John's Guestbook

Good Morning John, I will be going in on the 18th for Mitral Valve repair. Just found you in the community and wanted to leave you note letting you know my wife and I will be praying for you. I appreciate the last posted message - while you have faith - we still battle the flesh and our minds. Putting on the mind of Christ is a difficult thing to do. But focusing on the word helps a lot. We will be believing for miracles for you! God Bless!

Hi John just wanted to say I am amongst many on this blog who will be thinking of you and wishing positive thoughts for your surgery. Also I too felt very stressed a couple of weeks ago but Anthony Copeland-Parker said in his journal how he found the Cleveland Hospital app Relaxation Oasis very helptful. Its free to download from their web site. I have found meditation to be an absolute boon to help with the stress levels.

Good Luck to you John. I am waiting to find out if it's finally time for me to have an Aortic Valve replacement and I understand that deep down fear you are talking about. I know these surgeries are done every day but I don't them every day so it's scary. And you, I am sure, are thinking that same way. I'm 53 and never thought I would be this close to heart surgery at such a young age. I understand your fear. Best of luck to you John. I wish you a speedy recovery.

Remember well the week pre surgery- the worst of the whole ordeal. In surgery you are asleep so no problem; post surgery I could do something- follow dr's orders, take meds with a smile, walk when asked, eat to get stronger etc. but pre surgery I could do little except focus on the unknown that was ahead. I was symptom free so I could not even count up to the day I would feel better. So I decided to treat it as a journey knowing there would be a few road bumps and detours but in 5 days the biggest bump would be in my rear view mirror. The medical team is experienced and will do its job and in one week you will have a chance to do your job. It really is a team effort. I don't even know you but sense you will not let down friends, family and the medical team and you will hold up your end. I am 4 months post surgery and, with exception of one day, the week before surgery was the worst. Best of luck and let us know when you looking in the rear view mirror.

John, I had to write a quick note. I so understand! My brother (35 yr old) had a 7mm very fragile aortic root aneurysm which was discovered by accident. He was rushed to Cleveland Clinic and had a repair and also a mechanical aortic valve. They told us it was a genetic connective tissue disorder so the other siblings had to get checked. I waited 6 months until I had my annual cardiology appt for BP and Mitral Valve Prolapse scheduled and low and behold I had one. I was 46. I went to Cleveland immediately and was followed there every three months for a year. It was TORTURE!! I am a nurse, I studied and researched everything, I just saw my brother go through with it, I was a wreck. They told me it was just a matter of time, don't want to wait too long or do it too soon due to the seriousness of the operation. I aged 5 years in one year. I have a wonderful husband and 4 kids and loads of support, that wasn't it. I worried constantly like I had a ticking time bomb in my chest. I knew I was in the best hands, but lets face it. I am a nurse, I worked critical care, I know that sometimes things happen and people die. I didn't want to die. You can't say it to your family, even your spouse- they watch and listen, they gage their reaction based on yours. I know my kids have a 50/50 chance of having the disorder so I knew how I handled the whole thing would strongly influence how they would someday if faced with the same thing. I say all of this so you know every thought you have is normal. I am a very spiritual person, I felt bad that I worried, did it mean that I didn't have faith in God? Not at all. It meant I am human. I got to the point that I thought I was crazy, I wanted it over so I could get on with life. Life was on hold! It consumed my every thought. It was the first thing on my mind in the morning and the last thing at night. I finally figured out that I was grieving. I was grieving for what I felt I had lost. I had lost my feeling of being healthy, of any assurance of growing old with my husband, seeing my kids graduate, go to college, get married and have babies. My life was not as I knew it. It was forever changed. Could I still ride the bike trail for 16 miles and trout fish? Could I still ride a lawn mower and mow the cemetery? May sound a little dramatic and maybe it is. But it was real. I was relieved to have surgery, I had even made peace with it and welcomed it. I remember climbing onto the table and kissing Dr. Svensson's hand and telling him "blessed hands". I knew I was in two good sets that November 1, 2010. As far as after the surgery, I was a little scared afterwards at times, will the stitches leak, will I have any arrhythmias, will my glucose return to normal, will my heart rate go down, my oxygen level go up, etc. (the curse of being a nurse!) It didn't help that I had a bump in the road two weeks later and returned to have a pericardial window surgery and thoracentesis for fluid around my heart and in my lungs. It all ended up being ok. As time went on, I relaxed more and more. Now, I never worry. I remember it all and think of it, but I do not worry. It is part of my story. Some folks deal with breast cancer, etc. , we deal with aneurysms. It was the worst and best year of my life. I grew more than I could ever imagine possible. I think I am better because of it. It was a life-changing event. I tip-toed to the edge, and I got to come back! And you will too! Embrace the experience to learn more about yourself and to deepen your relationship with those you love. Pray for peace. And afterwards, continue to live like you are about to have open-heart surgery. You will know what I mean. Best, Rhonda

