look things that are common in our lives, don't ever get comfortable with hospital bills.
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