Matt O. posted a note for Hubert that says:
I'm not sure how often you look at your journal these days, but I was interested in reaching out to you because you had the aortic repair, which is a little rarer than the typical replacement. My surgeon actually did a fellowship under your guy, Dr. Baveria. I was just curious about your experience, and whether or not you are back to life as normal.
you can either email me back through this, or go to my journal under Matt O. if you get the time. THanks!
Glad you are doing well. This is Elaine. Not sure if you remember but Dr. Bavaria was also my surgeon 3 years ago. A few months ago I had my postings removed from the site for personal reasons, but as you see once you have heart surgery you are always drawn back to this site. You seem to be more heart healthy conscience than I am, that is great. Something I haven't learned and need to. Have you had your yearly check up with Dr. Bavaria? Hope all was good news. If you would like to respond my email is email@example.com. Take care and God bless.
Hey Hubert, "this should of been the first part of my Message"
I too had surgery 3 years ago to replace my bicuspid aortic valve. I started getting your posts right after I had my surgery and and sorry I never signed your guestbook at that time. I guess I am kind of quiet that way. Regardless, I wanted to this time after reading your last post because I too am very aware of my heart all the time now. I never was before the surgery even though I had know about my bicuspid aortic valve for almost 20 yrs..
Sorry, I hit the wrong key before finishing. As far as being more spiritual, that too has changed in my life. I was always been so a certain degree, but more so now. I give thanks for everyday that I am healthy and strong. I get a few other postings as and some of these people are not as lucky as we are. I wish you the best and hopefully the next update you post is just as good as this last one. Take care and keep up the good work with the critters.
I, too, think about my heart every day. I am so grateful to have been able to get my heart fixed. The surgery was a defining moment in my life, and I like to think I am a better person because of it......kinder, gentler and more patient. I am certainly more appreciative of my health, family and friends.
I just feel blessed.....not because of my crappy heart, but because of all the love and support I've received because of my crappy heart..
I am also very aware of my heart beats. I still have a lot palpitations ....lots of skipped beats and extra beats. Maybe that makes me think about my heart more than most.
I also want to mention that I still get some pain on the left side of my chest and into my shoulder sometimes. It usually happens when I use my pectoral muscles a lot. It was really painful the first year after surgery, but it has gradually gotten better.
Glad to hear you are doing well. Take care and God bless.
I think about my heart every day even though both my valves are working I am having a lot of difficulty controlling my blood pressure. Have kidney disease and was tested to see if narrowing of the renal artery was causing the problem, but not so. So more medication gets added. I am thankful these drugs are available as I don't know where zi would stand without them. I too am more emotional and it started about a week after my surgery (3+ years ago). Continue to do well and enjoy life.
Glad you're doing so well and feeling younger than before? I have been on metroprolol 100 mgs morn and bedtime and probably will be forever. Did you decide to lower your dose on your own or with doctor's recommendation? I personally would not play "doctor" with my meds--not a good idea. Continue to do well.
Hi Hubert! How nice to see you here and to hear you are doing so well.
I am still on metropolol a year+ after my bicuspid aortic valve was replaced. I did not have blood pressure issues prior to surgery, my blood pressure went very low right after surgery but stabilized within a few weeks. I've had no a-fib (or other arrythmia) problems.
It took a while to find a good dosage for me - I take 12.5mg in the morning and 25mg before bed. Any less and my heart pounds (especially when I get into bed) and any more, I get dizzy.
My cardiologist is keeping me on the metropolol forever. (He thinks it can't hurt and possibly can help.) I would fight him on that (I don't like to take drugs if I don't have to) but when I forget to take it my heart pounds so I figure it's doing something good.
Otherwise, I'm doing great. It's amazing how much better I feel.
Hope you are well. We were both so lucky to have Dr. Bavaria as our surgeon.
Not sure if you are still reading your journal but if you are I wanted to respond to you. Prior to surgery Dr. Bavaria mentioned that he would try to repair the bicuspid valve but wouldn't know if he could until I was in surgery. Thankfully, he was able to do the repair.
However, the ascending aortic aneursym was larger than expected and extended into the arch. I ended up having two dacron grafts pieced together, instead of one graft.
I guess I'm not as tough as I would like to think I am, as I still am experiencing tenderness, especially along the incison. I'm sure with time this will subside.
