Laurie's Journal

My husband had open heart surgery 2/3/2023 to replace his Bicuspid Aortic Valve. In a routine CT Scan to check a repair of the non coronary sinus one of the leaflets had a thickening. His Cardiologist put him on Warfarin to see if maybe it was a blood clot. It must of been because as of last week the thickening is gone. We are waiting to hear from his Cardiologist what the next steps are. Our question is, will he need life long blood thinners? We chose a tissue valve because he had ITP (low platelets) two years ago and if it returns he can not be on blood thinners. What are the odds of the blood clot on the leaflet coming back if he goes off blood thinners. If he needed another valve what are the chances of this happening again, is it the valve itself or his body chemistry causing it. In searching it appears this is not very common but does happen with both TAVR and open heart, more in TAVR procedures at about 15%. There is just not enough information out there on this incidental finding. Has anyone else experienced this and if so what was the following protocol. If there is a cardiologist that has dealt with this finding I would greatly appreciate any guidance as we wait for our Mayo Clinic Cardiologist to get back to us. They respond to your messages based on urgency, it's been 5 days since we have inquired with a portal message. Also if anyone else has had this happen could you please let us know what the protocol was for you. Thanks so much for insight you may have, Laurie

My husband had a bicuspid valve replaced one year ago this month. On one year follow up ct they found a smooth thickening on one of the valve leaflets of his bovine valve replacement. They said they can not be sure what it is but started him on Warfarin just in case it is a blood clot. Looking back at all his Echo's since his surgery I see that he has had mild to moderate tricuspid valve regurgitation on all 4 of the echo's performed post open heart surgery. The plan is to have a TEE in June to check the leaflet again. I guess my question is should I seek a second opinion now, and since this was an immediate finding right after the valve replacement, is it possible the valve was faulty at time of placement? Any insight or guidance is greatly appreciated. Laurie

My husband had open heart surgery one year ago to replace a bicuspid valve which apparently he had from birth but was not found until he developed a murmur. He previously two years ago had a pacemaker put in, which has not been needed since his open heart. It appears due to all the calcium build up on his bicuspid valve the signal was not getting to the lower part of his heart. During the open heart surgery his surgeon did a repair/patch to his non coronary sinus, which I am not sure if there was damage due to the procedure or not, it also appears one of the leads to his pacemaker was damaged but still functioning. Last week at Mayo where he had the surgery they did a ct only to check the non-coronary sinus repair, however the ct showed a couple issues we are concerned about. First it states “There is a new smooth hypoattenuating left thickening of the left bioprosthetic leaflet thickening with associated mild restriction of leaflet motion”. Mayo has a four day window in which they have to reply. Worried this may be a blood clot, or possible valve failure?? We had to go with a bovine valve due to the fact he had ITP (platelet disorder) which was a month in the hospital for that, then ended up with zero neutrophils and sepsis from the ITP treatment and 5 blood cots with 3 in his lungs. With ITP being on a blood thinner could be fatal if it returns. So that is why we had to choose a tissue valve. The results also state he has Abnormal septal motion which is most likely from the open heart but from what I have read usually corrects itself before now?? It also states he has concentric left ventricular hypertrophy which we have no clue if he had before or if this is something that came about after his surgery. Waiting 4 days for Mayo to get back to us seems like a lifetime. I known his Surgeon was good but with all these issues we are wondering if we should seek another opinion or where to go from here. It is so hard to know who is the best for all the conditions that has arisen. We also found out he has emphysema from smoking more than 20 years ago, along with working in an automotive paint company in his early years when no protection was thought to be needed. He currently is not needing oxygen and we are grateful for that, he is still pretty active and works a very physical job. I guess we are wondering if any of these findings has happened to anyone else and what the next steps are and is there a clinic/hospital that is more familiar with all that has transpired or are we in the best hands with Mayo in Rochester. Any help or guidance sure would be appreciated.