Ben K - Heart Valve Journal

My Journal

Ben Kposted a journal

21 days ago

Met with one of my surgeons for a 3.5 week post op follow up. I’m healing well and will be cleared for driving in a couple of days. I asked my ...Read more

Met with one of my surgeons for a 3.5 week post op follow up. I’m healing well and will be cleared for driving in a couple of days. I asked my surgeon what happened. He thinks they might have inadvertently nicked a hole in my native pulmonary valve tract as while harvesting it for transplant into the aortic position. This would have been the source of the bleeding which eventually led to a the abhorrent that caught the cusp of the valve rendering it unusable.

I had three surgeons (a fellow which I assumed opened and closed my chest). And I had pediatric cardiac transplant specialist from the Children’s Hospital, and an aortic specialist who is also professor from the Medical school. There were a lot of really smart, highly qualified people in that room working on me.

Even with that team, it didn’t go perfectly. I am disappointed (and so was my surgical team) but I am alive and recovering pretty well, all things considered.

Marie Myers Glad you are healing well! I am sorry that things didn’t go as planned, and that you are moving ahe ... Read more

Marie Myers Glad you are healing well! I am sorry that things didn’t go as planned, and that you are moving ahead in your recovery.

Deena Z Impressed with the “full disclosure” by the surgeons.
You did your research to make sure you had a stellar surgical time. Time will heal your disappointment and ultimately your heart being healed is the ultimate prize. I had a successful heart repair, yet in the long term have residual negative outcomes not expected. - e.g., greater daily fatigue and vasal nerve “damage”.

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Doris Wunsch Good to hear your recovery is going well!

Janet Gaffney Oof, Ben…I know it’s quite the procedure - having it done in a couple of weeks…😬. Hope your ... Read more

Janet Gaffney Oof, Ben…I know it’s quite the procedure - having it done in a couple of weeks…😬. Hope your recovery is better than expected all things considered.

John Olson I am so very sorry to read about your Ross experience, Ben. I had a Ross Procedure 1.5 years ago and ... Read more

John Olson I am so very sorry to read about your Ross experience, Ben. I had a Ross Procedure 1.5 years ago and definitely worried at the time that something unexpected would happen (which fortunately did not occur). It sounds like they got pretty far along in the surgery before they aborted. I am glad your surgical team was upfront about what happened and is following up with you. The fact that there were issues, as I understand it, both with your right coronary artery and your pulmonary valve makes me think you should have someone else double-check/second opinion the result to make certain everything is in good working order going forward. I bet you had imaging and labs done post surgery which you could send to any institution in the country. Were they able to return your pulmonary valve to its original position? Hang in there, Ben, and much good luck with your recovery! Walking helped me a lot.

Ben Kposted an update

31 days ago

Had a failed Ross procedure about 3 weeks ago. Had some significant bleeding from the right coronary artery, and in a repeated attempts to stop the bleeding ...Read more

Had a failed Ross procedure about 3 weeks ago. Had some significant bleeding from the right coronary artery, and in a repeated attempts to stop the bleeding they ended up running a suture through a cusp in my valve. They were unable to fix it so they cut it out and ended up giving me a mechanical aortic valve… (And a lifetime subscription to warfarin).

I'm kind of frustrated about that. I was a well educated and involved patient, in really good shape, and I feel like my team failed me (but at the same time, they saved my life.)

I felt pretty good (although pretty fatigued) before surgery. How long post op does it take to actually feel better than before surgery. I figure about 12 weeks?

Right now I'm having buyer's remorse…

Any one have some words of wisdom?

David Buchanan 2 weeks today and have an On X valve ( Aortic ) .
still tired but walked for 30! Mins slowly yesterday
each day is a little better

warfarin is a problem so far and my INR is swinging around widely but hope to get this under control soon
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Ben K Thanks for sharing part of your journey with me. It is an appreciated.

I’m an ER nurse, prior to that I was (and still am, a Presbyterian pastor and hospital chaplain) but I’ve never gone through a significant surgery or recovery like this.

Somehow, knowing I’m not alone in my journey helps. I mean I can reach out to family members and colleagues but it’s different than reaching out to another person who has been where I’m at.

David, tomorrow makes weeks 3 post surgery for me, I hear ya as far as being able to walk but still feeling tired. My pain is pretty much under control, but I still have spasms of my diaphragm which make occasionally make a deep breathing and talking difficult. But it’too is better most days than it was.

Rose Madura God bless you Ben! You've had a rough way to go. Take it slow and steady. I had a lot of post surgi ... Read more

Rose Madura God bless you Ben! You've had a rough way to go. Take it slow and steady. I had a lot of post surgical complications. So, I probably didn't feel "normal" for about a year. Everyone is different so I hope your recovery goes smoothly. Please keep us posted.

J Alexander Lassally Ben - that is too bad about the failed Ross. Do you think the surgeon skill was under expectation? Who was the lead?

You make a good point that the patients on this site have a deep understanding of the trials and tribulations of a cardiac patient... Even friends and family with the best of intentions often "just dont get it." Especially the long recovery afterward. I had a friend who thought you just were back to self at 30 days !

Keep going. I have have found that the recovery is a fluid and long process - what seems like a recovery at 6 months is different from 12 is different from 18... I am coming up on 23 months and still discover things... The elusive new normal is what we seek ...
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Janet Gaffney Hi Ben, I’ve nothing ‘medical’ to add here (not had my surgery yet) but I see you are a pastor ... Read more

Janet Gaffney Hi Ben, I’ve nothing ‘medical’ to add here (not had my surgery yet) but I see you are a pastor so I will say a prayer for you.

Richard Munson Being an er nurse may help you realize that nothing is 100% in the medical field, but it sounds like ... Read more

Richard Munson Being an er nurse may help you realize that nothing is 100% in the medical field, but it sounds like they were able to salvage this failed ross procedure with a mechanical valve. Yes, you could have avoided this by not having anything done but no telling what your future life expectancy would be. Your life on blood thinners is a pain for sure but maybe a small price to pay for a healthy heart and long life. I can only wish you the best and hope for a long life with a healthy heart.

Fidel Martínez Ruiz Hi Ben, if can be useful, I tell you that my brother has been carrying a mechanical valve since 25 ... Read more

Fidel Martínez Ruiz Hi Ben, if can be useful, I tell you that my brother has been carrying a mechanical valve since 25 years ago and it´s nowadays that he managed well up to now, he is 73 and keeps on playing golf and gym.

Marie Myers And i know someone whose mechanical valve lasted him 40+ years!

Richard Munson I hope my valve repair lasts another 40 years. Why is the ground thumping by richards burial plot.

Fidel Martínez Ruiz 🙃😜💓

John Cook I’m sorry you had Ross complications. I had to have a backup plan for my Ross.

It was about ... Read more

John Cook I’m sorry you had Ross complications. I had to have a backup plan for my Ross.

It was about 10 weeks for me to feel normal for everything but exercising. For exercise, I felt about 75%.

Now at 15 or 16 weeks, I feel about 80% for exercise. I have a feeling it’s going take me a while to get all of my endurance back.