Matters of the Heart, Part 31

Just when we thought we were clear and weren’t going to have anything else happen relating to Ben’s heart for a while, life comes up with something else. 

Guess why that’s why it’s called “life”. 

Because you never know what’s next.

You may not know this, but every person who has a pacemaker has a routine yearly checkup on the pacemaker itself. The technician has a device that is put on top of the area where the pacemaker is located and it gives out readings on how the pacemaker is functioning, checking that the settings are still correct, and reviewing its remaining battery life.

Yes, you may remember that Ben has two of them, because when the original one was put in, for some reason it was implanted in such a way that tissue had grown over it so that it couldn’t be replaced. Therefore, when he needed a new one with a defibrillator it had to be implanted on the right side instead of the left, which is the normal location for pacemakers.

Should we have expected anything less?

After two pacemakers, we figured now he was done for a while. The “bionic man” could take a break. For at least 7 years or so until he needed a new battery in this newest one. Well, this will be about five years since the new one was put in.

We never really thought about that, though, and what it entailed.

Until several weeks ago when he had his annual pacemaker checkup.

Everything checked out fine. Until he was told he had about 15 months of battery life left on it.

Uhhh…what?

Then what?

And how would we know when it needed replacing? Since the technician told him the pacemaker was keeping him alive, that was a fairly important question.

“Let me show you how you’ll know,” she said. And she hit a button on the machine and a beeping noise went off. And it was definitely audible.

“That’s what will happen about 4 months before we need to replace the battery. It’ll do that for about two minutes. And it’ll keep doing it every day until you call our office and come in for us to turn it off. And you’ll make the appointment for the replacement then.”

When I told the story to a friend of ours, he said he could just picture Ben being at a client’s business when it went off and saying, “Excuse me while I take this call” as his chest is beeping! And knowing Ben, he may do just that.

The technician also demonstrated how important it is for the pacemaker to be in good shape by turning it down just for a few seconds. Ben said his whole body suddenly felt limp and exhausted. It was a weird feeling, and one he doesn’t want to experience again.

We assumed he’d just have a simple battery change. But we didn’t know how that would work because we never really thought about it. But we discovered it wouldn’t just be a simple battery change. It was a total pacemaker replacement! And we remembered that last time his doctor tried to replace the one he had, which ended up not being possible because of the way it had been installed, so he ended up with a second device on his right side. 

Well, since the same doctor would be doing the replacement, we can only assume he did it so that it’ll be simple to change out.

I guess we’ll find out in about twelve months though. 

So stay tuned, because there’s probably going to be more to come before this next procedure.

Matters of the Heart, Part 30

As I said in Part 29, I didn’t expect to have a Part 29 of this series, let alone a Part 30. But here we are.

Looking back, Ben and I have been dealing with his heart issues for 36 years. We’ve been married for 37 years. What does that tell you?

Deciding on having the Watchman procedure done was easier than the steps involved to actually get the procedure itself approved. And it certainly wasn’t his doctor’s fault.

There were several tests he had to have first, including a new EKG, and echocardiogram. Those were simple and of course showed he was a good candidate for the procedure. 

Then he needed a second opinion from another cardiologist in his group. Time was ticking until the end of the year, and we were getting a bit antsy. 

But that appointment was finally scheduled and the doctor confirmed that with his history he was definitely a good candidate for the procedure 

Now to get it approved and scheduled before the end of the year. With Thanksgiving and Christmas affecting schedules as well.

But our doctor assured us we’d get it done by the end of the year, and we’d get a call from the office as soon as it could be scheduled.

We just didn’t realize we’d get the call just five days before the surgery date, with two of those days being a weekend. It was scheduled for TWO DAYS before Thanksgiving! And we found out on Thursday which was the Thursday before Thanksgiving Day!

He’d be the first surgery of the day, which meant we had to be at the hospital at 5:30. In the morning! And I am NOT a morning person, which meant we’d have to get up at 4 am to get ready and be there that early. Ugh.

Well, we’d take what was available. Which meant frantically rearranging both his and my work schedules, as well as finishing putting up all the Christmas decorations! Fortunately we’d started early, and if you followed the stories about our 8+ Christmas trees, plus the Christmas ledge in our two story foyer, well you can imagine how much we needed to get done since we were having Thanksgiving dinner at our house.

I finished all the big trees, and he finished the ledge. Boxes for the decorations were still sitting around which needed to be put away, but I figured our daughter and son-in-law could do that since Ben wouldn’t be able to lift anything for several days after the procedure. Talk about rushing around…!

