Regan's Journal

Emily Rowley  That is great to hear 😀 How did the valve replacement go & How is the Hospital? Sending well wishes your way.

Amy Steele  So good to hear from you Regan! Glad your recovery is going so well. You will continue to be in my prayers.

Phyllis Petersen  Keep up the good work! You're on the better side of surgery and looking towards the good days ahead. Continued prayers for your success!

J H Mattingly  Way to go Regan!!!! It gets a little bit better every day...keep pushing yourself and soon you will be getting your strength and stamina back. Welcome to the other side of the mountain!!!

Tom Dadisman  I'm on my 2nd day home, one week ago now I was six hours into the 8 hour surgery. My surgical team (11 of them) did a great job and I feel good. Pain has been minimal and my breath is noticeably better. best wishes for your specific needs I will follow your progress😉

Bob Fessler  It sounds like you are in the right place mentally. I hope to be in a similar place when my time comes. Good luck and Godspeed. See you on the recovery side.

Phyllis Petersen  Your daughter sounds wonderful and very caring. Before you know it, surgery and recovery will be over and you'll get to make many more spectacular memories with your family. Thoughts and prayers coming your way!

Emily Rowley  Naww that is lovely of your Daughter. I am wishing you all the best for your surgery. I know first hand, that you are in very capable hands! 🙂 Look forward to hearing updates.

Corey Sines  Praying for you and your Family Reagan. That's a very sweet girl you have! I am sure it will go great, sending well wishes..

Nancy Lewis  You are going to enjoy having it done. You can start on the recovery and be on your way. Sounds like you have some pretty great caregivers waiting for you at home. Smooth sailing all around. Let us know how you do.

Ed Miskovic  Do it. I used visualization to picture my feet and ankle movements to prepare for getting out of bed the first time and regaining my strength. In hindsight, I would have learned how to sit up without using my arms and swinging my legs over the side of the bed in one movement. I suggest you at least see beforehand the technique the nurses will expect you to use after surgery. Once you know it, visualize the "getting out of bed" movement 3 times per day for a few minutes each time. Let us know how this works for you. The best to you.

Phyllis Petersen  Cleveland Clinic sent me a sheet where to find links to their guided imagery: pre-surgery, relaxation, post-surgery and soothing music. I'm finding it helps a lot.

Regan Runnalls  I did end up looking at the Cleveland Clinic guided imagery website but it seemed to be password protected. I have found a few tracks online, but can't seem to find anything relevant on iTunes, local library, etc. Will keep on searching....

Phyllis Petersen  I woke up way too early yesterday and today thinking about all I have to get done before the 13th. It went from being such a long time away to being almost here so quickly. Keep a positive outlook. Keep telling your body that your going to have the most successful surgery and easiest recovery.

Roseline Rosario  Regan I feel you and as you say this community is the bomb. I get more anxious about recovery ...pain and setbacks. But am determined to do everything d Dr and care team order Good luck my friend. This is my 3 Rd scheduled date...hoping it's a charm!

Nancy Lewis  Oh Roseline, I'm sorry to hear you were delayed 3 times. The waiting is really the worst. Just a word on recovery. I was out of the hospital in three days and sailed through the next few days. Then a minor setback. Got very dizzy every time I stood up. My heart care team was all over it to find out exactly why. Even when you are out of the hospital, your team is there for your support. Now I am homebound until we find the definitive answer. They will all be watching you from start to finish. For once in your life, let them take care of you. They've done it lots of times. You've done it once.

Ellen Leng  I echo Nancy!! The care team wants you safe, go with their flow and definitely keep them informed both in and then out of the hospital

Phyllis Petersen  Always good to have distractions! We're on the same date, but way different time zones, so you'll be recovering when I'm starting. :) We can do this!

Emily Rowley  Time will fly! Sure is Long-Weekend. Both AFL (Sydney Swans vs Bulldogs) & NRL (Sharks vs Storm) Grand Finals are on. Which team do you go for? 🏉🏈
I assume your Pre-Op Testing will be at Sydney Adventist Hospital?

