Thinking.....

[M&M]

Hi, well I don't know if you remember me - but I will be needing a new mitral valve. Exactly when is unknown. I have another echo in January and I failed the last two - I'm 50% leaking and my left ventricle is enlarged to 49mm.. Surgeon says when I hit 55 or have symptoms - its time - but of course its my decision...

Well, at first I was shocked and then I tried to learn everything possible about mitral valves - BUT NOW - I find myself - coming up with these 'fantastic' ideas on how to decrease the size of my left ventricle.

So, on Monday I e-mailed my cardiologist with this 'bright' idea - I said: What if we cut back on my beta blocker at night - thereby reducing my dependance on 'pacing' from my ICD and if we reduce that then my heart will have to work more on its own and thereby creating more muscle and perhaps my mitral valve will function better when it functions more on its own thereby decreasing the size of left ventricle. I thought all this made perfect sense.. He didn't think so.. :-( He said cutting back on my med will in all likelihood cause me to experience more angina and more arrhythmia. He also said; Pacing from my ICD is not causing my mitral valve and enlargement problems. NO, its from my previous heart attack - cause the heart attack was in that area.. But that was 12 years ago.. I don't know - All I can think about is how to decrease the size of my left ventricle - cause if I do that then I won't need surgery.

Has anyone found themselves 'thinking to much' about a better soltion while they are in the waiting phase - especially about how to get a better solution other than the surgery solution? I'm sure there must be a way to decrease the ventricle. I know this sounds crazy but do any of you believe in 'visualization'.. Years ago I use to do that for my arteries - you picture the arteries all clear -especially when I was exercising. My arteries at this time have no stents or bypasses. I wonder if that worked. I wonder if I visualize my mitral valve to work close tightly and my ventricle to decrease - if it will work. Sounds crazy - but I think - maybe it would work. Trouble is if it doesn't I won't know till January on my next echo and then if I fail the echo and my ventricle enlarges to 55m it will be to late to try anything else. So I don't think I should put all my eggs in one basket. But I have not had any surgeries in my arteries ever in 12 years.. Could be my diet - or could be my 'visualization'. If I put all my effort into visualization then I won't have time to think of anything else to try. When you visualize - I think you have REALLY REALLY BELIEVE ITS GOING TO WORK.. YOU PICTURE IT - I think I'm crazy and I have far to much time on my hands.. I'm totally NUTS.. But thanks for listeniing.. Oh this Saturday is my birthday - a whopping 48 years old - you'd think I would have some common sense and stop day dreaming. I'm going to run a 5k road race in Maine and its a wonderful course - with lots of runners and lots of food at the finish line - not that I eat any food - but they give away alot of prizes on their raffles.. Last year I won an hour massage !! and maybe I'll get lucky on my birthday and win something fantastic.. Maybe I'm just a dreamer !!

Best Wishes
Runner

 

[Ross]

There is nothing wrong with thinking and dreaming. Bottom line though is reality and you know what that's all about too. I tried the visualization technique myself--It failed miserably for me.....

Keep us updated when you know what's what and such.

 

[bibliophile]

Thinking, thinking

Thinking, thinking

I am not a runner but am quite a walker and hiker and sometimes biker. I try to stay active and do work full time too. I had my mitral valve replaced at age 55 and, after a lot of second thoughts and what-if's pre op, trusted my doctors and accepted their decisions. I am now every bit and more active than I was before. Hang in there and do not chastise yourself for having second thoughts. Having a doctor you trust implicitly is the main thing and in my case, made the surgery understandable and something I could accept.

 

[M&M]

Thank You Ross for sharing your dreams. Like you say: Reality is the bottom line. :-( I know I'm not 'special' or anything and I know I'm very lucky to have all this technology as it has come a long way in the last 10 years and I seem to use it as quickly as it comes. I just feel like I may be heading for the scrap metal junk yard instead of the graveyard when all is said and done. I think I'm going to feel soooo bionic. I named my ICD - **** - and so I'm thinking to make my valve seem more 'user friendly' I'll give it a name as well. I just hope the two of them get along well !! I would hate to have to send in a third machine to break up any fights. Gosh sometimes I just want to pinch myself and say this is all a dream. Just wake up and you'll see its not real. I was just starting to settle down and recover from getting 6 shocks from my ICD last summer and now this. I guess nothing surprises me anymore. I'm not sleeping well at night. But I'm sure that's normal. I get tingling in my hands - like little needles poking at me.. It hurts - I'm sure its stress. I ran 3 miles on my lunch hour and it feels so good to get rid of excess energy. I have a desk job - so I normally sit all day. I always feel great after my runs.

