Roger's Journal

Saw 2 cardiologists today at OHSU (Portland) who both said that they don't think that I currently need another surgery at this time. They both said that they don't see moderate leakage from the aortic - and that they would only suggest a 3rd surgery if things got really-really bad. Regarding my EF, she said that it's not normal, but that there's a 5% variable in readings of EF. They added low dosage lisinopril to my meds & agreed that I should also remain on carvedilol. They told me to back off the weights. They both said that moderate weight lifting is okay, but not straining since it places pressure on the heart valves. They encouraged cycling, jogging, or stair master - but even then to not keep my HR too high for too long. I will go back for a more detailed echo in 4 months. She said they use a high contrast that gives a perfect picture of the heart at the university. They really are on top of their game there. She also okayed me to take supplements designed to raise EF (see here: https://www.drsinatra.com/best-heart...ts-to-consider). She said there's not a lot of clinical data on these supplements (e.g., CoQ10), but that she didn't think they would harm me. Not sure just yet if I will try these or not inasmuch as I realize that supplements can be dicey. Concerning potential auto-immune disease, she said that she thought that I would be having more symptoms if this was indeed the case. I did inform her about a timeline of infections (e.g., staph, gum infection, etc.). What really impressed me was that she actually inquired about my time line. She was truly probing for clues & took time to answer my questions. Curious about the side-effects of lisinopril (I understand that it lowers blood pressure)? Just wanted to post a quick update - and thank everyone for all of the input. I even referenced the forum to them!

As some of you may recall, I had my 2nd mitral valve replacement (w.in 1.5 yrs.) done last April. On-X 23mm. Have a handle on the INR/Warfarin thing now. Home test weekly. Well, yesterday I had an echo done & they said I have developed moderate aortic regurgitation in a matter of 3 months (was not there in Sept. 2017 echo)! Ejection fraction (EF) of left ventricle (LV) is down to 45%. I have indeed been noticing shortness of breath again & heart beats hard upon exertion (back in gym again). I had stopped the carvedilol because it was wiping me out & my cardio said I could just try to go w.out it & see if that helped. Thinking perhaps I should not have done that now since he indicated that it raises EF (?). Regardless, I started back on it today. Here's the copied results: Summary: The LV Ejection Fraction is: 45 % Normal left ventricular size. Mildly reduced systolic function. Diffuse, near global, left ventricular hypokinesis. Normal right ventricular size and physiologic function. Normal atrial dimensions. Aortic valvular sclerosis without stenosis. Moderate eccentric aortic regurgitation. Mechanical mitral valve prosthesis appears well seated. Mean prosthetic mitral valve gradient is 5 mmHg. Trivial prosthetic regurgitation. Unable to estimate right ventricular systolic pressure due to lack of tricuspid regurgitation/measurable velocity. No pericardial effusion. *I am following up w. specialist in 3 weeks at university in Portland, OR (OHSU). Any input or insight when you have time would greatly appreciated. Simply cannot believe this....looks like another surgery is imminent if it's deteriorating that fast. Appreciate this forum!

Just received the results from a CT scan today. Going to see a specialist in Portland Tuesday for a right lung hernia from first surgery, which was minimally invasive - & they wanted to see a CT scan first. Two things got our attention on the scan findings (copied below): Mediastinum: Coronary artery calcifications are present. Lungs/Pleura: Right hemidiaphragm remains elevated. **My thoughts: They were just in there in April & told me my arteries were fine (?). I have read that there is no treatment for calcification other than replacement - depending, of course, on how bad it is. We noted that the findings said "calcifications" (plural) are present. Obviously we are thinking, "Not another OHS this soon?" Would be number 3 for me within approx. 2 years (not even completely over the first one yet). The surgeon I'm seeing Tuesday is phenomenal w. unreal credentials & experience (https://www.jaiheart.net/). Hoping he will address this issue as well. Was just curious about your experiences and/or knowledge of this issue. Blessings to all!

Just read the following (very recent) testimony from another forum & found this quite eye-opening regarding the FDA approval of lower INR range for the On-X valve. Enjoy: http://www.valvereplacement.org/forums/forum/valve-selection/878615-failure-of-onx-valve-and-problems-with-lowering-inr

Hi all. I had OHS about 3 months ago for mitral valve replacement (my 2nd OHS in a year & a half). Went w. On-X mechanical, hence I'm on warfarin. This time was full sternonomy. First surgery was minimally invasive (tissue valve failed after merely 1 year). My incision has a "bubbled" look at both the top & bottom and I constantly have the urge to stretch it. I do the door-jam stretches (from a link someone posted on this forum), foam roller, etc. to offset the formation of adhesions - but I was just wondering if there are any additional stretching methods or perhaps scar gels that enable the scar to heal more quickly? Thinking about trying cryotherapy for my torso inflammation since I cannot take NSAID's (due to the warfarin) & I'm still in a fair amount of cartilage & tissue pain after 2 OHS's in such a short time. This may sound silly, but, honestly was wondering if the extreme cold temps. could potentially affect my mechanical valve at all (perhaps a question for my cardio?)? Thank you much in advance. Really like this forum & have learned a lot on here. Blessings to all.