But plans don’t always go as planned, shall we say. The night before his surgery he got a call from his doctor around 6:30 PM. From his doctor’s personal cell phone. (Yes, we have that number.) That’s a call you don’t ignore.

And you guessed it. Surgery was postponed. The insurance company still hadn’t approved it. We weren’t happy at all. However, as Ben told the doctor, “my wife will be happy she doesn’t have to get up at 4:00 in the morning.” He said the doctor laughed himself silly over that comment! After apologizing profusely, the docotr promised they would reschedule as soon as they got the word from the insurance company, and it would definitely be before the end of the year.

Things did work out for the best, though, because not only did I not have to get up before the crack of dawn, we were able to put all the decoration boxes away, and I didn’t have to beg for extra help from our daughter to get Thanksgiving dinner ready. And Ben was able to play with the grandkids on Thanksgiving without being concerned about his incisions. 

But how was this going to affect our Christmas plans? Would we have to scramble to change other things?

Fortunately, the next week we got a call rescheduling the procedure, for the following week. Our doctor must’ve remembered Ben’s comment about early mornings, though, because the new surgery time was 1:00 in the afternoon and we didn’t have to be at the hospital until 11:00 am. That worked really well, at least for me.

Then we found out the insurance company had actually approved the procedure at 4:30 pm the day before the original surgery date. They just didn’t notify the doctors in time.

Go figure. But it did all work out for the best, since Ben had a week’s vacation already scheduled for the following week after the surgery to make recuperation easier.

Surgery went perfectly. In fact our doctor told him he’d done hundreds of these procedures and usually he had to do a little maneuvering to get the device precisely where it needed to be, but this one went in perfectly the first time! Thank goodness!

Ben will now be on blood thinners for 45 days after the surgery while the tissue grows over the device to seal it in. He will then have a CT scan to be sure everything is going well, which we’re sure it will. Then he will be on a different blood thinner plus baby aspirin until 180 days after the procedure and then no more blood thinners; just a daily baby aspirin.

Naturally we’re all pleased with the results, and so glad he made the decision to do it.

What’s ahead in this saga now? Hopefully only 6 month follow up visits that will show everything is still doing well.

After three heart valve replacements, two pacemakers, and now the Watchman, I think he’s had enough.

We are so thankful for all the great doctors and nurses he’s been fortunate enough to have over the years, and I do have to say that the last two cardiologists that have been caring for him have been the absolute best!

If any of you reading this have any heart issues, or have loved ones with these issues, please be encouraged. It’s not always as bad as it seems. Yes, it’s scary, but look what we’ve been though over the years. And if you have questions please feel free to message me with questions.

And Ben is still going strong after all of this!

Matters of the Heart, Part 29

I really didn’t expect to be writing another installment of this series. After all there’ve been 28 installments so far, the last one being in September of 2019. A little more than two years ago.

Certainly enough stories, right?

Well, you would think so.

But after the last heart valve procedure, which is still doing very well, thank goodness, both of Ben’s doctors determined that he was a very good candidate for a device called the Watchman. This device is implanted in an area of the heart called the left atrial appendage. It permanently closes off that area of the heart in which blood clots can form for patients like Ben who have a history of atrial fibrillation or AFib (which can lead to a stroke).

AFib patients, even those with pacemakers, like Ben, are on blood thinners daily to prevent blood clots from forming. This particular device prevents such clots from forming, thus eliminating the need for patients to take blood thinners daily, which in Ben’s case have also caused a number of blood vessel ruptures in his left eye, which has had numerous recurrences of iritis, which is another story altogher.

Naturally we had a lot of discussions on this procedure, as it’s only been around a little over ten years, and we’d never heard of it. But we did a lot of reading about it, and after several talks with his doctor, we decided that it was the right thing for him to do. Particularly since it was a non-invasive procedure in which the device was inserted into his heart through an artery in the groin, much like his last heart valve replacement. An overnight stay would be required, which was no big deal.

There were several tests that had to be done prior to getting final approval by the cardiology team (not to mention his health insurance, but that’s another matter entirely).

But before we could start the process, Covid hit, and although we’ve been extremely fortunate and neither of us or his medical professionals have contracted it, all elective surgeries were put on hold until further notice.

Of course the Watchman is an elective procedure. So we were on hold. For quite awhile. About 18 months or more.

We kept checking with the hospital and his doctors and finally the restrictions on elective surgeries were lifted. We made an appointment as soon as we could with his doctor to discuss the next steps.

When we were finally able to get the appointment  with his doctor we all quickly decided this was the best way for him to go, and proceeded to schedule the testing involved to be able to apply for approval not only within the cardiology group, but also with his insurance company for their approval.

