Category Archives: Matters of the Heart

The true and continuing story of the journey my husband and I have been traveling since 1985. Heart problems can strike at any time. It’s not an easy thing to go through. But we continue on with the help of our family, our friends, and some very wonderful doctors.

Matters of the Heart, Part 37

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After three heart valve replacements. numerous ablations, catheterizations, and cardioversions, two pacemaker installations, and the insertion of a watchman device to prevent blood clots from forming in the heart…what’s one more pacemaker insertion?

Actually, it seems visits to his cardiologists are actually becoming routine visits, rather than worrisome appointments that tend to make us think something could really be wrong.

Fortunately Ben has two excellent cardiologists, and the one who was scheduled to do this pacemaker replacement has done several procedures on him. He’s an excellent physician and a really great person.

Such procedures are of course scheduled for early mornings, but fortunately we didn’t have to be at the hospital until 8 am, rather than the crack of dawn. That certainly made it easier, at least for me. As I’ve said before, I’m not an early morning person. 

And after he got registered and we arrived at the cath lab where the procedure would be done, the whole team was waiting for us, ready to get him prepared for surgery.

I must say this was one of the most pleasant pre-op surgery experiences we’ve had. The nurses and technicians were fun to be around, and made everything enjoyable. Well, as enjoyable as it could be when facing surgery.

Ben was his usual upbeat self, joking around with them when they asked if he needed anything. And of course he said “a mimosa”, which promptly started a barrage of jokes about what kind of mimosa would be most appropriate for heart surgery, and if everyone could join in with him!

A small glitch took place when one of the nurses was unable to get the IV line in his vein. I guess he’s had so many surgeries and IV’s, his veins have had enough.

After several unsuccessful attempts, they had to call in a specialist to use an ultrasound machine to guide the needle in. Ben asked if the guy was experienced with such things, and they told him not to worry. It was his first day in the job, but he’d be fine! 

Which of course wasn’t true (he was the leader of that team) but he played along with everyone, telling Ben he thought he could do it! We were all laughing by then, and as he started he asked if anyone had any good stories to tell so we wouldn’t get bored. Evidently some of the surgeons start out like that before the actual procedure begins, just to lighten the mood. It makes sense.

But the technician got the needle in the first try with the ultrasound machine, and Ben said he didn’t even feel it! Now if that had been me, I would’ve passed out! I don’t do needles well!

And of course there was the continued joking around about which pacemaker was going to be switched out, since he has two! We suggested they write it on his chest which one was to be changed. Which led to a story about a surgeon who used to draw a picture on the patient’s arm after surgery, and how the patients looked forward to seeing what he’d drawn when they woke up!

Unfortunately Ben’s doctor doesn’t do that. Because it would’ve been a great story. I thought how cool it would be for him to wake up with a drawing of a heart or a pacemaker on his arm, and tell him it was permanent. But no, that will have the wait til another surgery.

Time passed fairly quick, though, and soon the anesthesiologist came in to see him to discuss his role in the procedure, and Ben still continued his jokes about wanting a mimosa, which the anesthesiologist went along with as well.

We also talked about how great it would be if we didn’t have to go through this to take care of the battery, and wondered why someone hadn’t invented a way to simply charge the battery by placing some sort of charging device on his chest on top of the pacemaker, sort of like charging a cell phone. 

Good concept, and most likely one day that will actually happen. Who knows?

Soon it was time to take him back, so Ashley and I told him goodbye and went to the waiting area until everything was over.

I still had no worries or concerns this time, unlike during some of the previous such operations. I guess we’ve gone through so many, by now they all begin to feel routine, even though they really aren’t.

It wasn’t long before his doctor came out to let us know it was all done; the pacemaker replacement went smoothly, and we could see him shortly. He’d be able to go back home after about an hour.

Which he did. And now, a few days later, the only evidence of the procedure is a bandage over the incision which stays on for two weeks, and the limitation not to raise his right arm over his head for two weeks, or lift anything heavier than ten pounds.

Other than that, he’s back to normal activities, and even enjoying his two birthday celebrations, and telling people his most expensive birthday gift was a brand new pacemaker! And it actually was, since this took place three days before his birthday.

