Hubert's Journal

Hi Folks, It\'s been 3 years since my surgery. I was glad to see Adam\'s interview with my surgeon, Dr. Joesph Bavaria. Great questions Adam! I am curious if people think about their heart much after their surgery and recuperation has been completed. Reason I ask is that I think about my heart everyday while a person that I happened to sit next to on a plane, who is also \"a bicuspid\" and had surgery, never thinks about his heart except at his yearly check-up. Also, just wondering how many people have become very \"heart-oriented\" after surgery. What I mean by that is that I live lots more at an emotional, heart level following surgery rather than being \"head strong\" as I used to be. I am lots more spiritual now also and my heart chakra has come alive. I think my surgery didn\'t just fix me physically I guess. Guess my heart is both my strong spot and my weak spot. Does this sound familiar to anyone? Best wishes to everyone, Hubert

Hi Group, I haven\'t posted in a while. After looking on-line for \"occasional pain on far left of chest\" and not being satisfied, I realized I should ask my question right here to our group. First, I have gone to a new cardiologist who has allowed me to be off the very low dose metaprolol since my blood prssure is normal after about 4 weeks of not being on it. He put me on hawthorn - standardized so vitexin is about 2-3% and at 500mg 3 times daily. I really like it. I have been rowing on my machine at home here for 20 minutes a day on average. I have stayed at about 185 lbs since my heart surgery in March 2010. (kept off the 30 pounds I lost prior to surgery). So, I have these regular light pains on the far left of my chest, somewhat toward the armpit but lower on the chest wall, basically paralle but to the left of my left nipple. Not like the angina I had prior to surgery in the center left of my chest. But of course it bugs me, being a cardiac person and all. Basically i am wondering if other people have had this same kind of sensation? Any ideas?

Hi Group, It\'s been a long while since I\'ve been at the site here. Things have been going well, had my one year check up in March and everything was 100% with my heart function. I do have some soreness still where the put \"the chainsaw\" (as I like to joke to others) to my chest to open me up. And I sometimes get a good click or crack when I am stretching and it feels nice! I have a question for others that have had a bicuspid valve with a wide pulse pressure prior to surgery (like 140/60) but which has normalized post surgery. my usual blood pressure these days is like 115/80, sometimes 110/70 and the like. I\'ve been on metaprolol (don\'t know the trade name) as a beta blocker that my surgeon put me on in the hospital after the surgery. I\'ve been on it since - until recently. i took myself off it as the dose was 12.5 mg once a day (sub-therapeutic according to my local doc and the pharmacist). I was always feeling kind of weak and sore in my muscles. Though maybe I\'d try that, I\'ll be monitoring my blood pressure more closely again of course. My surgeon doesn\'t want my systolic higher than 130. I meditate now which seems to keep me much more relaxed in general as well. I feel better and stronger actually - like I did when I was much younger in my 20\'s and 30\'s (I\'m 48).. Anyone else in the same situation or considered this? Thanks! Hubert

Hi Sean, When is your surgery date? Are you from the Philly area or coming in specifically for Dr. Bavaria? What kind of symptoms do you have? I hope all goes well for you like for Elaine and me. Hubert

Thanks for your update in my Guestbook, Elaine. Yes, I agree that we were both very lucky to have Dr. Bavaria. I\'m glad you could have the bicuspid valve repaired - just be aware that hardly any cardiologist and echocardiogram technician knows what a repaired bicuspid aortic valve looks like on echo or how to follow it up. Dr. Bavaria said he wants to follow me, so i will have the yearly echo done down at Penn instead of at the heart Group in Lancaster since neither the technician or the cardiologist reading the echo knew what was really happening (as stated above). Glad you got the dacron for the aneurysm. Sounds like you really needed that done, even more than from the diagnostic testing. Its great having a surgeon who can make intra-operative changes as needed. That\'s a real expert! As far as the incision line, I also still have an area which is reminding me of the operation (but otherwise I have no hints of any symptoms I had beforehand). There is one spot where I might have popped the encircling wire (among the bunch of them) that they used to bring my chest bone back together. if I lift anything heavy (> about 30 pounds) I\'ll feel it right away. Hopefully that fades with time, but it seems to have almost become part of the normal now. Oh well, there are much worse things in life. Maybe it\'s god\'s way of reminding me I shouldn\'t push it too hard anymore! Yes, I can be busy and do lots and lots of things again, bt heavy lifting may be a thing of the past. I find walking is my best friend. It\'s easy to do and great for the circulation. I just finished up my cardiac rehab sessions (are you in them?) and they were well worth it. I would recommend cardiac rehab for anyone who has had a heart procedure done. Too bad people only find out about it usually after a heart attack (not the subject of the Heart Valve Journal). My cardiologist dropped the lisinopril (ACE inhibitor) the other day and so i am only on 25mg metoprolol and one ecotrin aspirin a day from the doc. I do still take 440mg magnesium twice daily to keep the PVCs down. Glad to hear from you - keep on gaining strength and enjoy the summer time. Hubert

