Matters of the Heart, Part 19

Posted on May 17, 2019 by Deborah Newell

Sometimes you just go through a day, through the motions, and when it’s over you think back on it and just have to say, “What in the world just happened? And why?”

The day of Ben’s scheduled heart valve replacement surgery was that kind of day. Without a doubt. We’re still shaking our heads in amazement.

Of course the night before the surgery neither of us slept well. I went to bed very early because I was so emotionally drained and almost immediately fell asleep. Ben on the other hand was fine, but woke up at 3 in the morning and couldn’t go back to sleep. He just couldn’t wait to get the surgery done so he could start feeling better.

As soon as we got to the hospital that morning things progressed quickly and quite smoothly. Everyone was wonderful and he was back and prepped ready to go within an hour. Two of our best friends were there with us and we were all joking around and laughing, waiting to get “the show on the road!”

He was supposed to be taken for the procedure at 1:00. But by that time we still hadn’t seen the doctors or the anesthesiologist, so we knew things weren’t on time. Which isn’t unusual with heart surgery, since there are so many complications that could occur, especially when a valve has to be replaced.

The nurses kept apologizing, but of course it was out of their control. Finally his main doctor cane in to let us know two of the cases before him had been more difficult than planned, which of course took longer, but they were certainly going to get his done that day and as soon as possible.

Now heart surgery is something not to be rushed, not to be taken lightly. Although we were anxious, and just ready to get it over with, we all understood that the others before us deserved the same care and precision surgery that Ben would have.

So we waited as patiently as possible. Ben had had nothing to eat or drink since 9:00 the night before and he was starving and thirsty and miserable. The nurses gave him a damp sponge swab to rub in his mouth, which he called his “lollipop.” That helped a bit, but….

By 3:30 we were truly wondering if it was going to happen that day. But they had assured us…

The anesthesia team finally came in around 4:00, explained to us about the sedation, and said it would be soon. Hooray! And at 4:40 they came and got him finally! I said my good byes at the door to the OR suite and went to the waiting room, checking my watch to see when I should be expecting an update, which I figured would be about an hour.

You can imagine how I felt when the charge nurse came into the waiting room ten minutes later asking for the Newell family.

Her first words were “your husband is fine” which calmed me down. But now what??

It turned out that just as Ben got wheeled into the OR, as they were getting ready to transfer him onto the operating table, the word “STOP” was shouted out. Which of course stopped everything. A patient already in ICU was in a life threatening situation which required members of his cardiac team to be dispatched to that patient. Which of course delayed Ben’s surgery.

The charge nurse and I had a brief conversation, and I assured her we understood. After all, if my husband were the patient in critical condition, I’d want the team to switch to his care from someone who wasn’t as critical, even though it meant Ben would have to wait even longer. Or possibly get bumped to the next week.

So it was back to the holding area, and back to waiting. By now it was after 5:00, and we knew chances of having the surgery that day weren’t good.

And we were correct. His doctor came in around 6 and apologized profusely, but explained the other case was going to take at least three hours and by then his team would be too tired to do our procedure. Since they only do them on Wednesday’s he told us he would bump someone else from next Wednesday and put us either first or second for that day. So after a very long day we were sent back home. Ben was exhausted, thirsty, and starving, after almost 24 hours without eating or drinking.

And by the time we got home he was almost too tired to eat.

So once again we’re waiting for Wednesday. This time we’re the second case. Once again he’s back on extra fluid pills and extra potassium to try and minimize the shortness of breath. And of course he’s fatigued.

Several people have asked us if we were angry over what happened, and the answer is absolutely not. Disappointed, yes, but why would we be angry? Someone’s life was at stake, and as I said before, if Ben were the one whose life was at stake, I’d want them to take care of him over someone else. That’s how it works. And hopefully the person who was in that life threatening situation is ok. We may never know, but we’re certainly going to ask.

So once again we’re seeing a light at the end of the tunnel, and this time we’re really hoping it’ll turn out to be sunshine!

