After “Waiting Too Long”, David Has Heart Valve Surgery Before Aneurysm Ruptures
Here is some great patient advice from David about (i) treating heart valve disorders in a timely fashion and (ii) being your own, best patient advocate. David wrote to me:
Hi Adam,
I’m a 55-year old man living in Maine. I just underwent aortic valve and ascending aorta replacement surgery on November 10, 2009.
I’m writing you for a very important reason… To encourage other patients with serious valve disorders (e.g. aortic stenosis, mitral regurgitation) to get surgery. So you know, I waited too long.
David Belisle - Heart Valve Replacement Patient
I should have had my valve replaced three years ago. Instead, I chose to lie to myself that my symptoms were just a sign of old age. As you know, nobody wants to have cardiac surgery. But when you need it, have it done. As a result of the delay, my heart valve disease caused an aortic aneurysm that could have ruptured at any time. I was very lucky.
Also… The biggest challenge, for me, was just being uncomfortable the first few days after the surgery - especially in the hospital. I could not get any sleep. The nurses woke me up every hour for insulin shots.
My surgery was done at the Maine Medical Center in Portland Maine. I did all my online research and found the best surgeon, Dr. Paul Weldner of Maine Surgical Associates, and hospital in New England (in my opinion).
One other point for patients to consider is, “Don’t be afraid to speak up if your care is being compromised!” My first night out of ICU, I was sharing a room with a man who broke his ankle in a motorcycle accident. It was the only bed available. Needless to say, he had about 10 friends come in to visit him. That did not help my sleep problems. However, I spoke to Dr. Weldner and the situation was immediately taken care of.
Keep up the good work Adam!
Your heart valve surgery book was incredibly helpful!
David Belisle
P.S. To leave a comment, please click here.
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November 23rd, 2009 at 10:08 am
I could not sleep for 3 days after surgery. It is quite normal what with all the morphine, etc. In the UK, I was operated on in a specialist unit, so the other patients were all cardio thoracic surgery patients.
As to having the surgery in a timely manner, my dad died at 63. The only visible symptom in the post mortem was the floppy mitral valve. Everything else was tick a boo. They reckon it was a combination of increasing heart failure due to the MV regurgitation and arrythmias / palpitations, caused by the incipient heart failure.
I had a floppy mitral valve diagnosed three years ago, so, when I got endocarditis and the doctors recommended heart surgery, I got a second opinion and then went for it. 5 months later, I am playing tennis again… and winning!
Andrew
November 23rd, 2009 at 2:23 pm
I agree wholeheartedly (no pun intended) about being your own best advocate. I had kidney disease for 16 years that ended in a sucessful transplant. Along the way, they found my mitral valve problem and I am applying the “lessons learned.” I will be getting my mitral valve fixed in Jan 2010. You are your own best caregiver.
November 23rd, 2009 at 2:39 pm
David, thank you for sharing your experience. I’m trying to find a surgeon and hospital now which my insurance covers. I need an aortic valve replacement, and everything in me wants to run and hide. Maybe it will all go away. (Of course, I know it won’t.)
I’ll take your advice to heart (there are those puns again!)
Phyllis
November 23rd, 2009 at 3:20 pm
I really like to hear all the comments above , as I am without symptoms and is going for mitral valve surgery next monday. Of course I know it is not good to wait but it is a bit difficult to lay down in the surgeryroom feeling very well and know that you wake up not feeling so well.
So your comment about not to wait help me feeling even more motivated.
I am going to have my surgery in Thorax clinic in Stockholm , Sweden.
Regards from Fred
November 23rd, 2009 at 3:30 pm
Hi
I have a similar situation I have AS and a Aortic Aneurysm of 4.4 (last measurement)
My surgeon says to go in and my cardiologist says I can still wait
What size was your Aortic Aneurysm when you got the operation and what type of valve did you go with
Any suggestionsadvice will be well apprcisted
I have put this into Gods hands
Thanks
Pat
November 23rd, 2009 at 3:45 pm
So glad you had the surgery and are getting back on track!
