Corey's Journal

I had my first follow up Echo on Tuesday. Everything looks good with the Repair and he released me to return to work! My Cardiologist says I was very lucky to get a repair this time around. I still am recovering. I definitely can say I am better that I was before surgery at this point. I still have chest, rib, back discomfort much more so that the first time and my walking, while improved, isn't up to where I want it to be. I start Cardiac Rehab next week, so I hope with time all these will improve. But I am glad to be here. I felt all the prayers offered on my behalf, it was almost tangible. And the recovery, overall, has been relatively uneventful and blessed really. Thanks everyone, I will check in from time to time.

Today is 3 weeks out from my surgery. Overall doing pretty good. No major complications. Liver is slowly returning to normal. I have to follow up with my PCP next week to check again. I don't walk a lot yet in terms of distance and time (maybe 1/4 -1/2 mile at once), but moving around the house is getting easier and my step count keeps going up (around 5k daily now). So progress is slow yet continuing. I have a good bit of sternum pain. Especially towards the end of the day, but it's endurable. I guess I am mostly where I should be, I am still fearful about the long term and recovery however. Until I have improved past my pre-surgery state that will continue, I remind myself recovery is marathon not a sprint and take each day by itself.

Finally got to leave the hospital yesterday! Sooo great being home now. Learned so many meds affect the liver. I thought mine was pretty well to do as far as livers go (don't drink alcohol, smoke, etc -pretty clean living). Even learned that certain Citrus (especially grapefruit) can increase the toxicity of certain meds like good ol' Tylenol. I learned to again always Double check each drug on drugs.com. Nurses and staff know a lot, but they don't walk around with an internet full of information, and don't always have time to look it up properly. Made me regret my choice of oranges. So my pain reliever at home is ibuprofin. And a sparing 200mg dose as needed because of interactions with metoprolol and aspirin. Ibuprofin also increases your bodies "fluid retention". It's enough to throw your arms up and just shake your head. So not much options for me and pain meds during recovery.Following up with PCP on Liver enzyme levels going forward till they reach normal. Wow at a week out, I think overall feel pretty well, and ahead of where I was at 7 years ago with my mini-sternotomy( vs. full sternotomy this time) Wonky liver hasn't manifest itself in a bad way physically. TLDR part ;-) I am so thankful for all the prayers and well wishes, both hear on this site and in my personal life. This experience has drawn me in spiritually and strengthened my relationship with my Savior. I don't pretend understand always Gods plan vs/with Free Agency. But I have learned through these experiences that Faith is more than just believing in things unseen, but also believing in God's will for us and others. My possible death didn't bring great anxiety, as mortal beings we have to accept the fact that our lives could end truly at any moment regardless of religious or personal beliefs. it's a fact that life will go on without us at some point. However, thinking of my family without me here, to watch over them, protect them, & help them, especially growing up, scared the heck out of me. I learned to increase my Faith, and accept Gods will, that they would be alright in the end regardless as long as they stayed close to the Lord. I so grateful to have the Surgeon I had. I think many wouldn't have tried to save and repair the valve. I was shocked to learn it was a re-repair and not a replacement upon waking in the ICU. Still I have heart disease, and it remains to be seen how effective the repair was, initial post repair echo's still show some Stenosis. But it improved from echo to echo, so the hope is the valve and heart will heal and eventually perform at the no Stenosis levels seen by Dr McCurry during and after the testing of the re-repair. So it remains to be seen if this ends up being a good call or not. But I remain hopeful! I am glad to be off work until the new year. It always is frustrating dealing with bureaucracy both at the medical administration part and government part. Still working through, getting some doc to fill out disability paperwork for work. It's amazing how each deflects to the other > PCP > Surgeon > Cardiologist. I am just a guy, who just had heart surgery and just need some forms filled out! It shouldn't be that hard, I am not trying to take advantage of anything!!! I hope I have this nailed down tomorrow. Expending much healing energy on phone calls and debating sucks. Sending a shout out to Robert D'aurora for stopping by my room on the worst day of my recovery, you lifted my spirits for sure! Thanks again to Adam for this great site!

Still here in the hospital. Shooting for discharge tomorrow. First after surgery echo showed still some gradient(Steniosis) but with swelling and fluid three days out it could be expected. Surgeon checked and double checked in OR, and was measuring perfectly normal then. Main issue was ring from last repair was just too small. Went from a 27mm to the largest (37mm I think) and patched it up. Cardio's wanted a better new 'baseline' echo after. Also trying to dial in lopressor dose. Already down 5 lbs now from surgery weight. They were really pushing the Lasix in prep for new echo. Between that and softners had a set back on Saturday. Just not feeling well(think dehydration) Better day today. Those are the reasons I'm still hear. Very hopeful for discharge tomorrow. Keep sending prayers my way.

