KEVIN's Journal

Cathy Zuber  Hi, know what you mean,, just got home from the ER..cardioverted on Thursday...after 2 months in AFIB after mitral valve replacement...back in AFIB!! Higher than befor!! This is in the low 100's. See cardiologist on Tuesday!!

Jeanette Davidson   I completely understand your frustration. Such a bummer! You are entitled to feel how you feel AND you will get through this and move on. Try to just ride the waves right now and hang in there . You will be in my thoughts and prayers!💓

KEVIN RYAN  Thanks Briana, Cathy, and Jeanette. Thinking of adopting another senior rescue dog who was confiscated by Animal Rescue Services. She is 16 and was confined in squalor in a trash-filled house. Currently she is surviving (barely) in a shelter. She has no known name. I think it fitting, given my current situation, to name her "Hope"...or "Grace"....but if this arrhythmia continues, maybe "Flutter".

KEVIN RYAN  Thanks, Phyllis. Yes, I've actually talked with a few...very nice people and very positive re Ross. I was going to Cleveland Clinic/Dr. Guillinov...now to Mt. Sinai in New York with Dr. Stelzer. Went round and round...still am. Paralysis by analysis as they say.

Phyllis Petersen  It's a difficult decision and it's important to feel comfortable with your choice. Hopefully, everything progresses well for you.

Adam Skaufel  Hi Kevin - I'ts interesting that you brought up the Ross Procedure. My surgeon didn't even bring it up as an option for me. We only discussed a mechanical (his recommendation based on my age) or a bovine valve. My employer also has an additional benefit to request a second expert medical opinion. These expert medical opinions were completed by a Dr at Harvard medical and a Dr at Stanford Medical. Both doctors agreed I needed to have the surgery soon, but it was not critical. They both also recommended the mechanical valve, based on my age. However, the Dr from Stanford did give the option of the Ross Procedure. The challenge as he stated in his evaluation is that you've now created a 2 valve problem instead of one.

Being 2 weeks post surgery, I'm really happy with the On-X mechanical valve and managing my blood thinners will just become my new "normal"

Cathleen Weed  I had a Ross Procedure in 1994 at age 22 for a bicuspid aortic valve and all was perfect until I had an aneurysm on my ascending aorta that required another surgery in 2005 at age 33. The aortic valve (my own pulmonary valve in that position) was doing awesome until then. It would have lasted twice as long at least but I had to replace it with the aneurysm. My pulmonary donor valve is still doing great 23 years later (I'm 45). Just get checked for any indication of an enlarged aorta or any family history prior to a Ross Procedure.

KEVIN RYAN  Good word, Cathleen, thanks! I understand that aortic aneurysm was an underappreciated complication in the earlier days of the Ross. Dr. Paul Stelzer, et al refinded the technique to assume this fact and now use dacron felt as aortic reinforcement. I am encouraged by your experience, despite the aneurysm issue. Where did you have it done? Seems like only a handful of surgeons are doing the Ross with any degree of volume/expertise. What are your opinions/thoughts? I was scheduled for a mechanical valve at Cleveland Clinic on Valentine's Day; but am considering the Ross. Thanks!

Briana Morgan  I had a Ross for my stenotic bicuspid aortic valve this last November 4, 2016. I also had my dialated ascending aorta replaced at the same time. The surgery was done by Dr. Stelzer in New York. I highly recommend him and his team. They took great care of me. I am just over eight weeks out and feeling great. Of course, I can't tell you about long term results of my surgery. Dr. Stelzer could discussed with you long term results of his previous patients if you contact him. I was the 610th patient he had done the Ross procedure on. His mortality rate is less than 1%, which is really good for those who do this procedure. I definitely recommend having a highly experienced surgeon in the Ross procedure do this for you if this is what you want. If you have any specific questions, I would be happy to discuss them with you.

Cathleen Weed  Hi I had it done at Cedars Sinai in Los Angeles by Dr. Trento. He is amazing. One other note is that eventual aortic aneurysms seem to be an issue in most patients born with the congenital bicuspid aortic valve due to a connective tissue problem of some degree. Great to hear that they are doing the reinforcement with the surgery now! Oh and I had TAVR last year at Cedars Sinai to place a new bovine tissue valve (in place of that bovine valve from the 2005 surgery). AMAZING procedure. I left the next day. It is the future of valve replacements so keep that in mind too :).

KEVIN RYAN  Interesting, Cathleen! TAVR....non-invasive valve replacement....wow!! I had read where it was being done in Europe for moderate risk patients. Very cool the US is catching on! All the best! On a side note: I see that you speak caninese. Rescues are the best...north, south, east, and west! :-)

Catie B  It's a real decision. Tissue valve doesn't click. But my heart still beats distractingly strongly at night since surgery late Sept.

Ellen Leng  I agree with Catie, tough choice. I'll tell you that my heart makes some noise and has a heavy beat 12 weeks post op and I had a repair with no replacement! Long term, however, the tissue valve will not have the click like a mechanical valve.

Steve Farthing  At age 59, you may outlive a tissue valve and require another surgery but possibly when that time comes, a less invasive TAVR procedure inserted thru a leg vein instead.

Meredith Bray  I love my tick. Sometimes I hear it, sometimes I don't. My lifestyle has not changed negatively since surgery - mechanical valve & anti-coagulation.

KEVIN RYAN  Thanks, everyone! For those that chose mechanical, I've heard that the On-X valve has been approved for lower INR levels. What is your experience. Is anticoagulation a pain?

Ed Miskovic  About 1o months ago, at 69, I wasn't given a choice because I knew beforehand that I am allergic to Coumadin. My replacement is a bovine tissue type. I had been on daily 325 mg of aspirin for 9 years prior to surgery and simply continued on it after surgery without any other anti-coagulant. My surgeon said that at my age, research data show that the tissue valve would last 20 + years. I was very relieved to not have to face Coumadin again.

Meredith Bray  My personal experience - it was about 6 months before my blood levels settled in. Then 6 months later I received the letter from On-X regarding the lower levels. I insisted on finger-stick testing rather than blood draw testing for two reasons: One, I really hate needles, and anything I can do to avoid a blood draw is good. Two - the finger-stick machine gives you and your nurse instant feedback, and allows you to have a conversation regarding different levels. I get to interact with a NURSE every 5-6 weeks, rather than a phlebotomist who can't answer my questions. My insurance gives me free blood draws, but I pay about $28 to see the nurse. I have 3 locations within a 15 minute drive of my office, so it's not a big deal to step out for a slightly longer lunch and not have to use any sick time.
Please note: I took birth control pills religiously for years, so I was used to maintaining a schedule. Now I have a few other maintenance medications, it wasn't a big deal to just add them in. When my work schedule changed, though, I had to set an alarm on my phone to remind me. I do use a pill-box to help me keep track. (You'll definitely need a pill organizer after surgery - there are several short-term meds you take after you come home!)

What other questions can we tell you our experiences about?

Meredith

KEVIN RYAN  Thanks so much, everyone, for your feedback!!! Really appreciate it!! Just doing research at this point and getting nervous...wake up at night sometimes...paralysis from analysis. :-)