Nothing is ever simple, though. And we also needed to do the surgery by the end of 2021 to avoid a huge out of pocket expense, since he’d already met his deductible for that year. And it was already early in October 2021.

So the process began…but not without a few complications along the way. Of course.

Read the next installment of “Matters of the Heart, Part 30″, to be published on January 24.

Being Thankful 2021

(Be sure to read through it all for a surprise at the end.)

It’s almost Thanksgiving again. We’re all trying to plan our meals, figure out who will join us at our feast, as well as what everyone can bring. 

We’re trying to figure out how to prevent arguments at these family and friends dinners because, well, some of you don’t get along with each other that well, and have such uncompromising ideas that you’re afraid dinner will turn into a battleground.

People are already complaining that the cost of our traditional Thanksgiving meal is too high. We can’t get this or that and we just can’t have our dinner without it.

People are complaining that many retailers who traditionally opened after dinnertime for an early start on Christmas shopping won’t be doing it this year. They’re actually letting their employees have off to spend time with THEIR families instead of trying to deal with pushy shoppers who complain that what they stood in line to buy is gone already! 

It just isn’t fair! 

Who said life is fair? Who said we have to have certain things for dinner because it’s tradition? Is Thanksgiving going to be ruined if we have to eat chicken instead of turkey? Not, it’s not quite the same, but you do have food on the table.

You don’t want to have certain family members there because you don’t agree with them on certain things? Maybe they don’t agree with you either. Maybe you can agree to disagree for one day and leave that conversation out of your day?! Or maybe you can just forget about them this year. But do you really want to do that?

Maybe things will be different next year and you can see them then. Or maybe they won’t be around any more and you’ll never get the chance to be with them again.

Tomorrow is not promised. Next week is not promised. And next year is not promised.

When we start making holidays, say Thanksgiving for a start, only about the food and who’s cooking it, and what we can or can’t have, there’s a problem.

When we make Thanksgiving about who we don’t want as our guests instead of welcoming family members to join us for a time of fellowship, gratitude, and thankfulness, there’s a problem. When we refuse to go to our family Thanksgiving dinner because some one or two people we don’t want to see will be there, and give up going and being with others we love, there’s a problem.

When your traditional after Thanksgiving dinner early Christmas shopping can’t happen because retailers decided to give their employees off to enjoy their own families, there’s a problem.

I think we’re forgetting what Thanksgiving means. It’s not about the food. It’s not about shopping. It’s not about refusing an invitation because you don’t like someone who’s also invited, so you’d rather complain that you have nowhere to go. Because you do; you just choose not to.

And yes, I find myself starting to do that as well. I forget, too. But then I was prompted to start writing this, and as I wrote, I saw too many things inside myself that I was doing wrong.

I found myself pushing to make sure I had all the good items we “always” have for our dinner. Yes, we did get the turkey early, but we didn’t pay a fortune for it because we found a sale rather than just complaining about prices. Complaining has become the new thing to do, hasn’t it?

And if we have to change up the menu slightly from what we traditionally have, well, maybe we’ll like the changes so much we’ll keep them for next Thanksgiving. And cranberry sauce? Yeah, it’s tradition but no one really eats much of it.

As long as we can have my mother’s recipe cinnamon buns we’re good. And I ordered the hot roll mix she always used so all we need is for our daughter to make them!

And the dinner guests? Since my family lives several hours away, and my husband’s family lives halfway across the country, our dinner guests are our daughter and son-in-law and their two daughters. Over the last several years we’ve usually had several friends in the same situation; family out of town and they couldn’t get there. Or they’re newly separated or divorced and well, we won’t go there. Or some of our daughter’s friends who couldn’t get to their family celebration that year.

There’s always room at our table for one more, and many times it’s someone who’s invited at the last minute because we didn’t know they had nowhere to go.

The shopping after dinner? I can truthfully say I’ve never done that. Not even wanted to. After a big dinner and cleaning up afterwards, the last thing I want to do is go fight the crowds fighting over bargains on things they don’t really need or gifts that the recipients might not even want.

What’s wrong with stores actually letting their employees have a holiday off? Is the almighty dollar so important that the retailers should be open no matter what? Personally I’m glad a lot of them made that decision. Let families have a full day together, and that means those of you who used to take off shopping as soon as dinner was over. Spend time with the ones who are important to you while you can. The stores will be open the next day. And there will be merchandise to buy.

Now, to make our Thanksgiving even more interesting, a few days ago, a new complication was added to our Thanksgiving plans. But it’s added at the top of our “Being Thankful” list. 

