Not such good results

[Paleowoman]

Hi everyone,

I've not been around for a while, I suppose trying to put everything to the back of my mind. I went for my annual repeat echo last week expecting the pressure gradient to have increased just a little as in previous years, but this time it has gone up quite a lot, from 43 mmHg to 51 mmHg. Straight away the cardiologist said that he thought we might be talking about surgery in a couple of years.

When I got home I looked up details about surgery, what happens that kind of thing. I also looked at posts here from the post surgery section and I am so depressed about all this. I have osteoporosis and I am petrified that bones will fracture during surgery, for example when they move the ribs. Also how my sternum will repair with my poor bone density. I have a horror of things being put down my throat and the thought of waking up on a ventilator........ I also have diabetes but that doesn't bother me so much as I'm sure the hospital can handle that. That makes me sound a wreck but I feel healthy and I am a fit 57 year old.

I am wondering what I have done wrong that the calcification and stenosis has got so much worse (it's a BAV) - even my cardiologist was surprised as he was expecting things to change very slowly for the time. He's now scheduled me to come back for repeat echo in six months instead of twelve.

I should have asked the cardiologist more questions but didn't. I do serious weight lifting and I don't know if that's okay. I don't have any symptoms of dizziness or breathlessness and the cardiologist said my heart muscle is fine, not getting damaged.

How can I get on with my life right now ? I can't stop thinking about all this and it's affecting my mood badly. What do others do ? Or what did others do if they've had their op and are recovered now ?

Anne

 

[Duffey]

Is the 51 peak or average gradient? What's the valve opening? I don't think that you have done anything to increase the amount of stenosis. It's just inevitable progression of the disease.

Since you can't stop the progression of the stenosis, I would try to focus on what you can influence. Have you asked anyone about the osteoporosis and any possible impact it will have on post-op healing?

I did not wake up on the ventilator; many do not, so that's one outcome that may never happen.

We all have worried about facing valve replacement. The only thing I can say is that the worry does nothing to slow the stenosis, and as you say, it affects your emotions in a negative manner. Worry is counterproductive and a waste of time. I would suggest you try to live more in the moment and dwell less in the "whats to come". Sort of like "I'll cross that bridge when I come to it."
It may not help the stenosis, but it will greatly improve your overall sense of well being. Good luck!:smile2:

 

[DeuxofUs]

Paleo,

BTW, is your name based on how you eat?? Excellent diet as I eat pretty much the same.

Anyway, there is NOTHING you have done to make this worse. This is a progressive disease and is out of your control. Although, I have read and been told to not lift heavy weights until after my surgery. I would ease up on that part if I were you.

Just so you know, I have been struggling with a lot of anxiety lately too. I am newly diagnosed and in the past year, I have degraded as well. I have to go back in 6 months. My guess is that my surgery is in less than two years. I can just feel it. I know.

In fact, it's on my mind CONSTANTLY and I am trying to deal with this new reality. It is true, worry won't change things. I try to live in the moment but I think mine is more mourning the loss of what I thought my body was... to what it is now. I was angry for awhile "at my heart" but then I thought, you know.. it's MY heart even though it's defective.... it's kept me going for 41 years. Now it's my turn to give it a little love. I'm doing all I can to find the surgeon that I want.... so that when I am ready... I won't have to worry too much...

Know that you are not alone.

 

[Paleowoman]

Hi DeuxofUs and Duffey,

Thanks for your replies. I'm glad it's not just me who feels anxiety about this. Yes it is a kind of feeling that my body is not what I thought it was, DeuxofUs, and that I don't really trust it. Even my diabetes is genetic, I've never been overweight nor eaten a junk diet - my endo couldn't understand it and says it's genetic.

I don't know if the pressure gradient is peak or mean - I'll get back to the cardiologist about that and also about the weight lifting. I've also contacted an osteoporosis nurse to ask how surgeons deal with people with osteoporosis. I'm glad to know that not everyone wakes up on a ventilator.

My name is based on how I eat yes I've been eating Paleo since about five years. I am intolerant to grains and dairy so I cut them out and discovered that I was effectively eating 'Paleo' ! After I was diagnosed with diabetes I had to cut out most fruit as that is too high in carbs, so now I eat meat, fish, eggs, nuts, non-starchy veggies and healthy oils - I eat extremely well too.

I'm so glad I'm not alone in this.