More to follow in Matters of the Heart, Part 20, which will be published a few days after the procedure is successfully completed next week.

Matters of the Heart, Part 18

Posted on May 14, 2019 by Deborah Newell

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

Posted on May 6, 2019 by Deborah Newell

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.

Matters of the Heart, Part 16

Posted on April 29, 2019 by Deborah Newell

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.

Matters of the Heart, Part 15

Posted on April 22, 2019 by Deborah Newell

Waiting is never easy. Especially when you’re waiting for a decision on something as important and serious as heart surgery. And especially since your symptoms are getting worse on a daily basis.

Fortunately during the week and a half wait Ben actually ran into a couple of people who’d had the same procedure that he’d hopefully be having. Both of them told him it was the easiest operation they’d ever had, and that the recovery time was really short. One person actually was back at work a week later, and the other ten days later.

Well that sounded good!

Then it was announced a few days before our consultation that Mick Jagger from The Rolling Stones was having that same procedure! How coincidental was that! At age 75, he had it done on a Thursday and was released from the hospital the next day and would be back on tour in a few months. Actually he could have been back sooner, but because of his animated concert appearances, doctors advised a bit longer recovery time for him.

But waiting for the consultation to verify the type of surgery that was going to be done for Ben still wasn’t easy. His shortness of breath continued to worsen which made him more and more tired by each afternoon. And then there were other obstacles which came into play. Again.

While the hospital department had all of the written test results, along with most of the actual CD’s of the procedures, the CD of the first echocardiogram hadn’t been sent to them, and being able to take the readings from the actual test was a vital link in determining what would be done. Getting that CD should be simple, right, especially in this digital age? One doctors’ group or hospital department requests it, and the other group sends it to them. Right?

That’s how it’s supposed to work, anyway.

However, after three phone calls to the doctors’ group where the test was done, the hospital still didn’t have what they needed. And we were all getting extremely frustrated, to say the least. After all, it shouldn’t be that tough!

Thursday before the consultation on the following Monday I called the doctors’ office again, and once again got the run around. Finally I told them to give me the number for the office where the test had been performed and I’d handle it myself.

So I called, but the office was closed, so I had to leave a message.

Frustrating was not the word by now.

So I called the office again that next morning. Friday. And the consult was Monday. And was told, “We got your message, and we’re just finishing up putting the CD together. It’ll be at our front desk.” Needless to say, I drove to the office and picked it up for Ben to pick up from my office and take to the hospital for them to read.

As luck would have it, as he was pulling up to the hospital to drop off the CD, he got a call from a number he didn’t recognize so he let it go to voicemail. And when he listened to it, it was the hospital asking him to call them about the consultation. So he decided to just talk them in person when he got upstairs to the office.

When he got there he introduced himself to the receptionist and in typical Ben fashion, told her he was returning her call. She explained to him she’d called to tell him they hadn’t received the CD of the test they needed and were calling to reschedule the consult until they had what they needed. He just smiled and pulled the disk out of his pocket and said, “Here it is!”

Once again, as I’ve said, you just can’t make this stuff up…

Let this be a lesson to each and every one of us. We have to be in constant touch with our health care providers. If we are supposed to get a call back from our doctor’s office, and it doesn’t come in a timely manner, don’t keep waiting. Make the call again. And again until you get results. If you need to have a test scheduled, and you’ve waited more than a couple of days, call the doctors’ office until you get the date. When you’re told your information will be forwarded to a specialist, follow up to be sure it’s been done, and if it hasn’t, keep calling until you get results.

You have to be your own healthcare advocate, or an advocate for your loved one. It oftentimes becomes a team effort, but many times that’s the only way you get things done. Don’t be afraid to make a pest of yourself; sometimes it’s the only way to make it happen! And it can make a huge difference in your or your loved one’s care.

And now, it was finally on to the big consult!

And the story continues in Matters of the Heart, Part 16, to be published April 29.