Quick question for warfarin users & those w. a mechanical valve: My puppy just nicked my finger & it bled some (my INR is currently high at 4.2 today). I am 8 weeks post-op. today w. an ON-X mitral valve. Is this cause for concern regarding endocarditis? Thank you in advance - Greatly appreciate this site!

Sooo, I am right at 6 weeks post-op. for an ON-X mitral valve replacement (2nd OHS in 1 yr. & 8 months). Today the Coumadin clinic tested my INR & it was 5.8! They sent off for a lab test & it came back 6.3! They had me hold tonight's dose & drink green tea to bring down my INR. Has any one else w. a mechanical valve had issues getting their INR stabilized post-op.? I assume this is why they want you to wait to reduce the anti-coagulant for the ON-X valve until 3-4 months post-op.? Greatly appreciate this forum. Have learned a ton on here. God Bless to all!

I am now 5 weeks post-op. w. an ON-X mitral valve & still having a fair amount of pain in the lower right sternum area, as well as the top of the incision (still bruised & a bit swollen). I am only taking 5mg of Oxycodone daily now (no worries about addiction - I absolutely despise taking the stuff). 2 quick questions: (1) Is a significant amount of pain at this point in post-op. normal? Nothing debilitating, just definitely still there. (2) I worry about disunion (i.e., that the sternum bones are not growing back right) as a possible cause of the on-going pain. Any thoughts? Walking about 2-3 miles/ per day w. ease (I usually just stop out of boredom). Thank you in advance (greatly appreciate this forum).

Hi Gang! Don't yet know how to upload a pic., but will do so soon. Just wanted to say what a blessing this site has been to my recovery. Excellent info. & seemingly very caring folks. 3 weeks out of my 2nd OHS w.in 18 months. Had a mitral valve replaced w. a tissue valve in Oct. 2015 - which failed 1 year later (was supposed to last approx. 10 years). This time had to go w. a mechanical ON-X mitral valve. The danger is that the surgeons are still not sure what caused the first (tissue) valve to fail so quickly. The surgeon said he removed some sort of a membrane that was a "stroke waiting to happen" (his words), but is not sure what it was. Naturally, this leads to the question - what if this springs up again so soon? My surgeon has already stated that he would not want to be the one to perform the 3rd surgery should this anomaly arise again. Hence, my question: Are there mitral valve specialists-surgeons on the west coast that comes highly recommended? I live in Southern Oregon so I can be anywhere on the west coast in a day easily. Not being paranoid, just trying to be proactive is all :)! Also, what is the story on the ON-X valve? My surgeon stated that after 3-4 months of normal Coumadin therapy (INR range of 2.5-3.5) that the ON-X valve allows for a lower INR range. However, my research indicates that anything below 2.0 is asking for trouble - but perhaps not so w. the ON-X? Just wondering what info. you all might have on this particular mechanical valve? Any tips to living on Coumadin would be greatly appreciated. Honestly, it is a bit intimidating at this point. Still slow recovery, but am walking almost 3 miles/day now. Thought I read where someone said that after 4 weeks you turn a corner? Sure hope that is the case! Thank you again for this site Adam! I really appreciate the positive tone on here. Many blessings to all & thank you for your time!

Tips for speedy recovery from OHS? As I posted about a week ago, I am now a little over 2 weeks out from a very difficult mitral valve replacement (2nd one in 1.5 yrs.). Honestly almost did not make it out of it. Now, I am home & it just seems a waiting game for the sternum to heal? Was wondering if there are any tips from you OHS veterans on this site regarding speeding things up as much as possible (I realize there's only so much a person can do w. a broken bone)? My schedule is simply: Wake-up, eat, walk for 30 min., shower, nap - then repeat the process in the evening, walking for another 30 min. Then I usually play on-line until bedtime. Wondering if there's anything that I am not doing that perhaps I should be doing to speed up the process? Thank you much!

