Thalassemia Patients and Friends

Discussion Forums => Living with Thalassemia => Topic started by: Sharmin on October 09, 2008, 10:15:57 PM

Title: Record Keeping
Post by: Sharmin on October 09, 2008, 10:15:57 PM

Hi everyone,

We have learned in recent months that it is beneficial to keep detailed records of your/your child's treatment.  This is helpful
for yourselves, your regular doctor, in case you relocate or are under the care of a new doctor, if you ave an opportunity to see a specialist doctor like Dr. Vichinsky. 

Detailed records allow you and medical professionals keep track of changes in your health and general trends - ie. transfusion requirement. 

Try to note:

pretx hg, transfusion volumes received at each tx, total tx volume received in a month/year, ferritin values over time, dosages of chelating drugs, growth patterns, activity levels or any other interesting trends or facts relating to your child.

We have been asked to record these events ourselves and have found it very helpful. 

Sharmin

Title: Re: Record Keeping
Post by: nice friend on October 10, 2008, 11:41:54 AM

Hi Sharmin ,
yeah , it will be realy good to have a record of your health and conditions it will make it easier for the doctor to detect the effects or side effects of any mediccine ... and wil able to advice you regarding youur conditions ... its a good idea ...

Take care

Title: Re: Record Keeping
Post by: Zaini on October 11, 2008, 05:19:34 AM

What ever test is done with my daughter,i always ask for a copy of my own,i have a file of all her reports with me,just in case.

Zaini.

Title: Re: Record Keeping
Post by: Sharmin on October 11, 2008, 06:08:26 AM

That's awesome Zaini  :thumbsup

the baby looks sooo cute!
 
Sharmin

Title: Re: Record Keeping
Post by: Lyanne on October 11, 2008, 07:00:31 AM

  Yeah, My mom does that when we were young, she had a medical diary of me and my sister. How much hb pre transfusion and post transfusion? how many bags of blood were transfused and did we have a blood reaction how many desferal infused that sort of thing......... but now I do that myself I have photocopies of results of every given laboratory test by my hema/cardio and gastroentomologist and the doctor's input and the prescribed meds....  :wink

Title: Re: Record Keeping
Post by: nice friend on October 11, 2008, 02:11:23 PM

yeah i have the record as well .. all the test reports , docotrs prescription and BSL record as well ...
my doctor apreciated me several time for keeping a record of BSL, on my own efforts with a personal Glucometer ....

Take
care
Umair

Title: Re: Record Keeping
Post by: Zaini on October 11, 2008, 05:12:19 PM

Hi Sharmin,

He is my nephew born on 13th september,and when i took the pic he was only 7 days old  :biggrin

Zaini.

Title: Re: Record Keeping
Post by: Sharmin on October 12, 2008, 06:46:37 AM

Congratulations on your little nephew Zaini!  He is sooo sweet!
 :congrats

Sharmin  :love

Title: Re: Record Keeping
Post by: Zaini on October 12, 2008, 05:31:59 PM

Thanks Sharmin,

Yes he is so sweet and so incredibly small  :rotfl :rotfl i love holding him in my hands,when our own kids grow up,new borns look really small to us  :biggrin.

Zaini.

Title: Re: Record Keeping
Post by: poo gill on October 13, 2008, 02:56:39 PM

Zaini your new born nephew is adorable.

God bless him with a healthy and a long life

Title: Re: Record Keeping
Post by: Sharmin on October 13, 2008, 04:08:32 PM

I know what you mean - my kids are getting big now - so I can't put my nephew down!  He is one now and sometimes he has to worm his way out of my arms!  He he

Title: Re: Record Keeping
Post by: Zaini on October 13, 2008, 04:48:55 PM

Thanks Puja  :hugfriend

I can't tell you how much i love holding him,his elder brothers really get jealous  :rotfl well they are only 6 and 4 years old.

Zaini.