I am in the hospital

hey all I was admitted yeaster day due to irregular heartbeat I do not have access to the comp unless i leave my floor and come to the library but, it is not always easy to convince the nurses to let me go.  I have alot of questions and concerns and none of my drs have experiance with Thal so if anyone is willing to talk to me Especially Andy please call my room (412)784-4338

Thank you
brandy

Brandy,

I'l call a little later today. Meanwhile, see if you can get the doctors to read the information provided in the post at
http://www.thalassemiapatientsandfriends.com/index.php?topic=1451.0;highlight=arrhythmia

This is from the European Journal of Haematology

Volume 80 Issue 2 Page 93-106, February 2008

This is the most up to date information on heart problems in thalassemia and may provide some guidance for your doctors.

I would also suggest that the doctors consult with another hospital where thalassemia is treated (perhaps Pittsburgh Children's hospital).

I"ll talk to you soon.

I just got off the phone with Brandy and she is being released from the hospital, so she's alright at the moment. We're going to have to encourage her to faithfully comply with her chelation, as this is likely related to ion overload in the heart. The information in the link in my previous post is crucial to understanding heart disease in thalassemics and should be provided to every doctor who is dealing with a thal patient with heart trouble.

Great Work Andy,

Thank you for all your efforts. You are amazing.

Brandy, i hope that you will get well soon and pleeeeeease don't forget your chelation. Thanks Andy for being there
manal

Brandy,
I'm so sorry to hear about your arrhythmia. I've been through it and I know it feels awful.

Please comply with your chelation. Arrhythmia is just one of the problems that comes with the lack of chelation. I've been through it along with other host of problems and I don't want anyone else to go through them too.

Please please please comply to chelation. A needle prick seems less painful every night after all the complications that could been avoided. You are lucky to have a great opportunity to avoid such things from happening if you are getting constant supplies.

Please take care of yourself. Wishing you all the best for the future.

Unfortunately with Brandy it has nothing to do with a needle prick. Brandy is severely allergic to desferal. I have always wanted to help her because she has had so much trouble with chelation. For awhile she was on a program that required her to travel to Canada to participate in a special program where she got L1, but the program was changed so only Canadian citizens could take part, so she was again without chelation. Once Exjade became available, she has had another chelator but her ferritin has been very high and it really takes complete compliance and a higher dose of exjade to deal with serious iron overload. She knows she's going to have to get more serious about compliance now, and I have asked her to keep in touch so we can know how she's doing.

Brandy's case is one that has outraged me, because before Exjade was introduced, patients were given no choice when they were allergic to desferal. When Dr Olivieri pulled the plug on research of L1 it left patients with no choice but to die if they couldn't tolerate desferal. She has yet to admit that her research was faulty, nor has she acknowledged the harm done to patients because of her abrupt cessation of the L1 study and her ongoing battle against Apotex. While the press championed Olivieri as a martyr, patients were dying from iron overload and no one cast a thought to their sad lot. My views on this were expressed in a response to a review of the book, The Drug Trial: Nancy Olivieri and the Science Scandal that Rocked the Hospital for Sick Children, by Dr Miriam Schuchman, and can be seen, along with Shilpa's response at http://bmj.bmjjournals.com/cgi/eletters/331/7508/115

Brandy and Lisa were the two people I knew who were most affected by the decision to keep L1 out of the hands of patients who could not tolerate desferal (Brandy's allergy to it being quite severe) and this has been a prime motivation of mine for years. I hope Brandy can beat her iron overload and now that Exjade is available she does have a chance. I really do wish L1 was readily available to patients in North America, as nothing works as well to reduce the iron in an iron overloaded heart.

Can Brandy get L1 with her situation in US?

Referring to a link from:-
http://www.thalassemiapatientsandfriends.com/index.php?topic=1819.msg15551 which refers to http://www.thalassemia.org/sections.php?sec=2&tab=10&sub=192

ApoPharma, the manufacturer of Ferriprox, has established a Treatment Use Program to provide Ferriprox free of charge to physicians who have patients who are unable to take deferoxamine. To gain access to Ferriprox through this program, the physician and patient first must discuss the benefits and risks of Ferriprox. If both feel that Ferriprox may be of benefit, the physician must contact ApoPharma in writing to request treatment use of Ferriprox. ApoPharma will request information on patient medical history and current clinical status, after which ApoPharma will make a preliminary determination as to whether the patient meets the criteria for inclusion in the Treatment Use Program. If so, the physician must submit a single patient Investigational New Drug Application (IND) to the FDA. Such applications are generally answered within a month.

Patients and physicians should be aware of this option so that they can discuss what therapy is most appropriate. CAF urges patients to always remain compliant with whatever therapy is determined the most appropriate. It really is a matter of life and death.

I did mention this to her when I called her. We'll have to see which direction she takes now. She may choose to try to get her iron down with Exjade, but I don't think she'd be allowed to take both.

Brandy

My prayers are with you 
Kathleen

Oh my,

I hope that Brandy can take Exjade/L1. Please get it started as soon as possible.

I really hope Brandy will soon find the best solution for dropping down her iron. I used L1 for last years and I am really pleased with it, and know it works on me. We all know that it is very good for reducing the iron from the heart and that is why I think it will be of great help to her.  If there is somebody who can help her in getting L1 and starting it as soon as posiible, it will be wondeful!
I wish you luck, Brandy!:>

i hope brandy gets better real soon and can tolerate the exjade to get her ferritin down! i know how it is to have an allergry to
desferal,as i have the same problem,as andy mentioned for all these years i could do nothing but take desferal and have reactions( i have severe swelling,hives and bruising and very itchy)but since ive been on exjade for the last year and a half its been a godsend.Thank goodness for technology starting to go forward for thals!

Dear Brandy,

I hope that you are well.  I don't know what to say about what is going on with your chelation. 
I too am frustrated with the hospital for sick children - they are great when they are on your side - better than great.  They do not think twice before letting you go though, as soon as something changes they are not afraid to abandon you.  Have you tried contacting Oakland?  Let us know how we can help.

Sharmin