Willie's Posts

Hello Heart Valve Warriors! Today is my 2 year valve replacement anniversary..... wow, the time has FLOWN by. There have been good days and bad days but I'm happy to report I am doing well, my valve is still tickin' and I'm enjoying life to its fullest (despite these current virus lock down). I keep busy and active chasing my two boys, coaching hockey, traveling, and staying busy at work. Life is good! I'll just quickly share some quick notes based on my experience because I know a lot of people are interested in these issues on this site and I know hearing others experiences helped me in my journey: I ended up going with the On-x Valve and had my surgery at Mayo Clinic. Choosing the valve, hospital, surgeon, etc, was definitely one of the most mentally draining experiences of my life but overall looking back and now having the valve for 2 years I'm very content with my choice. There are always pros and cons with decisions like this but at the end of the day you have to decide whats best for you and what you are comfortable with. Warfarin and INR management: This has been much easier than I initially expected, you do have to take medication every day but I just think of it as being similar to brushing my teeth (I do twice a day ;) ). I started out testing every 2 weeks at the hospital lab for about 6 months post surgery and now use an at home meter. Its very simple and quick. I test every two weeks and I'd say it takes me all of 30-40 seconds to do a test. I report my numbers via an app on my phone and then the nurses call me usually the following day to confirm my results/possibly change my dose. So far in 2 years, I've only had one dose change and have never been out of range (2.0-3.0). *My Thrombosis specialist wants me to stay in this higher range, even though ON-x is FDA approved for lower. He feels more comfortable with me staying higher, I'm fine with this. Valve noise and "ticking": I have the biggest On-x valve they make I think its 29mm, I can definitely hear it but my mind is so used to it now that I don't notice it and I would say it has 0 impact on my well-being. I'll be honest though, the first month or two I could definitely notice it and it was annoying. Give your brain some time to adjust to this new sound before giving up hope or stressing out about it. Healing/Scar: I had a mini-sternotomy, cut straight down from my neck to I think my 4th rib on my right side. I would say the healing timeline from the surgeon was spot on, if I remember correct it was about 4 weeks to drive, and 3-4 months before the sternum really felt solid. I still had a ridge on the sternum I could feel when I ran my finger across my chest but I'd say probably after 1 year or so it was back to being perfectly flat/smooth. I still have a visible scar, I used some scar cream for a while but wasn't really consistent with application Airport Security: No issues at all, I travel at least once a month for work and have never been questioned about it. Activity/Lifestyle: This was probably my biggest concern when I heard I needed to have heart surgery when I was 32! Would I be able to run, play sports, play with my kids, etc? I can report, I'm doing great, I have no issues working out, running, biking, golfing, playing pickup hockey (no contact), snowboarding, etc. You do have to take it easy to avoid any major accidents but I have no issues staying active and busy. Hiccups along the way: I did have a pericardial effusion a few months after surgery, its a build up of fluid between the pericardium and the heart which makes it difficult for the heart to expand an allow new blood to flow in. There was no specific pain, just a lot of pressure in my neck/throat that made it hard to breath. Luckily,I was able to address this with some medications, and the issue went away relatively quick. I did have to continue the meds for a few months after, which wasn't the best but I didn't really have a choice. Long story short, there will be hiccups and issues along the way that you have to overcome, that's just the reality that we live in now. Just try to keep a positive attitude and roll with the ups and downs. For those of you with upcoming surgeries, stay positive, trust your doctors, and know that this community will always be here to support you. I wish you all good health and happiness! -Willie

Wow! I can't believe it has already been a whole year! I really can't believe it! Life has been great and this past year will probably go down as one the best of all time!! We had our 2nd baby boy in Aug, moved to a new house in Oct, went on a family vacation to Disney World in Dec., fit in a ski trip to Lake Tahoe in Feb, and even played a few pick up games of hockey with some friends. I feel great and my life seems to be very close to normal, certainly much better than than I imagined it would be after surgery. For those of you going into surgery, I wish you all the best and can say from experience life will go on. Wishing you all health and happiness!!

So.... I had the pericardial effusion a little over a month ago and I will say the Prednisone medication knocked it out right away. I felt significantly better within a week of starting the meds and I feel completely back to 100% now but will be on Prednisone for a while longer as they taper me off the drug. I reduce my daily dose 2.5mg a week, I'm at 25mg a day right now, so it will take me a while to get off. Basically my Dr. said that a slow tapper is the way to go so the body can start regenerating the prednisone (or biological equivalent) on its own again. This drastically reduces the likelyhood of the effusion coming back....time will tell. Overall I'm just happy the issue seems to be under control and I'm back to my normal self again. I guess after surgery some set backs should expected, you just have to be diligent with getting back to the Drs. and take it as it comes.