Regan Runnalls  I am a big Swans supporter so Saturday will be a big one. NRL, don't really mind. Maybe Sharks since they've never won before. Pre-Op testing is at the SAN. They said it only goes for 1.5hrs, so assuming bloods, x-ray, swabs etc.

Emily Rowley  I went to school with some of the Swans players, it was disappointing to see the Bulldogs to take the win instead. On the other hand it was great to see the Cronulla Sharks take victory over Melbourne Storm. 🙂🏆
Yep, you got it-blood tests, x-rays, swabs, talking with the Nurse, ECG, filling in forms, collecting info, fixing up billing accounts/paperwork & having your questions answered. Hoping it all goes well for you, your pre-op testing would be coming up soon.

Steven Dean  Hey, I am 30 and just had my second OHS. First was a failed AV repair and second was a AVR with bovine 7 weeks ago. The recovery is tough the first couple of days but you are on a lot of pain killers so it goes by fairly quickly. After that, things should get better fairly quickly. I am not saying it is not without it rough moments. The second recovery has been about the same as the first. The first 2 weeks were actually easier (I am not quite as far as I remember being last time at 7 weeks but that is just frustration because I want to get back out on the soccer pitch and what not sooner rather than later).

Catie B  I know the diagnosis and need for surgery brings a big shock. I think all of us here understand. It sounds like things went well with your surgeon and discussing the valve choices. All the best to you in these days ahead, Regan.

Amy Steele  Wow! What a shocker... I've had a lifetime of knowing that I'd need OHS 'someday', but to just have it dropped on you must be overwhelming. It sounds like you're in good hands with the surgeon. I will be praying for peace for you and your family during this chaotic time. Keep us updated.

Emily Rowley  You would be in shock, surgery so soon. Donna is really lovely and helpful 🙂 It is a big decision with pros & cons for both. When do you need to let her know by? I know she was fond of pig's valves too. So your Aortic Valve+what other part needs replacing? I spent alot of time trying to decide which valve, I decided on an animal valve in hope there would be progress in future; but they discovered I have a rare heart anatomy which meant animal valves won't fit but mechanical will, so I signed forms for mechanical valve+pacemaker. She was able to Re-repair my Mitral Valve with Annupolasty Band & patch up the holes. I was incredibly grateful, she done a great job even on my scar too. With your Aneurysm it probably would be different. I was on Warfarin Post-Surgery for awhile, as a young person I can honestly say it wasn't that bad (only the female stuff). Are you going private or public? I know you are in safe hands with her expertise, hopefully you were able to have your questions answered, I'm sure you have many more. Take Care, Emily.

Regan Runnalls  Thanks again everyone! Emily, I kind of just said go ahead with the bovine. She did say she is happy to do the mechanical if I change my mind though. I'm having it done at the Sydney Adventist Hospital now. I never even thought of going there initially, but Dr Granger works from there as well & assures me that it is exactly the same as St Vincent's private. The benefit will be huge for my family who all live close by. My two daughters were born there so it is fast becoming our de facto hospital.

Kevin Lee  Regan, If you do decide to change your mind, consider asking your Surgeon how they feel about the On-X mechanical valve. After talking with my surgeon, we learned that over time we could reduce our Warfarin intake level. I was not okay with another surgery unless I really needed it so we chose that route. It is my medical teams goal to be at that mark by spring. Yes, I take Warfarin, but the amount that I would need would be less than normally required on other valves.

Emily Rowley  That's good to hear, Granger knows what she is doing and will take a good look when she is in there deciding what's best for you. I never considered or discussed Sydney Adventist Hospital, I've heard alot of Top Surgeons perform operations there. Where is the Hospital and is it like St Vincent's Private (Catholic Hospital)? That is a great advantage close to family and at a place you have alot of trust in since been there before. Does Dr Granger still perform Surgery at the Public Hospital? I hope your visit went well for you.

Art Jackson  Looks like you and I are in the same boat. 39 active guy as well getting my CT tomorrow and then a review. I have all the same questions and I too have been leaning towards the tissue valve. Best of luck!

Craig Gay  Totally agree with Kevin!!! Lower INR requirements and much quieter than the typical mechanical valves.