Wowsie - simply Wowsie! Seriously almost didn't make it through this one. Pain was over the top (even accord. to the surgeon, staff, etc.). Developed a herniation that slipped between the ribs. Also developed Pneumonia 2 days after surgery & had to go back on ventilator for 2 days w. 100% oxygen. Surgeon told wife "This is serious" at that point & that he could not "predict the future." Slowly began to work out of it though. The surgeon removed a piece of "something" that was a "stroke waiting to happen" he said. Sent it off to be tested. Said the clump of "whatever" just easily came loose when he removed it. Received an On-X valve w. an INR range of 2.5-3.5 for now. It's currently stalled at 2.1 (almost 2 weeks post-op. now). Hence, I am bridging w. Lovenox & they have upped my Coumadin intake to 11.25 mg. for next 3 nights in an attempt to get me off the Lovenox. However, the surgeon stated that w.in a few months we hope to shoot for lowering the range due to the On-X valve. Of course, the disconcerting thing is that no one knows what caused this & thus cannot predict whether it will pop up again or not. Honestly do not think I would make it through another one if this one is any indicator. And, the surgeon said that he would not want to be the person performing the 3rd one since this one was so extremely difficult according to him. Spent a while at the Coumadin Clinic today talking to a lady about the dangers & regulation of warfarin. Though I could be mistaken, a few of her comments were a bit concerning. (1) She stated that once we get me into the current range of 2.5-3.5 that she thinks that a once/month check is fine if the INR level is remaining consistent. I told her that that does not sound right since that's quite a long ways in between tests. Of course, she disagreed (the very reason I despise dealing w. stubborn doctors). Until I can get into self-checking I am left w. no other option I guess. (2) She stated that if I were to receive a blow to the head or a bruise that looked ugly & was growing that I should go to the ER immediately. This made me wonder about bruises that pop up when someone accidentally jams an elbow on a door frame, stubs a toe really bad, hits a shin, etc. - all causing pretty serious bruising (w.out even being on an anti-coagulant). To illustrate, about 6 months ago I was walking through the house barefoot when I accidentally slammed my toe into a door jam, clearly breaking it. It was horrid pain. Well, would a broken toe of finger merit a trip to the ER now that I am on Coumadin? Or, what about when we are bending over & then raise our heads quickly & slam it into a desktop or hit your head on an overhead beam, etc.? Am I to run off to the ER every time something like this happens? Not being funny when I ask if I should purchase a pair of steel-toed work boots, cow-hide gloves, etc.? I realize that y'all were being humorous when you answered my question about nose bleeds in an arid climate like Arizona, but, seriously, there's not a time that I don't go there that my nose doesn't start gunking-up w. blood almost as soon as I get there - and that's w.out Coumadin! How do I offset this? I would have the same question about high elevations, etc. Finally, the surgeon has placed me on Carvedilol 3.125mg. tab, 2x's per day - & stated that he would likely leave me on this beta-blocker (I already have 11 refills). Is this really beneficial? Or is it just another unnecessary drug I have to be on? Will this beta-blocker impair my quality of life even more than the Coumadin? Just honest questions drifting through my mind. Really concerned about the insistence by the Coumadin Clinic to only have INR checked once/month - which I fully anticipated. Again, I want to thank every-single person who has taken the time to educate me on these topics (no doubt I will have more questions as time rolls)!

