Brand new to the forum.

Hello there,
well it's been exactly a year since i was diagnosed with bav disease and almost as long trying to get things under control and getting back to work, it's just not happening for me and i'm about to leave my job due to incapacity, beautiful, i'm 37 years old, previous gym freak, worked in an amazing emergency department and now it's all over. For the time being only i'm sure. I have moderate regurgitation, chronic and poorly controlled hypertension, and on top of that have runs of bigeminy, which are beginning to affect me rather too much, i never really know when i'm going to have it but it seems the more active i try to be, the more i am bothered by them. I immediately feel faint, and have fallen out of the shower on a couple of occasions now, as well as passing out into the bananas at the supermarket !!! They have only recently became painful and throbbing in nature, i've had them for so long and i have gotten used to them, they just seem a bit more ferocious these days and it pretty much ruins my day. I do get short of breath at times even doing the cleaning, but normally i am in control of my symptoms, and take some water and rest.

In fact the less i do, the better i feel, and this is a really hard concept i have to come to terms with, i used to work 50 hours per week, went to the gym after work everyday, went clubbing, had a really busy life and now i have to sometimes sit in the shower in case i pass out.

I only have moderate disease, my ejection fraction is good, left ventricle is only mildly dilated at 6.0cm, moderate regurg, and aortic root is 4.1cm

i have amazing doctors, who want to treat my blood pressure first, that is their primary focus. We have discussed the ross procedure as the best solution in the future, all the while though my life is somewhat falling apart, i have always worked, and the prospect of claiming state benefits fills me with shame.

My doctor and surgeon have told me that i am way off needing surgery for the time being, and this scares me. If i feel like this now, how am i going to feel when things progress ? Of course nobody wants to have open heart surgery but i do not want to drop dead in the shower or supermarket, and want my life back.

A bit of a whining post i'm sorry, any advice in pushing these doctors along at all ?

Mark welcome to our OHS family .... I can assume that you are in London UK and not London Ontario ..... I am entering this on an iTouch and I will be more extensive on my laptop or PC but I wanted to welcome you to a great forum that Hank has created full of great.people

I just looked and you were reading my "Radical Sternectomy" thread ..... don't let that scare you as I am a very rare exception and the goal is for you to travel a smooth bump free road

It did scare me half to death, no sternum, yikes !!!!! Thank you for the welcome.

I am considering a second opinion, the brilliant old timer i see is going to be retiring soon, he is, as far as i'm concerned, the man for the job, though i fear he has no idea of the socio economic impact, doing as he says, is having on me. He did mention NHS funding and all the stuff, and will wait until the LVedd reaches 61mm, well it it's 60mm now. Basically i feel they are leaving it until i am in heart failure to justify spending the money doing the surgery on somebody so young, a bit of a whack in the chops considering i also work for the NHS. I know how the buggers work. Though i will play fair, there are many more people out there who are sicker than me, and i'd never take up a bed space from someone who can hardly even dress themselves, that would be selfish. My cardiac home care nurse specialist say i need to have surgery soon, so does my GP. Cardiologist wants my hypertension under control, which is , until i do anything strenuous. My GP says i have an aneurysm, small but there, i am 5' 6" inches and weigh 73-78 kgs, i am on a diuretic. ( i have grown a small right moob on this ) the size of the aneursym is only 4.1cm, but the cardiologist says i have a normal aortic root. Actually my recent echo says the root is 4.1cm ( last week ) and the last one was 3.7cm ( October). Now i'm wondering whether this painful throbbing when i go into bigeminy is that, i've never had pain before, pressure yes never any pain at all. I have only started feeling pain the last couple of months. I see the cardiologist on the 15th of next month and will ask. I'm sure i have nothing to really worry about, i just get fed up with feeling tired and lacking any oomph. I only have moderate disease, doesn't seem at all fair. I shall stop with the moaning now, brilliant forum to find by the way....

AHHHH I SEE, LABILE HYPERTENSION IS VERY COMMON IN BAVers. THIS IS WHY THEY STOPPED THE DOBUTAMINE ECHO, AND STRESS ECHO SO MANY TIMES.

Hi Mark and Welcome, It wasn't until I got until this last post of yours that I realized that you must be in the UK when you mentioned the NHS, which obviously changes how you go about getting your medical care vs. us here in the USA. I, too, was going to say I would definitely be searching out a second opinion. In no way do I think it is acceptable that you are bad enough that you are going to have to leave your job, but they aren't willing to do anything to help you.

You mentioned having rhythm problems, have they had you wear a monitor to see exactly what's going on with them? Have they suggested any treatment for them? Having struggled with them myself, they may be the main cause of you feeling so poorly at this point. Of course, with surgery, they may go away, but, since that's not on the horizon, they could try and treat them with drugs. They like to brush them off because they say they are "benign", but they truly can make you feel terrible. They can even do an ablation to try and get rid of them permanently, but I have a feeling that's not going to be in the cards on the NHS right away.

