Paul's Journal

Steve Farthing  They can sometimes repair in the cath lab: https://my.clevelandclinic.org/health/articles/paravalvular-leak-closure/treatment-options

Lilly Black  Is that you bike riding/racing in the pic? I am beginning to feel different types of heart beats. Just last night, I poured myself a glass of wine, sat down after a full day of work at my desk, and was feeling quite good. After 15-20 minutes, I started feeling breathless, I couldn't catch a full breath, and my heart felt as if were slowed down, but it also felt like contractions and palpitations. I couldn't tell what was happening. It was causing fear and I felt as if i was having an anxiety attack. I felt wiped out afterwards. Is that what happened? did I experience PAC? what are your symptoms? this has been happening to me quite a bit lately.....usually after a hard day's work, physical activity, or stress. I have not spoken to my doctor about it as of yet. I am going to research it. Thank you for posting this because I was having a difficult time trying to describe the feelings!

Paul Wells  Lilly that's me racing ,but 1983. I still try to ride but not when it's hot, and not fast and not far. Just trying to stay healthy.
If you fell like your having palpatations you probably are. We are more prone to disrhymia than the population.
When you think you are having palpatations lay your fingers across your radial artery at your wrist. If your pulse is irrigular or an occasional weak pulse you might have a palpatation.
But which type of disrhymia is it?
So many types of disrhymias it's hard to tell without an EKG. I have several but most often they are PACs. PACs, Pre Atrial Contractions ( Complexes).
For me and many with heart surgery. it is like having a second pacemaker.
A single cell in the scar tissue can become irratable. It will fire and start a cascade of electrical activitiy. The Atriums contracts and often the venticals follow.
The beat is a little mis timed and a little mis shapen, therfore the thump in the chest and a weaker pulse beat.
Most Drs say a few PACs a day to an otherwise heathy heart is not to worry.
But I have a compromised heart and my PACs are 19206, not a few.
Left untreated they may lead to stroke from a clot, VT, sic sinus sindrome or more.
But what to do?
Some cardiologists won't treat it. Some try to treat it with beta blockers or calcium channel blockers. But often anti arrythmics don't work. One cardiologist told me he would not treat them until.they reached 30%. At 19206 I'm at 17%. His recommendation then would be ablaition of the ectopic area. But he said this is tricky ,has possible complications and may not work.
Read the Copenhagen heart study.
I have tried 4 different meds, there may not be a treatment for me.
My disrhymias are getting more frequent and leading rise to other new types.
The cardiologists will point out that stress will make your palpatations. But the feedback works both ways. Palpatations can trigger the fight or flight response making one more anxious.
Sometimes the palpatations interferes with rest and sleep.
I find that if I walk or ride my bike I notice them less ( but they are still there). If I can't sleep because of the thumping in my chest (think of the water drop torture for days) I'll lay down, put a pillow or folded blanket over my chest, then put my headphones on and play the music loud enough to counter the thumping in my chest.
You might ask how can I relax with the headphones on loud?
Well It's less maddening than the constant pounding in my chest.

Lilly Black  I just read about the different Types of Cardiac Dysrhythmias. I don't have the serious kind that cause fainting etc. but some flutter, some pounding and contractions several times a day. I agree, with regular exercise I feel them less as if it keeps my heart regulated. I have never been told by my doctors that I have afib or arrhythmia. I would rather do everything I can to stay healthy other than taking medication, which usually makes me feel worse! I will read the Copenhagen study. I don't like listening to my heart either at night so I use a neck pillow to keep my ear from touching the pillow. I've become really good at coping with my situation and grateful for feeling quite well most of the time. I don't have unrealistic expectations. Thanks for your feedback, Paul, I learned something new. Take care!

Deborah Hudson  Check with Dr. Vinod Thourani at Emory Midtown in Atlanta. I read about a TAVR after other procedures.

Civita Fahey  I heard there were some being done at the Brigham in Boston but, bicuspids were not a candidate.. but if yours is already transplanted Im not sure

Chris Vereb  I can only recommend my surgeon of course because I am still here to say so. I went to Mayo's in Rochester, Minnesota. My surgeon's name is Dr. Kevin Greason. https://www.youtube.com/watch?v=GCsIpWJxKMI

Richard Puckett  I got an electric recliner that will stand you up if need be. I found that after I got home I could have managed without it. However, it was confortable, and I was happy I had it. I slept in it until seven and a half weeks post op. I slept well, and I didn't feel trapped like I seemed to feel in my bed at first. It's optional.

