Matters of the Heart, Part 16

Facing heart surgery is never an easy thing. The first time we were scared to death. The second time we sort of knew what to expect, but we were still nervous. This time was different. Not only were we possibly and hopefully having a whole new procedure, but we weren’t sure if he’d even be approved for it. And then what? Traditional open heart surgery was risky in his case, so this HAD to work…

Waiting the weekend for the consultation to find out about Ben’s surgery was not easy. Even though we had things scheduled both days to keep us busy, we couldn’t help but wonder what the verdict would be and how it would affect our lives over the next few months.

After all the roadblocks we’d gone through to get to this point, waiting a few more days shouldn’t make that much of a difference. But it was on both of our minds as we kept thinking, “what if?” And if you or a loved one has ever been facing a serious surgery, you know what I mean. And how we felt.

We got to the hospital on Monday right on time. And then found out why they said to allow up to three hours for the consult. Because they scheduled 3-4 appointments at the same time, and the doctors rotated between patients in between their surgeries. We’d had no idea. We certainly hadn’t planned on that, and neither had Ashley! Needless to say it was a long wait.

When they finally called us back and checked us in, they told us it would be probably another half hour at least. Ben and our pregnant Ashley were starving so they told us to go to the cafeteria and get our lunch, and they’d call us. We should have plenty of time.

And of course, no sooner did we pick out our food and get to the register to pay for it, I got a phone call that the doctor was in the office and seeing the patients…

So yes, we ate in the doctors’ office while waiting for the doctors to come in. In fact, we hadn’t quite finished when the team came in, which was fine. We just wanted to get answers!

And we did. Ben was a candidate for the TAVR procedure fortunately, but as I heard the doctor say that, I heard a silent “but….”

The testing had shown his lungs were functioning at 30% less capacity than they should be. Why, no one could really tell us, but with all of the shortness of breath he’d been experiencing I really wasn’t surprised. Fortunately there was an additional procedure that could be done right before the valve replacement was done to minimize the risk of problems from this latest situation.

This procedure is called Basilica, which stands for Bioprosthetic Aortic Scallop Intentional Laceration and is done to reduce the risk of coronary artery obstruction during the procedure.

That was another one we’d never heard of. And what it has to do with lung problems I don’t really know.

But it involves another catheter being inserted into the heart through the arteries to split the valve leaflets to prevent them from closing and blocking the arteries during the valve insertion. Do we understand what it is? Actually no, but the doctors do, and after researching it online, I’m glad they do, because it’s more than I could understand!! Or wanted to understand at that point.

We just wanted a surgery date. And they told us it was set for May 1. Of course. Which was the date our daughter was scheduled for her C-section for delivering our second granddaughter. Somehow, I’d expected that!

But before we could say a word, Ashley chimed in with a “that date’s not happening!” When the surgeon looked at her and asked why, she promptly replied, “I’m having this baby that day! You have to pick a different day!”

Like a really good doctor, he just looked at her and said, “Well, we can do that on one condition. I have to see baby pictures!”

That certainly wouldn’t be a problem!

So we now had a date and time. May 15. All we had to do is wait and hope Ben wouldn’t get any worse between now and surgery time. That should be simple, right?

The story continues in Matters of the Heart, Part 17, to be published May 6.

Don’t miss the previous stories in this series:
Matters of the Heart, Part 1
Matters of the Heart, Part 2
Matters of the Heart, Part 3
Matters of the Heart, Part 4
Matters of the Heart, Part 5
Matters of the Heart, Part 6
Matters of the Heart, Part 7
Matters of the Heart, Part 8
Matters of the Heart, Part 9
Matters of the Heart, Part 10
Matters of the Heart, Part 11
Matters of the Heart, Part 12
Matters of the Heart, Part 13
Matters of the Heart, Part 14
Matters of the Heart, Part 15

Matters of the Heart, Part 7

By now you’ve determined that once a heart begins having problems, it’s likely to continue as you get older. Especially if that heart was damaged by illness or other problems.

But these heart issues also affect our emotions, as well as our physical bodies. It’s stressful, not only on the person actually experiencing the problems, but family and friends. It can change the course of your entire lives. It certainly has ours.

And it’s continuing to do so, and most likely will continue to do so for some time.

After the ablation procedure Ben had to take it easy for several days. He couldn’t pick up our yorkies, or our granddaughter. He couldn’t go back to work until the following week. He was told he’d probably be tired, and some of the new meds could have side effects such as making him tired, upsetting his stomach, severe headaches, dizziness, etc. But he had to keep taking them to prevent infection, and to help his heart heal from the surgery had been done.

