My H recently learned that his mitral valve leakage has progressed from minor to severe and the recommendation is that he have it repaired within 3-6months. He just sold his family’s business, is essentially retired, and we are 21/2 years away from Medicare. So, insurance is weighing heavily on his mind (Cobra is not available since the company no longer exists), but more importantly, he’s terrified of the surgery. Our best friend is a cardiologist and my H has been recommended to one of the best mitral valve surgeons in the world, but this guy does it the old fashioned way…traditional open heart surgery. Does anyone have experience with this procedure? What was your reality with recovery, pain etc.? Thanks in advance.
So sorry he’s facing this, especially before Medicare kicks in.
No personal experience, but my mom had open heart mitral valve replacement 10 years ago at age 82, pig valve not mechanical. The initial weeks of recovery were rough, largely because of a reaction to heparin. But she went through rehab and is still going strong at 92. The key was being very disciplined about the PT and sticking to it. She joined Curves for a couple of years to force herself to keep her activity level up.
The vacations and weddings and graduations she has been able to actively participate in have been a real blessing. Good luck to him, and to you on being his life coach to keep him active if needed.
I had traditional open heart surgery – not for a mitral valve replacement, but for repair of an atrial septal defect – in 1978, when I was 29 years old. The incision was 9" long and curves exactly under my right (yes, right) breast. So my experience is from forty years ago and should therefore be taken with a grain of salt.
I was told that the surgery itself was no big deal, but since I was completely out, I have no way of knowing this. However, the recovery was major and not for the faint of heart (no pun intended!!). To get to the heart, they have to crack a few ribs. As anyone who has ever had a broken rib knows, that recuperation is painful. After the surgery, you are unconsciously breathing shallowly to avoid having your diaphragm expand, so you sometimes wind up with a collapsed lung (I did) or pneumonia. I also developed back spasms from holding my muscles so tightly.
After the surgery I was in the ICU with morphine for 48 hours, then in a regular room with morphine for a few more days, then they eliminated the morphine and I was just on regular pain killers of some sort. I was in the hospital for a total of 12 days, but these days I’m sure they kick you out sooner.
I had to take eight weeks off of work. I went from ~107 pounds to ~96 pounds. I was terribly skinny, but when I don’t feel well I don’t eat. YMMV.
So – my advice is for you and your husband to research whether the non-open-heart surgery is a possibility. I’m certain the recovery would be much simpler.
No idea where you live but we took my mom to NY Presbyterian in NYC as we were told they were leaders in the procedure she had. For sure I’d get more than one opinion. But just because a surgery is performed minimally invasive doesn’t mean it isn’t major surgery.
No direct personal experience. My brother has had his chest opened 2x, in his early 60s. Once for a double lung transplant. Once for a pericardiectomy. Lots of pain, out of the hospital quickly, slow recovery at home, but no complications (he has nine lives). We were told that depression is common after heart surgery. Not a forever thing.
Best of luck to your husband!
When my dad had aortic valve replacement, we learned a lot from talking to the cardiologist but so much more from the initial appointment with the surgeon.
I can recommend going to that appointment with with all your questions.
- If you aren't outside the time limits, COBRA is available. The company that purchased your husband's business is required by law to pick up the COBRA responsibilities if the seller's health plan is discontinued. The sale agreement may shift any economic consequences of that to the sellers, but (a) that isn't the same as having to pay the whole bill out of pocket, (b) it may (or may not) be more favorable from a tax standpoint (you have to check, and (c) there may be real cost savings to doing it through the insurance company. Or not. It all requires some analysis. But don't assume he has no COBRA coverage available.
- One sister-in-law and one friend have gone through mitral valve replacement in the past 3 years, one with a pig valve and one with a synthetic one. In both cases rehab was long and difficult; no way around it.
SIL had a mitral valve replacement done about 8 years ago w/ a pig valve. Surgery was fine and her pain was manageable, but the doctors botched her hand-off from cardiac surgeon to cardiologist and she was sent home without being placed on blood thinners, She suffered a pulmonary embolism that nearly killed her 2 days after she got home. Other than that her recovery went well and she was up and back to doing routine light housework within 2 weeks.
More importantly DH had his chest cracked (thoracostomies) 3 different times between age 49 - 55. He never had major post op pain. BTW, the surgeon doesn’t actual break your ribs, they split your sternum. His surgeons (3 different ones) said that some people have significant post-op pain; some don’t. No way to tell ahead of time which category you’ll be in. He was actually up riding his bike within 10 days after his last surgery.
Thanks all.