On the 22nd it will be 8 weeks from surgery - it is amazing how such a major life event, especially right at the time, is actually fading a bit at this point. I really have no more of those twinges or deep aches anymore, so maybe that is part of the fading. Cardio rehab is nice to be in and I look forward to being able to row again (June 22nd). I can go up and downstairs just fine, even a number of times in a row (like when I forget something). People have said i look good (I think they are just saying that). But I have been keeping at the 180 pounds without much trouble. I don\'t really want to lug around those extra 35 pounds again ever! I feel much stronger now throughout the day, though i haven\'t really pushed myself all day long yet. I have been doing a lot of walking which feels really good. I think I was pushing it along in the first 4 weeks and regret that I was - but I felt good! I would say that only in the last 2 weeks have I pretty much felt really normal with the minor exception of first thing in the morning after sleeping on my side (compresses the incision area a bit). Otherwise, all is well.

Hi Group, There actually are two things which still bother me on a daily occurrence. One is that it is possible i popped one of the wires that they used to bring my chest back together. Last week in the middle of the night as i was semi-asleep, i was stretching my chest and heard a rather loud \"pop\". I have had my chest \"crack\" occasionally pre-op and a couple times post-op, and it feels good when it happens. This time it felt rather odd and immediately sore. The other thing is minor twinges and occasional tightness to the left side of the the surgery line. Never the right. I am a little more worried about this than the incision line wire, and not sure what to do. I did mention it at my follow up with Dr Bavaria last week. He immediately listened for atrial fibrillation. But none there (I\'ve never had any on ECGs previously). He said it could be pleural nerves since it is highly innervated. I\'ve never had atrial fibrillation and had a calcium score of zero pre-op for my coronary arteries i.e. clean as a whistle. I am almost 7 weeks post-op, anyone have similar observations?

Hi Group, I had my first follow-up with my surgeon Dr. Bavaria yesterday, at 6 weeks post-op. I am very relieved and happy to report that every heart function measure is now within normal - within just 6 weeks! That means my heart which was 30% bigger just prior to surgery is normal again, the left ventricle size and walls are all normal again. All because Mr. Bicuspid is behaving as it should, thanks be to Dr. Bavaria. He also seemed very very amazed at the rate of recovery and normalization. Dr. Bavaria is a true expert surgeon, without a doubt. I would recommend him to anyone with an aortic valve or aorta situation. I\'m about the 25th person he\'s done this way in 5 years (of hundreds aortic valve surgeries he\'s done - 3 surgeries a day x 3-4 days a week). Apparently, it depends on the diameter of the aortic root on whether or not they can do a repair of a bicuspid valve. He said that no cardiology groups even know what they are doing surgically at the forefront and to just stay with the same group as I\'ve had. More assuringly, he said I could get a yearly echo right at Hospital of U Penn because there is one cardiologist that is following what Dr. Bavaria is doing. I\'m already signed up! I can only hope and pray that others with the same condition can go on to recover the same way. My \"water hammer\" pulse of 150/50 (while totally relaxed under anesthesia prior to incision) no longer has its effects downstream - no more \"pulsing\" in my vision, no more hearing my pulse up through my carotids to my ears and thank God no more pounding away of my heart at slight exertion. As of June 22 (3 months post-op) I will have no restrictions and as of July 22 I will be able to lift whatever weight I want. That means I can go work and play with the cows again! And yet, I am very fully aware that I need to take care of my physical shape by exercise and prudent diet for the rest of my life to keep my corrected bicuspid valve happily doing its job. I will be on the metorprolol beta blocker and linsinopril ACE inhibitor - but that is totally fine with me. I never want to have that high blood pressure again. I\'m really liking the normal area of 125/80 or lower. Life is indeed good. I hope and pray for post-op folks at some point to honestly be able to say: Thankfulness is the Soil in which Joy Thrives

