Need help --- boyfriend boarderline heart failure

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Need help --- boyfriend boarderline heart failure
« on: February 08, 2009, 03:17:25 PM »
Hey guys

You may remember i opened up a topic a few months back about getting married to a thallassemic....Thanks to everyone who replied....I dont come with great news now. My boyfriend has been told hes got boarderline heart failure, his ejection fraction is currently 55%. We live in london, so thankfully his doctor is trying to help him. he currently takes 2500mg of exjade a day. But i think the doc wants to see him to look at putting him back on Portocath and IV Desferal. Iv read a few of the lifestyle changes he needs to make...But im really worried about him because he doesnt let anyone in. His own family dont even know anything about ne of the complications and hardship hes had with thallassemia major because he keeps it to himself and carries on life as normal, doing everything for everyone as if hes okay. He doesnt talk to me or anyone about it. I just forced him now to tell me whats happened because he has been acting weird since he found out of 29th jan. We have been fighting for ages now. but i understand hes going though alot now and im going to put the least amount of stress on him...I just dont know what to do to slow him down and make him think of his heart. I remember telling you guys, he does too much!!! hes always doing something...a normal person would be exhausted....

Does anyone know if the ejection fraction is reversible? can he possibly make it go back up? or is this it now? will it only stay at 55% or get worse?

The doctor said any infection he gets now, he can fall into heart failure....hes already got hep c and has had his spleen removed from a young age...im just so worried..

Anyone in this situation?

Thanks your support really helps me..

xxx

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Offline Dori

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Re: Need help --- boyfriend boarderline heart failure
« Reply #1 on: February 08, 2009, 04:50:36 PM »
I dont know which hospital you go, but I have had good and nice contact with docs from Whittington Hospital (doctor Shah) http://www.whittington.nhs.uk/default.asp?c=6662&t=1,151 . You may give it a try.
Heart failure can be cured by an aggressive chelation therapy. It is only a long road to get the iron down. How high is his ferritin?. Let him take good care of himself. I know how guys are, but he should talk about it. Even as a girl I know how hard it can be. Enough sleep is also very important. If he controls his iron he may start with hep C treatment. But there are members here who could tell you more about it than me.

Take also good care about yourself.

Best wishes, :goodluck:getwell,

Dore
ps. Does he experiences any side effect of Exjade? It is very important to drink lots of water (fluid) while taking Exjade.
p.s. Put targets and presents, like if the fe is down to 3500 we will go out for dinner or something like that.
« Last Edit: February 08, 2009, 04:56:55 PM by Peartree Girl »

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Offline Andy Battaglia

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Re: Need help --- boyfriend boarderline heart failure
« Reply #2 on: February 08, 2009, 04:52:38 PM »
First thing yes, it is completely reversible. It will take aggressive chelation and this is why they want to use IV desferal. The first line of defense for congestive heart failure (CHF) in thalassemics is IV desferal for up to two weeks, depending on the severity of the iron overload in the heart. This can be measured with the T2* test or the SQUID test, but I do not believe SQUID is available in the UK. The closest place for SQUID would probably be Hamburg, Germany. There is a well established protocol for treating CHF that has been developed by Dr John Wood and others at LA Children's Hospital and it does sound like your bf's doctors are aware of this. If he is being treated at Whittington Hospital, I am sure they can help him, as long as he is willing to cooperate. Many thals may believe this is the end when they hear CHF but with today's methods of treatment, that is no longer true and I want your bf to understand this. If he is unsure about this, please have him contact me privately at andy@thalpal.com. Once he goes through the IV desferal for as long as prescribed, I would highly recommend combination therapy using desferal and Ferriprox (which is now available in an easy to use oral solution). This combination has been proven to be the absolute best chelation method for removing iron from the heart. My good friend Katerina had the best care all her life but still ended up with a high heart iron load. Combination therapy with desferal and Ferriprox has reversed this and she is doing quite well now. If your bf ignores his treatment, the result is a slow and quite painful death. I don't say this to frighten you or him but it is the truth and I have witnessed my best friend slowly die and also am closely familiar with another case of a friend in the Maldives who refused to chelate and also slowly died. This of course is both horrible and avoidable with the treatment programs that have now been developed. This is rather new so your bf may not be aware of it, but as I said. CHF is completely reversible with aggressive chelation and this will be reflected in the ejection fraction.

