Yumiko's Guestbook

Yumiko Ishida  Hello, Sue. For most of my life I was told it is very rare, but there are many of us on this site that had/have rheumatic valve diseases. I am glad your son is doing okay after the surgery!

Yumiko Ishida  Hi, Trygve! I think the dietary supplements approach helped. There was a time I had to be on 6 mg of warfarin a day, but was able to slowly reduce it to 2 mg and still be in the target INR range, which was 2.0-3.0 for me for the most time. So if you need warfarin / coumadin, there is no avoiding it, unfortunately, but there are ways to keep the dosage low.

I was on warfarin after going into afib, developing a clot, and having a stroke in 2022. I was out of afib after a cadioversion almost a year after the stoke, but was still considered high risk for a clot/stroke, so was kept on warfarin. My biggest fear was going back into afib, so I made sure I got the maze procedure and the left atrial appendage closed off during the OHS, and so far I have not had afib since the surgery! Because of the maze, LAA closure with AtriClip, and no recurrence of afib, my clot/stroke risk is considered low now, and I was able to go off warfarin three months after the surgery, once the new tissue valve sufficiently endothelialized and the echo came back clean. Even with maze there is a chance of afib recurrence, but the LAA closure is what reduced the clot risk considerably for me, since that is where the clot formed two years ago.

My recovery was / has been slow because 1, I developed a skin infection on my chest within a week of the surgery, and 2, foot injury and other muscular skeletal issues limit my ability to exercise. Infection is gone. My heart rate is still high, around 90 at resting, but that is much better than where I started so I know it will improve with time. 

Are you considering another tissue valve? Depending on your risk factors you may still need ro be on warfarin / coumadin, but hopefully you could find a balance.

Trygve Harris  Dr Adams suggested a bovine one--the last one was porcine. I don't want the mechanical one. I see what you're saying about warfarin being temporary. I just can't seem to do it. They say "the key is consistency." That's one thing I am not. I'm back on eliquis now, instead of warfarin, and also baby aspirin. I hope, of course, to not have to take any of it. But as I read today, radiation induced valve disease is a a bit different. Also, I had more radiation, although to the pelvis, not the chest, last year. Hopefully it will be ok. The valve took about 30 years to calcify I think, and I had the operation 37 years after the radiation, which was when it was discovered. I feel you about the muscular/skeletal issues that limit exercise. I have nerve damage, pain, weakness and numbness from taxol. My goal is to be able to go back to martial arts. Am seeing a nerve guy too. It's great to hear the ring (agri-clip?) dealt well with the afib. Afib is so scary!

Yumiko Ishida  Glad you are able to take eliquis instead of warfarin. Heard it’s much easier to manage. I am with you on mechanical vs tissue. Having been on warfarin for a couple of years, if I can avoid it, I will. I know I will need at least one more replacement in the future, but I am old enough so the choice was not too difficult to make. Mine is porcine, and so far no problems with the valve itself 6.5 months later. Hope your future bovine valve serves you well.

Having other medical issues does complicate things. I was on biologics, an autoimmune suppressant for certain kinds of arthritis, before my heart surgery, and had to pause taking it for several months. I imagine the situation is even more complicated if you have cancer and/or are experiencing side effects from cancer treatments. It’s going take time, but you will be stronger!

Trygve Harris  Thanks Yumiko. Yes, Eliquis is way easier--you just have to take it, no other thought required. I don't think they thought it was ideal for me, but  warfarin was a mess. The tissue valves are supposed to last "at least" 10 years they say........And I always think something else, some other breakthrough will come along soon enough.

Yumiko Ishida  Thank you, Steve! My surgery was a success and I think I am doing ok, all things considered. I was forewarned that complete recovery will take a long time. I am glad my post was helpful. It is always good to hear from others that have gone through it as a patient, not just the expert physicians. It sounds like you are talking to the right people and asking the right questions, so I am confident John's surgery will be a success! I don't remember my dream, but we probably were talking in our sleep

Yumiko Ishida  Thank you! I think what I am hearing is to take it slowly. I do have a reclining chair, so will probably use that until I feel strong enough.