Donna's Journal

Debbie Bentley   In the beginning mine really bothered me . I'm 6 months post op and I'm finally getting use to the sound. At night Is the worst . I can only lay on my right side and i have a noise maker running .

Clare Auten  I am almost 3 years post op (1/9/2014). I have a mechanical valve. Night is the loudest. I am like Debbie and prefer to lay on my right side. I really don't hear the valve most of the time anymore. It did take a while to get used to though. It is early in the journey for you. I am glad I did mechanical as I wouldn't want to do surgery over. I have 3 kids ages 16, 10 and 7 who keep me busy. I also work full time as a special education teacher plus some side work a couple nights a week. I have done 3 half marathons post op and find that life is as "normal" as can be. Be patient with yourself, OHS is a major life event. It will take time for you to heal mentally as well as physically. Don't be afraid to seek counseling or support from us if you need it.

Rita Savelis  It's still so very early for you, you still have the emotional trauma of surgery to get through. Mechanical valves (I have 2) take getting used to, as does everything. When it is very quiet I hear mine. I tend to put a small pillow to my chest when at home, quietly reading, so I won't be aware of the sound.
It is easy to get caught up in second-guessing your choices. There is no right choice - each choice brings its problems and good things as well.
These days I am less aware of the ticking, and more aware of a fast pounding heart. I guess I have gotten used to a general awareness of the heart in general, something I NEVER thought of before. So that's different. One gets accustomed to everything but the transition time is hard. Very hard.
I have no trouble sleeping and after all those post-op weeks of having to sleep on my back after surgery, Ican now comfortably fall asleep on my back. My husband's snoring is much louder than my valves so I forget about my heart.

Meredith Bray  I got SO frustrated after my surgery listening to my tick tock. I couldn't sleep more than a few hours at a time. I couldn't get comfortable in bed. I was irritable and cranky, and those hours of laying still in bed so I wouldn't disturb my husband - all i could hear was TICK TICK TICK. I started counting. 1 2 3 4 5 6... I started falling asleep with headphones on playing soft music so i couldn't hear it. Lord have mercy, I CHANGED CARS because the angle of the windshield reflected the sound right back at me, audible even over Metallica turned up.

Four months later at a family reunion, my nephew says from across the table, "Auntie M, I can hear you ticking like Croc!" Hmm..I couldn't hear it. Niece next to me couldn't hear it.

My point is, it changes. Initially it is very noticeable. Then you get used to it - like living next to the train tracks or on a busy road.

Nowadays, I can only hear it if I stop what I'm doing and really listen for it.

What are you grieving for? I miss my unscarred cleavage, myself. My husband says he doesn't notice it, but yet - THERE IT IS. We all have our own journey to make, and we have to find out own path. After my surgery we planned a family reunion, so I had something to look forward to - seeing loved ones and trying some new adventures that I couldn't have done before my surgery. Try planning something exciting for the future, about 3 months from now or so, you should be back close to "normal" and ready for something fun - a reward of sorts.

Regardless, we're here for you, whether you're thrilled or struggling. Let us know how we can help!

-Meredith

Juergen Li  Donna - congratulationsto your very precise working heart valve that will last and function without degradation for the rest of your life. Yes I also have/had to get used to the feel but always also admire the precision and accuracy of that valve. When it closes it is closed - therefore the click. No degradation over time, no worry in 10 years or so that there is the steadily increasing chance for another surgery. You made the right decision.

Catie B  Tissue might not have given you peaceful, non-heart-conscious nights. From someone who received a tissue aortic valve and graft for an aneurysm in September,.... Even though I don't have ticking, I've found my heart to be very distracting when I try to rest. It has felt like it is beating so much harder than it ever did before the surgery and seems to reverberate through my whole upper body and into my neck. Those strong sensations have kept me awake, especially in certain positions.
As for the ticking, I wonder whether you might find a white noise machine helpful.

Rita Savelis  Meredith, I couldn't agree with you more, especially the sentence "what are you grieving for?" - there is much to miss. I miss life before a pacemaker bulge, amongst other things.

And Catie B - I certainly can relate to the loud beating. It takes time to not let that be one's focus. To just let those strong sensations be there.

This thread has been helpful to me. Thank you all for sharing.
Take care.

Stephanie Jones  i had valve repair, but if replacement was needed I opted for mechanical and would do it again in a heart beat. here's why: the tissue valve is only temporary... which means it would be gradually changing, getting worse again and would need another replacement within 7 years. Its not just going through surgery again.... its having your heart overworking and changing as the new tissue valve declines. i've always used quiet noise apps to drown out sudden noises which may wake me, maybe this will help you. It would bother me if I had to hear the valve clicking, I don't and wouldn't want the constant reminder that my heart has moving parts or issues... it would be a constant worry. I hear skinnier/smaller framed people are more apt to hear that click. I hope you get some relief soon.