Great report, keep it up. Did you ever find out what caused the chest "pop"? Nothing serious, I assume. I am just a little over 2 months post op and am still sleeping on my back with the head of my bed raised slightly. Had always been a right side sleeper but can't seem to sleep more than an hour in that position. It's really pretty amazing how well we do when one really realizes just what happens to us with our surgeries.
Thanks for the great update. My heart is also enlarged, but most likely it will remain that way. My BP and pulse have normalized with metroprolol and am slowly making progress with my rehab. You are a goal for others to strive for, keep up the great work. So great to have it all behind us, right?
I too would find it a little unsettling to think my follow-up team weren't quite as knowledgeable about the repair as you would like them to be. If your surgeon has done this same surgery before can perhaps he suggest a follow-up cardiologist or are you a one and only? That's good advice from Duane - ask Adam as he might be able to help.
I'm really glad to hear your recovery is moving along and it's great that you feel so confident in your health. Good for you.
Glad you continue to do so well. Are you back out with the cows yet? Keep listening to the Eagles, "Take It Easy."
After reading your latest entry, I can certainly understand why you have some apprehension. I would suggest you email these questions directly to Adam. I'm sure he can't possibly follow everyone's journals. But he may be able to offer some help or point in the right direction. I'm clueless, but I would be wondering too if I were in your shoes.
*Now i am wondering about the auras without the migraine. How did they look? And how are they and the double vision (bummer) related to the heart valve? Is it a blood pressure thing?*
The auras usually look like big, white blotches in my field of vision. I also get some shooting star kinds of things. This happens at least several times a week.
I'm not sure what causes the double vision . . . I was amazed when I read someone describing the exact same thing (on another heart valve site). For that person, it went away after surgery. Even though that doesn't happen often, I hope I never have it again!
Thanks for visiting my guestbook. I have 2 kinds of eye issues that I didn't realize could be related to my heart until I read some comments on another heart valve site. I get migraine-like auras that don't result in a headache (I had migraines when I was younger and I thought the auras were a sign they were coming back. I'm happy they're probably heart related and should go away after surgery - with no headaches!) The second is weirder - I get hortizontal double vision. For example, I'll be reading something on my computer and suddenly each row of type is doubled. The first time it happened I thought I might be having a stroke. I've learned to close my eyes and relax and it usually goes away in 5 minutes. I don't have this very often, I'm happy to say. Because I didn't connct these things to my heart until very recently, I haven't discussed them with my cardiologist. I'm seeing a new cardio on Friday (long story why I'm thinking of changing at this late date) and I'll ask him about it.
I've read your journal . . . sounds like you're doing well BUT you need to slow down (I know, I'm hardly the first to say so!) I had hepatitis years ago and was pretty much on my back for 6 months. Every time I felt the slightest bit better, I tried to do too much. It always set me back farther than I had been. So I learned that lesson the hard way. I hope I can remember it when I'm recovering from surgery!
Speaking of remembering . . . you talk about something called pump head. What is that??
I had the heaviness on my chest until I began taking the Beta Blocker but I see you are already on that. I also have pvc's, double and triple and missed beats but once I started on the blockers, I found a difference. Obviously you overdid it as the rest put you back to normal so hopefully no harm done and a lesson learned about how much you are ready for.
I've been in rehab since late November and oftentimes I increase the speed on my treadmill only to have it reduced by my rehab nurse. She keeps saying my ability that particular day is subject to my pulse and blood pressure readings. Even being tired can make my ability change and overworking your heart at the wrong time doesn't help it recover from the surgery. Of course, I had been programmed before all of this to push myself thinking that will make my heart stronger and never gave my pulse rate or heart rate a thought. Dumb but true. That is one lesson rehab is teaching me.
Your body told you to slow down and you listened. You will have to work up to some things just a little slower than you would like but letting your heart rest or work at what it is comfortable doing is better because you do want it to get back to a more normal size.
Take care. You are sounding a little like Capt'n Bill who hates sitting still. Your wives should be exchanging notes!
Hello from a fellow bicuspid! Did you have a mechanical or tissue valve put in? I have a mechanical and when it's quiet I can hear it ticking - in fact my husband & I's joke is that our "baby" is ticking!
I too had the symptoms you have of overdoing it. Just rest a bit & it goes away. I can definitely tell when I need to correct my posture - my incision pulls if I am slouching! I too had some dilation of my aorta but the surgeon said it wasn't enough to bother with, and my coronary arteries were clear too (and I intend to keep them that way!).