My husband who’s had a history of heart issues (read his story in the Matters of the Heart series on this blog) was unexpectedly notified that after a year and a half of waiting and delays (Covid and insurance, among other things) he finally had an opening for a very important but hopefully minor heart surgery, if any heart procedure can be called minor. Two days before Thanksgiving. We took the appointment.

After a rushed several days of preparation for surgery, final meal planning and some prep for the actual dinner, and yes, finishing up the majority of our Christmas decorations, notifying our family and friends, I think we’re ready. 

Tomorrow morning he will be having a device called the Watchman inserted laparoscopically into his heart. The device is designed to prevent blood clots from breaking off and possibly causing a stroke. Which means he will finally be able to go off blood thinners at the beginning of the new year. And he should be home the next morning.

So you see, our Thanksgiving won’t be the same as other years, either. But with the help of our daughter and other friends, as well as a great surgeon and his team, we’re going to have a truly thankful Thanksgiving Day.

It may not be traditional, but it’s going to be blessed. And full of heartfelt gratitude.

So I ask you now…what are you going to be thankful for this Thanksgiving? Are you going to be grateful for what you have or complain about what you think you’re missing?

Happy Thanksgiving!

Matters of the Heart, Part 20,

Boring isn’t something you normally want. Especially me. I like action, problem solving, and being busy.

However, there are times you want things to be boring.

Ben’s surgery day actually started out quite calm and uneventful. Although I didn’t sleep well at all the night before (3 hours isn’t much), Ben slept fine until the dogs woke him up about 4:00.

We were at the hospital by 6:30 am. And quite ready to get it over and done. Naturally we couldn’t help but remember the week before and how we’d been so close, but yet so far. I have to say I still wondered in the back of my mind if it could happen again.

Everything progressed along as it did the previous week. He even had the same nurse who remembered us (how could she not?!) and treated us just as great as the first time.

This time things seemed to progress more quickly. The charge nurse came in a little before 9, and then shortly thereafter his doctor and then the anesthesiologist. We even got to have a conversation with Dr. T about cardiac surgery, discussing the history of heart transplants, and talking about the growing popularity of the TAVR procedure and how there are so many more people becoming candidates for it that more of these specialized hybrid operating rooms are being constructed not only in our area, but throughout the country.

We were even more impressed by this young doctor, obviously one who really, really loved what he did. And that’s certainly just exactly the kind of doctor we wanted to perform such an exacting and complicated procedure. And to think, he and his team do five of these procedures every week!!

Ben went to the OR right around his scheduled time, and we said our quick good byes. As he was being wheeled in there and heard the classical music they were playing and asked the doctors if they couldn’t have something more upbeat, we were settling in the waiting area, checking our watches.

And yes, after we got through the first ten minutes with no one coming in to say it had been put on hold again, I was finally able to relax, realizing the procedure was actually in progress!

After about an hour, Dr. T came out and told us, “Your husband has a new valve, and it’s working just fine! It was a very uneventful and boring surgery!” Just what we wanted to hear!

However, he added, they’d noted he was in A-fib again, and they’d still have to decide what to do about that.

A-fib again??? Well, the results of the ablation had lasted 9 months…. And the heart valve has nothing to do with the A-fib. It’s a separate issue.

I couldn’t help thinking, “here we go again.”

Post-surgery care after Ben’s TAVR procedure was very different from what we’d had with the other valve replacements. Since his chest hadn’t been cut open, he was in a room in less than an hour afterwards. He was awake, although groggy, talking to the nurses and me, and eating ice chips. There were 4 IV lines running, but since he’d only been out for an hour he hadn’t been intubated.

Seventeen years in modern medicine has brought amazing advances!

He even got lunch about an hour and a half later! Of course, he was in a hospital, in cardiac ICU, so his meal was interrupted several times with technicians coming it with portable X-ray machines, echocardiogram machines, the nurse taking his vitals, checking IV’s, etc.

And I kept my eye on the heart monitor, which clearly showed he was definitely still in A-fib.

Although it can be common after this type of surgery and normally rights itself with medication, which he was already being given, because of his history, I knew that wasn’t likely going to happen.

Since his potassium level was still lower than they wanted, he had to have 4 IV bags of potassium, each taking about an hour to complete. Which meant he had to continue laying flat and wouldn’t be able to get out of bed for another 8 hours, since the potassium was being fed through a line which was still in the groin area, and he had to be still for 4 hours after that line was removed (which ended up being 9:30 that night!)

During all of this, the pacemaker team came in to check his pacemaker again, which is when they discovered he’d been back in A-fib over a month. Although his pacemaker can’t correct the A-fib it does record when it happens. Obviously his wasn’t caused from the surgery.

