Matters of the Heart, Part 28

This one is actually not about Ben’s heart journey. Certainly we are still being cautiously optimistic that he will be doing well for quite a while. But still there are those times we get concerned and wonder if we’re back on that emotional roller coaster again.

It’s a natural feeling when you’ve been on such a long journey.

But this story has a somewhat different story line. But it still concerns matters of the heart.

The day of Ben’s valve replacement surgery several months ago, Dr. T had mentioned a book to us all that he said was a fascinating history of cardiac surgery. I figured, “yeah I’m sure. You’re a doctor so I’m sure it’s really technical and way past my understanding.”

However, our friends that were there with us bought a copy, since our friend Ron had just had valve replacement surgery several months previously. And they enjoyed reading it so much, they gave us our own copy.

Which of course I didn’t start reading right away, because I was finishing a couple other books. So I picked it up this past weekend, and was immediately thrown back into a world in which cardiac surgery was unheard of.

I won’t delve into a lot of detail about what I’ve read so far. But it’s changed the way I look at all the procedures Ben has undergone, and made me realize how fortunate we are that we are in an age of technology that had made what was unthinkable 50 years ago an everyday occurrence today.

I hadn’t really thought about it before. Or I guess I had, but not to the extent this book is making me think about it.

In the early days of heart surgery, more patients died than lived. The only human patients operated on by the early cardiac surgeons were those who had no chance without such experimental surgery. To them, and their incredible doctors, who were pioneers in a new field of medicine trying to perfect techniques to save lives, we owe so very much.

Ben would not be here without each and every one of them.

Bear in mind I’ve only started this incredible book, and I’m just in the part where the surgeons are attempting to mend holes in the hearts of infants and children, the “blue babies” of years ago.

Those many stories reminded me of our friends whose son was operated on at the age of two months old to mend a hole in his tiny heart, which actually turned out to be three holes when the surgeons opened him up. The skills these early pioneers developed led to life saving surgery for baby Cash who is now three years old, and whose chest scar is barely noticeable. Who has a long and healthy life ahead because of this lifesaving surgery.

But the stories also reminded me of another baby in my own family, who was one of those blue babies. Her story, unfortunately, was much different from Cash’s.

Margie was born about 10 years after me, I think. I really don’t totally remember. I don’t even know if I ever met her, because it was around the time my father had died, and my mom and I were trying to piece our own lives back together again in our new normal.

Margie was the second or third daughter of my oldest cousin. She and her husband lived about four hours away and we didn’t see them much. My mother had told me about Margie being very sick, and how the doctors couldn’t determine what was wrong with her right away.

My cousin and her husband took their daughter to several specialists, and it was determined she had a hole in her heart and needed surgery to repair it. To me at the age of 10 or so, that sounded quite scary. I’m sure it was even scarier for my cousin and her husband.

But Margie had a successful surgery. The hole was closed up, and she was brought into the surgical recovery area. She seemed to be responding well, but as we were told, she opened her eyes, then closed them and rolled over and died. We were told her heart couldn’t handle the normal blood supply because it was so used to the heart’s diminished capacity, and the normal blood flow overwhelmed it.

That was almost 60 years ago. Open heart surgery was very new, and risky. But for patients like Margie, it was their only chance, because eventually they would drown in their own blood.

From reading this book so far, the evolution of such surgeries is amazing. And we are so thankful for all of the early cardiac surgeons who were willing and determined enough to continue to try when there were so many failures. And we are more thankful for those brave patients who were willing to risk it all for a chance at a normal life, instead of an early death. Because of them, thousands of patients every year now undergo such procedures, which today are regarded as routine.

Although I haven’t thought about my younger cousin in many, many years, this book has already brought about a lot of questions…so many what if’s.

What would she be like today? What would she be doing? Would her heart issues have prompted her to go into the medical profession? Would her children have inherited a propensity for heart problems?

When Ben’s heart issues first surfaced 34 years ago, it was scary. I had no idea what to expect or what would happen. I never thought about how if it had been 15 years or so earlier, well, the results would most likely have been a lot different.

I never thought about all the work, the research, the trials and errors, the unsuccessful surgeries that took place in the years before that led up to that first successful surgery he went through. And all the ones that came afterward to make his future surgeries successful.

For those of you who would like to read this fascinating book, it is “The Heart Healers” by James S. Forrester, M.D. and is available on Amazon.

More to follow as the saga continues, most likely in ways we never anticipated. But one thing for sure…it’s always an adventure.

Matters of the Heart, Part 27

As I said in Part 26, you know there’s always an extra story… nothing is ever as simple as we think. It’s always an adventure! And you just can’t make this stuff up!

Ben’s pacemaker surgery was to have been 2-2 1/2 hours. And true to the estimates, it took just a little over 2 hours. Not bad. Maybe he could even go home that night?

