What Is Your “Best Piece Of Advice” For Future Patients?

By Adam Pick on September 8, 2009

Hey everybody,

I could really use your help… I’m just finishing up the 2010 revision to my book, The Patient’s Guide To Heart Valve Surgery.

As many of you know, one of the current chapters in the book is titled “The Best Piece Of Advice”. In this chapter, I feature thoughtful comments, tips, tactics, tricks and strategies from many former heart valve surgery patients.

Needless to say, it’s a great chapter with some valuable ideas. That said, I wanted to add some more quotes from those who have already had heart valve repair and heart valve replacement surgery.

So… What is your “Best Piece Of Advice” for future patients and caregivers? To answer that question, simply below to leave a comment. (Or, you can scroll down to read 15+ responses from recent patients and caregivers.)

In advance, thanks for taking the time to help out!!! Who knows… Maybe your ideas will be featured in the new edition of the book? 🙂

Keep on tickin!
Adam


Written by Adam Pick
- Patient & Website Founder

Adam Pick, Heart Valve Patient Advocate

Adam Pick is a heart valve patient and author of The Patient's Guide To Heart Valve Surgery. In 2006, Adam founded HeartValveSurgery.com to educate and empower patients. This award-winning website has helped over 10 million people fight heart valve disease. Adam has been featured by the American Heart Association and Medical News Today.

Adam Pick is a heart valve patient and author of The Patient's Guide To Heart Valve Surgery. In 2006, Adam founded HeartValveSurgery.com to educate and empower patients. This award-winning website has helped over 10 million people fight heart valve disease. Adam has been featured by the American Heart Association and Medical News Today.


robert witt says on September 8th, 2009 at 1:36 pm

Check out surgeons, interview a couple, settle on one you are comfortable using and put yourself in his, or her, good hands then try to relax.



Lloyd Patton says on September 8th, 2009 at 1:56 pm

First off read your book.

Get the first date for surgery, do not sit around and worry.

My surgeon stressed to continue to live your life normally before surgery including exercise. I was walking at least an hour every day walking between 2-3 miles or more. I was trying to get in the best shape going into the surgery as possible.

I also was able to also relay on prayer and also prepare spiritualy for the operation. I only had three weeks to stop teaching and also arrange for someone to cover my consulting business. I kept busy and I realized early on that I had to relay on strangers to help me deal with this speed bump in life. As a retired police officer I was in control of most situations and now I had to relay on strangers for my well being. It was the most important decision I ever made and it was a very good decision.



Jose says on September 8th, 2009 at 2:40 pm

Adam,

What do you think about writing your book in Spanish it’s so hard to explain and people are not familiar with this issue. Your book can be a great help explaining the problem and the technology available as well as dealing with the life and death issue. I know because I have the leaky valve and no one in my family exept my wife knows and when I tell my family believe me it will be devastating.



Dawn says on September 8th, 2009 at 3:13 pm

Deciding which way to go was the hardest for me (mechanical vs pg vs Ross). This may not be my best piece of advice but it is something that really left an impression on me. One of my surgeons is my age. He spent a great deal of time with me answering many many questions. I asked him if he were having to make the decision for himself, what would he choose. He told me the Ross Procedure and he told me why. He did already know this was the procedure I was most interested in. His answer to my question was not the reason I chose the procedure-I had spent several years contemplating and researching knowing the surgery was going to eventually have to happen. But his answer did help me to feel much more comfortable and at peace with my decision.



Dr. Bernard Loewenthal says on September 8th, 2009 at 3:16 pm

SOONER RATHER THAN LATER!

I was diagnosed with severe aortic stenosis, no symptoms at all. The advice from two seasoned cardiologists was to wait for symptoms to occur before having valve replacement. That worried me because what if I was say driving a car, and I experienced syncope?
More importantly, in my case, a severely blocked coronary artery was unexpectedly discovered during my catheterization. Had I not decided to have the surgery, I could easily have died from a heart attack caused by the unknown blocked coronary artery, while waiting for symptoms, the trigger for replacing the valve.
The valve was replaced, a bypass graft accomplished, and I am walking three miles a day
six weeks post-surgery.



Chaz says on September 8th, 2009 at 3:43 pm

Three things:
1. Read Adam’s book-self serving to include this. I think not.
2. Motivate yourself to get out of bed as often as possible. From the first drug hazed meal at a table in the CICU, to sitting and watching TV from a chair (not a bed), to walking the halls as often as you can (I had a window that was at the far end of a corridor with a great view of the mountains…it became the goal for all of my in-house “walks”), Just the act of being mobile helped me know I would recover.
3. Don’t ever be afraid to ask for medication to ease the pain. Your body needs to rest to heal itself and the medication helps you to rest. It is far more important to use this rest to speed your recovery than worry about a possible future drug dependency.