Hi Group, I keep getting better and better, no literal pain anymore, but strong aches for sure if I over do it. As you know from previous entries I\'ve made, my bicuspid aortic valve was *repaired* (remaining a 2 leaflet structure) and not replaced by a standard 3 leaflet bovine or mechanical valve. I am happy about the repair more and more. However,having had an office appointment with a cardiologist from the large group practice left me wondering a bit. Why was I wondering? When I asked him how do patients with aortic valve *repairs* do (in general over time), he said he has no idea since i am the first patient in their practice like that. They have hundreds of patients. Then when I had the echo done last week (which is part of their practice), the technician found my valve really interesting since she\'s never seen one before in 25 years of doing echoes. She had a somewhat difficult time getting good visualization of it. On the echo report which i just got, the cardiologist that read it said \"it is a probably bicuspid valve...\". Probable? It is definitely still a bicuspid valve! So - while it is \"fun\" being a first for the practice group, it is not comforting that the docs don\'t know about the normal \"life\" of a repaired aortic valve. Do I find a new practice? Do I ask the surgeon how many aortic repairs he\'s done locally and ask which practice sees them? Should i ask the surgeon to simply also be my cardiologist since i have a straight forward situation (valve repair) without complications. I probably will have to see him yearly anyway. Thanks for any advice or insights.

I think I over did it yesterday - we went into Philly to a museum. I drove and we have a stick shift Jeep. On the way back out it felt like i had a lot of pressure on my chest (like an elephant sitting on my chest, kind of). I was really worried. I took 3 advil and let my wife drive the rest of the way. i went to bed hoping to feel better today, which I did. Otheriwse i would have checked myself in somewhere. I haven\'t been that worried since leaving the hospital. It must have been the near constant movement of my arms with steering and changing gears (stick shift). On another thing, if i sit more erectly, I can feel my heart beating much more clearly than if somewhat slouched over. I am wondering why. It almost reminds me of my dad\'s mechanical valve sound. However, i fortunatley no longer have a pulsing sound in my neck or at times in my ears. Nor do I see a \"pulsing\" if i am mindelssly looking into the distance (as I had prior to surgery). I know the blood pressure is really great - about 110/70 to 125/80 (I take it once to twice a day at home). Maybe its because the heart is still enlarged? (was 30% enlarged at surgery i was told). Anyone have the same symptoms post-op? Elaine: Glad we could talk last week. I do take metaprolol (which is the general of Toprol) a beta blocker. I got a nearly full sternotomy, everything except the wishbone and an inch below there. I think they did that because they were figuring on working on the ascending aorta. I have an echo and a chest x-ray on Tuesday. I\'ll ask the technician about my symptoms from yesterday.

Hi Elaine, Wow, sounds like the exact same thing i had. Are you from the Philly area? I\'d be glad to talk with you on the phone if you like. You are in excellent hands, that\'s for sure! I had a CTA done (that\'s what Dr. Bavaria insisted on from my cardiology group in Lancaster, PA.). I had a zero calcium score, which did away with the need for catheterization pre-op. There is a silver lining for us \"bicuspids\" - usually the coronary arteries are clean as a whistle. Also, the dilated aorta that was shown on diagnostics at 44mm turned out to be on high normal (38mm) during surgery with them measuring it directly, therefore no work had to be done on it. I asked my cardiologist yesterday about why the difference and he said it is sometimes because of the way the image is shown on cross section (maybe slightly skewed). Hopefully you are in the same situation, although bicuspids are known to have the dilated ascending aorta (due to the same developmental abnormality when still in-utero). May i ask what your diameter was measured at? Any calcium build-up on the leaflets? While he never told me of the repair option and did it \"on the spot\" at surgery due to factors favoring it, you might want to ask him beforehand. Minimum testing would be a bunch of blood work down at the Perelman Center (near his office), echocardiogram, CTA and a simple chest x-ray. You kind of have to push things along with his office. I think he is understaffed as far as administrative help. Have you had an office visit with him yet? To put you at ease a little, i had a great experience at U Penn (such that it can be!). Wonderful cardiac nursing for sure. Best wishes, Hubert