And in another two weeks he should be off restrictions and able to start practicing his new hobby of pickleball! He’s excited!

So right now, life is good. His pacemaker is doing what it should, his new heart valve is functioning perfectly, and his watchman which is designed to stop blood clots, is also working well. His blood sugar finally seems to be regulated, his oxygen levels are staying where they should be, and his glaucoma still seems to be under control. 

More to follow when necessary. But for now, everything is going well! And we are looking for it to stay that way!

Matters of the Heart, Part 36

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As I write this we are only a few days from another heart procedure for Ben. 

Last November we discovered there were only a few months of battery life on his pacemaker. You know, the device that’s keeping him alive.

And now on Thursday morning he will be undergoing a surgical procedure to remove one of his existing pacemakers and replace it with a brand new, and most likely updated, pacemaker with a brand new battery. His other one is non-functioning, but unable to be removed because of the way it was implanted ( and not by his current doctor).

The last time we went through this was around 5 years ago. We’d hoped the battery would last around 7 years or so, but obviously the pacemaker has been working a bit harder than we’d thought, so as of right now there’s probably only about a months’ worth of battery life on this existing one.

Therefore, the need for surgery to replace it just three days before his birthday. What a birthday present he’s getting!

I must say it’s a bit unnerving to think about how the device that’s keeping him alive is slowly losing its battery life. We all are used to seeing how quickly the battery life of our cell phones seems to go down, and we panic when we hit that 10% mark, because we just can’t live without our phones!

I would say that analogy has a different meaning when we think about a pacemaker implanted in the body of ourself or a loved one. There’s no way to hook that device up to a charger at night and receive a full or even half charge by morning.

Who knows, though? Maybe technology over the years will improve to the point that can actually be done.  

However, for now, we’re still waiting for Thursday, and another heart surgery, although this one promises to be a short outpatient procedure which should have him back home by noon.

So we continue our daily life until then.  And prayerfully, Thursday will just be another routine doctor appointment, only one that lasts a little longer than normal, and has the patient sleeping through most of it! 

Stay tuned! We’ll let you know!

Matters of the Heart, Part 35

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In our household, when one of us gets an early morning text, it’s either about an interesting news article, a funny story, a cute thing one of the grandkids did, or something we probably don’t want to know about.

In our case, it usually starts with “guess what!” And goes downhill from there. With usually something that we aren’t expecting and really don’t want to know.

And when you answer such a question with “what?”, you usually don’t really want to hear the answer, and it seems to take forever to get it anyway. Which was the case Monday morning just two days ago.

l didn’t expect to hear Ben reply with  “My pacemaker alarm went off!”

Which as far as we knew then, meant we had 30 days to get it replaced. So he texted his cardiologist, and then called the doctors’ offices and the pacemaker department. 

You can imagine how we both felt at that point. After all, the pacemaker is basically keeping him alive.

Fortunately we’ve since found out we have 90 days to get it replaced, which would be sometime in March. But does it make me feel better? I guess. But there’s still that bit of worry in the back of your mind…what if…?

Now of course, we were making a few jokes about it, because if you can’t find something to laugh about, you’ll end up crying or driving yourself crazy. 

One of my friends said all the hassle and stress of trying to get his blood sugar under control probably sped up the process. Hmmm, could be right on that one.

I said it was probably the stress of watching the Kansas City Chiefs game the night before! Which was quite stressful for us Chiefs fans! And will probably be equally as stressful when they play the Baltimore Ravens on Sunday.

But regardless of why the battery life turned out to be a little less than the estimated 5 years, we now know it will shortly be replaced with a brand new pacemaker rather than just a battery. I guess it’s like a trade in?

And what happens to the old one? Do we keep it as a souvenir? A paperweight? Does it get recycled?

But thinking about all of this…I have to say it really makes you stop and think about the true ramifications of all this. 

Ben needs the pacemaker to keep his heart in a normal rhythm. It also serves as a defibrillator. It helps keep his heart beating process which keeps him alive. 

As long as it’s working. Now we trust his doctor completely, and I know he’ll make sure it’s replaced in a timely manner.  But I can’t help but think about the what if’s. It’s natural, of course, especially with everything Ben has been through over the years, and particularly the last two months.

