Matters of the Heart, Part 23

Spending three nights and two and a half days in the hospital hadn’t exactly been in our plans for Ben just a month after a very easy and successful heart valve replacement procedure.

But unfortunately the Afib decided it was much more dominant than a new heart valve, and if you’ve read our installment of Matters of the Heart, Part 22, you’ll know exactly what I’m talking about.

Although we were so sure our hospital stays were over, once the Afib came back just three weeks after the cardioversion two days after the valve replacement, it was unfortunately a matter of time. At the emergency room he was hooked up to IV’s once again, given stronger meds to steady his heart rate, and IV injections of lasix to reduce the fluid buildup which had put him in a serious state of congestive heart failure.

And as nice as the new cardiac wing of that hospital was, and as friendly and caring as the nurses were, it still wasn’t the place he’d planned to be that week, and it wasn’t fun trying to get his body back to some semblance of normalcy so he could come back home and be able to function normally until the next cardiac procedure to hopefully eliminate the Afib once and for all!

Which was still over three weeks away.

When he finally came home he was somewhat better. The meds were helping the Afib a little, although it still didn’t go away, but the shortness of breath continued. Some days were worse than others, and he still didn’t have the energy to go back to work.

The next week was Fourth of July. We always had a cookout with friends over. This year it was extremely modified. Just a couple of close girlfriends and I were in the pool that afternoon, and Ben did manage to grill burgers for us, but he was mostly confined to staying inside in the air conditioning and watching baseball on TV. Not much excitement over a long holiday weekend, since he really didn’t feel like going anywhere. We even missed a birthday party for one of Ashley’s friends’ daughter, something we’ve never missed.

Increasing the lasix helped a bit, and he was able to go back to work the next week, although in the office rather than his regular courier routes. But at least he was able to feel productive and get out of the house!

For those of you who cannot really imagine what this is like, let me try to explain. For Ben, it’s a day by day ordeal, wondering each morning how he’s going to feel. If his heart rate will be jumping all over the charts, which makes him exhausted. If his blood pressure will stay in the normal range or drop dangerously low requiring another hospital visit. If the fluid accumulation will become worse which causes difficulty breathing and shortness of breath, making it a chore to go up stairs, lift anything over about 7 pounds, or even go for a walk. Some mornings he’s ok for a while, and some mornings he says he felt like he didn’t get any sleep when I know he did.

It’s no fun living like that, and he keeps saying he’s just waiting for something else to happen to cause another trip to the emergency room. He checks his heart rate 3-4 times a day as well as his blood pressure, and makes sure to text me the results.

For me…I worry. I can’t help it. I still wake up at night and listen to be sure he’s breathing. If he has to get up during the night, I immediately wake up as well and can’t help but ask if he’s ok. I take notice of the swelling in his abdomen and his feet and ankles and remind him to put his feet up every chance he gets. I watch his facial expressions and have learned to tell when he’s not feeling right, or getting short of breath again.

And yes, I probably nag him too much to take it easy when I think he’s overdoing it. He tells me he knows his limitations, but to me, it seems he stretches them a bit because he just wants to do what he normally does. Which worries me as well. But it’s difficult watching your husband go through this struggle, and not being able to fix it.

Fortunately his ablation and upgrading his pacemaker will be done shortly. All we can do now is wait, and pray it will correct this situation once and for all.

It’s a journey, although not one we chose. But we’re getting through it with the help of good friends, family, and understanding co-workers. And some excellent doctors.

More to follow, in Matters of the Heart, Part 24.

Matters of the Heart, Part 19

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 14

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.

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 12

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.

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 9

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.

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