His doctor came in to the waiting area shortly after the attendant had told us it was over and he was in recovery. Dr. I immediately came over to us, telling us the surgery had gone very well; the new pacemaker was in and working perfectly. He’d decided to leave the other one in and set it at a lower rate as a backup, just in case something happened to the new one, which he had no expectation of happening. Sort of like a back up emergency generator, to my way of thinking.

But there seems to always be a but…

And there was. He then said when they finished the procedure and started bringing Ben out of the anesthesia he noticed his left eye was quite red. He’d taken a picture of it and showed it to us, and explained he’d sent it over to a colleague who’s an ophthalmologist to get his opinion. As well he should have.

Ashley and I looked at it, and told him that happens from time to time because of the iritis he’s had for over twenty years, so we really weren’t overly concerned. Usually just a tiny broken blood vessel or a flare up which is handled with eye drops. And you could tell Dr. I was relieved to hear that.

And in typical Ashley to doctor conversation she made sure Dr. I sent her the picture because she thought it was “cool”. Which led to them discussing what he’d done for his daughter’s third birthday that morning, and ended up sharing pictures of his family trip to Dubai and riding camels in the desert!

As you can tell, we do have a great doctor here! In fact, after he left, one of the women in the waiting room asked for his name and contact information because she was so impressed with him!

And we weren’t real concerned about Ben’s eye. Until we saw him.

By that time, even though he was still pretty much out of it, and his eyes weren’t opening a lot, the eye looked visibly swollen on the outside. It had never looked like that before when this happened. And since it was the eye that he’d had the cornea transplant in several years ago, I started to get very concerned.

And when Ben came to enough to talk to us he said the eye felt like it had something in it, and he couldn’t really see out of it very well. We explained what the doctor had said, but how much he heard at that point I have no idea.

But when he finally stated opening his eyes, that left one looked the worst I’d ever seen it. Almost black-red. The bottom part of the eyeball was actually swollen out a little over the bottom eyelid. It was scary looking. And the area on his face around it was turning black as well. Ashley of course was concerned then, but took more pictures and sent them to several of her friends who are nurses and surgical assistants to get their opinions.

And of course, I was a wreck. I could tell from the monitors his pacemaker was doing exactly what it was supposed to do. But that eye…all I could think of was that somehow something had happened to the transplant!!!

Because of our doctor contacting his colleague it wasn’t long until two doctors, a resident and an intern, came over from the EVMS ophthalmology department with a pack of equipment to take a look at him. I was so glad to see them!

They spent almost an hour looking him over. Testing his vision (which in the left eye wasn’t good!), dilating his eyes and checking the transplant and his retina. At one point I was so upset all I wanted to do was go out in the hall and cry! Thankfully a couple good friends were texting me and keeping me focused.

They finally told us the transplant was fine and it appeared to be just a broken blood vessel from the blood thinners he was on, but they needed to go back and consult with their team to be sure. Relieved? Yes. Still worried? Of course.

And all the while, his eye was looking worse and worse.

Dr. I came back in and told us he’d talked to the ophthalmologists and agreed that it was a broken blood vessel from the blood thinners. And fortunately it wasn’t a retina bleed which would’ve left him blind in that eye. Another doctor would be in later to double check him, though.

He also mentioned there was something called a Watchman that he had used for other patients as an alternative to taking blood thinners which could be implanted in the heart to prevent clots. And we could discuss that later. In the meantime Ben was to stay off the blood thinners until his follow up appointment.

That Watchman sounded like a good possibility to me! But as Ben said, it would mean another surgical procedure, even though it was done through the groin like his last valve replacement. And he’d be the one having to go through another surgery!

So much to think about. And we thought this was the end of it all…

Later that afternoon as I was getting ready to leave after 12 long hours at the hospital, another ophthalmologist came in to see him and check his eye. And she confirmed it was definitely a broken blood vessel from the blood thinners, and that it would most likely look worse before it got better…in about two weeks. And let me tell you, by then it looked really bad!

It’s now been a little over a week since the surgery. His eye is finally starting to look better. He still has one more week of not driving, which is making me crazy. His heart rate is normal, but he still has shortness of breath, although not nearly as bad as it was. And he’s still a bit sore off and on from the procedure.

Life is starting to return to normal. Somewhat. We are looking ahead to him being totally back to normal.

And to an answer concerning other alternatives to the blood thinners, as we don’t want to risk anything happening to his vision.

As I’ve said many times, never a dull moment.

Stay tuned. There’s more to follow….

Matters of the Heart, Part 26

You know there’s always an extra story… nothing is ever as simple as we think. It’s always an adventure!

Friday morning started way too early. We were at the hospital at 6 am. Mind you, that’s the time I’m usually getting up! I’d told Ben several times I was going to call an Uber to take him, but I got up and took one for the team, as the saying goes!