Thank You Bibliophile - I'm so glad to hear that you are really active - I know hearing from others they are doing well exercising to - like Mark - goodness he's got his marathon coming up October 12th I think - I can't wait to hear from him. It will be such a tremendous accomplishment for him. I've always wanted to take up hiking. My running club gets together and goes biking to. Walking is an excellent exercise. I walk on my breaks almost every day. I did read in a runners magazine that there was a woman who ran races with her ICD and I know Mark runs races with his valve - I wonder if anyone runs marathons with a mechanical valve and an ICD!! Gosh sometimes I don't know whether to laugh or cry. I'm insane.. I'm NUTS. I do think I have the best doctors in the whole wide world. I tell my EP doc that all the time.. he's truly the best - I trust noone except him. I told the surgeon this surgery is not to take place unless my EP doc is in the room or in the building.. I just feel really 'safe' when he's around.. So many cardiologists flip out over my vt's - they go absolutely NUTS except my EP doc. They don't bother him or me either.. He's really SMART.. But I know anytime they cut you open your bound to have some risks and that does create doubts. But I know I couldn't be in more competent hands. I feel safe - I just don't have any symptoms and I guess its hard to believe its that leaky. I do think your so right though - trusting your doctors makes a big difference. I just got this EP doc a couple years ago and I have felt alot better with my medical care. I'm very happy about having him to get me through this - he's very kind and patient.. but 'realistically' there are risks no matter how good you are and my vt's will make it more difficult as the surgeon said. My electrical system - does pose more risks.

Well, my boss has been at a conference most of the day and its given me a chance to chat with you all. It feels so good to talk to others who have been there and done that - and guess what It's NORMALl - Thank You all for making me feel NORMAL.. I'm sure my feelings will pass and I'll move onto bigger and crazyier than ever thoughts !!! I'm taking tomorrow off from work to have a pre-celebration of my birthday on Saturday.

Well, thanks for listening. It feels good to get it off my chest and talk with ya all..

Runner

 

[bibliophile]

Name for Valve

Name for Valve

I like the idea of naming your valve. I named my car, her name is YOlanda, last name being Honda. I will definitely think of a name but it may take some time. Has anyone else named your valve?

Again, runner, hang in there. It will work out, I promise!

 

[Ross]

I can relate to feeling bionic! I've more spare parts inside me then most people acquire in a lifetime. Lets see now, a titanium hip, a greenfield filter, numerous plugs and screens, a mechanical aortic valve, sternal wires, mostly a man made aortic arch.......

Total value--Probably pretty darn close to a 1/2 million dollars anyway!

 

[Granbonny]

Ross

Ross

And..you are worth every penny..to have you here on VR.Com What would we do without you..My Hero.. And..yes.I'm getting my flu shot next week. Bonnie

 

[Nancy]

Hi runner-

I believe in visualizing things and being positive and especially not throwing in the towel, even if things aren't looking so good. Chances are usually very high that the situation will take a big turn-around (I'm speaking in general here). I taught my kids about visualization when they were little. I use it myself. And I can do a little self-hypnosis, especially in the dentist's office. I can really zone out there. Once that overhead light goes on, I'm gone. It will help you in the long run. And it will definitely enhance your medical treatment. It cannot, however, replace medical care or medications you need. So do your thing, but also take your medications and listen to the doc.

Ross-

Joe's bionic in a big way also. One of his doctors said he had car parts. 2 heart valves, pacemaker, implanted eye lens, a couple of pieces of Goretex holding his back together,. and of course, his sternal wires. Neither of you should ever get caught in an electrical storm, LOL.

 

[Granbonny]

Yikes, Nancy

Yikes, Nancy

Never thought about being in an electrical storm..forgot my wires. Never will forget my daughter's wedding day. Poured from Friday thru weekend. Wedding was on Sat. at 5 P.M. Planned on it outside by waterfall. Guess what..at 4 P.M. rain stopped. We all went out. Guests seated..then lighting and thunder started..but finished before rain again. We all got back inside..for Wedding reception. Beautiful.. Looked down at my feet and they were green..from dyed shoes. Then my brother says to me. did you realize we were all sitting on metal chairs. The Minister was my Uncle..who had married my brother, myself..many years before He said..it was a lot of fun.. Bonnie

 

[Granbonny]

Caitlin

Caitlin

And they are coming up on 6 years. Very Happy..By the Way..My middle name is Kate..and my sister's granddaughter is Katelyn.. Bonnie Kate..

 

[Ross]

(Ain't the net STRANGE?)

Nope, not at all. Just us people that are on it are.

 

[Gail in Ca]

Name my valve????

Name my valve????

I don't like my valve enough to name it!!
Oh sure, it has saved my life, but it's a mechanical thing.
My honey, daughter, dog, cat, they all have names and nick names, and are truely loved.
Gail

 

[hensylee]

Caitlin - looks like you collect Oz books? My ex has collected them over the years because he loved them so when he was a child. He located and bought first editions for each of our children, only one of whom enjoys them. One daughter can read them over and over. She's now 50.

 

[bibliophile]

Name my valve?

Name my valve?

Gail, I think it comes to whether you like to name inanimate objects or not. Some people do and some do not. I have a habit of doing it. I used to name plants after loved ones in hopes this would prompt me to take better care of them but quit after killing a philodendron named after my dad. Still, I am thinking I will name my valve. So far it has been so faithful about ticking, ticking, and working so that I wake up every single day to hear its tinny little voice.

 

[Johnny Stephens]

Runner:

Runner:

Has anyone found themselves 'thinking to much' about a better soltion while they are in the waiting phase - especially about how to get a better solution other than the surgery solution? I'm sure there must be a way to decrease the ventricle. I know this sounds crazy but do any of you believe in 'visualization'.