The next morning one of his doctors came in and was quite pleased with his well the new valve was doing, but explained they had to get the A-fib under control, and were hoping the meds he was being given would do it. So far, they hadn’t made much of a difference. Which meant he was still short of breath, even with the new valve.

When I got there later in the afternoon he was starting to get depressed already. He’d expected to feel so much better after the procedure, like everyone had told him, but because of the A-fib, he still had the shortness of breath and was still having trouble walking very far without becoming exhausted.

And as we were discussing it, a doctor walked in, saying, “Mr. Newell, we have to get this A-fib fixed up!” It was the doctor who’d done his ablation…the one who specializes in correcting electrical impulses in the heart!

I was never so glad to see him!

Before we could even begin the conversation his phone rang. He looked at it, and said, “Dr. T is calling me about you. I’ll be right back!”

And five minutes later he was. And told Ben he’d be scheduling him for a cardioversion first thing the next morning to get the A-fib corrected so he could go home!

Needless to say, we were thrilled! And he couldn’t wait til the next morning!

That next morning he waited to hear the scheduled time, but it seemed to take forever. Then the nurses told him his doctor has been called out to another hospital on an emergency, but he’d be back….

Fortunately at 1:00 he was wheeled down the hall and the short procedure was done. He was being wheeled back into his room as I arrived, literally following his bed down the hall!

The procedure had been immediately successful. His heart had been stopped and re-started and it went into perfect rhythm. He was already coming out of the light sedation and talking. And yes, I immediately looked at his monitor and saw the normal heart rhythm, a beautiful sight!

Although he wanted to come home that evening, and as nice as it would have been, because he was still tired and still got a bit winded walking up a flight of steps, we decided to have him stay at the hospital one more night so he could be monitored and get some more strength back.

Which turned out to be the right decision, because Saturday morning he felt so much better. His heart rate was just where it was supposed to be. He had no shortness of breath. No fatigue. He looked healthier than he had in months.

Finally!

I picked him up from the hospital at noon, and we arrived home, just as our granddaughter’s third birthday party was beginning!

Yes, the last five months have been stressful, long, and difficult. But at least for now, Ben is doing great. No shortness of breath. No fatigue. And getting ready to go back to work next week, which will be ten days after his heart valve replacement. After his last valve replacement he was out 6 weeks.

Our journey is still not over. That we know. There will always be follow ups and most likely a few hiccups along the way. That’s to be expected.

But for now, all is good! And of course more will be written as we continue to go through our process.

If you missed any of our installments please click on Matters of the Heart category above for all of the blog posts that are part of our story.

Matters of the Heart, Part 18

I said last week we’d publish again after the surgery. Well, the surgery is supposed to be tomorrow, but as I’ve said many times before, you just can’t make this stuff up….

Exactly one week before the scheduled surgery, Ben got a phone call at 3 am. Of course he didn’t answer since he didn’t recognize the number. But since I was out of town with our daughter and her new baby, and there had already been one time I’d needed him in the middle of the night and he hadn’t answered, he decided to check his voice mail.

It was the nurse from his cardiologist’s office calling. His last bloodwork had come back and there was a critical problem with his potassium level, and she needed him to call back right away.

In the middle of the night???

But he called, and had to leave a message. And then stayed awake the rest of the night waiting for her to call back, and wondering what in the world could be so wrong! And was it that serious??

And of course he didn’t get a return call until 7:30 in the morning.

His potassium level, as she’d said, was critically low; it was supposed to be no less than 3.5. His was 2.5. And if it didn’t get up to an acceptable level by surgery time, well, you guessed it. Another postponement until it was where it needed to be.

Evidently with all of the extra lasix he’d been taking, plus the stronger fluid pills, his potassium pills should have been increased as well, but obviously no one on his medical team had thought of that.

So now we had another potential postponement as well as an even bigger problem if the potassium went any lower.

He was to immediately double up on the potassium pills, and take the double dosage twice a day. Cutback on the Lasix. And eat bananas, which are high in potassium. And if he started feeling light headed again, he was to call the office, since that’s a symptom of too low potassium.

His blood had to be checked again on Monday. And if the potassium was still too low, then he would have to go in for an infusion of potassium to get the levels up.

So he started the extra meds immediately and ate extra bananas and avocados, both high in potassium, and both foods he really likes. He also received three phone calls to check on him on that Friday. One from each of the surgeon’s offices and one from the Heart Hospital. And no wonder….

