Julie's Guestbook

Hey Julie- Cleveland clinic told me my tissue valve would las t 10-15 years. In fact, it lasted 12 years and failed. Kind of like shoes, they wear out and you have to get a new one ! But it beats having to spend Your life on-warfin!

Hi Julie, I am so sorry I did not see your question. Yes, I did have my total Hysterectomy on Sept 21st. Recovery was a little tougher than my OHS but it went ok. Hope you are doing well and would love to hear from you.

Your story horrified me! I am so sorry you had this terrible experience. If there's one thing I've learned through all of this is that we have to research, advocate and think about ourselves first and foremost. Obviously you can't turn back time but going forward you must ask questions, understand what the heck is going on and have a strong partner with you to take notes and listen as well; whether it's a friend, parent, relative. I question the hospital's and doctor's integrity and mission with your case. I would have to try to get retribution. You will be fine with a mechanical. Things settle down with the meds as long as you're consistent with diet and even if your levels fall out of range, adjustments can be made. I still hear my valve working at times and sometimes it annoys me, like at night, but as my husband says you know it's working! Again, I'm so sorry about your experience. I was fortunate to have a relatively easy, if there is such a thing?!, replacement. I will be thinking of you and please reply if you'd like! Your son is a lucky boy to have you! You're extremely strong to have gone through all of that.

Hi Julie! I'm hoping you're feeling ok and the surgery went well. I am five weeks out of mine today. Your first five days; my first five weeks. I can tell you this.......you'll be amazed how fast the time goes and the improvements come week over week. Its hard at times, but I found reading through various peoples journals and postings helped me to know that there is a light at the end of the tunnel. Here's to a quick and healthy recovery! Bill

Today is the day! If you went in early you should be starting to come around waking up. You've been on my mind and I hope you came to peace with your valve choice. Update those of us stalking you when you can. Cheers for being on the other side!

Julie- I sympathize with your situation. It is so hard to decide between valves. I, too have a bicuspid valve and an aneurysm. Am scheduled for my cath next week. I can make a good case for both valves, but the idea of another surgery may steer me towards the mechanical. I am 63, but quite active. Sure don't want to do this surgery even once, let alone twice... Hope everything goes perfectly for you. Healing thoughts going to you!

Julie, Hello. I am in the same boat with you. Surgery pending and still trying to decide. I'm 52 w/bicuspid valve. I lean toward the mechanical, but so scared of Coumadin and possible reactions/side effects. I dread having surgery much less having to do it again. I feel your emotional distress on this as I wrestle with the same decision. My Dr. said he'd opt for a tissue and live each day to the fullest. He believes TAVR will be available for the second one. This journey has been very emotional and trying, but my faith is growing and I know there is a bigger plan. I pray for you as well to make a good decision you can be at peace with. Best wishes my heart sister.

Hi, Julie. I share your stress in deciding your valve options. I have made a good case for and against each option at one time or another. I have found a study to support both my hope or fears for each, as well. Paralysis by analysis. Currently, I am scheduled for a third option called the Ross Procedure with Dr. Paul Stelzer at Mount Sinai in New York City. see https://www.youtube.com/watch?v=YUXt7h0a5z4. The Ross is technically much more challenging for the surgeon and as such, only a very few surgeons do it enough to get really good at it. The payoff is superior blood flow through the valve; lower endocarditis (infection); no physical restrictions; no blood thinners; and a return to almost normal life-expectancy curve. The risk is taking a one valve problem (aortic stenosis) and creating a two valve issue (aortic and pulmonic valves). In inexperienced hands, the Ross risk is pulmonary stenosis (narrowing) and aortic dilation. However, these were early problems that have been worked out through experience and new techniques. But, again, emphasis on experience of the surgeon and a passion for the procedure is paramount! I have gone around with these three options and sometimes wake in a cold sweat. But, talking directly with Dr. Stelzer and two of his patients, as well as, reading testimonials from his patients both recent and 10 year-plus post Ross...makes me feel a lot more confident in my decision. I have read mostly favorable testimonials...but some not so favorable testimonials from Ross patients. The unfavorables had less experienced surgeons...one patient's surgeon had previously done only six Ross procedures before operating on him...and it was a failure. Best. You are not alone in this as this community is listening! Kevin.

Hello Julie, Just read your note and I can relate to your question. I have just been thru surgery for severe AS - bicuspid valve 8 weeks ago. Because I am 61 they said I could have a choice because of my age of having a bovine tissue or mechanical. If I was younger they tend to go with mechanical here in New Zealand where I live but my surgeon said he would recommend tissue valve and then a TAVI in 12 - 15 years when I would need another one. I haven't even entered all my details on this site yet but saw your name and your question was exactly where I was 8 weeks ago !