Matters of the Heart, Part 27

Posted on September 3, 2019 by Deborah Newell

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 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 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 12

Posted on April 8, 2019 by Deborah Newell

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

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

It’s not easy for anyone involved.

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

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

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

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

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

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

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

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

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

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

You just can’t make this stuff up!

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

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

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

Matters of the Heart, Part 8

Posted on March 25, 2019 by Deborah Newell

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

Not necessarily.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Just Living Life

A journal of advice, stories, and ideas from years of living

Tag Archives: cardiac issues