I wish you the best and hope that you can find some solutions that don't include quitting your job at age 37 and doing what...sitting at home until they decide surgery is the right thing? I just hate that for you. Good luck.


Kim

Hi kim, and thanks so much for the reply. Yes i am here in the uk. No it isn't acceptable that i have been left in limbo. However out beloved nhs is being pulled apart at the moment, not only are us healthcare professionals losing our jobs, funding is being cut and £20 billion in savings need to be found within the next two years. That aside, due to me being off sick for so long and my hospital not being able to redeploy me elsewhere due to staff cutbacks i am facing being dismissed due to incapacity, though not medically retired from the nhs itself. It's a very difficult position to be in, and now i really see things from a patient's perspective, and will of course be able to relate to patients much more holistically in the future, gosh i rattle on. Yes i have been holtered, and the arrythmias originate from the left ventricle, the one that is dilating. Yes they make me feel poorly, though are usually short lived, at rest i feel absolutely fine apart from the odd palpitation, when i exert myself for anything more than 15 minutes, i start to feel exhausted and a bit light headed. It's getting this across to my doctors. I have gone from being somewhat of an athlete, and a full member of society, to this tired pale and down person. Just not me. I rest i feel fine, i work or walk too fast to the supermarket , and i feel awful c'mon, am i making myself clear docs ?

I don't see them as benign anymore, i did, and just got on with it, now they are painful and pre syncopal , that is my red flag, my heart is telling me to stop immediately. I know my body. I trained it for years and years.

I just don't want to rely on handouts from the government who is destroying the nhs. I want to look after others again and not be sitting at home feeling like a pensioner. If i could pay for the surgery myself i would, they would have operated on me by now, but i have nowhere near £100k and will never. It's a bummer. I envy your medicare system in some ways.

I found this paragraph in one of the references for "bigeminy" after doing a Google Search.

"All of us at one time or another experience occasional premature heartbeats. In isolation, these are not usually reason for concern. It is useful, however, to have an understanding of what can precipitate premature heartbeats, including bigeminal heart rhythms. Increasing age, tension, anxiety, overeating, exercise, and stimulants such as caffeine, tobacco, alcohol, and over-the-counter decongestants are all associated with greater frequency of premature heartbeats. Medical conditions may include an overactive thyroid and/or abnormal electrolytes, such as low potassium and magnesium levels. Even prescription medications, like diuretics, can deplete potassium and magnesium levels in the normal course of treatment for high blood pressure and cause increased numbers of premature beats."

Bottom Line: Are you doing what you can to minimize your 'triggers' and have you had your electrolytes checked to be sure they are where they need to be?

I get my bloods done every few weeks, on Spironalactone. K+ is fine, and within normal limits. All bloods are fine. Whenever i exert myself is the problem, this kind of arrythmia shouldn't cause you to feel faint or be painful and it's not also flip flop donk i've had SVT's also, that's what started the road to diagnosis. I suppose anxiety might not help, whatever. I'm not happy. I had a shower earlier and was singing my head off and even that set it off. I just don't feel myself, can't really put my finger on it. I feel toned down. I shall wait until i see the cardiologist next month. Until i shall just enjoy my time.

It's understandable that you are feeling tired, helpless, and confused by what is going on.
I quit working about 5 months before my surgery because the thought of passing out scared me too much.
My dizzy spells were frequent and I had to sit down and rest no matter where I was, but surgery just scared me
too much so I was refusing it. DUMB MOVE on my part. Fear is blinding.
So, if you need to, call your docs every day and whine and complain, and show up at emergency care
clutching your chest while lying on the floor. Somebody needs to take you seriously.

Thanks Bina,
I should really get a grip. Surgery doesn't really worry me, because once i'm fixed, i can carry on with my life again, work, gym oh and god do i miss my running and cycling. I seem to be fine for a while and symptom free, i overdo it and wallop, man down. In the meantime, i do miss work, but they won't let me back, and cannot find me a different post. I cannot for the life of me, fathom out, that they know what needs to be done, but lets wait until a potential event, or for things in general to deteriorate. I've seen it so many times in emergency, patients come in waiting for surgery, acutely unwell, waited at home, not wanting to cause a fuss, because they have been left to deal with their symptoms by themselves, haven't really recognised that they are very poorly and it's goodnight and thank you. Perhaps it doesn't happen so much across the pond, but here, you are at the mercy of the NHS. Patients are constantly being sent home, deemed anxious, only to return in cardiac arrest or pass away in the hospital a few days later. I do not want that to happen to me, and i completely get a patient's perspective now. I shall damn well make sure patients i get to care for are confident to self advocate, and if not, i have the nuts to do it on their behalf. I miss my life, it's as simple as that. I'm certainly not going to rock up in the ED clutching my chest or call my docs every day love, i think the doctors should be made aware of the impact their recommendations have had, that i'm about to lose my job, and claim state benefits. There is no way anyone will employ while i'm like this and with my diagnosis. The postive thing is that i am able to eat amazingly well, rest loads and take up a few hobbies, i'm loving baking at the moment, and making pasta. I do a bit of yoga, light stuff and pretty much end up falling asleep on the mat, snoring my face off. I think today is just a bad day, sorry for sounding negative in any way. This forum is very informative.