Sounds like you are progressing well! Keep on tickin as Adam says!
I am 8 weeks post op (mitral and tricuspid valve repair and MAZE procedure)and I have also experienced the elephant on the chest and the pulsing vision (I am told that the later is due to anemia) With the chest pressure, it doesn't alarm me - I just put it down to incision, muscle and sinew recovery - but I do put my feet up for a couple of hours if possible until it eases off. Now I do find that I am aware of twinges and pains that I probably wouldn't have noticed prior to diagnosis and I find this site so helpful - guaranteed you will find others who have experienced the same symptoms and it does reduce anxiety. Good luck in your recovery! Warmest wishes Penny (Scotland)
My aneurysm has been measured at 4.6 to 4.8.
Dr. Bavaria seems to be more concerned with the aneurysm rupturing than with the bicuspid valve. Apparently there is a formula that takes the height of the person into consideration when determining when surgery is recommended. Therefore, the way I understand it, an aneurysm of 4.6 to 4.8 may rupture in a person of a small stature than someone who is taller. At the time of surgery, the valve would be replaced or repaired.
I definitely would like to speak with you, whenever it is convenient for you, as both of our medical issues are so similar. I just don't know how to get my phone number to you without posting it on the journal. Any suggestions? My email is firstname.lastname@example.org. Thanks again.
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 grop 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.
Glad to read that your recovery is going exceptionally well. I will soon be having surgery at U of PA, Dr. Bavaria, for bicuspid valve and ascending aortic anerysm. I was wondering did you have a heart catherization prior to surgery or was a CTA all that was required. I'm getting a little nervous as no testing has been scheduled to date and surgery is May 10. Thank you for any info you are willing to provide. Wishing you a speedy recovery.
Great report. The change of drugs does get you wondering but perhaps it's as simple as one doctor just likes a different set of drugs. You'll enjoy rehab because it teaches you what to expect from your newly repaired heart. It's always great to hear when we get to drive again. Whole new freedom from being dependant on others. Keep it up.
I am glad you are getting the message. We HVJ family members can be like white blood cells. Do NOT overdo. Do NOT risk having to have your sternum redone!
I am 10 weeks post-op now, spending a total of 13 days in the hospital due to a stroke and some other complications. When I returned home, I only took 1 Percocet at bedtime and occasionally extra strength Tylenol during the day. Very soon I was just taking Tylenol at bedtime and then nothing.
But I discovered, at least for me, that the generally manageable pain and discomfort traveled around in its locations--shoulders and various places on the chest--as eveything has to heal. A couple of days I had sharp shooting pains when I took deep breaths, which we discovered was due to some continued pericardial effusion (fluid). Now I really don't have pain, but I still sometimes feel what I would call pressure and sensivity along my incision and sternum.
Are you on Coumadin? If so, I was emphatically instructed that Tylenol was the only pain reliever I could take.
Prayers for your continued recovery and patience (so you don't overdo). Take care.
Kim hit the nail on the head - knock it off! I'm six months out from a repair but when I came home, I was using Tylenol Extra Strength only. I remember "pushing" furniture around because the couches were on teflon sliders and I didn't use my arms but instead used my hips thinking I was pretty clever and it didn't count. I paid for it big time with an extra couple of days downtime. It's hard to be patient. For now, go for a walk and if you want to lift something, carry your wife's purse or if you have to look like you have a purpose, strut with your putter .....
I agree with Kim...does it hurt when you do that? ...then don't do that!
You asked how others are doing.
I am a week and a half out of the hospital. I have no pain whatsoever except a little when I sneeze. Only used a few tylenol the last two days in hospital, and none since I got home. But, then, I don't lift stuff.
I feel fortunate, especially after reading Adam's book and hearing what a difficult time he had. Take it easy and good luck!