Lori Williams says on September 8th, 2009 at 4:33 pm

The best advice is to understand the risks and signs of infection associated with heart surgery, particularly if you are a diabetic. My father had no fever, just uncontrollable high blood sugar for several days before going to the emergency room, where later that week he was diagnosed with endocarditis. My father has been a diabetic for 33 years and is on an insulin pump yet none of us in the family were aware that uncontrollable high blood sugar is a sign of an infection. My father was hospitalized, had to undergo a re-operation 8 weeks after his first surgery to replace his new aortic valve and also to have a mitral valve repaired due to vegetations from endocarditis. Then he was sent to a nursing home for recovery. After overcoming associated lung and kidney problems, he was able to come home after two months and is now on antibiotics, and may be on them for the rest of his life to prevent his valves from getting infected. Through it all, my dad remained positive and thankful to God, the doctors and the nurses for each bit of progress!



Joanne Harris says on September 8th, 2009 at 6:01 pm

My best piece of advice: discuss with your cardiologist or internist the option of starting on an antidepressant BEFORE the surgery. It may take 4 weeks or so for an antidepressant to kick in if you do experience post-surgery depression, and that can seem like Forever if experienced on top of post-surgery pain.



Jim Hilbe says on September 8th, 2009 at 6:05 pm

Choose an insurance policy that lets you pick your own medical providers. Do your homework; find out what hospital does the largest number of surgeries of the type you are having. Find out their mortality and morbidity rates. Look in U. S. News & World Report for the hospital rankings for your type of surgery. The one ranked number one is probably the same one as that with the greatest volume of similar surgeries, and the lowest mortality/morbidity rate. Take your freedom of choice PPO card to that facility and check yourself in for a second opinion.



Dorothy Delman says on September 8th, 2009 at 6:06 pm

Place all your trust in your surgeon, take a deep breath and let him do the worrying! That is what I did. However, no matter how top-rated he/she is, make sure you also have complete faith in your cardiologist, who will continue monitoring you post-surgery and thereafter. It is a team effort and you will be blessed if you have the best of both.



vicki says on September 8th, 2009 at 6:12 pm

My best advice would be to sign up for cardiac rehab. Even if your doctor says you don’t need it, insist on it. This will help you feel comfortable in exercising again while being monitored. I should’ve done this. When I asked about cardiac rehab after my surgery almost 8 months ago, my doctor said I didn’t need it; just for me to get walking. Although my recovery has gone well, I still wished I’d insisted on cardiac rehab and built my stamina back sooner (still working on my stamina at this point).



Joe says on September 8th, 2009 at 7:46 pm

Wow, I wish I’d seen all the suggestions noted here before going into my AVR surgery — they’re each great bits of advice! In my case, after knowing that the surgery was a must, what kept me most at ease was the trust I had in my surgeon. After I learned that his credencials were impecable, his experience was incredible, and his confidence was amazing, I could make specific decisions based on his suggestions and know I was making wise choices. The reputation of the hospital and support staff also goes hand in hand with this. You have to be comfortable with those that will have your life in their hands — literally!



Marlane Holtshouse says on September 8th, 2009 at 9:03 pm

Hi Adam, I am 4 weeks past aortic valve replacement. I urge everyone to do their homework regarding their surgeon. I live in Az and the mayo clinic is in Px . I saw a great Dr. there but didn’t feel he and I connected. I ended up in San Fran. with Dr. V. Guadinai who is wonderful. I continue to do well now that I am home in Tucson. I will be going to Cardic Rehab next week. I found your book very helpful but still had a lot of anxiety. I feel you should stress how everyone should research their Dr’s and what kind of valve replacement they should have.Good luck to all. Marlane



Midge says on September 8th, 2009 at 9:31 pm

First, accept that you are choosing to save your own life. Without the surgery, you will probably die. Keep remembering that, as it can help to reduce anxiety and fear. (My cardio’s comment before surgery was almost exactly that..have the surgery or die prematurely.) Since the risk of dying is about 100% without surgery, the low mortality figures for valve replacement are put in a different perspective.

And, learn to lighten up and laugh about the pain, the blood draws, the fogginess from the drugs, etc. It will help you and all the hospital personnel from the bottom to the top love to see smiling patients. It also brings alot of attention from everybody because they’d rather be in your room than with the guy in the next room complaining loudly.

Midge



Abby says on September 8th, 2009 at 9:56 pm

my husband had valve surgery 3 months ago, and here is what I’ve gleaned from him.
1. get your abdominal muscles in shape before the surgery, since you’ll end up using them more than you expect since you can’t push up with your arms
2. have goals – for each day (ie today I’ll get my chest tube or my catheter out or today I’ll walk to the bathroom) and for other things (he wanted to walk to the end of the driveway after a week home & a mile by his birthday etc)
3. have a good support network espeically for the first week or two home
4. be able to say no or “please go home now” to visitors that otherwise tire you out
5. sleep is an important part of the recovery (especially the first couple of weeks)
6. have a list of questions for your surgeon, and expect reasonable informed answers. But don’t second guess or research his answers – he is the expert.
My husband probably has much more to say about this, but these are the things that I hear him mention.
Take care everyone!



