Newbie here! Ebsteins Anomaly with Severe TR

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Newbie here! Ebsteins Anomaly with Severe TR

Postby Angels Sorrow » Wed Sep 11, 2013 6:37 am

Hello All ...
I just thought I would introduce myself to you all. I am a 41 year old female, with a underactive thyroid, rheumatoid arthritis, relapsing polycondritis, and Ebsteins Anomaly with severe tricuspid valve regurgitation and secondary RS heart failure. I am 5ft 3in and weigh 8st 6lbs.

current meds for the above mentioned conditions are:
Levothyroxine 125mg daily
Bisoprolol 10mg daily
Hyroxychloroquine Plaquenil 200mg daily
Clopidogrel 75mg daily
Lansoprazole 30mg daily
Aspril 75mg daily
Coedine (as required)
Glyceryl Trinitrate GTN Spray (as required)

I was told a year ago that I needed a valve (repair/replacement) surgery by my consultant at QE Birmingham as my symptoms were/are quite bad, chest pain, cronic palpatations (even at rest just sitting quietly watching TV, also at night they wake me in my sleep), fainting and dizzy spells, breathlessness (even when I don't exert myself), loss of apetite, severe fatigue, bloated stomach and swollen feet and ankles, loss of memory and concentration, terribly confused at times. After a lengthy discussion with my consultant and specialist nurse about what the surgery involved, repeat surgeries, the risks and the statistics of this surgery, I declined the procedure and asked to be taken off the list for surgery. I am a year on now from when he told me that I needed the surgery, and yes my symptoms have got worse, but I have adapted my life to cope with them. I have just completed another round of the usual diagnostic tests at the QE (ECG, MRI, heart monitor etc etc) to see how my 'ol ticker is doing 12 months on and I am waiting on my appointment to come through to go back and see my consultant to discuss how things have progressed. Most of you, I'm sure, will think I must be completely mad to not have the surgery done, and I can understand that ... but I have my reasons. I just wanted to say hello to you all and read your personal stories, so that I don't feel so alone.

JK x
Angels Sorrow
 
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Joined: Wed Sep 11, 2013 5:14 am
Location: Staffordshire

Re: Newbie here! Ebsteins Anomaly with Severe TR

Postby Forlyd » Wed Sep 11, 2013 3:46 pm

Hello JK,
Apart from your Polycondritis and Ebsteins I can say SNAP !!! BUT I cannot have surgery to repair my old severely leaky Tricuspid valve. Would not survive the general anesthetic. My leaky tricuspid is caused by Right Branch Block. The left side of the heart has swollen so much it is stretching the valve to a point where it cannot close up so the back pressure is damaging my liver. I know it doesn't seem fair that we should suffer the same fate as those "Healthy" people who cripple their liver with overindulging the booze, but, that's life ! We have performed miracles just to survive to ages we have, but you shouldn't give up. We must both have survived tough times and we have come out the other side in reasonable nick ? Keep taking the pills especially your Levothyroxine. I notice, unlike me, you do not take Ferusomide ? I take this for water retention (Swelling legs and ankles) For me they work a treat. Itchy skin is a big problem though, and yes dizzyness when I stand up too quick or bend down !!! Do not get the palpitations though. Maybe because I have a doal ICD keeping an eye on my dicky ticker. Cheer up JK and show everybody how tough you can be.
Love and hugs from 65 year old Lydia.
Tof,Pulmonary valvotomy 1952,Pott's shunt 1955,Pott's correction-VSD & dacron graft with Hancock valve 1975. Ablation 2001.Bivent.fail & AF 2002. Cardioversion 2002.Paroxy AF 2002. Ostial stenosis right CA. Cardiac arrrest-ICD 2004. In AF-vent/pacing.
Forlyd
 
Posts: 231
Joined: Mon Feb 09, 2009 2:04 pm
Location: Newcastle-upon-Tyne

Re: Newbie here! Ebsteins Anomaly with Severe TR

Postby vicki » Thu Sep 19, 2013 6:11 pm

Hi JK,

There was an article in a recent GUCH News which might be of interest, it was written by Wendy Knowles and is called 30 Years after Fontan, Wendy writes about her decision to have no further interventions. I'm not certain if there is a link to the article on the website, however if you email the helpline helpline@thesf.org.uk they will be able to email you a copy of the article.

Vicki
vicki
 
Posts: 589
Joined: Thu Jul 08, 2004 11:49 am
Location: glasgow

Re: Newbie here! Ebsteins Anomaly with Severe TR

Postby sean » Wed Apr 06, 2016 5:50 am

Angels Sorrow wrote:Hello All ...
I just thought I would introduce myself to you all. I am a 41 year old female, with a underactive thyroid, rheumatoid arthritis, relapsing polycondritis, and Ebsteins Anomaly with severe tricuspid valve regurgitation and secondary RS heart failure. I am 5ft 3in and weigh 8st 6lbs.

current meds for the above mentioned conditions are:
Levothyroxine 125mg daily
Bisoprolol 10mg daily
Hyroxychloroquine Plaquenil 200mg daily
Clopidogrel 75mg daily
Lansoprazole 30mg daily
Aspril 75mg daily
Coedine (as required)
Glyceryl Trinitrate GTN Spray (as required)

I was told a year ago that I needed a valve (repair/replacement) surgery by my consultant at QE Birmingham as my symptoms were/are quite bad, chest pain, cronic palpatations (even at rest just sitting quietly watching TV, also at night they wake me in my sleep), fainting and dizzy spells, breathlessness (even when I don't exert myself), loss of apetite, severe fatigue, bloated stomach and swollen feet and ankles, loss of memory and concentration, terribly confused at times. After a lengthy discussion with my consultant and specialist nurse about what the surgery involved, repeat surgeries, the risks and the statistics of this surgery, I declined the procedure and asked to be taken off the list for surgery. I am a year on now from when he told me that I needed the surgery, and yes my symptoms have got worse, but I have adapted my life to cope with them. I have just completed another round of the usual diagnostic tests at the QE (ECG, MRI, heart monitor etc etc) to see how my 'ol ticker is doing 12 months on and I am waiting on my appointment to come through to go back and see my consultant to discuss how things have progressed. Most of you, I'm sure, will think I must be completely mad to not have the surgery done, and I can understand that ... but I have my reasons. I just wanted to say hello to you all and read your personal stories, so that I don't feel so alone.

JK x


Hi hope you are well, or as well as can be. Not many of us ebsteins about, I was diagnosed with a severe ebsteins but with very little symptoms well until a few years back when my ticker decided it had had enough, felt like i'd been running a marathon and that was just standing up, after the surgery I've never been better. I don't know your reasons for not wanting surgery but its the best thing that ever happened for me. good luck

Sean
Ebstiens Anomaly .
Cardioversion
Tricuspid Valve Replacement
Modified left and right atrial maze procedure
Dual chamber Pacemaker
sean
 
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Joined: Wed Nov 29, 2006 10:17 pm
Location: Doncaster


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