I am shaking my finger at you.. when Frank was released from the hospital he was to lift NO MORE than 5 lbs.. and thats about how much a gallon of milk weighs.. I too have had some abdominal surgeries and the same rule applied for me.. and then there is the common sense rule.. if you do something and it hurts STOP...Frank is 5 weeks out.. and he just got the go ahead to drive.. and lift no more than 25 lbs.. and the common sense rule.. if it hurts don't do it.. Frank is only taking exta strength Tylenol since he was released from the hospital 4 weeks ago.. he found that it did the job.. and didn't feel stoned from the narcotics.. so as a caregiver.. knock it off and stop lifting mister.. take care
Am at 3 weeks post op, tissue mitral valve and tricuspid repair. Thought they would have to do an aortic repair, but Dr Gillinov said there was nothing they could do to make it better than it was, so good news there. I am not lifting probably even more than 5#, but still get sharp, focal pains as you describe them They only last for a few seconds, but feel like an ice pick for lack of a better word. What pain I do have is between my shoulder blades and that occurs when I lean back and put pressure in that area. Sometimes makes sleep (hence the time) and sitting uncomfortable. Take 2 Vicodan to help me fall asleep, other than that, just xstrength Tylenol. Just curious, why are you lifting more than 10#? As a nurse, sometimes (most of the time), pushing yourself too soon does not speed recovery but may set you back. All things in good time.
Hey Hubert! That is very interesting how they decided to repair rather than replace your valve. Like you my aorta was dilated but not enough to warrant repair. Will go check out the procedure you had online - that sounds fascinating.
Keep being positive & follow those nurses' orders!
You will do fine tomorrow! I will be praying for you. Before my surgery I kept telling myself that I was being "upgraded" and that helped with my worry.
Keep up your positive attitude and you'll be fine!
God bless & good luck!
What a lovely story about the dedication and appreciation of your clients and the cherished handmade gift. You obviously are well loved and it was an honor they chose to thank you as they did. Nicer still that your wife and daughter were invited as well.
I just wanted to wish you good luck on Monday and say I will be looking forward to your post-op journal entry telling us your surgery was a complete success. Hopefully by this time next week you'll be telling us you are on your way home. You and your family are in my thoughts and prayers.
Just a note to let you know of our thoughts and prayers as you prepare for your surgery on Monday. It's almost here, and I know you'll be glad to get this behind you. May you experience God's peace, presence, and healing, as did we! All the best from central Florida!
Re: Your thoughts about your daughter who will know you as a cardiac patient.
Here’s what I’m thinking: Your daughter will see you as her Dad who went through open heart surgery, faced it bravely and recovered, so that he would have the best quality of life possible to enjoy many more years with her.
Your story sounds like mine. The stairs and talking at the same time. Bummer! I had my surgery 5 weeks ago. And I am back to work, walking, driving and all. I found that not stressing in any way (like I hadn't for the past two years) and going into the surgery thinking of the end result and all, you'll do just fine. I didn't even need pain killers other than Ibuprophene. Sounds like you are in great shape too, so that will help in a quicker recovery.
Besides Adam's book, I found reading Peggy Huddleston's book on preparing for surgery and listening to her CD on relaxation and visualization put me into the perfect mind set for a quick recovery. I also used the script found at the end of the book to write up to give to my anesthesia team to read and repeat 5 times to you as you're under and towards the end of surgery was very helpful -- all positive affirmations for a quick recovery.
Good luck. I'm sure you'll do fine. The anticipation is always the worst -- just think of the great outcome and how easily you'll be able to breath again.
Welcome to HVJ. I had a mitral valve repair last October and am now in recovery mode. It is a slow process meaning our minds are willing but the bodies are sometimes a little slow to follow suit. Your being in good physical shape will no doubt help your recovery along but we here are all learning about patience.
I hope you find some guidance, solace and useful information in our stories and journals. Good luck. I'll be watching your journal for future updates. Prayers. Cheryl, Ontario
Sounds like you're very well prepared, and it's good that you've only got a couple more weeks to go until the surgery. The waiting gets to be very draining and I know you just want to get it over with. I had my mitral valve replaced in January, after having to delay and reschedule because of a bad chest cold.
As you've been devoted to the care and well-being of cows throughout your career, you'll be receiving a bovine valve that will improve the quality of your life and health. There's some kind of divine reciprocity going on here, I think.
Good Morning Hubert
I always check out the postings each day and came across yours. A bovine valve for someone who takes care of cows---perfect. Hope your wait for your surgery goes quickly. Seems you've been keeping yourself busy getting in optimal shape. As a doctor you know that will help your recovery. Hope you find this HVJ as beneficial as I have. I've been waiting since early January for my March 18th surgery at the Cleveland Clinic. I will get 2 tissue valves (aortic and mitral). Will find out next week if they'll be bovine or porcine. I'd rather be a mooer than an oinker, but we'll see. Keep posting, I will follow your progress. You'll do well.