3 weeks post op and i had my first cardiologist appointment this afternoon. Everything seems good, EKG/blood pressure, etc all right in line. I do have an echo and chest x-ray next week in preparation for my visit with the surgeon on May 4th. I\'ll be starting cardio rehab this friday and look forward to getting back into working out in a light way - towards my rowing machine at home at some point. The cardiologist said i have *no restrictions* at this point - therefore i can drive again. Yet I have enjoyed doing errands with my wife driving! The focal chest pains have subsided greatly over the past couple days thanks to everyone\'s advice about simply being smarter about NOT lifting things. The cardiologist said that everyone has different responses to the chest sternotomy so some will have no pain real quick and others will have occasional lingering pain for a few months (I\'m probably going to be in that camp). I had a different cardiologist today than the one I\'ve been seeing for the last year. He put me on an ace inhibitor instead of the amlodipine/Norvasc that the other cardiologist had me on. Apparently, aortic valve disease is very amenable to the beta blocker and ace inhibitor angle. So i am wondering why the other fellow had me on the amlodipine/Norvasc calcium channel blocker all year (it never really did bring my BP down). I like the beta blocker (Lopressor) they put me since surgery as it slows me down and relaxes me slightly (I\'m generally very active). I promise to NOT lift things over 5-10 pounds and I promise to simply still take it easy and read a book out in the garden most of the time - and nap whenever I feel like it! Thanks for all the great support and advice here on HVJ!

Hi Duane, I am not on coumadin. I\'ve been instructed since discharge to take one aspirin in the AM. I called the surgeon\'s office about the Advil and one of the nurse\'s said it would be fine. I am also on omeprazole, which does protect the stomach. I also take amlodipine in the AM and a Centrum vitamin. At night it is just metaprolol. On top of the doc\'s Rx just described, I also take a magnesium supplement, vitamin E and Coenzyme Q10 twice daily.

OK, after the first response and then the others, I totally hear you. I will be very vigilant over the next bunch of days to do zero lifting at all. Guess I am so used to lifting and pushing things in regards to cows and farm stuff that I really don\'t know how light something is for it to be a mere 5-10 lbs. Yesterday, I helped pump up a tire with a bicycle pump - that\'s not lifting, but I paid for it. Then later on, we bought some lawn chairs - they\'re pretty light, but I found out they are more than 5-10 pounds! I\'m even wondering about my laptop now! I don\'t like Tylenol but do like Advil and take 3 Advil occasionally if needed. The dilaudid keeps me awake actually, so I only use that during the day if needed. The Advil does help me fall asleep easier. On a different point, I am not sweating as much at night. Man I sweated a whole lot for the first week and a half at night. Kind of malarial symptoms, sweat at one point and some other time be freezing then warm up to normal again. The visiting nurse said it is due to the total disruption of normal circulation during surgery. At least it is abating now. Also had a good many vivid dreams again last night. I have a very active dream life, so i think it\'s a good sign to have them coming back again. OK, just reading, walking and the stationary bike. The visiting nurse said it usually takes one day of over doing it to have it really sink in to STOP overdoing it and realize its OK to totally take it easy. No Problem!

While i am enjoying R&R, I find that I\'m feeling well enough that I am lifting things i probably shouldn\'t be. Not necessarily really heavy, but perhaps a bit more than the 10 pound limit. Then i pay for it big time with chest pain later. My heart seem to be beating better and better and my blood pressure is really good (I take it twice daily). Just wondering how others were/are at 2 and a half weeks post surgery, in regards to occasional sharp focal pain. I still have my dilaudid, which I take once a day even though it is prescribed for every 4-6 hours. They gave me 30 (a 5 day supply) when I was discharged and i still have 16 left after 12 days back home. Not sure if i am over doing things or is this normal to have an occasional sharp pain after activity and errands (my wife driving of course).

Hi Group, Thanks for all your great wishes last Monday. In a nut shell, things have turned out very well. Granted I was bummed when I woke up after surgery to find they did not put a cow valve in me nor did they work on my aorta. The surgeon decided on the spot to repair my aortic valve, via the El Khoury method from Belgium. (there\'s a paper about it on line). He basically re-sculpted my bicuspid aortic valve to be a fully functional valve with zero murmur. The aorta showed to be only 38mm during surgery, so they didn\'t do anything because that is normal (high end but normal). Diagnostics showed 44mm. Not sure if all my exercising and weight loss may have helped, I\'ll have to ask at my follow up appointment in May. But with the repaired aorta, I theoretically won\'t have to be re-operated again. Except that my heart was 30% larger than normal and the ejection fraction only 45%, which meant i was in congestive heart failure and the surgeon said i was in critical shape (but i was just rowing 5000 meters on my machine the day before!) If the heart doesn\'t come down in size within a year with a medicine, I could be looking at a transplant (that thought freaks me out). But by being smart, I plan to beat that option. The first couple days were rough. I hated the Foley catheter into the bladder the most of all. Yet i found that if I followed the cardiac nurses suggestions and directions, everything kept getting better. I could have been released on Friday, but they kept me until Saturday for safe keeping. So I got home 3 days ago. I still haven\'t slept the night through, but like in the hospital I keep waking up every couple hours. But the pain is so much less that I thought it would be. Rather minimal really. No antibiotics since about 2 days after surgery. Only 2 blood pressure meds and aspirin and vitamins and colace softener. Interesting itching 2 days ago in a large rectangular area over my chest, then yesterday it was a much smaller perimeter and today it seems like its all right on the surgery line. The visiting nurse mentioned the nerves reconnecting. I actually feel very normal, though I do find breathing to be occasionally troublesome for a few moments. But I thought I\'d be flat in bed most of the day and I\'m actually up and around looking for intellectual stimulation. I walk twice around the yard (an acre in size) twice a day. I hope things keep going this path!

