Matters of the Heart, Part 25

Posted on August 19, 2019 by Deborah Newell

This Friday is supposed to be the day. Hopefully it will be Ben’s last heart procedure for some time.

It’s been a long five weeks since the last one…you know, when he was supposed to get his new upgraded pacemaker. And didn’t.

Although he received a double ablation in preparation for the new pacemaker, these last few weeks haven’t been all that easy. There have continued to be problems, which are still going on even as I write this.

It actually began the night he came home from the ablation. Walking up the stairs that night the shortness of breath was back. And his heart rate was up to 90, although it was at 70 when we left the hospital. His weight was up to 171 and it had had been 167 when we were at the hospital. How did all that fluid that come back so quickly???? And his fingers were so swollen he couldn’t get his ring back on. And it hadn’t been like that at the hospital. The on-call PA said it was all normal and if it weren’t any better the next day to let them know.

And it was ok. UntilFriday morning when his Kardia app told him he was back in Afib….

It was back and forth like that for the next week, but he was at least able to go to work. He was terribly tired when he got home, but he did it.

Then on a Saturday 20 days after the procedure he got in the pool for the first time and tried to swim. He only went 1/4 of the length and was so short of breath we thought we were going to have to help get him out.

We went to an early dinner and when we got home he leaned over to pet the dogs and got extremely dizzy and lightheaded. We took his BP several times and it was 66/46!

Fortunately when we called the doctor’s office the PA on duty was his doctor’s PA, who knew all about his case. She emphasized his heart was still adjusting to the ablation and since his heart rate was fine, we shouldn’t panic. (Right!!) She told us to cut back on two of his meds because they tended to lower blood pressure. And to eat some salty food! Salt on a low sodium diet?

But we fixed him some salty popcorn which helped and his BP was up to 83/77 when we went to bed. The next morning it was normal.

It’s been back and forth like this for the last two weeks. He’s very tired when he gets home from work and still has to take a nap. The shortness of breath hasn’t gone away, and some days is worse than others. He still gets swelling in his abdomen even though he’s on double doses of fluid pills. His feet are swollen off and on.

Fortunately his heart rate has stayed fairly constant, with no signs of Afib. That’s a positive.

And of course with all of this going on, even though he’s been told by the doctor’s assistant that the new upgraded pacemaker will take care of all of this, he’s still not sure it will. And I don’t blame him.

There’s just been so much….

So this Friday is the day. So far. And hopefully the beginning of a calm period in our lives. A time to

start going places again without worrying if he’ll get too tired to enjoy himself. A time to only take his vital signs once a day instead of four. A time to be able to lift his granddaughters and our little dogs without shortness of breath.

Thank you for sharing this journey with us. And may there only be one or two more chapters of updates about heart surgeries and other cardiac procedures!

Stay tuned for Matters of the Heart, Part 26.

Matters of the Heart, Part 24

Posted on July 22, 2019 by Deborah Newell

I really had hoped this would be our last installment of the series, at least for a few months. However, as I’ve said before many times, you just can’t make this stuff up! Even if you try.

When we woke up the morning of Ben’s scheduled pacemaker upgrade and ablation procedure, all we could think about was, it was finally going to be over, at least for several years. He’d finally be saying a permanent goodbye to Afib, shortness of breath, and fatigue. It was going to be the end of a long and difficult journey.

We were so looking forward to getting this all behind us.

But still I had this nagging feeling in the back of my mind, and I ignored it. After all, what could go wrong? We’d been though enough already.

The surgery was scheduled for 9:00 and we got to the hospital right on time at 7:30. Although the Heart Center was packed, we were taken back fairly quick to begin the pre-surgical prep. After all of the various procedures we’d gone through, we fairly well knew the routine and were able to mentally check off each step in our minds.

One difference this time was having the pacemaker specialist come in to check Ben’s current pacemaker and download the information from it to put into the new one. (Never thought about that!) We asked questions about the new device and how it basically worked, since we hadn’t had the opportunity previously.

The tech said that like the one Ben currently had, it monitored the heart to keep it in rhythm, but also would monitor when he went into Afib, and would deliver a shock to the heart to put it back in rhythm when necessary. Yes, he would feel it, but most likely he could tell when it was going to happen because he’d feel somewhat light headed already from the Afib. And it wouldn’t be anything like the shock of the paddles that are used when the patient is unconscious or needs to be resuscitated, since this one shocks directly through the heart and doesn’t have to go through clothing, chest muscle, etc. to get to the heart itself.

He told us, “It’s sort of like going from a car to a diesel truck!” Well, I think we could relate to that. At least it gave a good visual.