Bridget Sawmiller  My cardiologist heard a murmur when I went in, however, I had a cardiac tumor on my pulmonary valve. I did go in on August 4, 2016 to have open heart surgery to remove the tumor, which was bengin. Looking back, 6 weeks post op, glad to have it behind me and on the road to recovery. Research all you can and make sure you pick the right hospital and surgeon for the best possible outcome. Best of luck, I will look for your continued updates.

Regan Runnalls  Thanks Bridget. I live in Sydney, Australia and my cardiologist says he would only ever refer to a surgeon working out of St Vincent's Hospital. This is one of the leading Cardiothoracic Surgery Hospitals in Australia & where Victor Chang worked! So I have confidence that I will be in good hands.

Emily Rowley  OMG Regan, I am from NSW Australia and recently (6 months ago) had my Open-Heart Surgery at St Vincent's Private in Sydney! You are in great hands! Who is your Cardiologist and Surgeon?? Yes it is Heart Hospital of Australia/NSW; in fact Dr Victor Chang's relatives work there as Surgeons too.

Nancy Lewis  Regan, please don't wait. I know it is a major scare, and the further you dig into the knowledge and the closer it gets, well, it doesn't get easier. Bui I've been told almost all my life that I have a murmur and a mitral valve prolapse, but nothing to worry about. Had an EKG in July 2015 and all was well, had one in 2016, and after much more testing, I'm on my way to surgery next week. The ventricle is enlarged already by the leakage. That can lead to congestive heart failure. You want to be there with that lovely family for a long time. This site will be a wonderful help to you. It was to me. Adam's book is great and helpful too. Best wishes for your decision.
Nancy

Nancy Lewis  Just a little ps. We have been to Australia many times and we were on our way when this came up. I'm hoping to be down under by next March, once I'm on the other side of surgery. Nancy

Emily Rowley  OMG I just read your Surgeon is Dr Emily Granger, she was mine too! She is EXCELLENT and such a lovely person!!! Are you having your Surgery in the Private or Public Hospital? Have you met with her yet?

matt berry  Your story is mine almost verbatim. Was 38 and extremely fit when my Aneurysm was discovered incidentally. I thought i was having a rapid heart rate. It turned out to be nothing but an echo performed to be safe revealed BAV and 4.7 Ascending aneurysm. Everything the doc said after aneurysm was a blur, ha ha. Mine has been stable for 3 years. Listen to your doc and try not to stress out. You will be fine, best of luck!

Regan Runnalls  I'm seeing Dr Granger this Thursday for my first appointment, so haven't met her yet. Hadn't really thought about public v private to be honest. I guess I just assumed it would be done in the Public Hospital. My cardiologist is Vijay Solanki.

Civita Fahey  I am in the same boat.. heard a murmur 5 years ago and ended up having BAV.. I also am on 3 month echoes.. I don't have leakage that I know of and and have seen two surgeons that say wait a bit.. Getting one more opinion ager my echo in October. it is a surprise and it seems that your world is blowing up.. I know feel much better after reading and getting so much support from all these wonderful people.. I too need to decide when is the right time.. I have no symptoms also and am very active so as you say, who knows since we thought this was our norm our whole life. As I keep saying to myself, all will be fine.. the Lord watches over us and thankfully we live in a time when this completely fixable..

Joanne Casserly  Hi Regan, I never knew that I had one either, it simply was not discussed, but then I got pneumonia and it was found and I'd also blown my mitral valve, all is fine, it was replaced not repaired from a vein, in my leg and he also put in 2 bovine bypass cause when they cut me the MVP was bleeding heavily behind, my heart. Just so you know, I'm fine and back, to life. You will be fine and this board was my life saver. I wish you the very best of everything. God Bless. Joanne