My brother tried to post for me, but I'm not seeing it. Day 3, feeling better. Step up room yesterday, all tubes out. So far normal sinus rhythm. Best of all Dr McCurry was able to rerepair my mitral valve. He gave it a less than 20% chance before surgery. Up walking around today. Best to everyone!!

Thanks so much everyone for the thoughts, comments, and prayers. I am very grateful for all of it. This site, and all of you, have been a blessing to me. I am sitting in waiting area for pre-surgery testing. Nervous, but excited to get this behind me. My Brother will login and update things as they progress tomorrow. Don't yet have a surgery time, I will know that later this afternoon. Thanks everyone and God bless.

Today is last day of work for awhile. I have felt pretty in control of my emotions, but I am bit all over the board today as this gets more real by the day/hour. I am trying to stay strong for all those around me, but I am struggling on the inside right now at times. Having faith and trusting God to see me and my family through this. Send some prayers my way please..

One more week before surgery. At peace with everything, but ready to get it over. I am going to be putting together videos and messages for family. Staying optimistic , and I am putting things in order as much as I can personally, spiritually, and professionally. Having these heart issues has put me in a different state of mind and has given me a deeper appreciation for life and love. Looking forward to this continuing after my recovery, I truly love the person more and more I am becoming. I may not post much here in the coming week, except some pictures. I am spending all the time I can with my loved ones. I will continue to pray for everyone on here. I wish and hope for successful surgeries, quick and uneventful recoveries, but most of all peace and love in your lives before, and after surgery.

Time keeps on moving forward towards Surgery. I am trying to make the most of each day I can. Mitral Stenosis provides a constant reminder, its there every time I and my heart exerts itself. Looking forward to better days after surgery. Thanks everyone for the words of Hope and encouragement here on this website. I love my family SO MUCH, and I have faith that regardless the outcome, our Heavenly Father will take care of them.

Good luck to all HVS Heart Brothers and Sisters having Surgery today, Listing 5, Regan, Wood, Phyllis, Ines, and Stephanie (Her Mom)on the "Upcoming Surgeries", a new record? May God bless each of you and watch over and care for you and your families..

Just over a month till my surgery date. I made hotel reservations last night near the Cleveland Clinic for my wife and myself for my surgery in November. As we have an infant, my wife will not be able to stay overnight in my room. Didn't know I had heart issues again when we were discussing having another child. Timing on things with heart problems is often never very convenient! I am trying to stay positive and envision myself on the other side of this. Our oldest child is graduating HS in December. She is planning to start College first of January at BYU, I really want to fly out with her and my wife to have the experience of seeing her off. I hope and pray I will be able to do that 2 months after surgery. Last Surgery I would have been, I was pretty good about week 5-6. But this is surgery #2, Likely replacing with a mechanical valve and all that entails with Blood thinners, and I am 7 years older. I have thought about writing letters /messages / Videos to all loved ones just in case, but that feels a bit pessimistic and I don't know if I should focus my energies there, or just focus on being positive and assuring myself everything will be fine. What has everyone else done in this regard?

The National Institute of Health (NIH) did a study to compare the survival rates between tissue and mechanical valves over a 20 year period in 2001. Specifically valve replacement with a tissue valve (Hancock, Carpentier-Edwards porcine, or Carpentier-Edwards pericardial) or a St Jude Medical mechanical valve. They found the survival rates between the two to be near identical. It just basically re-states what most of us have come to know. Mechanical valves last longer but you have to deal with bleeding events. Tissue valves are great, until they wear out and need replaced which on average was 7 years for Mitral, and 10 years for Aortic. http://www.ncbi.nlm.nih.gov/pubmed/11479498 The Bi-leaflet St Jude valve as been a leading valve choice since its introduction in 1977, and is largely unchanged in the years since release. More that a million of these have been implanted in patients since 1977, with no known mechanical related failures. See 50 years of evolution for mechanical valves: http://www.ncbi.nlm.nih.gov/pubmed/14667692 I would like to see a study going forward for the On-X valve, after the reduced anti-coagulation has been approved across the board. This should lead to measurable reductions in the number of bleed related events and the improved design of the valve, might tip the balance towards mechanical valves, at least until the next evolution of tissue valves come around. ;-) Also, things like TAVR / TAMR might improved re-operation outcomes and extend lives for tissue replacements overall and factor in as well, so its probably about even again between the two options factoring that in today.

