Hello everyone - hugs needed...!!

[amanda_]

Hello everyone. I'm not entirely new here - I posted a couple of years ago but can't find my username etc so have made a new one.

I have a BAV and went to see the specialist today and he told me it has fairly suddenly started to leak 'moderately' in the past few months (not sure how it was before). He wants to see me every six months now. He also told me my heart size was 5.5 which is the largest acceptable size for a female heart but then he said mine is twisted on its axis and so one side is larger anyway (I'm not sure I've got this quite right but he was showing me the door by this time).

Does anyone have any experience of their BAV leaking and how long was it before they needed surgery..? Mine wasn't leaking that badly a year ago, so it's odd how quickly that can happen. I'm 35 and moderately fit. The doctor asked me a few times if I feel out of breath and I do when I go up the stairs, but is that just cos of my sedentary lifestyle..? I can go shopping and walk for a long time with no problem though.

I'm feeling quite shaken really and am all alone today so would really appreciate some help or especially... comfort...

Thank you so much
Amanda

 

[Mary]

Amanda,
I didn't have regurgitation with my bicuspid, I had stenosis so I can't help you there.
However, I can offer you a hug to help until someone else wanders through the place to give you their take on your situation.

 

[bvdr]

Hi Amada, welcome back. You have had the kind of day that is bound to shake you up. That is really really normal. I think most of can recall the day that the reality of having heart problems settled into the present tense. Mine was the day I scheduled my MVR. The conversation with the scheduler was over the phone and it had the casualness of scheduling a dental or hair appointment but I think I was shaking as I hung up the phone and then shed a few tears. How you feel today will probably be long remembered but will, as everything else, soon just be part of your past.

I didn't have a BAV so I'll leave that part to others except to say that we have long noted a trend around here that as valve problems progress then the speed they progress also picks up. I'm glad you are on a 6 month check-up schedule now but don't let that stop you from calling if your symptoms start to worsen. Many of us felt our SOB (shortness of breath) and fatigue were from being out of shape rather than that the fatigue and worsening condition had slowed us down and contributed to us becoming out of shape. Just stay tuned to what your body is telling you. Do not be timid to speak up if something doesn't feel right to you.

You do know that we will be here for you and that we do understand what you are going through. Make yourself a cup of tea or something and start regrouping your thoughts. You need to get copies of your medical tests from the last several years and start your own personal file. This will help you immensely as you become really involved in your own case.....and it is imperative that you be very knowledgeable about this. You will have decisions to make and you will be in a position to assume an active role.

Welcome back to the family. I'm sending a cyber hug to you as I close.

 

[LynnK]

Regurgitation

Regurgitation

Hi Amanda,

I wish I could give you a big hug. Human touch and laughter are almost as important than the doctors treatment.

I had seen a cardiologist and had no severe troubles 2.5 years before I was found to have a 20% ejection factor (EF) and heart fibulation caused by the severe regurgitation.

I had a mitral valve replacement in August and I am doing a great deal better than before the surgery.

Within a 3 weeks after surgery my EF had improved about 30% and I am hopeful that it will go back to an acceptable range.

Please ask me any questions that you would like. I am at home alone today also and will answer any questions as soon as I am able.

Take care,
Lynn

 

[susieq14]

Hugs to you!!!

Hugs to you!!!

Hi Amanda,
I wish that I could reach right through this silly computer monitor and give you a great big hug!
Since I can?t this will have to do:

(((((((((((((((((((((((((((((((((((((((((((((((((((Amanda))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))

I?m so sorry that you got such upsetting news today. I know nothing about BAV ? I am actually just learning about my own situation (diagnosed totally out of the blue in August 2004 with a leaky mitral valve) so I can?t offer you any insight into your condition. What I can offer you is confirmation that what you are feeling is totally normal and you are entitled to feel overwhelmed with such news. I would have to echo Betty?s comments that you should get copies of all your medical stuff. Also if you have questions about your visit this morning, please call the doctor back and insist on answers to your questions. The unknown is sometimes more frightening than the actual problem so don?t put yourself through this agony.

I hope others with BAV respond to you so you can get some clarifications. I?ve only posted two times to the board last March and just this past Saturday (I have my 6 month check-up on Wednesday 11/16) but I have been reading it constantly and am learning lots from the many knowledgeable folks here. More importantly I have learned that the folks here are truly remarkable in their ability to share their experiences and offer assistance to those of us newbies who are trying to find our way in this medical maze.

Do take care of yourself!

Susie

 

[amanda_]

Thank you Mary, Betty, Lynn and Susie for your lovely replies! I thought this would be the best place to come to feel better.

I printed a short list of questions to ask the doctor but as usual with the British state health system (the NHS) he was pressured and didn't really have time. He scribbled a few stats down but I can't even read some of his writing.

It was a shock to find out that my heart is twisted on its axis - sounds horrendous.

I think also it was bad that i had to leave without getting myself together enough to ask questions - the questions are only occurring to me now. Most of the things I did ask he was v cagey about and would only say he didn't know. I think doctors are not much better than in the days of leeches, in some ways. They don't really know. People here know better - I've read a few times that when things start to get worse, they tend to get worse quickly.

