Tips For Those That Need a Heart Valve Replacement

Heart valve replacement is even more intimidating than hip replacement. Again, the first step is to find a good surgeon you have confidence in. For the heart, I did not have a good word of mouth referral, but I had good luck with Adam Pick’s heart valve website. Just stick your zip code in his surgeon finder. It turned out there were several great surgeons in the San Francisco bay area, but I tried Dr. Vincent Gaudiani first because he was the closest. I figured I could get second opinions if necessary, but my consult with Dr. Gaudiani left me feeling so confident that I scheduled the surgery on the spot. There are multiple surgical options to consider. The traditional approach is open-heart surgery with a median sternotomy (the medical term for cutting the sternum in half completely lengthwise). There are several options for a more minimally invasive approach, including a mini-sternotomy, and right anterior minithoracotomy. AS far as I know these procedures all have very good statistics for outcomes but the “mini” versions may have less discomfort during rehab.

The least invasive procedure is transcatheter aortic valve replacement (TAVR), where the old valve is left in place, and a new valve is pushed inside it to take over its function, deployed through the femoral artery. As far as I’m aware TAVR is currently recommended only for those that are not well enough to undergo one of the more conventional procedures, or for someone getting a second replacement valve. I don’t know if there is an equivalent procedure available for replacing other valves such as the mitral valve. TAVR also cannot be done if you have the congenital defect of a bicuspid heart valve (which was true for me).

In my case I had to go with the median sternotomy because I also had to get the Cox-Maze III procedure done- I had the complication of atrial fibrillation (afib) as a side effect of my aortic stenosis.

Aside from the type of procedure there is also the decision of type of valve- biological tissue (typically porcine or bovine) or mechanical. Mechanical valves last pretty much forever, you need to be on blood thinners for life. And it makes a click that I was told can be loud enough to bother some people. Tissue valves don’t require blood thinners but can calcify after about 15-20 years (or fewer if you’re unlucky) and need to be replaced. But this can be done by the minimally-invasive TAVR procedure described above.

Hopefully your surgeon will recommend the best hospital to have the procedure done. If there is a choice of hospitals, I recommend finding one that is a “nurse magnet”- yes there really is such a thing! This is a hospital that nurses want to work at. As described by the American Nurses Credentialing Center such hospitals “truly value nursing talent. Magnet Recognition is not merely an award, or a badge of honor. It is steadfast proof of a hard-earned commitment to excellence in health care, with contented nurses at its heart”.

Fitness Going Into Surgery- Prehab

The next important point is to do everything you can to be as fit as possible going into the surgery, which some refer to as “prehab”. There are statistics showing a higher likelihood of good outcomes for those who are physically fit when undergoing surgery. This can be a challenge because the reason you are getting the surgery is you have a bad heart valve valve, which may been preventing you from exercising very intensely. In my case I was able to go hard up until a month before surgery, and then had to stick to walking and easy biking. But it makes a huge difference if you can at least be doing a significant amount of walking up to the time of surgery. I remember reading one surgeon commenting “the ones who can walk a mile a day will do fine. It’s the inactive ones I worry about”.

The other thing to consider, especially if you have to do a sternotomy, is that you will lose muscle mass during rehab because you will have “sternal precautions” on lifting with the upper body. So if you can it helps to keep doing strength training right up till the surgery.

State of mind

Your state of mind before surgery is crucial, as I discussed in my tips for hip replacement surgery. Forgive me but it’s pretty much the same issue for any major surgery, so I’ll repeat it verbatim here. In his book Timeless Healing, Dr Herbert Benson gives statistics on the contribution of positive mindset to good surgical outcomes. He laments the fact that one of the last things you have to do before surgery is sign forms that you’re aware of the risks, however small, of various dire outcomes (including death). It is of course totally necessary from a legal standpoint that you are giving informed consent. But it is unfortunate if you dwell on these negative possibilities and let it cause you to enter surgery without an optimistic mindset.

Here is my number one tip: you have put yourself in a good surgeon’s hands so trust that it will go well. Do not focus on anything negative like the slight possibility of things going wrong in the surgery. Instead, focus on how great the outcome will be, and how much better you’ll feel in a few weeks.

Positive thinking is something you can train yourself in, as Deana Kastor relates in her book Let Your Mind Run. Working diligently on this took her running career to an elite level, and helped her worked through injuries and other setbacks. It’s also helpful to read inspirational stories like hers to stay in an upbeat mood. There are also recordings for positive thinking you can listen to.

One other issue is how much reading you may or may not want to do about other people’s experiences with heart valve replacement surgery. I read Adam Pick’s book The Patient’s Guide To Heart Valve Surgery, and also Opening My Heart: A Journey from Nurse to Patient and Back Again, by Tilda Shalof. I got a lot of useful information from these. The downside is that everyone is different, so don’t get discouraged by any negative experience others may have had. For example, both Tilda and Adam talked about a lot of post-operative pain in the sternum, and the need for narcotic pain meds. Adam had to be on them long enough to be concerned with getting addicted, but was able to wean himself off in time. Because of this I showed up for surgery having read books on pain management and with self-hypnosis tapes for pain relief, which turned out not to be needed. But overall it was good for me to have a solid idea what to expect, and I went into surgery with a positive attitude. So go ahead and read other people’s stories, including mine, if you want an idea what’s coming, but “your results may vary”. I had a major issue with pericarditis (inflammation of the lining around the heart) and pleural effusion (fluid around the lungs) in the weeks after the surgery, which many people do not get.