And he experienced every one of those side effects. Of course. Which truly made him discouraged. “I went from one problem to another!”

The procedure had taken place on a Tuesday, with him coming home Wednesday morning. He stayed home taking it easy until Saturday, when he just felt like he needed to get out for awhile.

So we went to one of our favorite little artisan pizza restaurants which is only about 10 minutes from the house. We always sit at the bar so we can talk to their employees, plus we also get quicker service as well.

We had just gotten our drinks when it happened.

Ben suddenly got quiet, and his face went from a smile to grimace of pain. I asked him if he was all right, expecting his usual? “I’m fine.” Instead, he said no, as he held his right arm with excruciating pain shooting thru it. And slowly starting leaning to his right……

Not again….!!!

“Do you need to go to the hospital?!”

When he quickly agreed I knew this was worse than serious.

He didn’t want to wait for an ambulance, and since the hospital was almost just across the street, I hurriedly helped him out and got him in the car. We’d been happy when we’d parked that we actually found a space directly in front of the restaurant; now I was more than grateful for that, because we didn’t have to go far to get him to the car, and I didn’t have time to ask for help!

I drove as quickly as I could to get him to the ER, telling him the whole time “Stay with me! Stay with me! We’re almost there!” And if a police officer had tried to stop me, well we’d have just had a police escort to the ER and I’d deal with it later! And fortunately I hit no red lights and traffic was light.

In five minutes I’d pulled up to the hospital, hit the flashers, and ran into the ER like a crazy person yelling my husband was having a heart attack and pointed to where my car was. I’m sure the staff is used to such things, and they had him in a wheelchair and in a room quicker than I could imagine. Thankfully. And yes, I did have enough presence of mind to move the car.

When I got back inside it was a flashback of those several years previously with all the wires and machines being quickly hooked up to him, just in case. His heart rhythms looked good, at least to me, and I’d seen a lot of them over the years!

He said his pain was starting to go away, and the nurse said his EKG was normal. Thank goodness! After a lot of tests, which of course took forever to come back, they couldn’t really find anything wrong. Speculations included a TIA, or mini-stroke, angina attack (which he’s never had, or at least not yet), a pinched nerve in his neck, etc.

But the main thing they attributed it to was possibly an after-effect of the ablation procedure. Yes we knew there could be after-effects, but this one hadn’t been mentioned.

Suggested follow up visits to his primary care doctor, his cardiologist, and later a neurologist, didn’t really shed any more light on the incident, so quite possibly it could have been a result of the ablation. As the surgeon reminded us at that follow up visit, his heart had been traumatized with the procedure and was still in the initial stages of healing. That was why he would be on several antibiotics and anti-inflammatory meds to prevent infections. And it would be about 6 months before we’d really know how successful the procedure was.

It was a waiting game. Some days he’d feel good, others not so much. But his regular checkups with his cardiologist were good, and six months later we thought we’d finally passed the finish line, and things would be good. No more a-fib, no more flutter. His pacemaker was working fine, and his last echocardiogram in October showed no problems.

We thought we were home free for awhile….

More to come in Matters of the Heart, Part 8, to be published March 25.

Don’t miss the previous stories in this series:
Matters of the Heart, Part 1
Matters of the Heart, Part 2
Matters of the Heart, Part 3
Matters of the Heart, Part 4
Matters of the Heart, Part 5
Matters of the Heart, Part 6

Matters of the Heart, Part 6

Matters of the Heart, Part 6

As I wrote previously in Matters of the Heart, Parts 1-5, my husband has experienced heart issues since we were married a little over 34 years ago, thanks to a bout of rheumatic fever at the age of two. He’s had two open heart surgeries and numerous other cardiac procedures that we didn’t really know existed until he had to have them. And we learned a lot more than we ever wanted to.

Because of the recurring bouts of A-fib I talked about in Part 5, we decided he needed to go ahead and have the ablation surgery the doctor had recommended.

Ablation entails inserting a tiny catheter in a vein in the groin, and threading it up into the heart, so that the procedure can be done with minimal invasion to both his body and his heart. After the procedure, he would be in the hospital for several hours to be certain there were no complications, such as bleeding or a recurrence of the irregular heartbeat, and then most likely go home.

So on a hot summer day last July we arrived at the hospital at 6:30 in the morning, overnight bag packed just in case, and prepared for a long day.

As confident as I was with the doctor, and the hospital (which is owned by the healthcare organization I work for), I couldn’t help but be a bit nervous. After all, this was a procedure he hadn’t had before, and we really didn’t know what to expect.