I had googled low potassium and discovered that a level of 2.5 could be life threatening, requiring immediate medical attention, especially in a patient already having cardiac issues.

It seemed that light at the end of the tunnel was still a train that hadn’t veered off on another track yet.

Saturday night he said he could already tell a difference because he was getting short of breath again because of the fluid buildup. But he’d take that as long as the potassium levels increased.

And of course Sunday just brought more fluid buildup and more fatigue. He was able to take me to breakfast for Mother’s Day, but had to go home and rest so we could go out later for dinner.

Monday morning he went to the lab for his bloodwork to check his potassium level. Only to be told there were no orders called in there for him to be tested! Why were we not surprised??

A call to the Heart Hospital was made, and he was told his doctor’s office was to have sent the orders over. Fortunately the hospital went ahead and handled it right then, and he finally had his blood drawn and went home to wait for the answers, which of course didn’t come that afternoon.

What did arrive in the mail that afternoon though, was an envelope from his doctor’s second office location which he doesn’t normally go to, with, you guessed it, the blood test paperwork for him to take to the hospital for the testing…totally opposite of what he’d been told last week!

But finally Tuesday morning he got the call that his potassium level had raised high enough for him to have the surgery without having an infusion!! I have to say I was so relieved I almost cried, and I’m sure he was certainly more relieved than me!

So tomorrow is the procedure, and he will come out of the operating room with a new heart valve which won’t be leaking! He will start feeling better and be able to resume normal activities once again. Please keep us and the entire medical team in your thoughts and prayers.

More to follow in Matters of the Heart, Part 19, to be published as soon as I can have an hour or so to breathe and de-stress and write!

Matters of the Heart, Part 17

You’d think that the time we had to wait for the surgery would go very quickly. After all, we finally had a date, which meant there was light at the end of the tunnel. Ben was feeling fairly good, although more tired than usual, so what was another four weeks to wait? But that’s a long tunnel.

There was a lot going on in our lives, including the upcoming birth of our second granddaughter, so we had to get ready for that, since I was going to be staying with Ashley and her family when she cane home from the hospital that first week. Which left Ben at home by himself, which did sort of concern me, but he assured me he’d be fine.

Well, there was light at the end of that tunnel, but sometimes that light is a train coming at you, and you don’t know if it’s going to hit you or go off on a side track at the last minute.

That first light started heading at us at high speed just a week later, when he started having a lot of shortness of breath, as well as being more and more tired than usual, “like someone took a hose and sucked all the energy out!” It seemed like suddenly he was retaining fluid more than ever. And his regular meds weren’t taking care of it. Of course, he called his doctor and was told to increase his fluid pills.

Which had no effect at all.

He tried to work the following week and was only able to do it one day. Fortunately he works for a company who understands his current health status, and was able to take off with no problem. And even more fortunate, he was able to get an appointment at his doctor’s office the next day. He was given an even stronger medication to take, and told if it didn’t help within 48 hours, he was to go to the hospital. Which would mean staying there for several days of IV meds to reduce the swelling and fluid retention.

It was a tough week. He felt awful, could barely do anything without having trouble breathing, and as a result, was totally exhausted. Going up the stairs was extremely difficult, as was taking out our two Yorkies. Lifting anything was difficult. Even trying to go out and get a quick dinner was exhausting, even if I drove. A short one mile trip to the drugstore wore him out. He felt house-bound and just miserable.

The physical stress was hard; the emotional stress was just as hard. And it affected both of us. It’s not easy to suddenly not be able to do little things that you normally do on a daily basis. When walking a little dog on a leash becomes difficult, leaning over to pick up something makes you short of breath and light-headed, and driving to get lunch makes you so tired you have to take a nap, it’s not good. I was suddenly the one who had to do all of the physical work around the house, which made him feel guilty for having these problems, and gave me no time to relax after work. But even worse, all I could do was worry about him, and wonder how we’d make it til the surgery date.

He was put on a cancellation list in case a surgery slot opened up, which was doubtful, as the nurse told him. Usually no one canceled unless they didn’t make it, and we certainly didn’t want that! But finally the new meds started helping so the situation was a bit more manageable.

Easter was approaching. And one of our Easter traditions was Sunday church followed by brunch and then an Easter egg hunt for our granddaughter. For the first time in years, Ben was unable to make the church service, but he did make it to brunch, because he didn’t want to disappoint Ashley and her family. He made it through brunch, but then came home and sat on the steps and could only watch the Easter egg hunt rather than help. I know it upset him, but what choice did he have?

Fortunately that next week he was able to go back to work, because the shortness of breath had improved since the fluid retention had decreased, but he still took a nap as soon as he came home in order to function the rest of the night.