Attend the Pre-surgical Orientation or read the materials provided

Most hospitals offer pre-surgical orientations that help you get acquainted with what to expect during and immediately after the surgery, and answer a lot of FAQs. My hospital did not have one, but my surgeon’s office gave me detailed materials. I already had a solid idea of what to expect in the hospital, and even during rehab, before I went in. And don’t forget to ask your surgeon if you’ll be given a Heart Hugger in the hospital, if not it’s well worth it to order it yourself, they’re not that expensive. This makes a huge difference in post-op sternal pain if you cough or sneeze.

Surgery and Hospital Stay

As was the case with my hips, I experiened wonderful care from the staff, this time at El Camino hospital in Mountain View, Ca. (a magnet recognized hospital, the first in the SF Bay area), and I again I always showed my appreciation, which I highly recommend.

You’ll probably be in cardiac ICU the first night. You’ll be monitored continuously on telemetry in case any glitches occur. It’s noisy and there’s continuous activity in ICU, so many people have trouble sleeping. In my case I was given my one and only dose of narcotic pain meds that first night so I slept fine.The ear plugs I brought may have helped too.

Exercising diligently with the incentive spirometer is very important after the surgery, as it keeps the fluid away from your lungs. You’ll also be working with a physical therapist. I recommend doing any exercises PT tells you to do conscientiously. In my case this was mostly walking, although if you read my story I also had to do stairs because I have a two story house, and found them to be quite challenging.

Pain management is a big issue for some people, as I also mentioned for hip replacements. I was lucky and had very little and required nothing but Tylenol. If you do have more pain and have to take narcotic meds, it’s important to avoid staying on them for too long for possible dependence reasons. Mindfulness based stress reduction has been shown to be very helpful for pain relief and there is a video about it available at this link. There are also pain relief cds available at Amazon. Techniques like these may relieve pain enough to require less pain relievers. Or hopefully you’ll have the same experience I did.

Rehab

You’ll probably go home with some instructions from your hospital or surgeon which include home exercises. In my case it boiled down to sternal precautions and walking.

The sternal precautions can be summed up “Don’t lift anything heavy, if it hurts don’t do it, and don’t fall”. And you should be wearing the Heart Hugger for the first couple of weeks or so. My instructions for walking were to start out at 5 minutes the first day, and add one minute each day. It doesn’t matter how slowly, do whatever you can manage. Speed will come later.

Sleeping can be a problem when you first get home. It is controversial whether you can lay on your side with a sternotomy so check with your doc about this. I had trouble sleeping through the night on my back so I decided to carefully lay on my side and slept much better after that. Getting in and out of bed is also a bit of a production at first because of the sternal precautions, so some people opt to sleep in a recliner. I’ve even read of people renting the cushiest Lazy Boy they can find, and one that assists you getting up, for the first couple of weeks. There’s a lot of discussion about this on
Adam Pick’s heart valve website. Sleeping after any major surgery can be an issue for a couple of weeks, your body has gone through a trauma. But it’s temporary, you’ll soon be feeling, and sleeping, a lot better. And remember “your results may vary”- some people don’t have a problem at all.

Mental Aspects of Rehab

Up to 40% of cardiac surgery patients get depression post-op. The at-home instructions from my surgeon mentioned depression and definitely recommended “get out every day”- no moping around the house, at least get up and get dressed and go out to lunch or for a nice ride in the car. The American Heart Association’s website has some tips also on how to get help if you’re hit with depression. One important suggestion is to take advantage of a structured cardiac rehab program when available, which is usually paid for by insurance. People who go through these programs have a much lower incidence of depression, and are also much less likely to have future cardiac incidents.

Keeping up a positive attitude and rejoicing in the small signs you’re getting better day by day also helps. When you’re going for a slow walk during rehab because that’s all you can do right now, you can go along muttering “this sucks, I can’t believe how slow I am, I wonder if I’ll ever get better…” or you can pay attention to your surroundings and notice how nice the breeze on your face feels. For me, the latter is a lot more pleasant.

As I described in my story, cardiac rehab was great for me. The facility was like a gym, but they had you wear a monitoring device that was constantly checking your heart rate and for arrhythmias, plus they would come by to get your blood pressure and see how you were doing. I also could start using my arms on the elliptical machine. I routinely ran my heart rate up to as much as 140 and we never saw arrhythmia in any of the sessions. It gives you a real confidence boost that “all systems are go” and you can trust your heart. And it helped I could go hard with my arms on the machines without bothering my sternum.

But don’t think you’re all recovered after cardiac rehab. You’ll be doing a lot better, but for many people, myself included, it can take up to a year to get to 100%. In my case, though, by around 4 months, which was right after cardiac rehab, I was able to do all the activities I enjoy, just slower. It took a year till I got my speed back but who cares? I was already out there having fun.

What’s Next?

If you weren’t active previously, getting to where you can walk a significant amount each day is a great start. If you’d like to push the new valve harder, you can pretty much do whatever you like. Coming up with some sort of adventure, whatever intrigues you, to point towards and train for after you are 100% is helpful to motivate some people during rehab. It is inspiring to plan something you would not have dreamed of doing in the days of your bad valve.

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