Update from 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

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

Hey Cherianne  

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  

Zaini.

Thanks Sharmin  and Zaini
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.
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)

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

Zaini.

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

What is Fluconazole?
What is Zincaps? (zinc I gues..)
What is Nitrofurantoin 50mg nocte daily - stop recurrent UTI
What is Chlorella?


All my fingers and toes are crossed for you!!! I really hope that it is working for you!
I do understand that you are a teacher. What do you teach and how old are your students? My mother is a teacher Dutch. So I know how long it takes to prepare everything and correct the exams. She teach at highschool (gymnasium), so they are between 12yr and 18yr.

I can not believe that Exjade is not subsidised. I hope they soon understand that they must subsidised this!!!!!!! You can not take it without subsidised (in my case).

,i remember i read some where that even thals should be taking light snacks every few hours to avoid dropping sugar levels in blood,

What is the basis of that saying?

Hi Dore,

What is the basis of that saying?

Please check this thread,

http://www.thalassemiapatientsandfriends.com/index.php?topic=2182.0

Hey guys,

A few doctors have informed us that individuals with thalassemia (major, intermedia and minor) should eat regularly.  This means that they should not go longer than 2 - 3 hours between meals.  This is probably a good idea for everyone.  This sustains blood sugars levels and energy levels.  It is also a good idea to stay well hydrated, as thals are prone low blood pressure especially just before transfusions.  Eating and drinking regularly also helps avoid headaches and irritability. 

Most thals majors are aware that it helps to be well hydrated the night before a transfusion because it helps the nurses get the IV on quicker.  It also helps to show up with an extra layer of clothing, although you may feel very warm - it puffs up those veins and makes the pokes easier:)

Sharmin

Zaini.

shuh.... its realy nice to hear from you cheriean ...... WElcome back after a long time...

Umair

Zaini,  Ferripox is nt an option given as Desferal seems to be the most noted here.
 Peartree Fluconazole is a tablet for thrush. Instead of treating recurrent thrush when it occurs, I take the tab daily and it stops the thrush. This is a side effect from desferal for me along with Urinary Tract Infections so I take Nitrofurantoin to keep it at bay.
Zincaps is zinc tabs
Chlorella is tablets I found in a health shop. I find that my urine is darker when I take them and I don't feel so slugish.

I am a Teacher Aide who works with Special Needs students aged between 11 to 13 year olds.
Along with the teacher I help plan subjects but I also deal with teaching them basic self care like periods for the girls.

Hello Umair - Its nice to be back with you all. I'm trying not to stay away too long but sometimes I tend to overdo things and leave no time for myself. Its good to be back with you all and this will be the first time that I have opened so much about what I am going through. (well some of it). I feel pretty vulnerable at the moment as I feel this shouldn't have happened and in a way I am scared but one day at a time I guess.
Thank you so much Zaini, Sharmin, Peartree and Umair, Your comments really boost my ego and make me realise that I'm not alone after all.

hi Cheriean :
keeping your self busy is the best strategy to cope wiht thal , it keep's you a little far to the worries ... keep it up ,... MAy God bless you with a long life , soo you teach more kidz , and keep's you busy with them so i can feel lucky ... .....

keep in-touch
Best Regards
Take Care
Umair

Cherianne,

i am so impressed,here we are worrying about our kids,and trying to make their lives better,but what you are doing is noble,you are trying to make other's kids lives better,taking care of other's kids,and kids who have special needs,with whom even parents sometimes feel helpless,and who are  less able to take care of themselves,teaching them must be hard.I salute you  .

HI Cherianne

Nice to have you back.  I also am a teacher. 

Quote:
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.

Do you mean you  (the students and you as well) do not have a break in between?  Well, students as well as teachers need a break in between to be able to optimise assimilation and understanding.  If you give the students a small break of 10 mins (to go to toilet, eat and drink something) you will be able to eat something also (unless it is strictly prohibited).  In my country, we work from 8am to 10 am, break up until 10.10 and then continue until 11.20 am, recess time until 11.50 , work until 1.15, break of 10 mins again and continue until 2.30.

Take care of yourself, try to talk to your boss and explain the situation .

We have been told that a student can concentrate well for about 30 mins maximum not more.And they should be at ease ( not hungry nor anything else ) to be able to assimilate.


Quote:
Might have to go back to 24 hours.

How do you manage that at work?

Take care.  Try to reduce your ferritin.  Wish you the best.

Jade

Umair, Jade & Zaini
Thank you, I feel pretty humble and unworthy with all your comments.
I don't feel that I am any more special than any of you.
I have always checked in during my absences but never logged in or responded as I wasn't feeling too wonderful.

Umair I have always said I will live a long and happy life just so I can annoy my husband hehe.
Its pretty full on at work with the new changes but I love the challenges each day brings. You are right that the more I am occupied, the less time I have to fret.

Zaini thanks for the compliment but I do it for the same reason you do it for your child.
We want the best for our children and to know that someone cares for our children.
A mother's love is endless when it comes to her own.
I do it because they are my children, they are our future. It also helps the parents to know we will care for their treasure while the child is with us. It certainly takes that worry from them.

Jade Your times are the same as mine. We start at 8am in meetings in class from  840 to 1120 then class 1140 to 1245 in class from 140pm to 310pm. school finish then its meetings til 400pm if lucky otherwise 500pm.
Lots of ongoing professional development.
Each class can allow students to go toilet thats not a problem. In our classroom we encourage our students to drink water when they like as we have a kitchen and they don't need to go outside but thats our class. Overall the principal prefers that we do not eat in our classrooms and to stick to the timetable.
Hes pretty understanding to our student's special needs and I know he will be okay. I just need to get courage to tell him. haha I annoy him alot for things our students need but not myself.
I will be going back to 24 hour. I'll cope. I'm pretty open with my students. I just wear my pump and keep away from the violent students in the school. hahaha.
Instead of my yearly talk where I explain about my thalassaemia and transfusions, I can be the show and tell.
They will certainly enjoy that.

KIAORA!!!!

Wow your work schedule sounds alittle like mine, hectic!!!! I havent been on much these days either.
Cherianne its sad the NZ government havent authorised for subsidy for Exjade!!! Wow!!!

Exjade here in australia is subsidised by the government here..You can get an authority scriipt from the doctors and get it from the pharmacy... when I was on it, I ordered it from my work. hehehehe
Some of the perks for working in pharmacy...

But I am back on desferal  and not liking it at all... I am getting too many lumps and they wont go away for at least a few days or a week...

I hope the application goes through for you... I really do..

Take care

Kia Ora Smurfette
Pharmac control what the government subsidises so yeah I have everything crossed.
Hahaha The perks of my job is being busy hehehe
I understand about the lumps and have empathy for you.
I have had the needles in my arms and couldn't use them for at least a week without pain. One of my brilliant ideas to let the legs and stomach lumps go down. Used the backside and fat around thighs but when you sit or are lying in bed, you get the pain that reminds you of where the needle was hahaha.
How come you have gone off exjade? if you don't mind me asking.
I know that you are very lucky in Australia with regards to resources available for Thalassaemics. It is more common there than here in New Zealand. I had to come to your country before I actually saw a sign saying Thalassaemia Medical Centre. It still brings tears to remember how I felt after years of not belonging anywhere.
Thank you for your kind words and heartfelt wishes.
I sincerely wish you all the best as we continue our lives with Thalassaemia
Arohanui
Cherieann