When we arrived the waiting area for surgery check in was packed! Obviously Fridays are as heavy a surgery day as the rest of the week. We were prepared for a long day, but not nearly as long as it turned out to be.

Check in was as smooth as ever, although Ben wasn’t called back til almost 7:00 for pre-op preparation, which meant I didn’t go back with him til 7:30. Two of the nurses remembered us from our previous visits, and although they were happy to see familiar faces again, they did say they hoped it was a long time before we were back.

Yeah, we felt the same way!

Everything progressed as usual until one of the nurses came in to go over post operation procedures for pacemaker surgeries. Not a big deal, right? This wasn’t his first one.

But things had obviously changed from five years ago, because one of the first things we were told was that he couldn’t drive for four weeks!! Excuse me? That’s 90% of his job, and no one ever told us that, nor was that the protocol the last time. Of course, Ben told her that wasn’t going to happen. I was afraid he was going to cancel the surgery!

She nicely explained he would have to talk to his doctor when he came in, and that certainly was his plan! He also would have to wear a sling at night to keep his arm stabilized in order to minimize the possibility of the pacemaker wires being dislodged. Good point. And he would have a new monitoring device to take home so that the new pacemaker could transmit information at night back to the monitoring station at the doctors’ office.

I guess because the last time we went through this it was an emergency procedure, we didn’t have all these instructions beforehand. Nor would we have had very many questions, since he had no choice that time but to have the pacemaker installed.

But this was a new device, one which would not only prevent his heart from going into Afib and hopefully eliminate his fluid buildup and shortness of breath, but would also deliver a shock to his heart if it started going too far into Afib again. As the nurse told us, patients who’ve experienced such an event said it felt like a horse kicking them in the chest. And then she proceeded to give us further instructions on what to do if the device did deliver a shock, including calling 911 immediately.

We knew she had to tell us these things, but that didn’t sound promising. However, we were told that possibility was not very likely in his case, since his device would be set to only go off to shock him if his heart rate went above 180, and normal rhythm is around 70.

Ok. That sounded hopeful. Of course, I wasn’t the one having surgery…

At one point I was worried that Ben would decide not to get the new pacemaker and just leave the hospital.

But when the doctor came in to talk to us, he told us the driving restrictions were only for two weeks, and explained that was because they didn’t want to risk the wires being dislodged or pulled out due to any sudden driving moves. Or because his shoulder would likely still be sore from the surgery, and his driving reactions might be slower than usual.

That made sense.

Of course he’d have the usual restrictions on not lifting or carrying anything over ten pounds, not walking the dogs with that arm, etc. that we already knew.

The doctor also added that he would be leaving the old pacemaker in and merely disabling it, rather than making another incision and disrupting the chest again, so fortunately there would be an easier recovery and less chance of infection.

So Ben was finally more at ease, kidding around with the nurses and technicians like his normal self. Our daughter had arrived earlier with our 3 month old granddaughter and she’d put little Ryleigh on the bed beside her dad. So of course he was telling everyone he’d come in for heart surgery and had a baby instead! And a really cute one, too!

We even told the doctor how my coworker had said they should just leave the old pacemaker in and make it a USB port or a warning light that would blink if there were a problem. Funny how our minds work sometime. But it helps distract us from the stress of what’s going on around us. (And the doctor thought those comments were great!)

So after all this we were finally ready. Or as ready as we’d ever be. We were ready for Ben to be back to his normal self. To be active again. To climb stairs without getting winded. To be able to go bike riding again. And on walks with our two dogs. To play with our granddaughters and not be worn out.

When they came to get him this time we believed it was finally going to be the end of a long journey.

But suddenly I had this little feeling of unease. Nothing I could really put my finger on. I dismissed it. And after we told him goodbye, Ashley and the baby and I went to the waiting room once again while he was wheeled off to surgery.

Another two hours or so and it would be over, and all would be good! Right?

More to follow in Matters of the Heart, Part 27.

Matters of the Heart, Part 25

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

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

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

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 Emergncy 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

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,

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

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

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

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

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

In the middle of the night???

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Matters of the Heart, Part 17

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

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

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

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

Which had no effect at all.

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

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

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

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

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

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

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

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

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

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

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

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

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

Don’t miss the previous stories in this series:
Matters of the Heart, Part 1
Matters of the Heart, Part 2
Matters of the Heart, Part 3
Matters of the Heart, Part 4
Matters of the Heart, Part 5
Matters of the Heart, Part 6
Matters of the Heart, Part 7
Matters of the Heart, Part 8
Matters of the Heart, Part 9
Matters of the Heart, Part 10
Matters of the Heart, Part 11
Matters of the Heart, Part 12
Matters of the Heart, Part 13
Matters of the Heart, Part 14
Matters of the Heart, Part 15
Matters of the Heart, Part 16