Then we got a call. There was a cancellation. May 1. The original date and the date of our daughter’s C-section. Of course.

We talked it over and he talked to Ashley as well, and since he was feeling better, and because Ashley was going to need me to help her out when she came home, he elected to still leave the date for the 15th. Plus, he didn’t want either of us to miss Ryleigh’s birth and all those special moments of the day.

He continued taking it as easy each day as he could, napping as soon as he got home, going to bed early, and trying to avoid overdoing it. Which for Ben wasn’t easy.

We got through the week, but then came Sunday morning, when after getting dressed he was so lightheaded he couldn’t do anything but lay on the sofa and go back to sleep, and I was expecting to end up
taking him to the hospital. Fortunately his doctor’s office was apparently correct when they said most likely it was due to his not using his CPAP machine the night before because of the mask not fitting properly.

Two hours later he was doing much better and able to at least go out for a quick lunch.

Two more weeks to go….and I won’t say what else could happen, because I don’t want to know.

The story continues in Matters of the Heart, Part 18, which will be published soon after Ben’s heart surgery which is May 15. Please keep us in your thoughts and prayers.

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 16

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 10

If you’ve been following my stories in this series, by now you’re probably wondering when this saga is going to end.

Well, so are we. And I can’t answer that yet. I wish I could.

When you’re dealing with a hurting heart, a damaged heart, you just never know. And when the damage is caused by rheumatic fever at an early age, it just seems the older we get, the more problems which seem to occur.

It’s not easy by any means. It’s very difficult for the patient because they’re the ones going through the physical part, the exhaustion, the procedures, the pain, as well as the emotional stress of wondering when they’ll ever feel normal again.

For the family, it’s a different kind of stress. We worry. We’re anxious. We feel the stress in different ways. These feelings are normal. And as much as we try to hide them from our loved ones, because we don’t want to worry them any more, well, it makes things even harder. We try not to show our stress, but sometimes we just can’t help it.

Waiting to have the cath was like that for us. Surely we could wait the two and a half weeks. It’s not a long time, right? Well in this case, yes it was. We just wanted answers. And for Ben to feel better.

Then we found out those answers weren’t going to be as quick as we’d like.

Because of his history with two previous open heart surgeries, he has what is termed a “hostile chest,” because of the scar tissue and two sets of wires holding his rib cage together. This condition makes a third open heart surgery more troublesome and complicated. More risky.

Therefore, they need to go in through the femoral artery in the groin if at all possible to do the valve replacement to avoid complications, and make it easier on the doctors as well as the patient. But in Ben’s case….nothing is ever simple!

Meeting with his primary cardiologist a week before the cath was scheduled confirmed that. The procedure they were hoping to do is called TAVR, or transcatheter aortic valve replacement. Never heard of it? Neither had we.

Simply put, it involves inserting a catheter with the new valve thru the femoral artery in the groin and replacing the valve that way, without having to open up the chest cavity. In Ben’s case this would be the best way to do the surgery, but he has to be a good candidate for it. And that can only be determined by a series of tests, starting with the heart cath, which looks at not only the valve but the arteries to be sure there is only minimal plaque buildup. If there was too much blockage that would prevent him from being a candidate for the procedure unless the blockage was handled first.

If the cath results were good, he would then need four other tests to be done, all of which would be analyzed in conjunction with the cath results by a team of surgeons to determine if the TAVR would be acceptable in his case.

Four other tests??? How long would that take?

Fortunately those tests are relatively quick and non invasive, but still, there is time involved. There is a pulmonary function (breathing) test, carotid artery ultrasound, a CT scan of the chest and abdomen, and X-rays of the mouth to be sure there are no bacterial infections in his teeth which could lead to that infection going directly to the heart.

Why didn’t we know all of this before? Good question. But nothing is ever simple when dealing with cardiac issues. It seems we learn something new with every doctor visit, every procedure.

The catheterization was scheduled for President’s Day, Monday, February 18. We were so looking forward to that day, getting the results and being able to move forward quickly with the other tests, and hopefully schedule the replacement. Everything was on track. We thought.

Until Ben woke up with a horrible throbbing toothache Saturday morning before the procedure. Of course… And the dentist’s office was closed, of course, and we couldn’t find our dentist’s cell phone number, which we had somewhere. Which meant he was in pain all weekend. I made him call the cardiologist’s office to tell them, and, you guessed it! The cath was cancelled due to the risk of the infection from his abscessed tooth going to his heart. Now he was not only short of breath, and exhausted, but his tooth was throbbing, making it difficult to eat, and giving him a pounding headache.