Hey John, I was due for a stress echo in March of 2013. I knew I was having symptoms but didn't get it done until Sept of 2013. At that appoint my doc told me it was time. I had my surgery on 11-18-13. Here's the bad news: Because I waited, knowing that I needed to get it done, I caused my heart some needless stress, and the left ventricle was enlarged because of that, working way too hard. My rehab and recovery have been extended by that additional needless damage caused, though the docs and nurses tell me that in a year or so all will be back to normal. My view is you are running a much greater risk NOT to have the surgery now. Though my wife was scared of this surgery, she told me straight out, "I want you around HEALTHY for the next 30 years, get this done NOW", and she was right. There are all sorts of measurements that they take when you have a stress echo, or just an echo. One is the "ejection fraction". Anything under maybe 50% means you're in need of the valve replacement, anything 40% and under means you are causing damage to your heart. Mine was 40% at that point. Another is the measurement of you aortic root. Don't quote me here, but I believe anything over about 4.7cm means you're in danger, and it could rupture and kill you (though it probably won't at that point anyway). Mine was 5.4cm. The doc didn't freak out about it, he didn't say get it done TOMORROW, but he did say get it done quickly. So we did. Emotions are a great question. My emotions prior to the procedure were pretty flat, until the night before. I treated all my family and extended family to a great down-home southern meal in Dallas. It was a mini-reunion. It wasn't sad, it was very positive. All my close family was at the hospital, though they didn't come to my room and sit with me constantly (at my request, I prefer to feel bad alone). But let me tell you something about emotions. All the books and stories tell you to be prepared for all types of emotions, and I will tell you that whether it's the drugs, anesthesia, or the procedure itself, but your emotions will be right at the surface. Some feel helpless, some feel fearful. Mine was intense INTENSE gratitude. I have never had any "negative emotions" prior to or after my procedure. My wife, especially, the rest of my family, the docs, nurses, hospital, and United Healthcare all have a special place in my heart, and I'm grateful to all of them for the care I received. I know that had I not had this done the quality of my life would be so much worse, even just 7 months down the line. In a way we are pretty lucky. As valve replacement guys, and aortic root aneurysm guys, what we have can be easily fixed! It's not a behavior issue for us, it's a birth defect. We didn't have a heart attack, no clogged arteries, no triple bypasses. I never worried after my surgery about my new horse valve, nor the root replacement. Oh, I guess I did worry about the sutures for a few weeks and if they were going to leak -- they didn't. I had a few minor side-effects, A-flutter was the worst, but I also had a bad reaction to a beta blocker, but being in ICU is a great place to have a bad drug reaction, and that's quite rare. Long message here to you, what I want to impress the most on you is to look at your wife and kids, and decide if you want to slide downhill from here on out and start being VERY symptomatic, or should you have this procedure and within about 6 months be close to "good as new"? (I felt really pretty good within about 3 weeks post op, and even prior to that I felt fine, just had to be careful). For me, my choice was easy. I'd do it again in a heartbeat, if it was to ensure my health in the future with my wife and kids. But of course, you make the best decision for YOU and your family.

Hey John, My diagnosis was exactly the same as yours, and we watched and tested and waited, and 10 years later it came on pretty fast and we took care of it. My journal has pretty much the same info as others, though I did put some helpful tips in a few of mine. It's a very emotional experience, and your kids, if they're old enough to understand, might be pretty freaked out, though they might just think it's cool? My 24 year old daughter freaked out totally when she finally realized, a week after surgery, that "DAD HAD HIS STERNUM CUT THRU AND SPREAD OUT AND HIS HEART WAS JUST SITTING THERE STOPPED!!!" Of course I'd explained everything to her prior to the surgery, but she evidently didn't want to hear it. You'll be fine, though it's a tough surgery and rehab. It's harder on some than others, and it seems that of the 10 or so "complications" that are out there, you'll have at least one or two post op. I pretty much recommend doing what I did. Face your mortality, talk with family, make sure your spouse is totally on board, update your will (yes, just in case, cause you never know and it probably needs to be updated anyway) and then make plans for your recovery/rehab. You'll be fine, just give yourself time......

John, Sounds like you have a similar diagnosis as mine. I had surgery in Oct. 2013. If you search this site you can read my journal under Carol Jackson. They monitored my aneurysm for 5 years. When it got to 5 cm then they said it was time for surgery. after the fact, I never realized how stressed I was all that time. After I scheduled the surgery, I became very calm and relaxed but then my family became very stressed. My surgery went very well and I am so happy to be on the other side. Good luck. Let me know if you have any questions.

Welcome. The first two weeks are really rough...no sugar coating here. Luckily your family are supportive. I am a mother of 3, ages 14, 8, and 5. They all worried in their own way but were also able to help out. Tomorrow is 5 months post op for me and I completed a 5K this morning...nothing fast but can see life returning to normal. Hang in there.