nerida says on September 9th, 2009 at 4:30 am

I too had no symptoms, I am 39 and consider myself fairly fit and a very busy mum of 3. I work 4 days a week in child care. I am 6.5 weeks post AVR (severe stenosis, bicuspid valve, mechanical valve, zipper chest). i am planning to return to work next week, just for 1 day a week.
My advice….*don’t put off until tomorrow what can be done today. (surgery included)
*read Adams book and blogs.
* remember what/who you have to live for.
*do your lung excercises as often as possible and then some.
*take a boomerang pillow to hospital. (side sleeping)
*remember your not alone and it could be worse.
Good Luck
Nerida



Anita Jobbs says on September 9th, 2009 at 5:06 am

ANITA 41
I was told i had severe aorctic stenosis, and it was not clearly explained to me the shock resulted in a panic attack for months but i dealt with that, anyway

I had the tissue valve and am on Aspirin and paracetamol

had my surgery at nottingham city hospital UK, and am just a month post surgery and doing well no problems at all.

I thank Allah and the surgeon Dr. Richens and his team well known in UK ( Nottingham city hospital)

To be candid I used to read my mails from adam blogs but so scare to write , am thrill to give my success story now.

I personally think the problem is at the time of receiving the bad news and having the operations.

GOOD LUCK TO EVERYBODY .



Sarah in McKinney, Texas says on September 9th, 2009 at 6:34 am

Pack a smile and a pair of jammies!

You will arrive at the hospital armed with tons of information about your heart surgery because you read Adam’s book! And you have lots of confidence in your surgeon because you did your research and had meetings, and you feel happy that he or she will do a great job. Now, it is time to go to the hospital! Don’t forget to pack a smile and your jammies. The smile is for everyone you come in contact with and it will go a LONG way to let them know how much you appreicate their help in a difficult time. You’ll find sharing a smile helps everyone and that helps you heal! And your jammies are for the day they say you can get out of those horried hospital “gowns” that make you feel sick and into your own clothes that let you know you are getting better. There is nothing like being in REAL clothes to improve your attitude! A smile and your jammies…and you are set!



Jeudi Carr says on September 9th, 2009 at 9:22 am

Hi Adam, I had a mitral valve repair in 2002 and and Aortic valve replacement in 2008. I have 2 pieces of advice. First, becareful to follow the advice of not picking up anything over 5 pounds after open heart surgery. I obeyed the first time and didn’t obey the second time and now I have a lovely crunching sound in my chest because the chest just didn’t heal well the second time. Second, exercise as soon as you are able. I waited 9 months before I started. I just sat around. Well, finally when I did start exercising my whole life changed. I feel so much better. I chose to go to Curves, which is only for women. And 3rd(sorry) realize that you may get depressed for a while after surgery and that’s okay. It will go away in time. I am 67. Jeudi



Sherri Hendry says on September 9th, 2009 at 7:47 pm

Being 7 months post op from MVR…and feeling and doing quite well. couple of things I would advise:

1. RESEARCH. Research. Research. The internet is a wonderful tool. That is how I found this website and ordered Adam’s book.
2. Order Adam’s book and read it cover to cover.
3. Participate and read blogs from other patients. YOU ARE NOT ALONE!!!
4. Ask questions..do not be shy! When I was told it was time for surgery, I had researched what types of surgery and the kind I wanted if medically feasible. (I wanted robotic, but was a candidate for a minimally invasive procedure resulting in 3 inch incision on my right side – no bones broken.)
5. Practice positive thinking and attitude about your condition and upcoming surgery! It goes such a long, long way. To be laughing and joking on your way into the operating room and laughing and joking on your way out at discharge…amazed people. Having a positive attitude helps.
6.Join Rehab! I still go 4-5 days a week. It will help you not only through the ups and downs experienced after surgery; but the in other areas in your life as well

.



Adam Pick says on September 10th, 2009 at 10:46 am

Thanks everybody for taking the time to help me out! There are some really great ideas posted above. FYI, if I chose to publish your quote, I will contact you by email.

Again, thanks for helping!

Keep on tickin!

Adam



Cindy McGinn says on September 10th, 2009 at 1:26 pm

My tip: Always, always, remember that each patient is different. An older gentleman had the same surgery as I did, the same day I did. We met up again at our 2 week post-op appointment. I felt I could hardly make the walk into the office. He ‘bounced’ right in and then walked the halls when he got bored waiting. I was devastated thinking I was so far behind. But everyone handles surgery differently and everyone heals at different rates. Just because someone else may do better doesn’t mean you aren’t doing well. Keep a positive attitude, push yourself as much as you can, and remember you will get there as your body is ready.


Leave a Reply

Newest Community Post

Ann says, "Strang question. Does anyone experience"
Read more

Sandy says, "I am wondering what so of your symptoms"
Read more

Margaret says, "I had successful mitral valve repair 4"
Read more

Find Heart Valve Surgeons

Search 1,500 patient-recommended surgeons