I agree with the self advocate too…I shared a room with a 97 year old sweetheart but she was not always sure of where she was or what time it was and wasn’t a restful sleeper so a kind nurse who knew the importance of a good rest and sleep moved my whole bed, lock stock and barrel, into the day surgery recovery room for one night and I slept like a baby…it will be four months tommorrow and so far so good, though this week for some reason I’m back with chest discomfort and can’t sleep much, however at two months I travelled by car from our province to the East coast and back by car for a family wedding!
Hang in there and i’m envious….my pillow wasn’t shaped like a heart, just a square!!!
debbie
November 23rd, 2009 at 5:25 pm
Dear David,
My cardiologist and surgeon are trying to wait as long as possible because, in my case, the risk of the surgery apparently outweighs the risk of aneurismal rupture.
I have a bicuspid aortic valve, an ascending aortic aneurism of between 5.0mm and 5.3mm (depending on how it’s measured) and an aortic arch aneurism of 4.0mm. The last bit makes it tricky; hence the wait.
I feel like the proverbial sword of Damocles is hanging over my head.
It’s comforting to know others are facing similar situations.Best wishes to all.
Toni, Sydney Australia
November 23rd, 2009 at 6:45 pm
To David’s advice to NOT WAIT if one has a serious valve/heart defect to have it repaired. Modern medicine performs near-wonders in this area.
My situation was very close to yours David. In my case, one cardio guy urged me to continue to wait “for symptoms”. We studied the statistics from the tests, and consulted another. When the second set of tests came in, it was obvious the situation needed to be addressed sooner than later. When the old valve came out, the surgeon’s opinion was “it’s shot.”
I wouldn’t have made it much longer without a heart failure and who knows what damage. Having it done on a heart with still-healthy muscles helped me recover quickly. Thank you very much for sharing your experience, David!
November 23rd, 2009 at 9:20 pm
I’m so glad you had a good outcome.I would love to know the size of your Aneurysm.I too have Aortic stenosis and an Ascending Aortic Aneurysm of 4.3 cm.I haven’t seen a surgeon yet and I’d like to know your circumstances.
November 23rd, 2009 at 9:59 pm
I had mitral valve repair and an atrial/septal aneurysm repair done In July 2008. I was 51 years old and like you, blamed my extreme shortness of breath and not being able to lie down to sleep due to cough to aging. Finally, when the chordae on the mitral valve broke I was completely unable to climb even the smallest of hills and knew something was wrong. While doing the surgery to repair the valve the aneurysm was discovered. The doctors said I was very fortunate that it could have burst at any time. The aneurysm, they said, was caused from the increased pressure in the upper chamber of the heart due to the faulty valve. If you have any symptoms of valve disease (shortness of breath) and surgery is recommended I strongly suggest that you have the surgery as soon as your doctor recommends it. I was told that the surgery should have been done 3-4 years earlier than it was but I also blamed the shortness of breath on age. Glad to hear you surgery was a success.
November 24th, 2009 at 11:29 am
So glad to here you came thru well, Recovery is stressful, but the times goes by faster than you think. I was super scared about the surgery, I thought my symptoms were many different things, I am 26 so I had no idea what was going on! I feel good now, never thought I’d get here lots of loooooooooooong nigths and endless days , but it’s seems like a memory now! You will do well and feel great! Thank god for amazing doctors!
November 25th, 2009 at 2:02 am
I am 51 yr old male. I had Hodgkins lymphoma 34 years ago. I was treated with large doses or radiation to my upper body. The doctors agree the radiation caused the valve problems.
about nine years ago a mitral valve regurgitation was discovred.
I had no symptoms for about 5 yrs, then i started having minor symptoms after about 4 or 5 years ago. Then it was discovered my Arotic Valve is not functioning properly a few years ago. Now its 9 years after any problem was
detected that I’m having major pain & shortness of breath, with any exertion. I hope they will repair or replace my valves before long.
November 26th, 2009 at 9:41 am
Rhumatic Feaver as a child (some 40 + years ago) as gifted me with a need for a valve job that I have put off, hoping it would just go away. Your stroy as inspired me to do my research,find the best hosipital possible and get this thing fixed before it is too late. I am a tech gadget type guy and I am intrested in ROBOTIC ASSISTED Surgury. Dr. R2D2 or C3PO? Looking at Cleveland Clinic, I have heard it is the best.
November 26th, 2009 at 1:07 pm
Hi Adam,
Happy Thanksgiving!!