Matters of the Heart, Part 14

Posted on April 15, 2019 by Deborah Newell

You’d think by now we’d all be used to the waiting, and have a little bit more patience when dealing with the endless rounds of hurry up and wait.

Not. It’s not that simple. Because the longer we had to wait for the testing, the more his shortness of breath slowly worsened, the more tired he got each day, and despite an afternoon nap after work to be able to function for a while during the evening, the harder and more frustrating his situation became. Walking up the stairs to get ready for bed even became an effort.

The morning he went out to get the newspaper and was out of breath from walking up the four steps back to our front door…well, we knew something had to happen, and soon!

After the cath and the other two tests, we were able to schedule the X-rays of his mouth and jaw for the following week. That was simple. And the nuclear CT scan was set for the following Wednesday.

Could we possibly get his surgery done before our granddaughter was born? It was starting to look like it just could happen!

But as I’ve said before, you just can’t make this stuff up…

Because the Friday before the scheduled Wednesday procedure, the hospital called him and said they were canceling it!

Why? Because his insurance company hadn’t approved it yet! When he called me to let me know, he was so upset and so angry I was afraid he was going to have a stroke!

Calls to his insurance company and back and forth to the hospital were only somewhat successful. The hospital agreed to not cancel his slot until the morning of the procedure in case it was approved at the last minute. And the representative from the insurance company, after Ben had explained the reason for the CT scan as well as its importance for approval of the TAVR procedure for his heart valve replacement, agreed to do everything she could to speed up the approval process.

And once again we were in a holding pattern, waiting for answers. And wondering how long this delay would set us back.

The hospital told him to go ahead and do his preparation for the test on Wednesday morning, just in case they got the approval at the last minute. (Fortunately the prep was only taking a couple of antibiotics and not eating after 8 am.)

But, not unexpectedly, at 11:00 that morning he got the call that he was being rescheduled for the following week because the approval hadn’t come through. Again we had to wait!

And it was a long wait. We wondered if the insurance company would come through or not.

Now for just a moment, imagine how it feels to know that your health, your very future, depends on people you don’t know, will never meet, and who know nothing about you at all except what they see on paper and compare your situation to their handbook of whether or not your case qualifies per their standards of payment approval. And you can’t help but wonder if they’ll try to find a loophole to deny testing. Yes, it does come down many times to the insurance company, but that’s why we have health insurance. We cannot afford all of this on our own; very few people could. We imagined a group of people sitting around in a room trying to find a way they could say no to avoid paying for the procedure. Yes, your mind goes there. And in this case, so would yours.

But finally, the beginning of the next week, we got a call that the test was approved! Now we could hopefully get this resolved and move on to setting a surgery date.

So Thursday afternoon he headed to the hospital for the CT scan, which would hopefully lead to his valve being replaced and both of us getting our lives back together.

This CT scan was the easiest test he had in the process. It was done quickly, was non-invasive, and with no side effects whatsoever. After the test we met with a Physician’s Assistant who briefly went over the test results to date, which she said appeared to indicate the TAVR procedure would work in his case, however, that couldn’t be absolutely determined until all of the testing was evaluated together, including the CT scan he’d just had.

We did, however, get to take a look at the models of the two types of heart valves that would be considered if this type of surgery was used. I was a bit surprised at how big they were, but the PA explained that they were crimped smaller when placed on the end of the catheter, and then expanded when they were properly placed in the heart. That would also be explained in detail when we met with all the doctors involved to discuss the surgical plan.

So we were hopeful. Things were finally moving along. Next step…the big consultation, which was scheduled for 10 days later, possibly lasting up to three hours! Not much longer to wait. And then we’d finally have the surgery date.

The story continues in Matters of the Heart, Part 15, to be published April 22.

Matters of the Heart, Part 13

Posted on April 11, 2019 by Deborah Newell

At the end of our last installment we were arriving at the hospital at an early hour to check Ben in for his heart catheterization procedure. It wasn’t his first one, or second, or even third. I think I’ve lost count by now.