This past weekend. I have had several times where I have paused and thought, what is going to change and how will my life be impacted living with a mechanical valve and on blood thinners. It started with a conversation about my sister-in-law getting hit in the head with a disc golf Frisbee. She got a nasty bump and bruise, and got some black eyes as a result. What would have happened if that were me on blood thinners? Also cut myself, just a little, slicing vegetables. No big deal right now, I started thinking, but what about afterwards? My wife, got hit in the shin, by accident, in our church by a kid who was messing around on a folding chair, and bleed a little, what would that be like for me? Playing basketball, in the past, many times I have hit the floor. Riding a bike, and taking a tumble, its happened to me a few times. Up until the last year or so, I have lead a very active life, enjoying many activities with my young family and wife. How is it going to change? A tissue valve isn't really an option for me, at my age (40), and the mitral position, the surgeon said I would be lucky to get 8-10 years, so my choices are pretty much made for me, and Mitral replacement by Catheter is a good bit behind TAVR. What precautions do any of you do after a mechanical valve and being on blood thinners? Do you always use a cutting glove? (I thought about buying one now). Do you carry any thing on your person / car to help stop bleeding? Is there a fast acting Vitamin K something/something to reverse Coumadin (I know they administer these in Hospital/Docs) when you experience a bleed event? Also, The even scarier parts are the brain,organ, and intestinal bleeds. Do you take any supplements / meds to say aid in digestion to help things move along? Or am I just being overly paranoid about it all if I do a good job keeping the INR in range, things aren't all that bad?

We hear so much debate at times on this site about valve choices, this is a good write up that outlines all the pros and cons of each: http://www.cryolife.com/products/on-x-heart-valves/patient-guide/pros-and-cons-of-each-option-for-heart-valve-replacement/

As doctors advise my condition (mitral stenosis) isn't life threatening, just something that over time (they estimate a year or two) will deteriorate into bad things (essentially heart failure if I wait to long, however, no one exactly knows how too long is...). I have scheduled my Mitral Valve replacement surgery (I am at least expecting this outcome, if by the slim % I have he can re - repair it, I would be overjoyed and pleasantly surprised coming out of surgery, but not counting on it) for November 6th, 2016. Why two months out? I have a lot of kids in fall sports/band/orchestra I don't want to miss out on and also it would make it hard for those looking after my family in mine and my wife's absence. Additionally, by scheduling it in early November in my expected 6-8 weeks off work , I will likely be well recovered by Christmas time, and start work sometime after the first of year. There is also some tangible leave benefits at work I get by scheduling it during that time frame I won't get into. Going again to the Cleveland Clinic, and Surgery will be with Dr. Kenneth McCurry. Living life as best I can right now, and enjoying every day the Lord blesses me with, and hoping for many more with my wonderful wife and family. Planning for recovery, but prepared for anything. May the Lord bless you and your families all with peace, comfort, and healing both physical, emotional, and spiritual.

Meeting with Dr. Kenneth McCurry (http://www.heart-valve-surgery.com/surgeons/dr-Kenneth-McCurry-Cleveland-Ohio.php) this Friday to discuss my case.! Anyone on here that Dr. McCurry has performed a Mitral Valve Replacement on?

With my soon future Mitral valve replacement I am trying to keep a positive outlook. After my Mitral Valve repair recovery, it was all Sunshine and Rainbows. I never had much problems for several years, I hardly gave my heart much thought. I always thought, hey it was worth it in the end, there is a like 90%+ chance you never have to deal with heart issues again, they fixed you. Then all the issues with exercise started, and I knew always deep down it was probably my Heart again. Took my doctors way to long to figure it out, but I guess I should have followed up at Cleveland Clinic sooner, in retrospect. Now I feel like, even if i pull through OHS again with a replaced valve, it can never be sunshine and rainbows again for my outlook, there will always be this gray cloud hanging over me the rest of my life. I have heart disease, I always will and I have to face that fact. It has been really hard for me living now with this knowledge and knowing all the risks it brings and accepting this reality. Trick is, and I am still figuring it out, is to not let that define who I am or the life I live for however long I have left on this earth. I am glad I found this site, It's feels good to not feel alone in this. I was feeling pretty alone before in this. Others around me who don't have heart disease, can't really relate, but each of you can. Thank you all and God bless.

Anyone considering Mechanical Valves, should take note. The Cryolife On-X Valves are in Clinical Trial for treatment of Aspirin/Plavix only vs. Coumadin. Early reports I have heard have been very encouraging that this actually might be an option for some patients. https://clinicaltrials.gov/ct2/show/NCT00291525 http://www.onxlti.com/enrollment-objective-achieved-for-aspirin-and-clopidogrel-patient-group-of-the-on-x-heart-valve-anticoagulation-clinical-study/

http://interventions.onlinejacc.org/article.aspx?articleid=1352149 Interesting read, seems very encouraging that at some point in the future we maybe able to deliver a tissue valve via a catheter, the bio degradable frame seeded with our own / or other source stem cells and essentially our body will incorporate this into a new functioning valve that hopefully will be living tissue and not wear out. Especially important in pediatric applications which may allow the valve to grow with the child.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3290375/ Especially if you are new mechanical valve recipient. It take awhile to dial in your INR ratings. It is accomplished best through self testing so you can figure out what works and doesn't for you and your diet. From my last post you can see the dangers of too big of a swing (too much coumadin and you risk bleeding in your brain/organs, too little you risk clots (thromboembolism). More info: http://circ.ahajournals.org/content/circulationaha/108/10_suppl_1/II-75.full.pdf