Tom Dadisman  Hi Regan, Your story is a familiar one as I’ve followed heart patients all my life. In fact my study of medicine was helped along by my interest in my own condition…a heart murmur. Much like yourself my entire life each time I saw a physician they asked about my murmur. If fact it was quiet enough that they often missed it on the first listen. I even attended a 3 days seminar focused on heart sounds so that I could understand better what I was hearing a listen for changes. As the years progressed it seemed that my bicuspid aortic valve was no hindrance to my activities. I was on the bicycling team, played collegiate basketball and when I moved to Colorado I climbed dozens of ‘fourteeners’ with no ill effect, and no change. However about 14 months ago or so I had noticed a change in the sound and started on the tests like you have described. A EKG, and Echo, a CT scan etc. and with these tests the diagnosis was clear, my bicuspid valve was failing with severe stenosis. I’ve since nicknamed this valve ‘squeaky’ and now it seems I’m going to be having surgery in the next few weeks. I’ve met with my cardiologist, the surgeon who will replace squeaky and some of his staff. I can certainly tell you this, the valve is not going to get any better and the diagnosis is not going always anytime soon, I know because I have been wishing all of this was not true but sadly and happily it is. I too have no symptoms the past months but in the past month or so I have realized that the onset of symptoms has been gradual. I find myself avoiding strenuous activities because it tires me out and I get a tightness in my upper chest as my body starves for oxygenated blood, I can definitely see it’s getting worse. I have nearly 20 years on you so my case is a little different but you are strong and young and will ride this out with no problem. I have a unique perspective on the situation having working in the medical device industry most of my adult life, it’s as if I actually think I know too much and I’m constantly spooking myself. I can tell you this technology is much more advanced than it even was 10 years ago. The state of the science is well matured and very actively being improved day-to-day. This entire experience for me has been super scary and I’ve tried to postpone it too long after al l who wants this so called ‘elective surgery’ and who can imagine a good outcome. That is why I’ve liked reading the stories on this site as they offer inspiration and hope. I wish you continued good fortune and continued success as you move forward with this adventure…stay in-touch!

Kevin Lee  My Mom heard those same words when I was a baby. They found out that I had a BAV like you. As a child it was scary but I learned everything I could from the doctors and that helped. On May 31, At 32 years of age, Echo showed that I needed AVR for severe stenosis. Test also started pointing to trouble with the mitral valve and aorta artery as well. Luckily, the Surgeon only had to replace the Aortic Valve. I am one month post op as of today. Just know that there is wonderful people on this site and on the medical side that will be there for you. You are not alone.

Amy Steele  Like Kevin, I was diagnosed with BAV as a baby. I've been to more doctor appointments and had more tests than I can count over the years. I've had my whole life to think about this, so I can't imagine what it would be like to suddenly get the news and realize what's ahead of you. I'm so sorry... I've got a little more than 10 years on you and didn't show bothersome symptoms until about two years ago. I've always tried to stay active and I'm convinced that an active lifestyle helps! I tried to ignore and downplay my symptoms for years, but they don't go away and only get worse, until you have to acknowledge the limitations and risks. I was really nervous when I had my first appointment with the surgeon a couple of months ago, but I came out feeling much better about everything. Adam's book was very helpful with questions to ask the surgeon. When plans were finally made, it was a relief. I'm really looking forward to feeling normal again! 17 days until my surgery to replace the aortic valve and aortic root and repair my aneurysm. We're here to support you! I don't have a lot of answers to questions you may have, but there are plenty on this site who do. You will be in my prayers.

Regan Runnalls  Thank you everyone for your kind words of support! I'll post an update after the surgeon appointment on Thursday!

Richard Davis  Regan, I too was diagnosed with a BAV, I waited until I had severe regurgitation, not the smartest idea, because I worried about it so much. I'm 2 months post opt and so relieved to have it behind me. I'm slowly working my way back, having done triathlons for 30 + years. Good luck to you!

Darlene Smith  Oh yes my heart murmur diagnosis changed my life forever. Two years after the diagnosis I went from minor leakage to mod/severe, and two years later I decided on elective surgery before my heart became damaged. I do not regret that decision.

Carmen P  I also have BAV and an aortic aneurysm. I went from moderate last March to severe this month. I'm 62 years old, but had thought I had more time to plan for surgery. The last few days are a blur as we have tried to find a hospital and surgeon. Good Luck to all of you. We will get through this.