Marko, I have noticed that you are able to articulate and voice your feelings welll here with the written word......can you do the same in a consultation with your Doctors? If you hesitate answering that then make up some crib notes or cheat sheets and review what you have written here and then GIVE'EM HELL and get'er done!!!!!


.

LOL, you are right Greg. Listen, for 3 years whilst at work, i kept getting chest pain SVT's, fainting and all manner of sillyness, my colleagues teased me and doctors put it down to anxiety, i lost my confidence. Until i had an episode of "pneumonia" which ended up with me being in HDU and hospital for 8 days. They diagnosed pneumonia, and asthma, fed me full of asthma drugs which gave me heart failure, it took 4 months to get an an echo and diagnosis after that. I had no pneumonia or asthma, but mild heart failure. All my doctors listened to my heart and never found a murmur, but fluid on my lungs. They missed pure aortic regurgitation. As soon as i found out i went to the best hospital in the country. I will write down what i want to happen and give them hell, even though they have treated me beautifully, unfortunately i do not "employ" my surgeon and cardiologist via medicare, i have to do as i'm told. To a point.

I am sorry you are having to deal with so much. I was wonderring if you've had a good checkup to see if there is anything else wrong beside your heart that could be making you feel even worse. Have you had your thyroid checked?

Hello, yes i've been thoroughly checked, thyroid function is normal. I am on a pile of drugs though. Maybe them ?

Mark, It sounds to me as if your heart is just not happy with what is going on and even though your "numbers" may not yet be in the severe category, they are just benchmarks and not everyone is going to hit those numbers before they need surgery, or, likewise, some can go past those numbers without showing any symptoms whatsoever.

Hopefully, you can make your cardio understand this and get to start rolling the ball forward on your behalf. I had just the opposite experience when we lived there. The cardio's I ran across when we lived there wanted to do all kinds of tests on me when they got hold of me and finally I said "thanks, but no thanks, I'm going home" and checked myself out of the hospital.

Kim

Marko:

I read your OP and responses with a lot of interest. Let me tell you, I work in a state government job (education) and let me tell you, some of the issues I have had to deal with have been nothing short of mind numbing! First, they were just fine to let me off to go have surgery under our Government FMLA law, I had a ton of un-used sick days so I didn’t have to file for disability or anything but trying to return has been nothing short of a headache! Paperwork this, doctors release that, part time, full time, its just a nightmare! All of this while they are attacking our health care benefits just as hard as they can.

In my mind, I need to get back on my job to get on the highway to recovery mentally, and physically. I pop my head in there now and again and go through the motions at work while I am on leave, but I do run out of gas fairly quickly. I am contemplating staying off for another month, but it’s simply killing me not to be able to go back. I am 7 weeks post-op and I feel good, not great, but just good.

I work in a very high stress job (vocational instructor/auto mechanic/welder) while the hours are short (only 45 hours a week). The stress over there is immense! After stepping away for a while, I am starting to understand why I’m in the situation I am in. Adding to the stress of the job, the stress of living in this country, and the stress of surgery, I, like you, am placing a lot more stress on myself because I can’t do what I want to do and am becoming afraid I can’t do what I once did.

Over here, we live in a situation where one side of our government is trying to provide Americans the basic dignity of access to quality health care without private insurance companies raping us, the other side is fighting as hard as they can to take our rights away and make us slaves to the same private insurance companies and allow them to cut us loose when we need them the most. It’s terrible! There is no middle ground!

Marco, please listen to me! I am no mental health expert and you have me beat to hell on medical knowledge. What I do know is that stress, anxiety and anger is slowing my recovery. Get your head in the right place my friend! If you’re at this level of frustration before surgery, it will only get worse after. Take my word on this, I am living it right now.

Hey there, and thank you Kim. I have absolutely every confidence with my surgeon and my cardiologist. I'm not very confident that i will stay well whilst waiting. I have an uneasy feeling. In October i had an echo and my aortic root was measured at 37mm, and last week it was found to be 41mm. I'm not sure about the measuring criteria for surgery, but after researching the forum, and if the measurements are correct, is .4cm growth in less than three months something to be concerned about ?
I'm sat here now, supine, and i feel something throbbing deep in my throat and chest, like a lump. Something to ask the Cardiologist. I haven't slept flat in months.