Fortunately our daughter and one of my best friends were there to sit with me, which helped pass the time. But hours pass very slowly in this situation, and when it was past the two hour time estimate for the procedure, and we hadn’t heard anything I was getting anxious. Normally the doctor comes out and talks with you, but after three hours with no news, needless to say I was more than worried, and quite anxious.

I knew something wasn’t right. The receptionist at the front desk in the waiting room couldn’t tell me anything except they’d call as soon as he was ready to have us come back to the recovery area, and that the doctor would be out shortly.

When you’re dealing with cardiac issues, no matter how confident you are, how much faith you have, you still get worried when a procedure takes longer than it should. All kinds of things go through your mind; things you don’t want to think about, but there they are, and they just won’t go away.

It still took another 20 minutes or so before the doctor came out. I’m sure he knew how worried I’d been, and after telling me Ben was all right, he quickly apologized for taking so long.

And then he explained what had actually taken so long. Ben had not only been in A-fib when he came in that morning; he was also experiencing something called flutter, which we’d never heard of. Atrial flutter is a condition in which the electrical circuits in the right atrium of the heart cause the heart to beat extra fast, between 250-400 beats per minute, causing the upper and lower chambers of the heart to be beating out of sync.

Well that was something else I’d never heard of, and neither had Ben. But I was sure having both A-fib and flutter wasn’t a good combination, causing dizziness, shortness of breath, and also an increased risk of blood clots or stroke.

The good thing in all this, if there was one, was that the doctor was able to do a double ablation, cauterizing two areas of tissue in my husband’s heart which were causing the conditions. As the doctor said, he got a “twofer”, otherwise he would’ve had to come back several weeks later to undergo a second ablation surgery.

Well, I guess that was a good thing.

However, because of the blood thinners he’d been on for years, and even though he’d stopped taking them the day before as instructed, when the catheters were removed, it took over 20 minutes and intense pressure on the insertion points to stop the bleeding.

But at least his heart valve, the one that had been replaced twice, appeared to be fine, with no signs of leakage. At least that worry could be put to rest!

When we finally got to see him he looked good, although understandably tired. The nurses still came in every 15-20 minutes to check on the insertion sites to be sure there was no more bleeding.

I have to say, one thing thoroughly impressed all of us that day, and that was the story he told about going into the operating room that morning, where he was greeted by a line of people as he was wheeled in on the gurney. He said it actually reminded him of a reception line at a wedding. Every person there introduced him/herself with a “Good morning, Mr. Newell. My name is _______, and I’m going to be doing _______ for this procedure. They even had a “Welcome Ben Newell” sign on the huge monitor in the OR on which his procedure would be displayed and most likely videotaped for his electronic medical records. He was so impressed with that, and so were we when we heard about it, and he’s told everyone he runs into how it made him feel so important, and how such a personal display from the OR team would make anyone feel more comfortable and relaxed about going through such a major procedure. (Thank you, Sentara Heart Hospital in Norfolk!) These are the little touches that are so important in dealing with these major medical procedures.

The nurses kept checking on him the rest of the afternoon, but by 5:00 I knew he wasn’t going home that night. There was just too much to be concerned about, including bleeding from the sites as well as episodes of possible A-fib, and neither one of us had a problem with him staying there overnight. By the time I got home, all I wanted to do was cry or sleep, or both.

The next day he was released a little before noon, and we really thought things were going to get better and stay that way! Even though the doctor had said it would be a good 6 months before we could be assured it was all OK, we were believing this would be the end of his heart problems.

More to follow, in Matters of the Heart, Part 7, to be published March 21.

Don’t miss the previous stories in this series:
Matters of the Heart, Part 1
Matters of the Heart, Part 2
Matters of the Heart, Part 3
Matters of the Heart, Part 4
Matters of the Heart, Part 5

Matters of the Heart, Part 2

When we speak about matters of the heart, our heart skipping a beat, being heartsick about something, being broken hearted, etc., we’re talking emotions, not our physical hearts.

But this is not about emotions, although they do play a huge part in it, but….

This is about the heart. The physical heart. The muscle that sustains our very life. The type of heart issues which can be life threatening.

As I wrote previously in Matters of the Heart, Part 1, my husband has experienced heart issues since we were married a little over 34 years ago, thanks to a bout of rheumatic fever at the age of two. His first open heart surgery experience was frightening for both of us, but after 16 or 17 years with perfect checkups, we’d all but stopped thinking about the possibility of a second such operation.

Even his chest scar had faded to the point we almost didn’t even notice it anymore.

Until the day he walked up the stairs as usual and suddenly became exhausted and out of breath. At first we figured it was just because he was tired.

