heart transplant ? can any one help?

[bella1977]

hi my husband is due to go to papworth hospital in cambridge for 3 days for an assesment for a heart transplant, at 30 we are both young and were shattered to be told he has dialated cardiomyopathy, and the only way forward is a transplant,has any one else had the experiance of papworth general hospital, or is any one going through the same as us i find it hard to talk to family and would appreciate some friends who know how were feeling right now

[marlene123]

A word of encouragement.  I know how you are feeling.  I have been in your shoes several times.  My brother was diagnosed with heart failure when he was 40.  He had a heart transplant 23 years ago.  He has had some problems from the medication, but overall he has been doing good.  My brothers son had a heart transplant 6 years ago when he was 26.  He also is doing well.  My son also had a heart transplant when he was 40.  He is now 45.  He also is doing well.  Each one of them would not be here today without this mircle.  My son had only a few hours to live.  So hand in there.  And I will pray for your husdand and your family.  

[Jillejam]

Good luck, I am keeping my fingers crossed for you both.  I know many that have done well with a transplant.  The last one was a  young mother back in July and she just went out to dinner for the first time in ages.  Something positive for you to hear.  I look forward to hearing the news.

Your friend,
Jill

[bella1977]

as we are going to papworth on monday for 3 days i will be unable to post any thing till then but as soon as we get back i will let you no how we have got on and wat they are saying ,xxx

[bella1977]

hi jill thanks for your support, my husband has had enless tests etc has a heart failure nurse and his ,well our quality of life is miserable at the minute , it was agreed by two top specialist to be put forward for the transplant this is why we are going to a big hospital on monday for 3 days to have yet more tests and on the final day see if they also agree with the transplant. the slightest thing my husband does leaves him gasping for breath, the transplant seems a light at the end of the tunnel, the hospital have tried different meds which he doesnt respond to instead of helping him his heart is deterioating quiet rapidly and as he is young they feel he will have a better quality of life with a new heart.i will put your e mail addy in my contacts if i can spell it all lol, and thanks again xx

[Jillejam]

Hi there Bella
I would get a second opinion, this doctor sounds a bit gung ho for a heart transplant to me.  Also, are they 100% sure of his diagnosis....I mean my diagnosis changed like 3-4 times in four months.  It just seems that you are very uninformed about important info regarding his condition.  You should have known what an EF is, I learned that on my first day of my heart problems.  My original EF was 15% but with meds it is up to 30% now.  Before you agree with a transplant I think you need to learn everything you can about your husbands condition.  You need to be your first and best medical advocate.  Please get a second opinion.  Heart transplant is a last resort, my doctor is doing everything to ensure I don't need one.  She is a heart failure specialist that was in charge of transplants at two large hospitals.  I don't know how things are done in the UK but it seems they are rushing into things a bit.  

I know a few transplant success stories and they only had them done when the quality of life was so miserable that they needed it.  

Yes, ask about coreg....it helps with heart failure and healing the heart.  I currently take this med, it has a few side effects but it is working for me.  

I am here for you for support....sounds like you could use it.  my email is jillejamatyahoodotcom...have to spell it out cause they block it.  put the symbols in if you want to email me.

I am an american but I talk to all people..LOL  I am also on 37 going through all this stuff too with two little boys so I understand the age thing.  

Good luck to you and I am here for you!
Jill

[vienna13]

I didn't know about the beta blocker can’t go with asthma.;(  bb coreg etc could be an important medication for him...but...
Good to hear he is going to go to that hospital, where it seems will be great care for him, and more answer. Let us know. Knowing everything about it helps a lot, good thing you research all the info, we are also here for you to talk.

[bella1977]

his current meds are
ramapril ,digoxin,bumetanide, spironolactone,ferrous sulphate he is unable to have beta bloker as he has asthma ah yes he also has chrones disease so he is going through the mill a bit!! x

[bella1977]

thankyou we hope so, have you or anyone you know had any experience of papworth we would be grateful to share this with anyone who knows wat we are going through.

[JMWB]

Papworth is a great  hospital for heart patients. You will be in good hands there.

[bella1977]

thanks for that sometimes doctors say things that we dont quite understand , he is very nervous about it all, we both had great jobs and life was looking fantastic for us.then we crashed down to earth, its hurts him more as we have 2 boys aged 8 and 5 and they understand so much but keep asking wen daddy will get his new heart, the hosp doctors are optimstic tho, he non smoker doesnt take alot of alchohol and is fit and healthy otherwise i ,have trawled endless sites trying to find out more about his condition, iam pretty well up on it now ha ha, just helps to talk ,thankyou xx

[vienna13]

I ment his name ON the list. Most important how he is feeling? What medication did they put him on ?
Is he a smoker? or overweight? those can make it harder. Best you can do is don't let him eat salty, but you hopefully know that. Sometimes they just say don’t eat salty, not enough. Must be sure the daily total sodium not higher then 1600 mg.
Also most food has sodium naturally in. Do not let him eat anything from can; those are very high in sodium. You will find the way. We all did. My EF was 20 %, but improved very soon. I was lucky, and most people has improved who I know and started around 20%. We are here to talk, ask questions, it is very important to be well informed. I also goggled a lot. I am sorry you two have to deal whit that in this very young age, but just try to stay relaxed and stay positive about it.  It is amusing what the positive attitude can accomplish,

[vienna13]

Hi ,again,EF means "ejection fraction." Your EF is the percentage of blood that is pumped out of the heart during each beat. It’s also a measurement used by doctors to see how well your heart is functioning. Low EF number can occur if your heart muscle has been damaged as a result of:

Heart attack
Heart valve problems
Heart failure

Your husband probably has around 20 % or less.

http://www.hearthelp.com/sca/ejection-fraction.html

Please do not worry. I was reading posts on other boards people posted and the heart transplants were all success for them. And that is good thing if they put your husband name of the list, even if it would turn out he would improve. How is he feeling?



  


  

[bella1977]

the cardiologist has said that transplantation is the only way to go he was diagnosed with this in may of this year he has not stablised on the tablets, had enless tests etc and they feel they can do no more without a new heart, he also has left lv dysfunction please forgive me but i dont understand wat u mean by ef number never heard of this before ,. thanks for your kind words

[vienna13]

What was the cardiologist's opinion on transplant? Did he say that is the only option  in his opinion?  What is his EF number? People often think they need transplant   based on the low EF. Let us know. EF can improve with medication and with the right life style. Did the DR talked about the very important lifestyle changes?  Do not be scared, even if it gets to the point when it is no other option but the transplant it will be all right!