Oh - my cholesterol has risen very high just in the past six months - from 7.1 (274) to 9.4 (363). My HDL is very high too, 3 (116), which is protective. I wonder if the rise in cholesterol is related to the rise in the pressure gradient as they are rising higher together ? If high cholesterol is a symptom of heart disease, rather than a cause, as some doctors believe, then I might be kind of proving it.

 

[Mentu]

Anne, don't panic. A very natural response that many of share with you is wondering "What did I do to cause this?" The calcification of heart valves is not the same disease process as the development of arterial disease. In truth, no one knows what causes it. There appears to be no correspondence between diet, exercise and the calcification of heart valves. It is also true that for many of us it seems to be in our genes. In my case, I share my valve problem with my Mother's brother and their father. Probably, one day the mechanism that causes stenosis will be understood but it hasn't happened yet.

It is only natural that you start thinking of the "questions that you should have asked" after the fact. It is not too late. Write out your questions and send them to your cardiologist. Your cardiologist is your employee; you are not his servant.

Duffey asked about your pressure gradient and your valve area. Do you have a copy of your test results? That would be a good place to start. In the FAX to your cardiologist transmitting your questions, request that the office send you a copy of your echo-cardiogram. By keeping a copy yourself, you can monitor the progress of your heart valve and have a better idea of where you are on the spectrum of No Surgery......Surgery. Your questions about exercise should definitely be on the list. You and your doctor together must make that determination since the two of you know the details of your health.

I would also urge you to keep your family doctor informed and aware of what is happening. I found that my doctor did a much better job of both informing me and helping me deal with the approach of surgery than my cardiologist ever did and I like my cardiologist. Self reliance is fine in its place. Now, you must begin building a support network and starting with your own doctor is a good step. If this news is fostering the kind of anxiety that keeps you from living your life, then it is already time to speak with your own doctor before this gets out of hand. It is not healthy to allow anxiety to rule your life.

Your primary job with respect to your body is, in my opinion (for what that's worth), to stay as healthy as you can and in doing so lay the foundations for a good recovery when the time for surgery arrives. I would urge you not to be passive but to become knowledgeable about your disease so you can be a participant in your own health care. Another thing you can do is to talk about what is happening and how you feel about it with those who matter to you; you can also bounce thoughts off this community of which you have now become a part. Welcome aboard.

Larry

 

[Paleowoman]

Hi Larry,

Thank you for your reply ! Yes I'm still panicking and thinking I must be able to do something about this. This afternoon I ordered some vitamin K2 just in case it can help with calcification on the bicuspid valve as I know it's supposed to help with degenerative calcification - well Dr William Davis of the heartscanblog says it does. It will help with my bones regardless so won't be wasted - and I do want to get my bones as strong as possible.

I don't think I can get copies of the echo and I don't seem to get results like some of you do here. I wonder if that is because I'm in the UK and things are different here in medicine ? I do see my cardiologist privately via Bupa and not on the NHS, but still I don't get a print out of the test results - I saw he had a series of photographs from the echo, no computer printout. I did ask him for the size of the valve area and he said he doesn't measure it until the pressure gradient is more.

I only get a copy of the report my cardiologist sends my family doctor. I have made an appointment to see him, yes, and will tell him of my anxiety about all this so he realises.

I've begun talking about my anxieties to my husband and to a few friends - this is the first time I've let people know my anxieties, I'm the type of person who puts on a brave front normally. I don't want to worry my husband more than he will naturally be worried though.

Yes, I'm going to stay as healthy as possible so as to aid recovery when the time comes !

all the best,
Anne

 

[Paleowoman]

Have you asked anyone about the osteoporosis and any possible impact it will have on post-op healing?

I contacted the National Osteoporosis Society about fractures and they have sent some helpful info, though it's not very reassuring:

Firstly in terms of operating on osteoporotic bone this is not usually a big issue and specialists such as orthopaedic surgeons are doing this all the time and are very adept at working with weaker bone. However in answer to your question about open heart surgery, this type of procedure by its very nature is going to involve a fair amount of force to the chest cavity and for someone at high risk of fracture, the potential for fractures cannot be ruled out.

As an aside, the length of time on the operating table (or positioning and transfers from hospital bed/operating table) may also have a bearing. We, for example, occasionally hear stories from our enquirers about how easily they have sustained spinal fractures from seemingly innocuous movements such as rolling over in bed. Not everyone with a diagnosis of osteoporosis is going to be this susceptible to fractures and I’m certainly not suggesting that this would apply to your circumstances or necessarily happen if you have cardiac surgery. However everyone’s risk will vary and will be dependant on a range of factors. Very strong risk factors would include a previous history of fracture -especially multiple fractures, older age, corticosteroid use etc.