But each time I’m nervous. Something about this particular test just makes me a bit antsy. The idea of running a tiny catheter into an artery up into the heart unnerves me, to say the least. I know it’s done all the time, and the doctor doing this one is an expert with it, but still, it’s one of the procedures that just scares me if I think about it.

(After all, I’m the one who almost fainted when I watched our four year old daughter have blood drawn before her tonsillectomy. Didn’t bother her, but it sure did me! And I still can’t watch the nurses start an IV or draw blood! And if it’s on me…..you don’t want to know!)

But I did get to stay back in the prep area with him, and yes, I looked away when the needles appeared. He was calm, and hungry, since he couldn’t eat before the procedure, and just wanted it done and over with!

We hadn’t yet met the doctor who would be doing the cath, and eventually the valve replacement itself, but when he came in to talk to us before the procedure, he instantly gave us a lot of peace, and certainly put my mind at ease, or as much as possible. Dr. T had a wonderful bedside manner, a great personality, and explained everything they were going to do, and why, and the next steps that were involved in getting the valve taken care of.

As long as this procedure showed no blockages of the arteries or other problems, they would need an ultrasound of the carotid arteries, a pulmonary function test to check his lung capacity, a CT scan of his chest and abdomen, and a specialized set of dental X-rays to be sure there was no infection in the mouth or teeth. Fortunately two of those next tests could possibly be done that day, and as long as the cath results were good, he would try to have them scheduled to be done before we left the hospital, which was encouraging. The other two would have to be scheduled probably the following week or so.

After he had reviewed all the results, there would then be a consultation with all of the surgical team that would be involved at the Heart Hospital where the operation would take place. There would be 3-4 surgeons from two different cardiology practices involved, as well as the anesthesiologists, the pulmonologists, nurses, etc. It was enough to make our heads spin… And we would be there as well listening to all this and asking questions as they decided how to best operate on my husband!

Questions?

Yes, a lot of them. But where to start. The biggest one, however, was when this could be done and why we had to go through all of this when everyone knew the valve had to be replaced?!

Quite simply, they have to make sure to determine the best and safest way to do this, especially since he’s had two open heart surgeries before. And you can’t just take him in, open him up, and say “ok, how are we going to do this?”

That makes sense, except when your husband is the one going through it all.

The cath procedure was actually quicker than I anticipated. In fact, we were called back to talk with the doctor probably about 45 minutes after they took him to have it done. Which sort of worried me, especially when we waited in the consultation room for about 15 minutes before the doctor came in. Of course that had something to do with having to wait so long for news from the ablation surgery when we later discovered they’d had trouble stopping the bleeding….

Fortunately that wasn’t the case this time. In fact, as Dr. T told us, the procedure went very well, and from what he saw, Ben was a candidate for the valve replacement by going through the arteries in the groin! Good news!

Because our daughter had arrived after the doctor had talked to us before the procedure, he went through the same basic scenario he’d told Ben and me earlier, except that he was now putting in orders for two of the tests to be done that day if possible, while we were still at the hospital, since Ben would have to be there until at least 1:00. (Catheterization patients are required to stay flat on their backs for 4 hours after the procedure so that the collagen plug used to close the point of entry will stay secure and no bleeding will start.)

Of course he asked if there were any questions, and Ashley being Ashley, she had one very important point to make. “We know he needs the surgery, so you need to get it scheduled as soon as possible. I’m having this baby May 1, so his operation needs to be done now, and he needs to be able to be there that day so he can hold Ryleigh!”

Dr. T just smiled and assured her they’d do what they could to make that happen. but they all wanted the best for her dad, so they’d see what they could do….

And by the way, she wasn’t kidding! Not at all!

Fortunately they were able to do the carotid artery ultrasound shortly thereafter. Since our pregnant daughter was still there they were joking around about checking to see if there was a baby in there, and if it was twins! At least he was still maintaining his sense of humor.