I was reading some of the comments about my story on your blog and have a few more answers to some of the questions people asked. The size of my aneurysm was over 6.0 mm which I guess is pretty extreme. My heart had also began to enlarge though not significantly. They said it would return to normal after the surgery.
I also didn’t explain that I was diagnosed with a bicuspid aortic valve when I was 18 years old through a cardiac catheterization. That was in 1972. I never saw another cardiologist until August of 2009 when my primary care doctor sent me to one because my heart murmur seemed to sound a little more harsh then it did the last time he saw me!!
I still remember the doctor back in 1972 telling me that my heart was fine for now but when I got up around my mid fifties or so I would have to have my valve replaced. He told me the technology would be so much better by then! I think he was a prophet!
Have a great holiday.
Just ticken away,
David Belisle
P.S. I forgot to say what type of valve I had implanted. I didn’t have a lot of choices due to my unique situation. I had the Medtronics Freestyle (bovine) valve and aortic sleeve implanted.
November 29th, 2009 at 12:08 pm
David, I have been diagnosed with an Aortic Root Aneurysm. It is now 4.5 cm. The surgeon said they are just going to watch it for now. He also said there will come a time I will have to have it repaired. Needless to say, I am scared stiff. What can I expect after the surgery. How much pain etc?
November 29th, 2009 at 9:07 pm
David, my mother is supposed to have surgery in Maine with Dr Paul Weldner on Dec 15. I have been trying to research him on the web, but haven’t found much. What did you learn about him that reassured you?
Thanks! Sandy
December 2nd, 2009 at 3:07 pm
My saga starts about 3 years ago. While in my auto, my heart contracted suddenly and then released causing quite a flutter. My primary Dr. ordered a ct scan. The scan showed a 50% blockage. An angiogram was conducted that showed thee was no discerable blockage, however it showed moderate leakage and regurgitation in the aortic valve along with an enlragement of the aortic root. Between 4.8 to 5.0 cm. It was decided to monitor the situation with the hope that I could wait until 60 years of age. At the time I was 54 years old with no other symtoms. Well here Iam 57 and the size is now 5.2 cm., still no symptoms. My surgeon was about to give me another 6 months and decided the risk was too much. Due to my recovering from a serious auto crash the surgery will be delayed until December 28, 2009. To say I’m frightened would be an under statement, I will have the valve and the aorta replaced. There is a very remote chance my own valve could be repaired. My concern is the choice of valve. Mechanical or tissue. There are both positives and negatives. Should I choose the mechanical, I would be forced to retire form my police department, no coumadin allowed! Retirement is ok, I’m financially prepared, I just don’t know about the blood thinner. Then again, I don’t ever want to have heart surgery in 8 to 15 years. It seems as if it is a flip of the coin! Any comments? Joe
December 6th, 2009 at 8:04 pm
To answer Daryls question: After my surgery I had very little pain. On the 1 to 10 scale (10 being the worst) I may have had around a 4 in pain once or twice. I used very little pain meds and was off of them in two weeks post op.. The biggest thing is being uncomfortable the first 2 to 4 days after the surgery. You will have have moniters, chest tubes, urinary catheter, blood pressure cath, insulin cath, etc. hanging off of your body which makes it difficult to stand and walk (oh yea, they get you up to walk with all that). Believe me when I tell you, I’m no hero and I went through it just fine. So will you! Good luck and my thoughts are with you.
To answer Josephs question: I lead an active lifestyle and work in a manufacturing job so for me I did’nt want to deal with blood thinners. Yes I will have to have surgery again sometime down the road. I’ll worry about that when it comes. Right now I have a new life to live!!
December 10th, 2009 at 12:35 am
Joseph, everyone is different I just had AVR in late Oct, I chose to get a tissue valve mainly because I am 26 and want to have children in the next few years, but I feel at any I would have gotten it. I thought seriously about both and chose that I would rather have to have surgery again one day instead of changing my day to day by having to take blood thinners. I am 6 weeks post op today, feel great, and i am not on any meds except baby asprin. I am happy I chose the tissue, but i will admit after going thru the recovery I am not excited about doing it again one day, but this make it easier, no pills/no worries! goodluck with whatever you chose, and i wish great health and fast healing. rachel contact: rachely16@aol.com