Civita Fahey  Hi Donna, I'm from Northern Mass and I also have been faced with having surgery at some point, I have a bicuspid valve and moderate/severe stenosis.. I think we all go through the fear when first diagnosed and all have the exact same questions and fears that you are showing. I had myself on my deathbed and feeling like I would never see my children get married and never see grandchildren.. But, as I did more research and found this site and read all the amazing stories and successful outcomes, I have become less fearful and anxious.. everyone here is willing to share their story and send you any advice they can give.. they are all very supportive.. We have to live with this issue, but, as my surgeon said to me, its totally fixable. I have not yet had surgery so I cant say what its like on the other side, but I too have the same fears.. will I be the same person? will I be able to go through life as I have? Other people who are on here will I'm sure respond to you and let you know that YES we can be the same person.. As far as doctors, I'm going to Boston either the Beth Israel or Brigham and Women's I don't know of any in Maine.. Is Boston a possibility for you?

Tim Goff  Donna,
It is all pretty scary at first, no doubt. I spent a week at MA Gen about 18 months ago for a mitral valve repair and MAZE procedure. Dr Serguei Melnitchouk was my surgeon there. He performed a flawless surgery and was and excellent physician as well. I would highly recommend him and the team there. Though my condition was different I'd be happy to help.
Please feel free to shoot me any questions you may have.
Tim

bob stoltz  Dear Donna,
I had the same concerns you have now three years ago. I had the aortic valve replaced, the tricuspid valve repaired and a triple by-pass and pacemaker wires installed. That was all done in Oct.t 2013. I had a biological valve installed(PIG) no blood thinners required.

I recovered completely, in much better condition than I was ten years ago. I exercise daily, jog, bicycle,weights etc. I have no pain, plenty of energy and am very happy!! Go for It!! The initial recovery was difficult, but alter that everything else has been great. I am now 85 years old and happy to look forward to many more years of happiness. Bob Email bob_stoltz@yahoo.com

Amy Steele  Hi Donna! First, you have to stop and breathe... Yes, it's overwhelming. Yes, it's terrifying to suddenly realize that you are facing major surgery to fix an organ that you cannot live without. You are on an emotional rollercoaster. Believe me, everyone on this site has been or is in the exact same place as you are now. I didn't find out unexpectedly, but have been living with the knowledge all my life that I'd need my aortic valve replaced 'someday.' It was determined that it was time to replace my aortic valve last Spring; on top of that, I also found out that I'd need my aortic root replaced and that I needed to have an aortic aneurism fixed too. This was a much bigger surgery than I ever imagined I'd need. I didn't have the option of repair or even minimally invasive surgery, but the surgeon would have to open me up to do everything he needed to do. I'm only in my early 50's and a mechanical valve is usually recommended, but I chose a tissue valve because I don't want to be on Coumadin for the rest of my life. I will most likely require another surgery during my lifetime, but feel that being on Coumadin is a higher risk/cost/inconvenience for me than it's worth. I'm counting on cardiac surgery to continue to progress and that I'll have better options in 20 years or so... I had my surgery just four weeks ago, and I've been home over three weeks and am doing well. Remember that YOU have the final decision on the type of valve and when to have surgery. I would definitely listen to the advice of the doctors, but at the same time, if you feel strongly about a type of surgery or valve and the surgeon doesn't 'do' that kind of surgery or recommend what you want, you can always find another doctor. Do your research on surgeons and hospitals and find a doctor and facility that you feel comfortable with. I seem to be one of the minority on this site that didn't travel to one of the bigger name hospitals, but had my surgery done at a local hospital. My surgeon was great and the hospital too... Keep asking questions. You'll find someone on this site who can answer pretty much any question. I hope we can all help alleviate some of your fears...

Donna Thompson  Thank you all for your compassion and kind words. Just knowing I'm not alone makes a big difference.

Meredith Bray  Read the books! Order Adam's Book, "The Patient's Guide to Heart Valve Surgery!" I found this site by reading the book. I also recommend Cohan "Coping with Heart Surgery and Bypassing Depression: A Family's Guide to the Medical, Emotional and Practical Issues." Both books are not difficult reading, and were an invaluable resource to me, my husband, and my parents.
-Meredith

Phyllis Petersen  I'll add my quick two cents. It is scary. You are not alone; the people you will meet on this site will be there every inch of the way. Find a surgeon that you feel fully confident in and get it done. The emotional roller coaster will probably continue right up until you're on your way to surgery, but despite some setbacks that people have had (and most of these are known possible issues), you'll see from reading people's journals that most people have very positive outcomes.