Hi all. I posted this on my Journal, but not exactly sure how this forum works, so not certain if it was seen by everyone on here. If so, pls. excuse the repeat post & chalk it up to a newbie's inexperience :). Just found this forum & have immensely enjoyed the read. Excellent info.! Here's this newbie's story (I apologize in advance for questions you've undoubtedly answered repeatedly): In Oct. 2015 I had a mitral valve replacement via minimally invasive procedure in Phoenix, AZ. Minimally invasive, maximum pain! Epic tissue valve (I think Porcine?). Model #: E100-31M-00. Was told it would last about 10 years, or, worst case scenario, 5 years. Well, one year later I started having shortness of breath again, just as before. Echo revealed "significant stenosis"of tissue valve. TEE revealed a "shadow" under the replaced tissue-mitral valve that no one knows what it is. Have spoken w. 1 cardiologist & my case has been presented to 3 very experienced cardio-thoracic surgeons. Cardiologist said he thinks it's a sub-valvular membrane (have no clue what that means). Still, no one has ever seen a case like this (go figure). Summation: Having my 2nd OHS next Thursday (April 6th) w.in a 1.5 yrs. - this time full sternotomy (which mortifies me after reading about the procedure & subsequent wire problems). Surgeon said he would not do the operation if I chose another tissue valve since - even under excellent circumstances - I would very likely need a 3rd surgery (I'm a 49 yr. old male). My surgeon, who is approx. 60 yrs. old & very experienced (a man), said that a 3rd OHS would be dangerous & he really thinks my best chances to avoid a 3rd surgery is a mechanical valve. Although, he said we cannot guarantee that whatever has caused this will not cause it again since they cannot identify the culprit. Should this happen, we have no idea what the next step would be (is a 3rd operation possible in such a situation?). Have read about the Coumadin regulation. Both scary & comforting at the same time. My questions are, I am wondering where to get a self-check unit for my INR? And, how on earth will I know how to dose it? I know absolutely nothing about it & despise the idea of going on this med. I am very active in exercise & fear that my quality of life is over. I also pastor a church & worry that I will be forced to resign due to the poorer quality of health...not to mention how many stories of strokes I've read for folks on Coumadin. Worse, I also have to have dental crowns put in soon. The surgeon suggested that I wait until at least 6 weeks after surgery to have dental work done & that I would have to wean off of Coumadin for a while before the dental work (taking a shot of something [Lovenox?]). Then work my way back into my dosage. The INR thing is worrisome to me since they tell me it can be tricky to find an individual's particular ratio & can fluctuate significantly post-op. for quite some time (?). I am a thin guy (about 5'9" 160 lbs.) so I also worry about the wires hurting afterwards & stopping me from working out or preaching after the sternum heals (about 3 months later). Finally (my apologies for long post), after much reading, I have also asked my surgeon to apply SternaLock to secure my sternum in addition to the wires & brackets. But, I fear that this can cause more pain (i.e., the screws)? I am very concerned that excessive coughing, sneezing & using the spirometer afterwards will cause disunion of the sternum. Having the surgery done in Medford, OR where I reside. Again, my apologies for such a lengthy post. Any advice would be greatly appreciated by wife & I!

Hi all. Just found this forum & have immensely enjoyed the read. Excellent info.! Here's this newbie's story (I apologize in advance for questions you've undoubtedly answered repeatedly): In Oct. 2015 I had a mitral valve replacement via minimally invasive procedure in Phoenix, AZ. Minimally invasive, maximum pain! Epic tissue valve (I think Porcine?). Model #: E100-31M-00. Was told it would last about 10 years, or, worst case scenario, 5 years. Well, one year later I started having shortness of breath again, just as before. Echo revealed "significant stenosis"of tissue valve. TEE revealed a "shadow" under the replaced tissue-mitral valve that no one knows what it is. Have spoken w. 1 cardiologist & me case has been presented to 3 very experienced cardio-thoracic surgeons. Cardiologist said he thinks it's a sub-valvular membrane (have no clue what that means). Still, no one has ever seen a case like this (go figure). Summation: Having my 2nd OHS next Thursday (April 6th) w.in a 1.5 yrs. - this time full sternotomy (which mortifies me after reading about the procedure & subsequent wire problems). Surgeon said he would not do the operation if I chose another tissue valve since - even under excellent circumstances - I would very likely need a 3rd surgery (I'm a 49 yr. old male). My surgeon, who is approx. 60 yrs. old & very experienced (a man), said that a 3rd OHS would be dangerous & he really thinks my best chances to avoid a 3rd surgery is a mechanical valve. Although, he said we cannot guarantee that whatever has caused this will not cause it again since they cannot identify the culprit. Have read on here about the Coumadin regulation. Both scary & comforting at the same time. My question is, since I live in the US, I am wondering where to get a self-check unit for my INR? And, how on earth will I know how to dose it? I know nothing about it & despise the idea of going on this med. I am very active in exercise & fear that my quality of life is over. I also pastor a church & worry that I will be forced to resign due to the poorer quality of health...not to mention how many stories of strokes I've read for folks on Coumadin. Worse, I also have to have dental crowns put in soon. The surgeon suggested that I wait until at least 6 weeks after surgery to have dental work done & that I would have to wean off of Coumadin for a while before the dental work (taking a shot of something [starts w. an L?]). Then work my way back into my dosage. The INR thing is worrisome to me since they tell me it can be tricky to find an individual's particular ratio & can fluctuate significantly post-op. for quite some time (?). I am a thin guy (about 5'9" 160 lbs.) so I also worry about the wires hurting afterwards & stopping me from working out or preaching after the sternum heals (about 3 months later). Finally (my apologies for long post), after much reading, I have also asked my surgeon to apply SternaLock to secure my sternum in addition to the wires & brackets. But, I fear that this can cause more pain (i.e., the screws)? I am very concerned that excessive coughing, sneezing & using the spirometer afterwards will cause disunion of the sternum. Any advice would be greatly appreciated!