What next? How much longer would all of this take?

You just can’t make this up, as you will read in Matters of the Heart, Part 11, to be published April 4.

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 8

There’s an old song that says “Only love can break a heart. Only love can mend it again.”

Not necessarily.

While the lyrics are good, and the tune is one you remember, the truth of the matter is a bit more complicated. While love can certainly break your emotional heart, the damage by rheumatic fever, congestive heart failure, and other heart diseases can do far more and much longer lasting damage than love could ever think about.

The physical damage to your heart is much harder, much more painful, and longer lasting than any emotional damage.

You may not believe it, but trust me, it’s very true.

If you’ve been following the stories in Parts 1 through 7, you know what we have been through so far, and can only imagine the emotional stress we’ve been through, especially over the last few years. And it’s still going on.

When the six month period after the ablation surgery was over, we really thought his problems had been solved, and started to breathe a sigh of relief.

Until one day in the middle of January when he woke up absolutely exhausted. He said he felt like someone had drained all the energy out of him, and he was having shortness of breath. He looked tired, and I was very concerned about him. He was able to get an appointment with his primary doctor the next day, where he found out he’d gained 16 pounds in three months, which is totally unlike him.

Knowing his history of fluid retention and congestive heart failure, his fluid pills were immediately increased, and he was told to see his cardiologist as soon as possible, just to rule out any heart problems.

Why didn’t he catch it before it got to this point? Because he’d been doing so well, he’d stopped the routine of checking his weight every day. And it was the holiday season where everyone seems to add on a few pounds. But not 16 in three months!!!

And yes, when he told me all this, I immediately knew what was wrong. Call it intuition, instinct, or thinking the worst because of all we’d been though, but I just knew what I knew that I knew.

We were able to get an appointment with his regular cardiologist within a week due to a cancellation. By that time he was feeling worse. He’d already dropped 3-4 pounds from the fluid pills, but he had to take a nap every afternoon when he got home from work or else he couldn’t function that evening. He was getting increasingly short of breath as well as lighthearted and sometimes dizzy when he bent over and then stood up.

Obviously something was quite wrong. Again. And I was pretty sure I knew what it was. I think he did, too, but he didn’t want to think about it.

When we got to his appointment the nurse did an EKG as part of the check in process, but of course we had no idea what it revealed.

His doctor came in and as Ben described his symptoms I couldn’t help but notice the slight change in Dr. S’s demeanor. I knew he was worried. I could tell as he listened to Ben’s heart and lungs. He told him he heard a heart murmur, and wanted him to have a chest x-ray and an echocardiogram as soon as we could get it scheduled to determine what was going on.

Now imagine how we felt when, as we were checking out and trying to get the appointments made, Dr. S came out and told us he wanted the X-ray immediately, and the echocardiogram within 48 hours! And told the scheduler to find an open appointment at one of two locations. He told us after reviewing his history again, and considering how pronounced the murmur was, which had NOT been there at his last checkup 3 months previously, he didn’t want to wait.

So we went across the street to the imaging center and had the x-ray done and the appointment for the echo two days later.

The chest X-ray was good, all things considered. There was fluid, but no worse than what the doctor had heard through his stethoscope. And yes, that was good news!

Then came the echo. I was actually able to watch this one being done, as I had several other times. I’m certainly not a medical technician, or doctor, but I could see some of the leakage as the technician did the test.

Of course, we had to wait for the doctor’s office to call with the results, which took longer than we thought because the office hadn’t notified Dr. S that they were there to read! And all the time Ben just kept getting more and more tired and more short of breath. And I was more and more concerned.

Then we got the call. A personal call from Dr. S himself. I’d just gotten home and we put the call on speaker so we could both talk and ask questions. The news was what I expected. The valve was leaking. Just like 15-16 years ago. Which would mean surgery….again.

The question now was how it would have to be done because of his two previous open heart surgeries. We’d always joked around that when his valve had to be replaced again, the way medical technology was advancing, it would probably be done as an outpatient!

It’s a great idea, but medical science isn’t quite there yet. If only that were true…

So more testing was called for. Of course. Starting with a TEE, or trans esophageal echocardiogram, in which a scope with a camera is inserted down the esophagus (while the patient is in a twilight sleep) to enable the doctor to better see inside the heart and determine exactly how bad the valve is leaking, and if there are other problems that will need correction.

And the wait for answers continued, but this time we were especially antsy, because we wanted to just get it done and over with. And he continued to become increasingly tired, short of breath, and lightheaded….

More to come in Matters of the Heart, Part 9, to be published March 28.

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 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