Until it continued for several days, worsening a little each day. Then came the morning he asked me to go up with him for prayer at church and started the conversation with the prayer counselors with, “Deborah doesn’t know this yet but I’ve been having pains in my chest for several days….”

Not again! I guess he figured I couldn’t get mad at him by telling me like that! Well I certainly did, but that was beside the point right then.

And once again we were on the roller coaster ride of facing another open heart surgery. This time, at least, we knew mostly what to expect. Sort of, anyway. Except for our 14 year old daughter who was immediately scared to death that she’d lose her dad. We did our best to reassure her, but at that age, there were so many emotions she had to deal with, and I’m sure her dad and I didn’t deal with them as well as we should have, because we were dealing with our own!

This time we were told they didn’t use the pig valves any more so he chose the bovine (cow) valve rather than the mechanical one. He did joke around that he’d had a craving for pork for a lot of years, and he guessed now he’d switch that craving to steak! At least he kept his sense of humor.

Still….

The second surgery was somewhat easier on him though, if open heart surgery can ever be easy. Techniques had improved, and the stay in the hospital was a few days shorter. He was out of ICU and in a regular room much quicker, less than 24 hours, and was up and walking around a little the next day. Our daughter was very relieved, and so were we! Since it was the middle of the summer she was out of school and was a big help taking care of him those first few weeks. And the doctors were delighted at how quickly he recovered and went back to his daily routine.

We thought we were out of the woods and that all his cardiac problems were behind us, at least for another 15 years or so.

And they were. For awhile. But a few years later the problems started coming back. Unexpectedly.
It began with three separate episodes of him going into A-fib. I had no idea what it was, or what it meant. We always thought we’d have to face another valve replacement eventually but this was something different.
A-fib, or atrial fibrillation, is a quivering or irregular heartbeat (arrhythmia) that can lead to blood clots, stroke, heart failure, or other cardiac complications. The heart races erratically, because of the erratic firing of the electrical impulses in the heart, which causes the blood to not circulate properly, resulting in fatigue, fluid retention, and other conditions.

At first he was treated with medication, which for most people, usually controls it. Of course, in his case, it didn’t. He was continually tired with occasional shortness of breath. And it just wasn’t getting any better.

What to do next? We figured there’d be another switch of medications again or maybe a combination of different drugs.

But hearing the doctor tell you that your husband has to have his heart stopped and then shocked to begin beating again in order to get the rhythm back to normal doesn’t give you a good feeling. He wasn’t wild about it either, but since the medication they were giving him wasn’t helping, he had to do something, and once again we headed back to the hospital.

Fortunately cardioversion is a simple procedure, at least for the doctors who do it regularly, but not to those of us who are the patient or the family! The process sends an electrical shock to the heart through electrodes placed on the chest to stop the heart and then re-start it to a natural rhythm. The very thought of what is going to happen is frightening to those of us who are not in the medical field, and Ben was certainly apprehensive as we waited for it to be done at the hospital with a number of our friends and our daughter and her boyfriend (now husband) waiting along with us.

Yes, we were nervous. And yes, scared as well. After all, would you want to have your heart stopped and then re-started? What if it didn’t work properly? What if…what if??

Thankfully the procedure was over almost before we knew it, and he was fine. His heart was once again beating at a normal rhythm. We all breathed a big sigh of relief! We were sure all of his heart problems were finally over.

And they were. Until a few years later….as the saga continues on Matters of the Heart, Part 3 to be published on February 21.

Matters of the Heart, Part 1

Since this is American Heart Month I believe it’s time to begin sharing the journey my husband and I have been on for a number of years, as well as what we are being faced with again. Maybe, quite possibly, our story can serve to help others, or even to save someone’s life.

The last eight months have been very stressful ones in our family, as we have been dealing with some serious heart issues concerning my husband Ben. And I have to admit, it has put me into a strange place, one in which I couldn’t even concentrate on writing for months, or much of anything else except worrying about my husband.

Heart problems affect not only the person having the problems, but the entire family. Depending on the type of issues, you can find yourself waking up in the middle of the night, just to check to be sure he’s still breathing. (A friend of my mom’s said she used to do that many years ago with her husband. I didn’t understand it then, but I sure do now.) You call or text him several times a day while he’s working to make sure he’s ok and not overdoing it or experiencing any symptoms that could indicate more problems.

An unfamiliar number comes up on your cell phone and you’re not sure whether it’s a solicitation call or someone calling to tell you your husband was taken to the hospital.

Now you may associate heart problems with the elderly. I’m here to tell you that is very, very far from the truth. Heart problems can occur at any age, and at any time.