Which continued when he had his pulmonary function test, as he and the technician discussed which wines they liked and what Italian food they wanted for dinner. That test, however, wore him out because of the effort it took for him to take deep breaths and then blow them out quickly. I couldn’t help but wonder how bad those test results were going to be.

Finally, after spending over ten hours at the hospital, we were on our way home. Ben was exhausted, and I was tired as well as stressed. Although we had some hopeful news, we still had to wait for the other two tests, as well as for the doctors to get together and decide what to do and when to do it.

We were still in a holding pattern, and Ben continued to get more exhausted every day, and his shortness of breath slowly increased.

I was anxious and worried, and could only imagine how he felt….

The story continues in Matters of the Heart, Part 14, to be published April 14.

Matters of the Heart, Part 12

Posted on April 8, 2019 by Deborah Newell

If you’ve been a regular follower of this series, you already know how much cardiac problems can affect not only the individual going through them, but their family and friends.

Symptoms of heart disease or other heart issues are lived with on a daily basis by the individual experiencing it. Their symptoms can sometimes be controlled by medication, but not always. And their family lives with it as well, on an emotional basis.

It’s not easy for anyone involved.

Particularly the individual waiting for test results, for the correct medication to start making a difference, waiting for decisions on surgery or similar procedures. Figuring out how they can afford the medication their doctor has prescribed when their health insurance doesn’t pay very much for certain lifesaving drugs that are terribly expensive!

And waiting to have tests that will help determine the next step in treatment can seem like forever.
However, I must also confess that having to put the cath off because of risk of infection really did a number on my emotions. I’d been so anticipating getting answers that day, and having to wait really started to depress me!

And unfortunately that’s a normal reaction when the stress has piled up so much, and you had a certain date when it should end, and then it suddenly changed. And we had another almost three weeks to wait. When Ben called his dentist about his aching tooth on Monday morning, they couldn’t get him in until the next day. Meanwhile, his catheterization was rescheduled for two and a half weeks later. Plenty of time to get everything under control, right?

So we thought. When he saw our dentist, Dr. K informed him that yes, the tooth was abscessed, and he needed a root canal and a crown. Plus the one beside it was also starting to get infected from that one beside it….

Two and a half hours later he was on his way back home with antibiotics, a numb mouth from the root canal, and a headache. Because his mouth was so swollen from the infection he had to wait and go back again the end of the week to get the impression made for the permanent crown, but we should still be fine timewise, since we had almost three weeks. And the doctor couldn’t do the catheterization unless he had the permanent crown in place because of the risk of infection.

Of course the best laid plans often go haywire. The permanent crown was supposed to be back on the following Friday. And guess what…on Friday Ben got a personal call from our dentist, very upset, because the crown wasn’t there. The person who was supposed to be following up on it didn’t. And Dr. K was going out of town that weekend and not scheduled to be back until the following Wednesday night. Which meant the cath would have to be rescheduled again….

But we have a phenomenal dentist, who we’ve been going to for 22+ years, so he changed his travel plans to fly back home Tuesday morning before the cath on Thursday and put the permanent crown on.

Then…guess what…another phone call Tuesday around noon. His plane was delayed because of all the storms throughout the country. He wouldn’t be back in town until at least 7:00-8:00 that night.

So now we had to switch to Plan C, or maybe even Plan D. His dentist appointment was rescheduled to Wednesday at 6:15. Ok, we can do that. The cath wasn’t until Thursday morning.

Until another call on Wednesday around 4:00, this time personally from Dr. K apologizing profusely because his earlier patient had some serious issues and their appointment would take longer than planned….
So at 8:00 that night we finally met our favorite dentist at his office and 15 minutes later Ben had his permanent crown! In time for the next day’s procedure!

You just can’t make this stuff up!

But thankfully, Ben would now be able to have the cath, so the next morning we arrived at the hospital at 7:00 am and checked him in to the Heart Center at the hospital.

Finally we’d start getting some answers! It was about time!

