Willie's Journal

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.

Side view of x -ray - Sternum wires and On-X valve.

After seeing Lisa's post of the sternum wires I had to check mine out too!! haha

These last 5 months have flown by and everything has been going great! My wife and I welcomed our second child on Aug. 15th and we are currently in the process of a move to a new house. My heart has been doing well and all healing seemed to be going well. The last few weeks I was feeling a little out of breath on walks or anytime I was under a little exertion. I had an echo in July that showed a small pericardial effusion, my cardiologist was hoping this would go away on its own as it is somewhat common after surgery. Unfortunately, it didn't go away and I was starting to feel the effects a little more over the past few weeks. The symptoms come and go but I went back in to get it checked out yesterday, an echo and MRI confirmed that the effusion is still there and there is some inflammation of the pericardium....damn. Anyway, my Dr. is going to put me on a water pill and a steroid called Prednisone to help pull the fluid and hopefully cure the inflammation. The prednisone requires a few other meds to suppress the side effects. It is disappointing to have to deal with this but I'm happy that the Drs. feel confident they can take care of this issue before it gets too bad. I'll be heading back next month for a follow up.

Has anyone had pericardial effusion, which is fluid build up in the pericardial sack? At a recent echo in July I was told I had a mild effusion. It was expected to go away on its own as I was only 4 months post op, however in the last few days have felt more winded on walks, and also feel more pressure in my neck and head, as if my juglar veins are filled up. I also had some mild swelling in my feet last night. This symptom comes and goes and i would say its mild but still a little concerning (I'm hyper sensitive to anything that could be heart related now). I am already seeking medical attention for this but am curious if anyone else has experienced these symptoms/feelings.

Had a EKG and Echo this morning and met with cardiologist this afternoon. Most everything looks great, apparently I have some mild pericardial effusion (liquid around the heart) but Dr. did not think it was an issue. Overall it was a good report, valve and heart function looks great!

It's hard to believe it's only been 3 months since my bicuspid aortic valve replacement! The body's ability to heal is truly amazing! Fortunately, I don't have anything interesting to report, everything has gone as smooth as could be expected. My On-x valve is working great, INR is stable, and life is good! Going into surgery you may feel like your life is going to be much different but that hasn't been my experience at all! I feel as good or better than I did before surgery. For those of you about to embark on this journey, I wish you all the best! Stay positive this is just a small bump in the road!

Wow the time has flown, seems like just yesterday I was stressing out about needing a surgery. Overall, recovery has been as smooth as can be expected with no issues and for the last week or so I have felt almost completely normal (cardio still lacking). I've been to 8 cardiac rehab sessions over the past 4 weeks and am getting my cardio back very quickly, I think I could go much harder than they let me but I'm not in a rush so I just take it easy per their instructions. They wouldn't let me jog/run yet due to sternal precautions. So far certain things like running up the stairs seem easier to me post surgery, but I'll wait to make a full assessment whether the surgery has improved my cardio in a few weeks when I'm fully recovered.
I have had no issues with the Warfarin therapy and have been between 2.4 and 2.6 INR for all my tests; I'm now on a 2 week testing interval. I've made no changes to my diet, just eat what I normally ate before the surgery. Maybe I'm lucky in this respect but so far I have not had to track vitamin K or make any dietary changes.
The ticking of the ON-X valve is still very present but my brain tunes it out most of the day. I will honestly say I think the mechanical valve noise is under represented by surgeons/cardiologists but at the same time I wouldn't say its a problem for me. Even laying in bed with a fan on doesn't drown out the noise, I describe it as an "internal body noise" which I think makes it louder to me than those around me.

Getting my miles in at cardiac rehab, Go Badgers!!

Well its one month post op and I'm feeling great with my new valve. I have been doing cardiac rehab now for 2 weeks, and am really starting to feel like my old self again. Usually getting about 2 miles walking in at each session and they are progressively increasing speed. The first few weeks at home were fairly busy with follow ups with my primary care provider, thrombosis specialist , and INR blood tests but all is well. The Warfarin treatment has been going smooth and I have been between 2.2 and 2.6 for all my INR readings. Having a consult with the thrombosis Dr. was also very reassuring and he calmed many of my concerns with being on Warfarin. I feel lucky to have a great thrombosis clinic very close to my house. Today is also my first day back at work, it feels great to get back to my normal routine!
For those of you scheduled for surgery, I wish you all the best. I know you are nervous and maybe scared but know that you WILL get through it and it will all be for the better!

My scar 2 weeks post op. I'm very surprised at how well it's healing. My sternum has bumps at the top and bottom of the incision but I'm told that will go away after a while.

Well it's been 2 weeks since my surgery and I'm feeling great. There is still a little tenderness on my sternum but other than that I have 0 pain or other side effects. I have been out and about with my wife shopping and living life as I normally would. Planning on going back to work in a week from today. Prior to my surgery I would have never guessed I would recover so quickly! I will start my cardiac rehab on Monday and I'm excited to get back to 100%! For those of you waiting for surgery, just know you will get through it and this is just a life hurdle that will let you live a longer happier life.

Finally got some real sleep last night and have a full appetite back now. I have still been sleeping in a recliner, as I find it much easier to get out of. Made it to the clinic to see Primary Care Provider and get a blood draw for my INR levels...should hear back on that this afternoon. My valve tick is pretty loud but I seem to be getting used to it and the more I'm up moving around or talking with others the less I notice it. Overall I'm amazed at how well I feel less than a week out of surgery.