Ben’s started at age 35, not quite a year after our marriage. We were at a concert when he started having chest pains. Typical man; he didn’t tell me. Even though it went on throughout the entire concert. When we got home, he finally told me, and I promptly gave him two choices. Go to the hospital then, or agree to go first thing in the morning.

Needless to say, he took option #2 and I worried all night that I should’ve just called an ambulance then and there!

The next day we went to the ER and he ended up in the hospital being cared for by a cardiologist, who discovered he had a leaking aortic valve. I remember sitting in the room while they did an echocardiogram, which is an ultrasound of the heart, and I could actually see the valve leaking blood every time his heart beat. Mind you, this was 34 years ago, and those echos have advanced dramatically, so for me to be able to see the leak then, you know it was serious!

I was terrified. I could picture myself a young widow before our first wedding anniversary. Ben was visibly shaken as well, and we were suddenly faced with a lot of decisions.

Open heart surgery. Heart valve replacement. Choose the kind of valve we want. Mechanical vs. pig valve. Chances of rejection. How long we could safely wait to decide…

This was 34 years ago. We were young and nervous. Ben was braver than I was, and he was the one who had to go through the ordeal. I was the one who had to wait outside the OR for news while he slept through the whole procedure.

What started all of this? A very healthy young man, who played tennis 3-4 times a week, went bike riding almost weekly, seldom ate junk food, suddenly finds himself in this situation. Why? A bout of rheumatic fever at the age of two set this in motion. And it continues to plague him even today.

At that time we decided on the natural (pig) valve which, if or when it failed again, it would be a gradual process, with time to have another replacement, vs. a mechanical valve which if it failed, well…there’d be no second chances.

At the age of 35 that’s a tough decision to make. But what choice did we have?

I remember checking him in at the hospital the day before the surgery, going through an orientation about what to expect for both the patient and the family. He really wasn’t that scared, so he said, until we went though the cardiac ICU and saw the post-op patients full of tubes and surrounded by monitors. It was a scary sight.

What were we getting ready to go through? But more importantly, what was my husband getting ready to go through??!!

Fortunately one of our neighbors was a nurse at the hospital where the surgery was being performed. Although a labor and delivery nurse, she asked to be assigned that day to the cardiac OR because she knew the doctor as well as the patient.

We arrived at the hospital at 6:00 am that morning, and they were already in the process of taking him down for surgery earlier than planned. We did get to see him, but he’d been given medication to calm him, and wasn’t making a lot of sense, until a nurse came by with a bucket of fried chicken she’d brought in for an early lunch. And he started a conversation with her about how he liked fried chicken and wanted to share it with her, while starting to slur his words a bit.

At least he still had a sense of humor, although with the help of a lot of meds, but I was still nervous and anxious to get this over with.

A four hour open heart surgery makes for a long morning for everyone. I was nervous, as were my mother and my aunt, who had come to the Washington, DC area where we lived at the time to be my support system. Our neighbor came out several times during the procedure to tell us things were going well, and that they’d cooled his chest down by throwing a bucket of ice in there. Yes, 34 years ago that’s what they did! Then she finally came out and told us everything went fine, he didn’t even need a transfusion, and he’d be in recovery/ICU soon. I actually saw him for a second as they wheeled him past the waiting area, with tubes and a monitor, but at least I saw him for a brief second.

What a relief!

Until I saw him several hours later up close in that UCU with tubes and lines everywhere, monitors softly beeping, imagining what he was feeling, and realizing he was asleep and had no idea. We’d been told it was harder on the family at this time, and I think they were right!

The next few days are a blur. He was in ICU for 24 hours before being transferred to a regular so could begin trying to get enough strength back so he could finally walk a few steps and go home. Which was an effort in itself. Seven days after surgery he was released. I was scared to have him home because I had no idea what to do or how to take care of him. But we managed.

It was an experience, and one I didn’t ever want us to repeat. Six weeks for recuperation, and get his strength back. Not to mention the huge medical bills and lost income. And the stress on both of us. After-surgery recuperation not only involves the physical recovery, but emotional recovery as well. Both are difficult.

Looking back, we had no idea what other issues would face us in the future. Fortunately after this first surgery, we went about 15 years before a recurrence. Even though Ben followed up with regular check ups with his cardiologist, a heart damaged by rheumatic fever never totally recovers. It just slowly gets worse.

And 15 years later when he suddenly started having difficulty going up the stairs without becoming short of breath, and extremely tired, we were faced with him undergoing the same surgery again…

The saga continues in Matters of the Heart, Part 2, to be published February 13, 2018.