When Ben’s surgeon came in for a final discussion before surgery he explained again that he was going to do the pacemaker change-out and would then do a complete ablation so that the pacemaker would be totally in charge of the heart keeping a proper rhythm.

The new pacemaker would also communicate its daily activity via WiFi through a monitor on his night stand and the readings would go to the doctors’ office daily. He’d have regular 6 month checkups to be sure it was working properly. And that it would require a battery change about every 5 years. We’d know in advance when it needed changing with the monitoring and the regular checkups.

Well, he’d had his current one for five years and it was still working properly, so that sounded fine.

The doctor explained he would also be doing a venogram before they started so as to be sure the veins were clear and open so the pacemaker could be properly installed in place of the other one. If the veins weren’t in good condition he would have to install the new one on the other side of the chest, a somewhat different procedure. For that reason, Ben would be awake during the venogram so they could discuss any change of plans necessary, as he would have to consent to the change in procedure.

So we were ready. Time to get it all done! By that time our daughter had arrived and we said goodbye and good luck to our patient, and went out to wait the two hours or so it would take.

And as planned, the first thing done in the OR was the venogram, and the doctor was pleased with the results. Ben remembers hearing him say everything looks good to go, so let’s get started! That’s the last thing he remembers til he woke up a few hours later.

And I got the phone call from the nurse two hours later that the surgery was over and went well; Ben was in the recovery area; and the doctor would be out in 15-20 minutes to talk to us. I was relieved, to say the least!

Finally all this was behind us.

Or so we thought.

Until I talked to the doctor.

The first words out of his mouth were “we weren’t able to put the new pacemaker in.” And he looked very upset.

What?

He quickly went on to explain that although the venogram was fine, once they opened Ben up and got ready to put the new device in, he discovered because of the way the old pacemaker had been put in, he wasn’t able to run the wires properly for the new one without risking the veins breaking.

So they had to re-implant the old one. Ben would now require another surgery in 30 days in which the new pacemaker would be inserted on the right side and then the existing one on the left would be disabled. Since Ben was already under anesthesia, he wasn’t able to give consent to the different procedure at that time. and they also had to allow time for healing before they went back in.

The good thing, though, was that the doctor had been able to do the ablation, so the Afib should be gone, at least until the new pacemaker was implanted. And I will say, the doctor did not look happy about the change in plans for his patient.

Neither was I, and I knew Ben wouldn’t be either.

I really didn’t know what to say, and I’m sure I haven’t explained all of this properly. I was too shocked to completely take it all in. All I could think was, after all this…we still had to wait…

More to come in Matters of the Heart, Part 25.

Matters of the Heart, Part 23

Posted on July 12, 2019 by Deborah Newell

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 22

Posted on July 3, 2019 by Deborah Newell

Sometimes our stories don’t unfold the way we think they should, the way we want them to. And with a cardiac patient, unfortunately sometimes that’s more than true.

After spending the weekend waiting for a call about what the doctors had decided to do, and no calls coming in, we could only hope that we’d hear something on Monday. And of course, each day Ben’s condition got slowly worse.

He had already called his boss Sunday afternoon and taken another week of sick time off. As tired and short of breath as he was, there was absolutely no way he could do his job on Monday which entailed driving to Williamsburg from Virginia Beach, making thirty stops at local businesses (in and out of the car twice each time)and then stopping at the Williamsburg bank branch to drop off what he had collected, and then drive back home.

Monday morning his heart rate was in the 130’s and his blood pressure was low, but still not quite low enough for concern. He stayed around the house all day, inside instead of out in the summer heat, and took a nap, but by the time I got home from work his heart rate was still high, his blood pressure was lower, and the shortness of breath was much more pronounced. Not a good combination.

He finally had gotten a call from the doctors’ office and was told that his doctors had scheduled a procedure for him on July 17, almost a month away. He would have another cardiac ablation, followed by upgrading his pacemaker to include a defibrillator, which would shock the heart back into regular rhythm when it went into Afib. This had been discussed before, but now obviously it needed to become a reality.

But waiting almost a month to have it done…that wasn’t what we wanted to hear. Unfortunately both doctors were scheduled for vacations, and the special operating room needed was booked solid.

He had asked why he couldn’t get in sooner since he was in such bad shape by now, but was repeatedly told he was not in an emergency, life threatening situation. So he would have to wait. A month. While he became worse every day. And the only other solution would be to go to the hospital if he started getting any worse.

Well, by the time we were ready for dinner that night his blood pressure was down to 90/72 and his heart rate was climbing. He could also feel his heart fluttering. So he called the after-hours number to his doctor, and it seemed to take forever to get a call back. In that shape, 45 minutes felt like forever!

