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Update from Cherieann

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cherieann:
Hi everyone I bet you thought I had forgotten you all...
You are not that lucky  hahaha.
It has been full on with the new boss and his changes. I'm enjoying the new and old ways and loving being back with the students, but its the new hours that I am having problems with. I start at 8am and morning internal is not until 11:20 so its abit scary for me at times keeping my diabetes under control until then, then lunch at 12:45.
I have had a check up with my haematologist who is not happy as my ferritin must be hitting 5000. To be honest I didn't want to look as I was scared. Her reaction was enough to scare me. We filled out another application form asking Pharmac to subsidise the cost of exjade. This is our 4th application so I am hoping that they will accept this one. My fingers are crossed. Might have to go back to 24 hours. This is a real blow for me. I have decided to keep to the 5 days a week but have 2 days a week that I have 24hours. This is my way of easing my body back into it. For some reason my haematologist has noticed over the years that I am reacting to the desferal.
None of her other patients are but we thought that maybe I have been on it the longest as well as the fact that I'm her only Thalassaemia patient so far. My port will be celebrating its 10th birthday this year but it seems to have become sensitive to the extreme that I will only have the needle in it for as long as the transfusion and then its out. The nurses say that it is probably starting to wriggle and thats the scratching pain I can feel. My haematologist has suggested that we look into putting in a new one but I'm not keen at the moment as I want it to last 10 years. She thinks I'm mad but she loves me. hehehe.
My diabetes has risen as well and so we are starting to adjust my insulin but now its getting scay as I have had 2 hypos in the last 2 days and nearly had another one today due to the long morning. My diabetes nurse wants me to inform the principal that the time between 8am to 11:20 Is too long for a diabetic who needs regular snacks. I can understand her concern but I'm at a lost in how I bring this subject up and I really don't want to be treated any different to my peers but I know that if the hypos continue I will need to step up and talk to my boss.
Over the holidays I had a nerve conduction study and this is the comment from that study...

COMMENT

A reproduible but low amplitude sensory nerve action potential could be recorded from the right sural nerve.
The median sensory nerve action potential was of slightly low ampitude but a normal ulnar SNAP was present.

For technical reasons, no compound muscle action potential could be recorded from EDB following stimulation of the peroneal nerve at the ankle. However, a normal appearing response was present with stimulation at the fibula head, though the response was of low amplitude.
Motor conduction in the tibial and the median nerves was normal.

There was no definite denervation of tibialis anterior or abductor hallucis.

INTERPRETATION

Nerve conduction studies confirm that there is a mild axonal sensory peripheral neuropathy.
The cause for this cannot be determined on the basis of the nerve conduction studies.

Sort gives me an idea of why I have been getting numbing sensations of parts of my body I guess.
Better than my GP telling me that I might have a tumour. hahaha

Hope you are all well
Catch up with you all later

Sharmin:
Dear Cherieann,

You are doing such a wonderful job for those children, your commitment to them is very admirable.  I hope that you are taking care of yourself amidst this busy schedule.  I think that you should try 24 hour IV desferal before your iron situation gets any worse.  Are you using combination chelation therapy?  Also, please be sure that you are taking antioxidants to protect yourself from iron damage.  Please take IP6, L-carnitine and alpha lopeic acid for your heart, vitamin E as well as calcium/magnesium and zinc.  These supplements will certainly protect you. 

Sharmin

Zaini:
Hey Cherianne  :hugfriend

Thanks for updating us,we are lucky to have you here,i am glad that you are enjoying your work environment,but you'll have to talk with your boss about your diabetes,please don't take it lightly,and i know you can do it,i remember i read some where that even thals should be taking light snacks every few hours to avoid dropping sugar levels in blood,with that you also have diabetes,so please take care of your self.

As for ferritin,i am sorry if i missed it,but L1 isn't available where you live?,combination therapy can do wonders,or if not then IV desferal is the answer.

Take good care of your self and keep posting  :hugfriend

Zaini.

cherieann:
Thanks Sharmin  and Zaini :hugfriend
I am the lucky one to have you special people in my life.
Believe me that Im not taking any of this lightly as I believe I can do it but I also know when to ask or get help. (Boss included)
I am pretty mind set that 24hr will be coming back into my life and well I will cope as I always do. Its a good talking point for the students  hahaha. I would need to bring my show and tell because I will be it. :wink
Exjade is not subsidised so if I want it, I will need to pay for it and my specialist has said no to even thinking about it.
At the moment I take
Loraclear & Alanase nasal spray - hay fever and sinus
Sotalol 80mg morn & 40mg nocte - tachycardia
Fluconazole 50mg daily - keep thrush at bay
Cal D Forte 1.25mg  monthly - Osteoporosis
Calci tab 500mg morn & nocte daily -osteoporosis
Folic acid 5mg daily - 4got
Ascorbic Acid 100mg nocte when on desferal - Haemosiderosis
Hydrea 500mg daily - less transfusions (crossing fingers and toes)
Zincaps 50mg twice weekly - your comments
Nitrofurantoin 50mg nocte daily - stop recurrent UTI
IP6 taken nocte when on desferal - thanks to your comments
Chlorella 1 tab when chelating - nature's detoxifier and flush
Novorapid 6 units morn, 8 units lunch 10 units Dinner
Glargine 16 units morn 16 units nocte. Insulin still being adjusted. Eating more hehe
Desferoximne 20grams weekly (8 vials daily x 5)

Zaini:
And Ferriprox? Is it available? Have you given it a try?

Zaini.

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