While I was waiting for a surgery date, I went through several different approaches to "solving" my valve problem. My cardio said, well you can do that if you want, but you'll still need the surgery. Some things (especially exercise) he was dead set against me doing, and was fully backed up by the surgeon. I finally just had to shrug and say "OK, when do we do it?"

Re: the visualization, I used this technique while undergoing radiation therapy for Hodgkin's back in 1980. This was actually suggested by the therapy staff - I came up with the image of the radiation beams being alien warships blasting the tumor cells with their laser beams. I'm fully cured, but I don't know how much the visualization had to do with it, since Hodgkin's cure rates are among the highest for all cancers. Cured - but my poor heart valves paid the price of the radiation.

 

[Nancy]

I think Joe named both his valves "damn", at least that's what I've heard him call them!

 

[Gail in Ca]

Nancy,
Now that's funny!
You do the name Nancy proud. (It's my favorite sister's name, too)
Gail

 

[ALCapshaw2]

Hello Runner,

Whenever I see the words "enlargement" or "thickening", alarm bells go off in my head.

My cardiologist managed to postpone my surgery by a little over a year (he was hoping for 3 to 5) by changing my medications (adding Ace inhibitor) but the last few months, I was going downhill fast. I've had some post op 'challenges' that I can't help but wonder if they would have been less severe if I had only proceeded sooner before my heart had enlarged to the extent it had. SOMETIMES, when surgery is done soon enough, the heart will return to a smaller size. Many surgeons like to recommend surgery SOONER than the cardiologists advise. It may be worthwhile getting a surgeons opionion. When was your last Echo?

Since you also question (or don't want to believe) that your leakage is bad enough to warrant surgery, you may want to ask your Cardiologist about have a TEE (TransEsophageal Echogram) which produces clearer images than an external Echocardiogram.

Generally, when the plumbing needs repair, it needs repair, no getting around it with wishful thinking. Sorry for being so blunt.

'AL'

 

[M&M]

Thank You all so much for your responses. I only have access to e-mail via work and I was so excited to read the many responses this morning.. Nancy your husbands name for his valve is cute - "damn".. and I'm glad to hear the visualization works well when your at the dentist.. I'll have to try that next time I'm in it.. Johnny I really wouldn't be at all surprise that your visualization played a part in your recovery. Everything is so high tech today - and that's saving so many more lives.

I think its more of a 'zone' that works well for visualization. Anyways, I've been trying and its hard to concentrate on it - but I'm not really that focused quite yet - but the more I practice the better I'll get - actually what I do is visualize my entire heart pounding and it looks great and works great and there's absolutely no enlargement and I even picture the valve 'closing' as it should.. It's quite nice. But I can't stay there too long as my mind wonders and I move onto other things.

Thanks Quetlin for all your posts. I enjoyed reading them all - its nice to see everyone kid one another and for you all to have a great sense of humor.

Hi Al - I had my last echo in July and the one before in February - but I didn't get the February results till July - so I kind of just found out all at once and then I found out I failed my second echo in July - so it was all so sudden. I get another echo in January. I really hope to pass that echo. I did see the surgeon and he seemed nice - I only met him once. But I guess he likes to bike ride. He talked about how he wears his heart monitor when he bikes. I don't wear mine normally. I got one years ago - but it was always 'beeping' at me and so then I took my head set and played my music loud so I couldn't hear it - and it seemed rather senseless to wear it other than to get better program numbers on my ICD. My ICD - **** - doesn't know the difference entirely from a good tachy and a bad tachy - kind of works on numbers only for the most part and will shock you even if its a harmless tachy. I mean we've gone high tech - but not quite that high tech - yet - but there's a huge improvement from years ago - so I'm happy - at least I know it works. Although my EP doesn't think I should push the limits on running full marathons or competeing - I kind of like to think the machine will kick in and shock I'm pretty confident about that - its done it already - and that was for sinus tachy - which I didn't need to be shocked - but it did anyways. Actually I was running in a road race talking to these two 'hotties' and we were joking and I got all excited and I could feel the machine and so I slowed down - but not fast enough - shocked me 3 times. I think it was jelous - **** gets that way sometimes.. I'll have to give my valve a girl's name and maybe he'll be happy and find his own true love..

I just signed up for a half marathon this Saturday - as I ran 10 miles last Sunday and my plantar's fascitist (heel pain) was pretty mild - so I think I'll give this half marathon a shot. I've done 29 races this year of which 4 were half marathons. I'm surprised you all were told not to exercise - my surgeon said it was fine. Its my EP that's nervous.. Anyways, I signed up for the Applefest Half Marathon - I did it last year and its a challenging course - I'm real excited and it has given me so much to look forward to..

So glad to hear from you all - wishing you all the BEST

Runner

 

[Granbonny]

Hi Runner

Hi Runner

I am the noisy one here on VR..Would you mind posting your age, name and location.... Location is important in knowing where you live for after surgery (Like weather, ect.) You will need to be able to walk a lot..Bonnie