Now what you need to do is refuse to fight with him. If he is hesitant to start the IV desferal, please try to convince him to email me and please do not let your frustrations with him lead you to fight. He may not understand the progress that has been made in recent years in combating CHF and this would lead him to a bad place inside. He needs to be given the information that he can beat this, but it is up to him to do the work. He needs understanding and support and he also needs to realize that there are several thals in their 50's who are alive and well in London and that, yes it is possible to live a good life with thalassemia. One of these guys recently became a granddad. I am very willing to talk to him to try to help, so please try to convince him to at least read what I have written here. He can beat this and there is no doubt about it, but it is up to him and him alone to make the decision to be a fighter and embrace life. I don't even know him but I want him to live. I've seen the alternative and with the treatment that has now been developed, there is no reason to not take advantage of it and have a good life.
Andy

All we are saying is give thals a chance.

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Offline Andy Battaglia

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Re: Need help --- boyfriend boarderline heart failure
« Reply #3 on: February 08, 2009, 04:55:40 PM »
I just want to add one more thing. CHF in thals has been completely reversed in patients who were near death and in far worse condition than your bf. He is at a stage where with some effort, he won't have to lie there in a bed wondering if he's going to make it. He can make it as long as he complies with the treatment regimen they will give.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: Need help --- boyfriend boarderline heart failure
« Reply #4 on: February 08, 2009, 05:15:16 PM »
Dear confusedgirl,

You have done a great thing seeking advice.  I think that it will do your bf a world of good if you relay the information that Andy has given you - to him.  If he contacts Andy, it can open doors for him to live a long and healthy life.  When we ran into a very difficult situation we also communicated with Andy and he helped us find that help that we needed.  I wish you and your boyfriend all the best.  Please keep in touch.

Sharmin
Sharmin

Re: Need help --- boyfriend boarderline heart failure
« Reply #5 on: February 08, 2009, 06:40:42 PM »
thank you guys so much for your help...i feel optamistic now!!

Andy the info you gave is priceless, i will certainly email it to him. Im glad to hear its reversible and i hope he does everyting he can to fight it.

Dore, his doctor is actually doctor shah, she seems like a really nice lady and very helpful...

And sharmin thanks for your message....I will let you guys know what happens.

Take care and once again THANK YOU


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Offline Dori

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Re: Need help --- boyfriend boarderline heart failure
« Reply #6 on: February 08, 2009, 06:44:28 PM »
That is good to hear. I never met her, only my parents with her, but she send really nice mails. She is indeed a very nice lady. She told me exactly the same thing as you and andy did. She gave me a peptalk aswell, but I am almost obsessed with chelation... I am glad to hear she is his doctor. Si, keep us up to date :)


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Offline Andy Battaglia

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Re: Need help --- boyfriend boarderline heart failure
« Reply #7 on: February 08, 2009, 07:01:22 PM »
I agree about Dr Shah. Your bf is in great hands. All he needs to do is listen to Dr Shah and follow all the recommendations for his treatment.
Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: Need help --- boyfriend boarderline heart failure
« Reply #8 on: February 09, 2009, 01:16:23 AM »
Best of luck in conviencing him, please keep in touch

manal

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Offline Zaini

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Re: Need help --- boyfriend boarderline heart failure
« Reply #9 on: February 09, 2009, 03:24:05 AM »
I am really touched by your concern,i hope you'd be able to convince him, our prayers are with you  :hugfriend.

Zaini.
^*^Xaini^*^

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Offline jade

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Re: Need help --- boyfriend boarderline heart failure
« Reply #10 on: February 12, 2009, 08:19:53 AM »
Hi confusedgirl,



We have been fighting for ages now.

xxx

It is a normal reaction and he may be pushing you away so that you wont see him suffering.  You must be very very strong.  Try to convince him to contact Andy.  Do not give in to the fights, you will forget the most important thing: his health.  I truly hope he gets better soon.  Keep sending us news.

Good luck
Jade

Re: Need help --- boyfriend boarderline heart failure
« Reply #11 on: February 17, 2009, 09:56:14 PM »
Hey guys

Hope your all well.

Just to let you know, I forwarded all the info you gave me to him. Thank you again.

I don't know he says he's fine and all he needs to do is take his medicine. Can't really communicate with him at the moment.

Not sure wats happening.

I told him to let atleast one person on his family know about the situation.  He refused.

Anyway hope he gets better

Thanks again for your helps

Lotsa love x

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Offline Sharmin

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Re: Need help --- boyfriend boarderline heart failure
« Reply #12 on: April 12, 2009, 06:18:32 AM »
Dear confused girl,

I hope that things are going well for you and your boyfriend,

Sharmin
Sharmin

 

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