He seemed to get a bit impatient when I gave him my list of questions (only 6 short ones - for 6 statistics). But that may just be my imagination.

He said mechanical valves last for 20 years! That means I'd need more open heart surgery in my mid fifties.

You know, i would have felt a lot better if he had been a bit kinder. But for that perhaps you need private health insurance??? Which i can't afford (and probably couldn't get now).

Anyway, will stop moaning on now (am sure I'm a 'type D' personality to boot!)

Thank you for your hugs - they're so appreciated when you feel down
xxxx

 

[Gemma]

Hello Amanda,

I'm in Chester, Cheshire so have experienced the NHS! My boyfriend Jim had his bicuspid aortic valve replaced in December 2003. At first his cardiologist was the same as yours - seemed very impatient and I really used to dread going to appointments just because of the personality clash. But when we went in August, it was like he was a different person! Really listened to all Jim's questions and took the time to answer them - I realised it was because he was running on time and didn't have a waiting room full of irate patients for the first time ever. I really think that plays a BIG part in how anyone behaves.

I think it's pretty typical that you've started thinking of questions now. Maybe you could either take them to your GP and see if s/he can help answer them (your cardio has probably also written a report letter to your GP so may have some stats in there for you to confirm). Also if you could take someone with you to your next appointment with your cardio, that might help - from experience I think they tend to take people more seriously when they have back-up!

Can't help with how fast Jim's valve went "bad" I'm afraid - his only symptom was chest pain when he was resting/in bed, and he was at the severe stage when his problem was diagnosed (his left ventricle measured 7cm then! and was even bigger at surgery) - went from diagnosis in March '03 to the operating table in December. Also not sure about the relevance of your heart being "off axis".

As for mechanical valves lasting 20 years, I think that's a rather outdated estimate. Although there are no guarantees you won't need another surgery for some other issue, it's widely accepted that the valves themselves will last indefinitely. Jim's surgeon told him that his mechanical valve would last him forever and I'd rather accept that assurance from someone who deals with them a lot (he did another valve replacement on the same day as Jim's, and judging from the number of patients with valve replacements in the ward, at least a few more each week), than a cardiologist who has to try to be knowledgeable about EVERYTHING heart-related.

Maybe you could tell us what your questions were that your cardio couldn't answer, and someone here might be able to point you in the direction of some answers.

Until then, here's a big hug from Chester (((((((((Amanda))))))))

Gemma.

 

[Christina]

Welcome back...

Welcome back...

Hi Amanda,

Welcome back to VR.com.
We all remember that dreadful day when we heard the bad news, so we can identify with you. I don't have BAV so cannot help you there, but know that someone will come along and give you the support you need.
When it comes to hugs, you've come to the right place. We cannot physically be there with you the give the hugs, but nevertheless be assured that the hugs are very sincere through the computer.
Just pretend and consider yourself HUGGED..
Christina ((((((((((((((((((( AMANDA)))))))))))))))))))

 

[Yaps]

 

[geebee]

Amanda,

I would also like to welcome you back. I don't have any input on BAV but can be very good at virtual hugs. I am sending many your way along with prayers that all turns out well for you.

Please take care.

 

[amanda_]

Thank you Gemma, Christina, Yaps and Gina for your hugs and comfort. It means such a lot. Have had a really terrible day today. Gemma, what you said about mechanical valves is really reassuring... thank you so much. How is your boyfriend now..?

 

[gadgetman]

Big Hug.

(((((((((Amanda))))))))

Sorry to see you have to be alone at a time like this. All we can offer is cyber shoulders to lean on here. Hope you can find someone that will LISTEN to your questions (without looking at their watch) and provide the answers you desire.

May God Bless,

Danny

 

[Gemma]

How is your boyfriend now..?

Fantastic! . Last weekend he went out on his trials bike (motorbike) for a couple of hours and we went for a long walk round a nearby forest. He's at work full (sometimes over-) time as a precision engineer, and frankly he can run rings round me in the fitness stakes . Compare that to how he'd be if he hadn't had the operation 2 years ago - well, it's no contest really.

 

[aussigal]

Hi Amanda


BIG HUGS from me too..Its hard to realise suddenly your innocent bicuspid-valve turned into a monster and mine even grew an aneurysm or two over the 4 years from my first review .

I also have just learnt 2 of my boys have BAV so yeah...I am trying to become the resident BAV expert... .

I have noticed one commonality amongst BAV's here and that is many of us experiencing troubles with theirs seem to be around the same age 30-40 ( I am 41) from my reading these things seem to work OK for 35 odd years then wear-out...and It would almost seem usual for a BAV to wear out about now.

I had an enormous shock when I realised I would need OHS, my original explanation of my valve was that it was innoccent . I had never even read about it further or realised it could/would need replacing etc....

I think I spent a fair bit of time in tears on the bathroom floor trying to sort my brain out ...but one-day with the help of all these lovely people I got over it a little easier, and then each day now is a little better...

Ask us tons of questions and we shall reply with lots of hugs cos I think we have all been through the same feelings just not quite the same OP's.