@jhs, it was not a sale to another entity. Long story short, they owned NYC real estate and sold the real estate, not the company. There are no longer employees and the requirements for corporate insurance plans no longer apply. Keeping the company active (but with only my H as an employee) appears to be not enough to provide COBRA benefits. We are reviewing all possible options with our attorneys (we are both attorneys, so our network is huge beyond the lawyers who worked on the sale), insurance brokers, and friends who have been in similar situations. Thanks for your insight though.
He has had a second opinion on the need for surgery, and while less invasive options are available for the repair, the long term data on those is not consistent and he is being advised to have the more traditional surgery. We know what the actual surgery involves but I’ve heard different experiences with the recovery. This is a repair, not a replacement.
@DeniseC, my list of questions is long, as you can imagine and I will attend the appointment with him. The complicating factor here is that our first grandchild is due November 13 and my H wants this done and out of his way as soon as possible. Getting on the surgeon’s schedule is not easy, even with our friend’s intervention. They are colleagues at the same hospital. Without going into more detail, this is at a different major NYC teaching hospital than the one mentioned above.
I had my open heart surgery at New York Hospital. There were vey efficient and organized.
Also, some open heart surgeries do crack the sternum but others crack the ribs. The heart hides behind the entire ribcage, so they break what they need to in order to reach the part they need to.
Sorry to hear about H. I haven’t had this particular type of procedure but I’ve had open heart surgery (triple bypass). The fact of the matter is whether H’s chest is opened or a minimally invasive approach is chosen, there are risks/complications to surgical procedures (eg infection, failure of procedure, etc). I had the fortune (?) of experiencing both an infection and bypass failure post op. No surgeon is going to guarantee an outcome, stuff happens in part due to unknowns such as how a patient responds to procedure and whether patient follows post op instructions. I’m sure H is terrified. I think H and you have to get to a point where you have trust in his surgeon and go for it as it doesn’t seem like H has a lot of alternatives. I can only wish H and you the best especially since the issue is complicated by insurance concerns. And even if H misses out on grandchild’s arrival, the most important thing is that H fully recovers. If that takes a month or longer, so be it. A fully recovered H will have many opportunities to change a lot of diapers and spoil his grandchild.
Good luck to both of you.
Runnersmom, I am confused about the insurance. Does he not have any right now? If he has full insurance through you, or some other way, can’t that policy cover him? Or sign up for something in this October’s signup period, to start in January. No way would he want to wait years longer than recommended for surgery, just to get Medicare.
We have insurance that continues through year end. We live in NY and the options available to us on the individual market or through the exchange do not cover the doctors involved. We will not wait, clearly, but are trying to figure out the best way to handle this going forward since he will need follow-up and I need insurance. My company cannot provide insurance because it is a small partnership with K-1 partners, all of whom are covered through their spouses’ insurance. The insurance issue is one we will find a way around, I was asking mostly to hear some real life experiences with recovery from open heart surgery.
You did mention that insurance was weighing heavily on his mind. It sounds like it would be good if you could find a way to continue the insurance he has now, past the end of the year, if it covers the doctors he needs. It really stinks to feel that you are limited by insurance, or have to pay through the nose for what you need. One less major stress to worry about at a time like this.
Yup, that’s what we’re working on. Thanks!
I have two relatives that had repairs of valve issues at The Cleveland Clinic.
It sounds like you are set on your facility but I only mention it because they were able to do a minimally invasive procedure when UPenn wanted to do open heart.
My mom had open heart at Penn for an aneurysm and valve repair. It was not as arduous a recovery as we anticipated.
Thanks, we’ve considered the CC options. Given specifics of his condition we are confident in the decision to use this approach.
I work with open heart surgery, or did until a year ago when they stopped doing open heart procedures at my hospital. Pain, due to going through the sternum rather than muscle, tends to be minimal compared to other surgery, for many people after the initial 24 hours to 48 hours. There is an occasional person who does experience a higher level of pain.If so, the recommendation is to take the medication to stay comfortable enough to move. You will be up in a chair the day after surgery and walking the next day or sooner.
There is a weight restriction of 10 pounds for 2 to 3 months after surgery that is necessary for careful healing of the sternum. Following these instructions is crucial to allow it to grow back without a problem.
Appetite or the lack can be an issue. Taking in sufficient protein facilitates healing, so eating even if not in the mood can be important. Supplement with protein shakes if that is easier.
Wishing you the best in this process.
@great lakes mom, thanks! That’s helpful information.
My mom had a mitral valve repair done at the University of Michigan. It wasn’t an easy surgery … I told my brothers that I thought she was dead when I saw her post-surgery. It took a good six months for her to really recover, although she was okay before that long. It was tougher than we had anticipated, but it took care of her issues & she certainly felt it was worth it. She was early-mid 60’s & in good health when she had the surgery.