Peggy Whitecotton  I slept in a recliner 8 weeks (I'm not kidding). I got so used to that darn thing it was hard going back to my old bed. Seriously, I'm only 5 feet tall and my bed is high off the floor, there was no way I could swing my legs out to the floor. When I finally starting sleeping in my bed, my daughter found a portable bed rail that I used to get out of bed....

Steven Dean  I'm fine without. I (well my wife actually) put some pillows under the mattress for the first couple nights at home to give it a little recline.

Mary Wagner  I have had a mechanical valve for 26 years. Ended up with a 2nd surgery but it was an aneurysm. The surgeon toyed with the idea of putting a pigs valve in but he said the one in there still looks brand new. I am used to the coumadin and it is just a simple lib in the road!

Clare Auten  I am over 2.5 years post op with a mechanical valve. Other than the warfarin checks, things are back to normal for me. I am feeling great and can do whatever activities I want. Happy with my decision.

Cathleen Weed  Hi, I'm a tissue valve patient..I also did the Ross Procedure in 1994. The donor tissue pulmonary valve is still going strong 22 years later. I had an aneurysm in 2005 that caused the bovine aortic valve to be replaced. Had another bovine implanted. That lasted 10 years until August 2015. I was very fortunate to get TAVR (new procedure without open heart) with a bovine tissue this last time. So great! Will do TAVR again next time, or something even better. I have always been super into fitness and nutrition so the surgeries don't bother me much. Just happy to live a Coumadin free life. My personal preference 😎✌️💛.

Paul Wells  Cathleen, thaks. sound simular to me. Just that your ahead of me with surgeries. I'm hoping my next is a TAVR like yours. I to am fit and eat well. But unlike you , well living could not stop the pulmonic valve from stenosing and the many years of declining health before my Drs would agree for the second surgey.

Kevin Shackelford  Hi Paul, I opted for the On-X mechanical aortic valve. It requires lower INR 1.8 2.5 range. I am hopeful the current clinical trials for alternative thinners will be successful. In the meantime I will manage the Coumadin and INR tests accordingly. I am 8 weeks post op and no real issues have presented relating to INR. I am planning on picking up my routine of mountain biking and cycling before the end of the year. Best of luck on a tough decision. This group was instrumental in helping me with the decision.

Corey Sines  At age 60 you could realistically choose to go either way, with a TAVR in your future. However, tissue valves can and do fail prematurely from time to time but for sure will wear out at some point in the future. Mechanical valves can fail, but are much less likely, but with more disastrous consequences. However, your history leads me to believe your body is hard on tissue valves, so that might play into my decision. Personally my decision at age 40, I am with Kevin, I am going with the On-X valve to hopefully do Aspirin/Plavix in the near future to avoid the Coumadin/INR roller coaster. But many people manage it just fine, especially if your consistent in your diet.. But the On-X valve gives you options that wasn't there 10-15 years ago.

Barbara Laurie  If it was for life insurance I would have said,"oh yeah, your right, I don't have a heart disease!" As I slap my forehead ..
But, yes, bureaucrats..can't live with 'em. That's all. Can't live with 'em!😄

  I have not been contacted by my insurance once and when I did contact them they told me not to worry everything was covered. I still have a bill though they have not covered yet 4K and I think that is my cost.

Steven Dean  She just thinks your in this heart surgery game for fun? Maybe it's that gourmet hospital food you are after? The free slipper and heart pillow?

David C  Hahahahahahahaha...exactly...I am sure everyone on this board is just hoping to game the system with some sweet open hear surgery...

Corey Sines  Wow, just wow...please have her tell us this magic pill to make our heart valves work better, please! lol

Barbara Laurie  Paul, you're right. My surgeon said he would have wanted to see me in there at least two years ago. But, this is what happened, but good advice for others just starting out Seek other opinions. ❤️

Peggy Whitecotton  My surgeon told me that he has been trying to educate theses cardiologists in getting patients in sooner to see a surgeon. Many times they have already reach the critical stage. When my valve went from mild to severe all he said was to see him in 6 months. I got my echo reports and went straight see a surgeon. After he did a heart cath and a TEE it was determined that valve had now gone from severe to critical the valve was completely sealed and no longer working, thus, making the other valves do all the work and my heart was very enlarged. I needed surgery now. There was no way that I could have survive 6 months,. It caused a very long hard recovery and has taken a year to for the heart to get back to normal size, plus it made a higher risk . Also my heart could have damaged .