And the saga continues in Matters of the Heart, Part 13, to be published April 11.

Matters of the Heart, Part 11

Posted on April 4, 2019 by Deborah Newell

This is as good a time as any to talk about the emotional toll the last 12 months have taken on us. Or should I say on me. I know it has on Ben as well, but I cannot write from his perspective.

As I said before, these heart issues affect the patient physically, but also all of our emotions, our daily lives. It’s stressful, not only on the person actually experiencing the problems, but on 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 for some time, as our story continues.

I cannot speak for Ben, because all I know is what he tells me, which is not a lot, or often, unless I ask, and keep asking. I know he’s worried, and I’m sure he’s scared, but I also know he’s trying to protect me from those fears.

After all, he has all of the physical symptoms to contend with, and the actual surgery, as well as the emotional stress. That has to be even worse.

Of course, I don’t tell him a lot either about how I’m feeling, because I don’t want to worry him. Or upset him. However, with all we’ve been through recently, and all we’re getting ready to go through, I think it’s time to talk about it.

Because all of this takes more of a toll on you than you realize. A lot more.

There are times that your mind starts racing, imaging all kinds of things that could happen. “What if’s” are hard to stop, once you start thinking about them all.

What if he’s not able to have the surgery the least invasive way? What if he has to have his chest cut open a third time? How dangerous is that, really?

How long will it take him to recover? What will be involved in his recovery this time? How am I going to take care of him as well as help our daughter who’ll most likely be having her second baby by C-section about that same time? Her husband can’t do it all and work at the same time.

Will Ben be able to continue doing the things he enjoys? Will he be able to continue to work, even though it’s only part time, and how long will it be until he can go back? What happens if he can’t?

We have a two story home. Should we start planning to sell it? Where would we move? What could we afford if he can’t work? And how in the world could we physically accomplish that actual moving without a ton of help?

And the really tough ones I don’t want to think about…should we update our wills before the surgery? Our medical directives?

What if he ends up eventually needing a heart transplant? How would we be able to handle that? I can’t even fathom it, but yes, your mind goes there as well. Several people have even innocently asked me that question without knowing all of the story.

And then there’s that thought that worms its way into my mind in the early hours of the morning when I just can’t sleep…what if he doesn’t make it?

It’s natural to have those thoughts, those fears, especially with all we’re going through. He’s my husband. I love him. And I’m worried.

There are a lot of nights I wake up and listen to be sure he’s breathing. I remember a good friend of my mother’s whose husband had severe heart problems saying the same thing. Now I know what she meant.

There are those who’ve told me that I don’t have enough faith; that I’m not trusting the Lord enough. That if I really believed I wouldn’t be worrying because I’d know my husband was going to be all right. That I need to pray more. That if we prayed more the Lord might heal him without surgery.

I’m sorry. Please don’t tell me these things. Or anyone else going through something like this. Don’t insult me or try to tell me I don’t have the faith you do, because that’s what you’re actually saying. You are actually judging without even realizing it. Unless someone is actually experiencing it, they really have no idea.

They aren’t in my place. They haven’t been in my place. And I hope they never are. Because if they were, or they had been, they’d most likely see things differently.

I trust my Lord. I believe in the power of prayer, and I’ve seen it work. Many times. And I do pray for him. But there are times that our humanness comes out and we get scared. We go through the “what if’s” and we find our minds going in places we don’t want to be. We cry. Sometimes we cry til there are no more tears. Many, like me, are careful to not let anyone see us cry, because we don’t want our weakness and fears to show to other people. We want to appear strong, when on the inside we’re crumbling.

But those feelings are there, and they don’t go away.

That’s reality. That’s how it is. And when you really aren’t sure what you’re facing; when you know there are risks; and that those risks may have to be taken, it puts you in a place you don’t want to be.

And getting out of that place is hard. Very hard. It doesn’t make me less of a person, or less of a believer. It reminds me that I’m human.