In the short time I\'ve been part of this HVJ, I really have come to enjoy the comraderie and support, Thank you Adam for setting this all up. During the past week, I came to the realization that I am going to be fixed. Simple thought but also very upbeat as well. No longer the whole issue hanging over my head like for the past 6 months. The worring is coming to an end. Now it is time to get it done, be fixed, and move ahead. Additionally, I just had the most wonderful afternoon with my former dairy farmer clients. Without my knowing it, and my wife and daughter keeping it a secret, the farmers and their wives put together a really memorable \"thank you\" appreciation gathering for me at one of their farms. All the farmers are Amish and little did I know how much they really, really have appreciated what I have done for them as organic farmers and developing treatments for infectious disease not using antibiotics (that\'s a whole other story). What blew me away was the quilt that the wives made as a gift. My wife and daughter had stopped in at a farm where all the women were gathered making it last week. Amazingly beautiful. And the hand made Thank You card signed by many of my former clients. Food of course, and this time I gorged! (One of the benefits of having lost weight was to go for a reward). My daughter was playing on the trampolene with the farm kids for a couple hours. We adults all sat in a big circle and talked cows, memories of tough calvings, miracle stories, the current farming season, milk prices, friends that couldn\'t make it and on and on. To top it off, it was sunny and about 70 degrees. An absolutely perfect day for my \"send off\". Well, time to tie up a few loose ends before tomorrow and heading into Philly later in the afternoon for an early start at 5:45 am Monday morning. I was informed that I am slated to be first up. That is kind of nice actually. Bye for now.

Yes, you are right of course. It is difficult however to not be reminded of my interaction with my dad. His heart problems were kind of his own and we certainly supported him, but maybe his old fashioned upbringing in Holland in the 1920\'s and 1930\'s kept him a bit more reserved about really discussing it. I must say that he never complained once about all his time in and out of the hospital. I will have a picture of him in my hospital room to remind me of his strength in that way. And, again, you\'re right in that my relationship I had with my dad simply isn\'t the same that I now have with my daughter. Hopefully i can be a good example to her of making it through OK without complaining (at least not too much), like my own dad. Just curious if there are many HVJ members that also have other direct family with bicuspid aortic valve and associated other anomalies?

Hi group, Wow! I can\'t believe how many people are so involved with this heart journal website. I must say it makes me feel very comforted knowing that there are so many people in the same circumstances. Someone asked how do i feel being medically trained and having to go through this. First, i grew up with my dad being a cardiac patient (hey - I inherited my condition from him afterall). So i kind of have known about cardiac stuff my whole life (in and out of hospitals with him for years - he had bipolar as well, but i think perhaps cardiac depression triggered it?). Then there is the medical knowledge. But like I say, the crowning achievement of modern medicine is intricate surgery and emergency medicine. (Chronic problems on the other hand are perhaps better handled using alternative methods and good old fashioned smart life style). While watching the videos of actual valve replacement, I get kind of creeped out, but I don\'t like human blood situations. Animals no problem, humans all together different. Having read all the diagnostics they ran on me (zero calcium score on the cardio thoracic arteriogram CTA is bonus since it means the coronary arteries are clean as a whistle), which they say is a silver lining for folks with bicuspid aortic valves. I guess with the medical insights I decided to get in best shape as i could. But honestly, alot of buttons have been pushed psychologically because of having grown up with my dad being a cardiac patient and now my daughter who is 7 will know me as a cardiac patient. Fortunately, however, my condition wasn\'t as severe as my dad\'s and the advances in cardiac care as compared to the early to mid 1970\'s is probably not comparable. But still, it\'s the psychological aspect that probably is getting me the most, regardless of what I know medically. Thanks for all the great folks here!