Kris's Journal

Marie Myers  I feel your pain. That is a pet peeve of mine, also.
If people could even use the one-click-lights -flash sign, that is effective and silent. Key is to pay attention to what we are doing, in the moment. Be mindful! Thanks for bringing this up. I thought I was the only one who felt like this.

Steve Farthing  Ditto. I also vote for the lights flash option which may require checking your owners manual to configure the key fob. Noise pollution may effect your state of mind even if you seem unaware of it. Your state of mind may effect your health.

Kris Heusser  Anyone who us willing to pass this on I would be very grateful. It is not just a pet peeve of mine it is heart threatening and is causing me to go into meltdown. Last night I was awakened five times because of this. It feels like someine kicks me in the stomach everyday.
As we all know theres just so much one can take.
Thank you both for your replies. Kris

Kris Heusser  It is such a vast problem where does one even go to combat it. It needs higher level advocacy. Any suggestions Id be hugely grateful. Ive written my local paper and news station. No avail to date. Any other ideas?

Bradley Dunn  To add to this. I was in ICU, out of it. Mentally unstable. I couldn't move and yet there were cell phones around me ringing like crazy. One was Jingle Bells in the middle of August. I thought I was going to go crazy. I can't believe Cleveland allows cell phones in the ICU at all. They shouldn't.

Kris Heusser  Im so sorry Bradley. Noise pollution of Any sort is horrible and can do serious mental and thus physical damage. There is on google a noise pollution fighting organization if youre interested. I just cant think of its name right now. Just using those search words should bring it up. The last thing cardiac patients need it to be surrounded with more stress. Wishing you peace.

Marie Myers  You should talk to your doc about this. The lower heart rates may be hard for your body to tolerate, and it should be evaluated. Don't fear the pacemaker-it can save your life!

Catie B  Hi Kris. I'm sorry you're going through this. If you don't trust the pulse oximeter, you might buy one of the push-button blood pressure units you attach to your wrist. I like mine a lot and it reads the same as the ones at my doctors' offices.
After my surgery, I had post-operative afib and we had a tough time regulating the metoprolol. It was needed for the afib, but my heart rate kept dropping too low, even into the 30s. I had to be on the smallest dose possible. The afib gratefully resolved in a few weeks. Currently, I keep Metoprolol on hand to take as needed--for times when I get prominent palpitations. I always have to check my BP and HR first, because sometimes one or both are too low for me to take a dose.
I have an excellent interventional cardiologist, so implanting pacemakers is in his purview. He told me in '16 and again at my visit late last year, that I may need one someday and he has been very reassuring that people live a very normal life with pacemakers. My heart rate when I'm relaxing on the sofa is often 50-55. But importantly, I don't have any symptoms.
It sounds like you may be experiencing symptoms from your bradycardia and if you are, these could become dangerous. Not trying to scare you at all. It's just that you don't want to become dizzy or briefly pass out and risk hurting yourself with a fall. So, like Marie, I'd encourage you to go in for a checkup with your cardio.

Kris Heusser  Im so sorry my response here is delayed. I realize it
is off topic from valve surgery but for me its all interelated. Marie, I find although my pulse is low according to the oximeter my oxygen is good. The problem comes in that when I do too much in a day or exercise touch my pulse drops and I feel weak even if the oxygen is good. Im working on it. Doc knows. I was looking here to see what others do but diesnt so far seem to be a very common issue.
Thank you both.

Catie B  I don't think you were off topic at all. If you have symptoms from the bradycardia, it's important to be checked. I'm glad you have made your cardiologist aware of the issues you've described. Wishing you the best...

Herb Greenberg  According to my cardiologist, there is a huge amount of subjectivity, ranging from the actual points where measurements are made to, I suspect, eyesight. My most recent echo showed a significant change in left ventricle measurements. The initial readings were by the echo tech, who is regarded as very good. But because of the change, my cardiologist read it; he also had the chief stenographer read it. They both, independent of one another, came up with a less alarming figure - but still grade 2a, however, just over the tipping point rather than something more dramatic. We planned on another scan in three months (a few weeks from now) and he specifically said, "This is all subjective."

Steve Farthing  The images are not very precise, nothing like a photograph. And your repaired valve could possibly be functioning better recently compared to last year if you were referring to two echos done a year apart.

Mary Woods  Yes it's my understanding that it really isn't an objective test. My leaky mitral valve bounces around between moderate and almost severe. Consequently I sometimes get told to prepare for surgery in the near future and then I get told they'll leave it a bit longer. It's a very uncomfortable place psychologically.

Kris Heusser  Thank you so much for the feedback. What you both said I suspected but Wow leaves me feeling so in a limbo. Not sure who to believe. My doctor has great credentials but I tjink she leans towards not wanting to be alarmist. Not sure if that's a good thing or a bad thing. All I can say to myself now is ....life is unpredictable anyway even with a good heart. Thank you again.

Jill Mullikin  Our cardiologist and our surgeon have read my son’s post surgery echo radically differently. The surgeon says very mild but the cardiologist says mild to moderate. Who to believe? I don’t know but his left ventricle is normal size so whatever it is it’s not an actionable level so I just hope it stays stable.

Willie Radl  Yes, there can be discrepancies and some of it can be the echo tech not getting the right angles etc. I had three echos done within a 3 month window before surgery and they were all slightly different to some degree, LV size, EF, aorta size, etc. ....but still bad enough that I needed surgery lol.