We will get through this with the love and support of family and close friends. With very good, excellent, dedicated medical teams at one of the top heart hospitals on the East Coast. And because of our faith we will look back on this and say, “We survived another one!”

Thank you all for your support so far. It means more than you know.

And the saga continues in Matters of the Heart, Part 12, to be published April 8.

Matters of the Heart, Part 10

Posted on April 1, 2019 by Deborah Newell

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.

Matters of the Heart, Part 9

Posted on March 28, 2019 by Deborah Newell

As I said in the last episode, there’s an old song that says “Only love can break a heart. Only love can mend it again.”

True, but not true.

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 don’t want to find that out for yourself. Because it’s hard. Really, really hard. It’s a process, and a long one.

After the results of the echo were determined, the next step was scheduling the trans esophageal echocardiogram (TEE) that would hopefully determine when and what kind of surgery he’d have to have to correct the leaking valve.

So we thought. But it’s never that simple when dealing with matters concerning the heart.

The TEE was scheduled on a Tuesday around 1:00. Because he would be only lightly sedated for the procedure, an overnight stay wouldn’t, or shouldn’t, be necessary. So we went to the hospital late that morning suspecting a fairly quick in and out procedure with the results giving us a clear picture of the next step. Maybe even getting something scheduled.

Surprisingly, I was able to stay in the prep area with him until it was time to actually do the TEE. And it was quick. Seemed I’d no sooner stepped out so they could begin when the nurse called me back again because it was over. Ben had been exhausted that morning, so the light sedation has put him right to sleep! In fact, the nurse assisting his doctor told him in the twelve years she’d been doing these tests, he was the first patient who’d ever gone totally to sleep! Go figure…

The doctor was there and waiting for me when I came back to the room. Ben was already awake and ready to hear the results. And so was I.

But they weren’t quite like we were expecting. The doctor explained that the valve was definitely leaking, which accounted for his shortness of breath and his fatigue. What we hadn’t thought about though, or even considered, was that the valve was leaking not from the center, as the two previous times, but on the side where the sutures were from where the replacement valve had been sewn in some 16 years before. He even drew us a picture on the whiteboard that was in the cubicle to describe what he meant. He explained the sutures were starting to unravel, resulting in the leakage.

And, to further complicate the matter, because of exactly where the leakage was would make it more difficult to replace the valve transcutaneously, or through the veins in the groin, since the valve is normally inserted in the middle of the old one and then “ballooned” out to make a tight fit. (No I don’t think that’s quite the term he used, but that’s all I can remember.)

Plus, to make things even more complicated, it appeared the aorta might also be in need of repair, and that couldn’t be fully determined until Ben underwent a heart catheterization to better see just what needed to be done. And that would have to be done by another doctor who specialized in those procedures.

We got answers, yes, but the answers only led to more questions.

As a former seamstress, my first thought was how long did we have before more sutures started coming out, since I was imagining the stitches unraveling like stitches from a sewing machine when the thread was pulled! Obviously he’d been asked that before, as he explained these were individual sutures, and not subject to the unraveling. However, once some of them started loosening, they would all continue to do so, and it had to be handled. “Fortunately it’s not an emergency, but it is going to require surgery in the near future. We just have to determine how it needs to be done. That’s what the cath is for. It will help determine which way to do it.”

So on to scheduling the cath. Two and a half long weeks to wait because the cath doctor was on vacation and then he was totally booked the following week. Well, I guess that wasn’t bad; at least they weren’t rescheduling someone else to get Ben in because he was in bad enough shape to have the procedure done immediately.

Of course, for him, it meant that much longer to be miserably exhausted and short of breath all the time. His quality of life was definitely not as good as we’d both like, but we had to deal with it for a few more weeks.

So we thought…but we missed that one comment, “have to determine which way….” And making that determination wasn’t going to be as easy as we thought.

And it continues in Matters of the Heart, Part 10, to be published April 1.

Matters of the Heart, Part 8

Posted on March 25, 2019 by Deborah Newell

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

Not necessarily.

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.

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