Paul Wells  Thanks Barbara Laurie and Peggy Whitecotton, and yes I have developed conditions before surgery and some of these will never go away . But for me the biggest disappointment is all those Lost Years. there were at least 5 years where I could not participate with my peers . I felt sidelined again. my most favorite activity , bicycling I could not do for six years. I can't change the past ..but hopefully someone will learn from my mistake.

Barry Kanick  Paul,,,,,,,,,I had acquired my very 1st 2nd opinion via Dr Gillinov at the Cleveland Clinic in December of 2015 when I actually knew my aortic valve opening was at 0.7 but I had no symptoms whatsoever. I felt like a million bucks health wise!!! ,,,But I knew the 0.7 reading was in the "severe" category range and it could go down hill very easily & create problems!!! ,,,,I was still swimming & then hiking the Mountains of Colorado previously in Sept of 2015. Dr Gillinov recommended getting my valve replaced within a 6 month range. They also said the tough part was committing to having the surgery done when absolutely everything seems to be just fine. You have to act on whatever your semi-annual or yearly echo "mean gradient" & valve opening numbers are specifically. ,,,,Then I went to Penn Medicine in Philadelphia for my second 2nd opinion & they practically said the same thing. I had my surgery completed on July 5th by Dr Raymond Singer at LVHN here in Pennsylvania & it was hugely successful with no side issues whatsoever. I then eventually told my cardiologist via a post op checkup afterwards that there was no way I was gonna wait till I developed symptoms which seemed like what he wanted to do!!! ,,,,I took the bull by the horns, did my own homework & consulted (3) Thoracic Surgeons directly & just told the cardiologist what my plans were & when I was actually having the surgery done. I charted my own course!!! ,,,,,,,,,,Barry

Barbara Laurie  Paul, after the back to back OHSs and five days with my chest still open.. I had over fifty pounds of fluid to lose. I was the Michelin man too!! 💕❤️💕Best Regards

Palyne Gaenir  I'd just had a (bicuspid-cause) Aortic valve replacement July 1. I guess I'm confused by why this would not be permanent. Did your replacement valve 'go bad' in the same way as the first one? Have some other problem? What kind of source valve did you have put in? Don't mean to be nosy, just curious. - Palyne

Paul Wells  I have tissue valves in both the aortic and pulmonic locations. I later found out that tissue valves can wear out for younger active people. the first pulmonic valve was a cadaver type and it stenosed very quickly by my standards. that valve was replaced with another tissue valve this time Pig. for my Aortic valve it is also tissue but it is an autograph ,meaning it once was my original pulmonic valve that was cut out and sewn back into my aortic position .being that this valve was native the body accepts it, however the blood flow has been compromised and the valve can no longer grow properly or repair itself so it too is wearing thin tattering and regurgitating . it too will need to be replaced soon. My initial surgery was many years ago, but now to treat the same condition it is getting popular to use a mechanical valve and they last much longer but have their own set of concerns. if I can clarify anything I wrote ,please feel free to ask

Rita Savelis  Sadly, absolutely nothing is permanent. Anything can happen with any kind of valve, so telling a patient that any surgery is the last he'll need is not really being honest. Hopefullly it's your last, but not certainly.

I feel for you, Paul. You didn't deserve this. Take care.

Barbara Laurie  Awesome Paul, amazing! It took a bit b4 I could stand, but my first tand, and my first walk felt so good too! Bless you.. Keep going❤️ As an aside, when they removed the Swanganz from my neck I though it was named for its shape, looong and curved. Nearly fainted when I saw it😄😄😄

Bridget Sawmiller  That is funny! Had to grab my heart pillow when I laughed, I am getting discharged today!!! Yippee!!!!

David C  Man, I could stand up and move around a little in the ICU, but I didn't really start walking until the third or fourth day post op. I thought standing was great. I only started once the catheter, tubes and IV's were all pulled and disconnected. At first I was only walking a few hundred feet down the hall and back. Then very slow loops around the step down wing. Once I got out of the hospital I started to naturally walk a bit more. Today is 5 weeks out and I walked 5 miles...it was a slow 5 miles, and spread out across multiple little walks, but 5 miles none the less.

Paul Wells  5 miles is a great distance. I hope it's cooler where you are.
I can only spend short times outside. Temp in the 90s ,index 100 to 110. I don't tolerate heat anymore. And high humidity is tough if your already short of breath.

David C  It got warm today. It's been really temperate and lovely. 110 sounds like I wouldn't leave the house!

  EF is the squeeze of the heart the lower the EF the more likely your heading towards Heart Failure which you can live in for years but EF can be improved with exercise and supplementation. You are correct.