Kris Heusser  By the way, one more thing if i may? I live in NY in the Westchester area and would like to meet people in the heart community real time? Where I am there is surprisingly a lack of real time support groups.
If anyone knows of any groups or is in this area I'd love to talk.

Thanks so much
Kris

Gerald Poulton  Hi Kris, you should get replies under this post and they should show up by your name at the top right of the page, a red heart will be lit showing responses to peoples posts and yours. There is a life span of repairs like anything else in the body and so many reasons for the failure. I recommend talking to your doctor as ever case is different. All the best 🙏

Marie Myers  I know in our area of South Florida, there is a live support group at each of the hospitals that do open heart surgery. Hopefully you can find a local group, or you can get support here. This is a great place for questions, comments, ect. All the best to you!

Rita Savelis  You can try doing a "search" at the top of this site using key words and find past threads/info about redoing mitral repair.
Take care Kris. Sorry that you have to go through this again.

Lisa Ferguson  Hi Kris - I also had a mitral repair and my valve started leaking just a few months after surgery. I am getting close to 2 years since my surgery and I have a moderate leak (not small!). Your docs are probably going to monitor you and see how your heart handles the leak. You could live with a leaking valve for a long time so it really depends on the affect it has on your overall heart function. You didn't say if you are having symptoms or if they just caught the leak on an echo test? In the meantime, check out WomenHeart support groups - there are several in the New York & New Jersey area. You can find out more here:
http://www.womenheart.org/?page=Support_Networks

Kris Heusser  Hi Lisa,

Thanks so much for your response.

I am signed into Women Heart but they do not have anything in my area of NY ( sadly so ) Kind of astounding being that Im 45 minutes outside of NYC in Westchester County . NYC is too expensive for me to go in and out of often. I do have a woman I'm phone connected to but her issues are somewhat different than mine. Thanks though for the suggestion. :)

Amazing isn't it that we go through all we do for surgery and they don't do it adequately the first time. Inexcusable!!
So you have not had any subsequent treatment after surgery?

I also find myself wondering if it can leak to, ie for example, a "moderate" stage and then not escalate further?

I am not at this time having symptoms, but I've also have had AFib and Flutter which has hugely enlarged my two upper chambers so I can't afford to let things go indefinitely. I don't want to wait til I get to the point of symptoms because that could mean more damage. I have been diagnosed with cardiomyopathy right now also. Doc never told me flutter left untreated could cause heart damage. ( needless to say I'm now looking for another doc!)

One needs to learn to live with uncertainlty? :(

Just throwing the rest of my history out while I'm at it .I've had two ablations for the afib which the second one seems to have taken.
I am very grateful for that.

Anyway I guess its one step at a time.
Theres my rambling :)

Kris H

Kris Heusser  Im not at all sure Im putting this in the right place but......

Hi Gerald, I wonder then if mechanical valves are less likely to fail long range. I do know they can be a pain and risky with blood clotting but I already am on warfarin, so if I had to repeat, might be better that way.
Any mechanical valve people who can comment on that?

Hi Marie,
Only one of the hospitals in my area has a group and I haven't found it to be a particularly good one. There is minimal patient interaction. Its more geared for presentations. I seriously am beginning to think of starting a peer group myself, but not sure what the risks could be


Hi Rita,

Thanks for steering me in that direction.
I can take a look :)


Kris

Gerald Poulton  Hi Kris, Mechanical valves do fail on occasion but they normally last a lot longer in years than a tissue valve, and probably a life time. If you are already on warfarin than maybe it is a good choice for you and hopefully your last OHS. The only other issue of a mechanical is the clicking noise but from what I learned, nit everyone hears it and most get used to it. A good conversation to have with your doctor but I would be surprised if he doesn't recommend the mechanical. All the best with your decision and your pending surgery.

Rita Savelis  I have 2 mechanical valves. They are supposed to last a long time. I didn't have much choice because my heart and lungs have damage/scarring from childhood radiation cancer treatment. More surgery is not advised if it can be avoided.
The sound is really not a problem. (Listening to a partner snore is much worse). Many patients are very aware of their hearts beating after surgery, even without mechanical valves. And one gets used to anticoagulants, as you know.
They get lots of bad press from those not on them.

I personally, also had difficulty finding any kind of support group that I could relate to. My cardiologist was not helpful for that! Perhaps it's France. I found cardiac rehab helpful if only to be around patients (a lot of them older men) who had had a similar experience. But I do think women have a very different experience with OHS. I found going to a therapist helpful because there was so much that needed to be said about my side of the story that doctors really had no time or inclination to hear... I needed a lot of time and talk and writing to come to peace with all that had happened. And qi gong, and meditation, and dance classes and this website, which I call the heart facebook.
Take care Kris.

Kris Heusser  To anyone who has written and I have not gotten back to I apologize.
My brain overloads fairly easily lately.

I do have a question. in the email Adam sent out he refered I believe to a woman named Jean who has dealt with mitral re repair, How do I contact her?
I must seem like such a dolt here but although I know how to post on my own journal how do I contact others?

Also, so when you respond to someones comment here you respond on your own journal not go to theirs? ( I have brainfog ) :)

Kris Heusser  And one more question, Does anyone who lives in the NY area know which is the better heart valve hospital Sinai or Presbyterian? Ive seen varying things
Thanks much !