Spring in Minnesota....I was hoping for 50 degrees and sunny so I could be out walking. Guess I'll be doing laps inside today.

Very excited to be heading home today, surgeon stopped in and said echo looked great and I'm free to head home this afternoon. I feel blessed to have had such a smooth experience. My INR isn't quite theraputic yet, it's at 1.8, so they will prescribe some shots i will give myself at home to bridge me until the Coumadin fully kicks in.

I have to give a special shout out to my surgeon Dr. Cicek and his team as well as the many nurses that took exceptional care of me.

walking on day 2, using wheelchair for support

This was my post op setup after mini J sternotomy with onx valve.

Was moved from the ICU to the step down unit around noon today. Have taken 3 walks and also had the drainage tube removed. Because I had the mini sternotomy I only had one drain tube called a Blake drainage tube, didn't know I was getting that so it was a pleasant surprise. Pain has been slightly worse today but manageable.

Had my AVR replaced today. Had mini sternotomy with onx valve. Awake and doing well, and yes I'm actually typing this!!! Mild chest pain being managed with oxy and fentanyl every so often. Been chomping on ice chips and using spirometer every hour.going to try to get some rest tonight.

Got through all pre-op tests and scans today and had final surgical consult with RN. Feeling good and ready to get this surgery behind me. Planning on going with the on-x valve. Only unknown right now is if I'll get an aortic graft as well. I have a mild anyeurism so will be surgeons discretion after seeing it. I have my wife and family with me and have full faith this surgery will go as planned. Calling in tonight for my report time in the morning. I'll post an update when I can.

What is the time like in the hospital? I'm guessing I'll be in and out of it the first few days in ICU but should I prepare some activities for days 4-7 (i.e. t.v., books, etc)? Trying to get a sense of what the time will be like between walks and meals?

So I'm one week out from surgery at Mayo Clinic in MN and am trying to make sure everything for after surgery is in order. I'm planning on mechanical valve, I have a few questions for those who have gone through this.
1. How does the hand off between the Surgeon and cardiologist work? Did you see your cardiologist while in the hospital?
2. How long was it after surgery before you had a follow up with cardiologist? My cardiologist's nurse said generally 6 months if no issues but that seems like a long time to me.
3. For those with mechanical valve, where do you go and who manages your INR level? My hospital told me I would need to find a anti-coagulation clinic near my house. I also want to make sure my INR is being set by someone who knows what they are doing. I thought this would be may cardiologist but it doesn't sound like that is the case.

Any insights would be helpful

Finally set the date for my Bicuspid Aortic Valve replacement.....April 4th!!. I hope the time flys by. I'm not stressing, just want to get it over with now.
I had a good conversation again today with my surgeon Dr. Cicek (Mayo) and we walked through all the options: Repair, Tissue, Mechanical. I really enjoyed my consultation with him today and felt like he explained everything very well and made all the options available to me. His recommendation was the mechanical and I am thinking I will be taking his advice, considering I'm 32. I'll probably go with the On-x Valve. He did say 2nd surgeries were no more risky, so I'm sill mulling over the thought of the tissue valve. We are planning on going with the Mini-Sternotomy as long as my heart and aorta position allow for it.

I'm glad to finally have a date set and a surgeon I feel comfortable with. All the research and calls to different surgeons, hospitals, etc. has been much harder than I imagined.

Anyone out there with the On-X valve? I am curious what the INR recommendation is from your doctor, considering On-x valve is promoted as needing lower INR levels? The ON-X valve is one I'm considering but my surgeon said I'd likely have the same INR target (2-3) as other Mechanical valves such as the carbomedics top-hat valve.

Can someone help me understand how long it will be before I can go back to work after aortic valve repair/replacement? I have seen very conflicting stories, some people are running 5k's in 4-5 weeks and others seem to have it much worse. I work a desk job and can work from home but would need to use a computer.

Newbie here. 32 years old with bicuspid aortic valve with severe regurgitation (75CC), no stenosis, and mildly dialated aorta (4.0). I have had no symptoms but have known about this issue for about 15yrs. After several years of follow up it sounds like its finally time to have something done about it due to my increased LV size. I am planning to have the surgery done late Feb. at Mayo Clinic in Rochester, MN with Dr. Kevin Greason, he seems very knowledgeable and confident in his ability. Anyone have any experience with Dr Greason? Is there a database to look up specific surgeons track records? As I mentioned I have no symptoms which makes this hard to digest but I'm putting my trust in the surgeons opinion that this surgery will allow me to live a normal life...I think his term was get back on the normal survival curve.
His recommendation for me is mechanical valve, either on-x or Carbomedics "Top-Hat". He said repair or bio prosthesis would likely have me re-doing surgery in 5-7 years and at my age I can't gamble with that and I should shoot for the one and done.
When I asked about minimally invasive he said he does not do it due to the inability to make corrections if something were to go wrong during the surgery and I believe he feels he can do a better job with the full Sternotomy. Has anyone else heard similar from Drs at top hospitals? I was thinking minimally invasive would be common practice at Mayo but apparently not.

Its a lot to digest, theres a lot for me to learn but this site and Adam's book has helped calm my nerves (I read it in one night haha).