For individuals at high risk of fracture requiring surgery of this type, a full discussion with their GP/rheumatologist in liaison with their cardiac surgeon would be important.

Still, it's good I can forewarn doctors etc

 

[seabubble]

Hi Paleogirl - I just had my BAV replacement surgery done on April 1, 2011. I had the minimally invasive procedure which didn't involve my sternum at all. Can you check with your cardiologist to see if this is a possibility in your area? I briefly remember them removing my breathing tube but it's just a flicker of a memory - I have none of actually being awake while the tube was in. It's going to all be ok.

 

[Paleowoman]

Hi Seabubble - That is really interesting about the minimally invasive procedure - I shall definitely ask. I'm glad the tube thing was okay too. I am feeling more reassured the more I read the forum

 

[Jkm7]

Hi Anne,
There is nothing you have done to make your valve deteriorate more.
We have a saying here that seems to often prove true.... "The worse your valve is the faster it gets worse". That is, indeed, what happened with my valve. It was stable for some time and then when it started to get worse, it did so quickly.

The advice to keep yourself as healthy as possible is excellent. A simple daily walk can make a very big difference. I am a walker and all my nurses and doctors indicated my relatively easy recovery most probably was helped by the walking I did both before and after both my surgeries.

 

[Paleowoman]

I do lots of walking, at least 3 miles per day I'm also still doing weight lifting, though I will check with my cardiologist about that when I see him the week after next. I decided to schedule a follow up appointment as I have lots of questions for him regarding the echo and how he estimates when intervention is required from the echo as my endocrinologist told me that the pressure gradient is only an estimate on echocardiogram.

 

[normofthenorth]

Anne, I think the main argument for the weight-lifting is that it generally helps keep bones strong (not to mention muscles, of course!). As my BAV was gradually deteriorating toward surgery, I was not told to avoid much until I started feeling symptoms, like having to catch my breath while doing things I could easily do earlier. Mind you, I wasn't weight lifting. . . It sure can't hurt to ask.

Virtually all of us have dreaded this thing a lot in advance, and found it much less dread-worthy during and afterwards. When it's happening, it's happening, and we deal -- what's the choice? And afterwards, things keep getting better, so many of us find that easier than the anticipation.

It's true that the Docs don't usually rub our noses in the fact that you'll have a fairly long rehab/recovery time before you're ready to click your heels together, but it's still all in the right direction. At 4 months post-op, my walking is better than ever (and lots MORE of it than ever, because of cardio rehab), I'm bicycling almost as aggressively as normal, and I've been downhill skiing two separate weeks. I almost never feel anything "funny" out of my chest any more. No running or sports yet, but it's still pretty early times. (And I expect to be racing small sailboats again, within a month!) The surgery and hospitalization are already fading memories, and the dreaded anticipation is just an old dream. The physical "game" "is what it is", and most of us win it. Don't over-concentrate on the mental "game" now, in advance.

 

[Paleowoman]

Anne, I think the main argument for the weight-lifting is that it generally helps keep bones strong (not to mention muscles, of course!).

Yes, that's the main reason I do it but I've found I love doing it too ! It's a real challenge to myself that I enjoy. But it has assumed more importance now as I've read on the osteoporosis forum I'm on that there is some risk of osteoporotic fractures during cardiothoracic surgery so I'm doing everything possible to get my bone density better, and one way, apart from the medication I take, is weight lifting and walking.

I'm glad you are recovering well after your surgery - it gives us in the 'waiting room' inspiration And it's good to know too that it's actually quite normal to feel dread in advance of this, I'm not simply neurotic !

 

[normofthenorth]

Paleogirl, I think it's perfectly normal to dread some things, and "neurotic" to dread others, or everything. Despite the reassuring stats and anecdotes showing that this is pretty impressive and successful surgery, it's also one of the most "basic" and invasive experiences most of us are going to have -- even if we ARE out cold when the most invasive part happens! No reason to beat yourself up for feeling scared about that, in my books!

I attended my sailing club's year-end Ball a few weeks before my OHS, and one of my racing competitors told me something that might amuse you, in a "gallows humor" kind of way. He said that there's a simple definition of "major surgery" vs. "minor surgery": If you're having OHS, it's major surgery. If your next-door-neighbor is having OHS, it's minor surgery!

Good luck. I hope you get to keep doing some weight-lifting pre-op, for the physical AND the psychological benefits. Unfortunately, you'll have to give it a rest post-op, if you have your sternum cracked like most of us.