Symptoms for BAV...

I would say shortness of breath all the time,
(i find I hold my breath alot too)
I would have to sit and think about the others, but I know used to get awful chest-pain that has almost gone with the new pills from the cardio.And I had really bad Labile High Blood Pressure. Now its settled a bit.

Welcome back and nice to meet you Amanda I'm Tonia.

 

[kingpeta]

Hi Amanda and welcome back. I had a BAV from birth. For 20 years I knew about it and had it monitored yearly with echos. I had mild to moderate leakage all those years until the last year. My leakage became moderate to severe and it was time for surgery. I had a mechanical valve "installed" October 10 and I'm happy with my decision. My surgeon said mechanical valves in use today should last your lifetime and that's what I'm counting on! I hope you can get your questions resolved and feel more comfortable with the process you're going through.

 

[Cris N]

Amanda,

Like some of the others, I have no experience with BAV as my problem was a mitral valve. But, I can certainly understand your distress, confusion, anger, whatever... The next time you see the doctor I'm sure you'll be much better prepared and can get your questions answered. Please be sure to keep us all informed. In the meantime, here's my hug:

 

[Rebecca]

Hi Amanda,
My mother heart is also tilted and it throws off her ekg. When my mom had her first ekg the doctors wanted to knew when she had a heart attacked. My mom told them I can?t remember ever having one. It was when she had an echo that they discover a different tilt to her heart.

I have a enlarge heart and moderate av for the last ten years. For the last ten years I have seen my cardiologist every 6 months. I think when you are in the moderate range that it is normal to see the doctor every 6 months. Make sure your blood pressure is in the normal range. A lot of doctors want it low so your heart does not have to work as hard. I did have one echo that put me into the moderate to severe range, but my last echo I was back at the moderate range. In my first three year with a moderate heart murmur I thought everyone went to a cardiologist. One day two of my friends with heart murmur that also do pre med. for dental told me that they had never went a cardiologist because they had mild heart murmur. At my next visit with doctor I asked a lot of question and found out that my odds were pretty good that I would need surgery one day. About four years ago all my shirts I bought were high top. I now am back to buying low cut shirts and one day when I do have surgery I will wear my low cut shirt.
I am sending lots of hugs your way.

 

[OldManEmu]

Welcome

Welcome

Amanda it can be overwhelming when the Cardio advises you that things are deteriorating since your last visit. It does sound like the Cardio has a bit of a communication problem though; he should answer your questions. Do not allow them to brush you off. How bad the Cardio thinks things are can be determined by what they suggest next, another review or a referral to a surgeon. What has the Cardio suggested for you going forward?

 

[amanda_]

Thank you Danny, Gemma, Tonia, Pete, Chris, Rebecca, mtnbiker and OldManEmu for your such kind posts. I'm overwhelmed. It has made such a huge difference to me. My husband is back at home now but, as I'm sure you all know, it's hard to lean on just your sig. other because they're as worried as you are - it's so hard on them too. And I haven't even been able to get through to my mother in Spain to tell her either, yet.

Gemma, I'm so glad to hear your boyfriend's so fit and well now - it's a relief to hear that for me as well - it gives me hope. Lucky you living in Chester - it's a beautiful city - I used to like visiting for the day when I lived in Newcastle in Staffs.

Tonia - I was beginning to notice that many here were in their 30-40s when they needed surgery as well... it is interesting... And yet when I was first diagnosed at 27 (it was at birth actually, but my mother never told me - she hoped it would go away!) the cardio said I'd be into my 50s before I'd need surgery. And thanks also for listing the symptoms... I had to give a talk for an evening class I'm doing yesterday and I did notice I was shorter of breath than I used to be. Have noticed that when I've been reading aloud or singing as well.

Pete, I'm really relieved to hear that mechanical valves do last a lifetime - thanks..! You'd think the cardiologist would know, wouldn't you - he told me 20 years...

Rebecca - does your mother's heart being off-axis affect her prospects at all..? Am a bit worried about this.

OldManEmu, my cardio has suggested an echo in January and to see him again in February, so 3 months from when I last saw him. He's wondering, I think, whether things are going to carry on getting worse or stabilise. He just said "In most people, stenosis or narrowing occurs, but in you it's gone the other way (leakage) - for some reason". I wanted to ask, "For WHAT reason?!!" but was afraid to in case it was my fault for my sedentary lifestyle.

Thank you EVERYONE for being such a comfort in a time of need. To think that there have been people from 3 continents thinking of me and taking the time and trouble to reply is so wonderful... I'm overwhelmed. God bless you all.

 

[OldManEmu]

I am relieved that the Cardio is now following you at 3 month intervals since things are starting to deteriorate. As for the way the valve deteriorates that just seams to be a lottery. Some get Stenotic, some Regurgitant (leaky) and some do both. I hope you have also had your ascending Aorta checked for aneurysms as these are quite common with BAV. I trust you writing down all your questions that are coming up so you can ask the Cardio in the New Year. When I went to the surgeon I had 3 pages of questions and I made sure he answered them in a way that I could understand before I left.