And when he finally got the call, and explained his symptoms to the Physicians Assistant who called him back, we got ready to go to the hospital. As the PA said, “Ben, you’re a ticking time bomb right now. You need to go to the hospital now. Don’t wait.”

So I grabbed my keys, my ID badge, and off we went! He was walking so slow we were worried he might need to be carried, but he didn’t want an ambulance.

Fortunately we live 5 minutes from the hospital, and when I pulled up I put my emergency flashers on and ran inside to get someone with a wheelchair to bring him in. Amazing how quickly that works when you say breathing problems and cardiac patient! (And yes, if we weren’t so close, we would’ve called an ambulance!)

They took him back right away and by the time I had parked the car and run back inside, he was being wheeled into a triage room where he was hooked up to a heart monitor, IV lines started, EKG taken, blood drawn, put on oxygen, and meds given to calm his heart down. By that time it had reached 144, which was way too high, and his blood pressure was dropping.

All I could think about was the time we were there some five years ago when he’d coded in front of me. I couldn’t shake those feelings. And when you’ve been in that situation before, you tend to relive it in your mind more than once.

Fortunately that didn’t happen this time. They were able to quickly stabilize him with medication, and his heart rate went back down and actually stabilized. His blood pressure slowly came up to a normal reading.

And I breathed a sigh of relief.

I also knew he would probably be there for a few days, because we had no idea how long his symptoms would stay in the normal range without all the medications, and he still had a lot of fluid in him which was causing the shortness of breath. And when he tried to stand up, he was shaky and light headed.

Of course, in my opinion this certainly constituted an emergency situation. But I guess in the overall scheme of cardiology, since he was able to be stabilized with the medication, it still wasn’t.

And after three hours in the Emergency Room, around midnight he was transferred to a room in the new cardiac wing, a large corner room, with a view of the new garden area, and a “smart bed” that could talk to him. Three nurses were waiting for him when we got there. As nice as it was, and as wonderful as the medical staff was, this wasn’t how we wanted the week to start.

We knew he was in good hands, and he was where he needed to be, but still….

Here we were again….

More to follow in Matters of the Heart, Part 23….

Matters of the Heart, Part 21

Posted on July 1, 2019 by Deborah Newell

We really thought, or at least Ben thought, that once the cardioversion was done after the valve replacement that life would be good. Life would be smooth. He’d be back to his normal self and stay that way for years.

Well…that’s what we thought.

And he was doing great. Until that Friday night exactly three weeks after the cardioversion.

A good friend of Ben’s had bought him a device to monitor his heart rate through his cell phone by using a special device that fits in a case on the back of his phone and uses a free app called Kardia to measure and record his daily heart rate. From the day he got it, he’s been using it faithfully.

But that night he’d been feeling tired. Actually he had been feeling that way for the last few days when he’d come home from work, but we attributed it as just catching up from the surgery.

So he checked his heart rate. 137.

Not good.

And the app told him “possible Afib”.

Possible? In his case, probable. And it had been exactly 3 weeks since his after surgery cardioversion.

The same length of time the last one was effective.

Of course he called his on-call doctor but there wasn’t much they could do on a Friday night but tell him to go to the hospital if necessary.

But by Monday morning the swelling and shortness of breath had set in, and much quicker than last time. The doctor’s office prescribed changes in his fluid pills as well as some of his other meds to try and slow the Afib. Which unfortunately didn’t work too well.

The good thing, if there was a good thing, was that he already had a follow up appointment from the TAVR procedure. Otherwise, who knows how long we’d have had to wait!?

As it was, every day he got a bit worse, a bit more tired, and more swollen from fluid accumulation. More shortness of breath. Walking up stairs was an effort. Taking the dogs out was an effort. And by the end of the day he was totally and completely exhausted.

We looked so forward to getting something done at his appointment on Friday.

But it wasn’t totally what we wanted to hear.

After relating all of his symptoms to the Physicians Assistant, reading his EKG which clearly showed his “old friend Afib” had come back, all we were able to get accomplished were prescriptions for new meds that were “only a bandaid” until his two doctors, who were off that day, of course, could be reached and consulted. But fortunately his new valve was working perfectly.

So we were again in a waiting game. He was once again exhausted, having shortness of breath continually, and just miserable. He couldn’t work, had trouble taking the dogs out, and didn’t even feel like sitting outside by the pool, let alone just get in there and relax on a float.

And it was the start of the weekend, so what were the chances of finding out anything quickly, even though we were assured by the PA of getting a phone call by the end of the day…..

More to follow in “Matters of the Heart, Part 22”, to be published July 3.

Matters of the Heart, Part 20,

Posted on May 30, 2019 by Deborah Newell

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 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.

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