Any Eisenmenger people here?

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Any Eisenmenger people here?

Postby littlebev » Sun Jan 30, 2011 8:02 pm

:D Hi there, im Bev, little Bev lol, the name for obvious reasons as im Kylie tiny. I was born with Eisenmenger which to me is just the norm. Ive had a happy 20 year marriage and am now 40.

I also have just had a little boy who is 8 weeks tomorrow through traditional surrogacy. Due to my condition and 8 suffered miscarriages (yes i know im very naughty for trying) i have now my dream stay at home full time mum life.

However 6 weeks before he was due with no warning i ended up in hospital having to have IV antibiotics as i was coughing small clots of blood up for ten days running. The antibiotics i took didnt kick it at all this time. I have only ever coughed up blood about four times in my life, normally with infection. I have to say only on this board would i say it scares the hell out of me. And now im too scared to go anywhere on my own with the baby in case it suddenly comes on again.

I cope quite well with the little man as my husband works til 8pm every night and i also do the night feeding whilst being low on iron at the moment. Im hoping my fears will drop in the better weather.

I just wondered if there were anyone out there who has experience haemopsys regular and manages to cope with it.

Im a newbie, be gentle with me.

Bev x
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Postby Lisa F » Mon Feb 14, 2011 10:33 pm

Hi Bev, congratulation on becoming a mother. Unfortunately I never had any children but my husband (2nd) has three children and one of them has just made me a Grandmother so I am quite happy.

I also have Eisenmengers and I do suffer with haemoptysis, the first one was brought on by a bout of pneumonia and have had three more since all lasting for between 5 and 7 days.

I tend not to worry about it too much and go out where and when I want to but I can understand you concerns with having a baby and being out with him if it starts. The only thing I can suggest is that you always take your mobile phone and plenty of tissues out with you and have someone who could come and meet you if it was to happen while you are out..

Take care xxx
Lisa F
VSD, TGA 1969.
Palliative arterial switch 1976 - Donald Ross
Eisenmengers Syndrome
PE's x 4
Atrial Fibrillation x 7 - all cardioverted
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Postby dstevs » Tue Mar 01, 2011 2:14 am

I have had bought's of coughing up blood since I was 28 always due to some infection or virus. My haemoptysis was controlled from the age of 28 -45 with 6 monthly venesections. I started taking Warfrain in 2009 which has helped a bit. I find the best thing to do is keep away from anyone with colds or coughs and get your flu jab. I can usually tell if I am going to have a bought because I get tired and sometimes get a temperature.
Congratulations on your baby you are very lucky I was unable to have children and my local council would not allow me to adopt because at the time (I was 30 and married) they wanted a letter from my doctor guaranteeing that I would live for another 15 years and my doctors was unable to give that reassurance.
So all I can say is enjoy x
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Eisenmenger Syndrome
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Postby Colin » Fri Jul 01, 2011 9:38 pm


I was diagnosed with Eisenmengers in 1975 - too late for any operations. I am now at the ripe old age of 56.
I have periodic bouts of haemoptysis and associated with catching a cold (from inconsiderate people who insist on going to work with a cold).
I deal with it by immediate antibiotics via my GP ( I keep a prescription at home just in case and renew when I finish a course).
I also severely restrict my activity so as not to cause breathlessness or raising blood pressure, and also sleep with several pillows, i.e propped up.
After a few days, when the antibiotics kick in, I know whether the system is working as I start to breathe easier and when I do cough up blood, they are clots rather than fresh blood (clots are dark and congealed whilst fresh blood is bright red). Regards
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Postby Nita » Wed Jan 11, 2012 6:44 pm

Hi Bev

I've had Eisenmenger diagnosed for over 20 years now, and also have experience the 'coughing up blood' symptom. Happily it has only happened a couple of times, and the last time was in 1999 so can't say it's a regular thing. It is scary, and when it happened for the first time like you I felt worried about going out alone and quite vulnerable - and can imagine having a baby with you would make that feeling even worse.

The advice I would give is not to let a small possibility dictate what you do. As Lisa suggests, be prepared just in case and make sure you have a phone number progammed in to someone that would be able to come to you quickly - and the tissues! But most of all enjoy your new baby, don't let this stop you getting out and enjoying showing him life.

Best Wishes


Go ahead and enjoy life!

Hole in heart repair (partial) 1970
Eisenmenger syndrome
Pulmonary hypertension (now treated with bosanten)
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