Transfusion & Haematologist visit

[caraiti]

Today I had 3 units of leukocyte depleted.
My Haemoglobin had dropped to 88. Not good but look at the positive that it wasn't too bad after 8 weeks. That is two months My Dr is hoping that the Hydrea is helping me prolong.
The other positive was that my ferritin has come down to 3,800. Still high but last time it was 4,000.
The good news is that it is coming down and not staying up I had to have a little yeah!
My Dr had given me clearance to try IP6 and I take my first tablet tonight.
Dr Blacklock got me to sign the forms she is sending in to the government which is asking them to subsidized the chelation tablet exjade. She was informing me that Thalassaemia is still classed as rare in New Zealand because there is only 9 reported cases of Transfusion dependent Thalassaemics. In other words the government might not think it important enough to subsidized.
This is her fourth attempt. I have suggested that maybe we remind the government the long term cost of  extra treatment from failed organs. This is true because I now have diabetes, osteophorosis and tachycardia from iron overload in my tissues and organs.
Hopefully that might help them lean favourably.
Over all I am happy as I always are when I see Dr Blacklock. She is an important person in my life and after discussing my issues or thoughts I can walk away knowing that she has my best interests at heart.
I can never say this enough, but as a patient you need to have a relationship with your health carers.
It must be mutual to the point where both can express ideas and agree to the management of issues.
I will always give ideas and try new things but if Dr Blacklock says otherwise, then I don't.
I admit that I don't always stick to this when dealing with other health professionals. Mainly because if they cant be bothered talking to me as a person who knows about her clinical management then I will switch off. The other bone of contention I have is that they don't always see that all my issues are linked and that you cant just treat one thing without it affecting something else. I expect all my specialists to communicate and work together and that all must go through Dr Blacklock. This probably sounds strange to you but as Dr Blacklock and the haematology nurses see me more, they are updated with what is going on with or to me
I have yacked your eyes off no doubt and I really need to get my desferal going.
I am going away for the weekend so I will log in on Monday
Have a good weekend everybody
By the way Jolly and thalatrait my nurses accessed this site with me at the hospital today and were curious about which country you are living in. You don't have to answer if you dont want to.

[mdmjane]

How frequently you monitor your ferritin level? What is it bad if it is too high? Is there any sign and symptom if your ferritin level is high?

[caraiti]

My ferritin levels are taken each time I go for crossmatch and full blood counts which are taken two days before I go in for a blood transfusion. That is normally once every 6 weeks.
You have heard of anaemic people? they don't have enough iron and tend to be tired and lethargic.
I am the opposite where I feel the same way but because I have too much iron, my body cant get rid of the excess iron. This iron then gets stored in my organs and cause problems like organ damage or failure.
Classic example is that my iron got into my pancreas and caused some damage and now my pancreas cant produce enough insulin and now I am a diabetic who now has to take insulin.
Healthy adults have iron around 300.
I hope that I am making this simple enough for you to understand.
I am grateful for your questions and interest.
Please keep the questions flowing.
Kind regards
C Araiti

[caraiti]

Hi guys
Today has been a very eventful day.

1. I had a visit at school from a lady who works for the New Zealand Blood Foundation. She came to inform me that I will be interviewed about living with Thalassaemia for tv. This is a campaign to try and get more New Zealanders, especialy the Polynesians to donate blood. I think it will go on t.v that day in conjunction with World Blood Day.

2. Saw my specialist after school today and we nutted out another special authority form in regards to changing the desferal back to the old form. I have been having major problems with my desferal as Pharmac changed who made it and the stability only lasts less than 12 hours so while my IV is running, you can see it chrystalizing.
Was told by Pharmac not to submit special authority for exjade as they are having a committee meeting middle of this month about the possibillity of funding.
So we decided to just keep pushing about the desferal being remade by old company.
Have to wait and see what happens.


3. The good news however is that my ferritin is at 3256 which is great because last month it was 3586 I think. So the pain is worth it. I guess.
Hopefully they will change back to the old desferal and maybe even fund an oral chelator.
I'm trying to keep my chin up but sometimes I just want to scream from poor fustration. Politics are the bane of my life at the moment.

Still excited about the ferritin though. Hehe  My positive to help me  get through

[amanda]

That's the good characteristic you have. You still manage to chin up and never give up. You think positive and that makes you survive. For those people who knows your condition surely feel something running on their back. I admit I'm having some goosebumps right now. Because i truly admire your fighting ability to fight this Thalassemia Condition. And how was your ferritin now?

[caraiti]

Good question. Had my transfusion on Monday gone and forgot to ask.
 Was told that it is getting better. I must ask next transfusion.