But he’s a survivor, and he’s proved that a number of times. And he’ll continue to do so.

But it was still a bit unnerving when the pacemaker alarm went off again on Tuesday. 

And again this morning as I was posting this blog.

It’s a countdown we don’t need to be reminded of.

Matters of the Heart-and Lungs, Part 34

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Yes, I thought I needed to change the title a bit, since RSV is mostly a lung problem, even though it affected Ben’s heart somewhat as well.

Actually I could’ve added other areas being affected as well.

After being released from the hospital after the bout with RSV, and as happy as we were to have him home, it still didn’t mean he was well. It just meant he didn’t need to be in the hospital anymore. There’s a difference.

Although in his mind he was able to go back to work on Monday, his body was nowhere near ready. He was still exhausted, and just not feeling at all like himself. So he made the decision to take the week off to get his strength back.

Which was a good decision.

And because of the insulin shots they had to give him in the hospital because of the steroids he was being given, we also decided to get a glucose monitor for him due to his still being on the steroids making his blood sugar shoot up way in excess of 400, which is certainly not good.

But we had quite a bit of trouble getting the machine to operate properly. Neither of us had ever used one, and the directions were really difficult to understand. The help line actually was a huge help, but he still had trouble getting enough blood to register on the strip. And he was still not starting to feel much better.

Monday he also found himself having “brain fog” which we were told was common with RSV. He couldn’t concentrate, or remember things I’d told him, which was really starting to scare us both. Fortunately it only lasted a day.

We saw his pulmonologist on Tuesday and he prescribed a rescue inhaler for him, which was fortunate. But the doctor was pleased overall about how he was coming along so far, and reminded Ben it takes awhile to get over this virus. That’s for sure!

But Ben still wasn’t able to figure out the glucose monitor until Thursday. And he was still exhausted every day by the afternoon and still coughing quite a bit, even with heavy duty cough syrup.

Finally on Thursday he was able to get the glucose monitor to work. Only to get a blood sugar reading of 435. Not good. He tried again and got 421. Definitely not good. He called his doctor and the after-hours nurse told him to go to the hospital.

Here we go again.

The ER was busy of course. They took vitals, bloodwork, and then we waited. And worried. When we were finally called back to a room, his blood sugar was still high, so the doctor ordered fluids to try to get it down, explaining the steroids in combination with water pills for the fluid around the heart drove the sugar up, but the fluids should help get it down. Well, that would be better than another insulin shot!

And after five hours in the ER we were finally sent home, after the fluids lowered the blood sugar to a safer level.

Friday he was feeling a bit better and found out his doctor had called in a new prescription for blood sugar medication. Things were looking up.

Until the pharmacy called Saturday to tell us the Rx was written for 2.5 mg and the medication only comes in 5 and 10 mg, and the doctor’s office wasn’t open until Monday. We got that problem solved by cutting the pills in half.

Then we found out the inhaler he uses, which of course had only enough puffs left for two days, was out of stock in every pharmacy in the area because the manufacturer was limiting quantities. And his insurance wasn’t allowing our pharmacy to fill it as a generic until the doctor rewrote the prescription. Mind you, this is for the man who just got out of the hospital with lung issues!

Good thing he has the rescue inhaler!

So today will be a test. And hopefully he’ll pass and be well on his way to recovery.

More to come when his pacemaker needs to be replaced, which hopefully will be several months down the road.

Until then, we’re believing he’s going to stay well for a long time!

Matters of the Heart, Part 33

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As I said previously, I’m sure you’ve all seen the ads about RSV. And a lot of us ignored it, even though we’re in the age category that RSV can really be dangerous. We’d talked about getting the vaccine, but hadn’t gotten around to it. We had time. Until we didn’t. 

But when he started having severe breathing problems to the point of him having to be transported to the hospital, we knew it was serious.

By the time medical help arrived to transport him, his lips were turning blue and so were his fingers. Fortunately we’re very close to the hospital and got there quickly, although to me it didn’t seem like it. He was put on oxygen and started slowly to get some of his color back but still having breathing problems.

The bottom line is, evidently the RSV triggered his asthma and other breathing issues. There was fluid in his lungs and around his heart most likely aggravated by the RSV as well. He was put on IV antibiotics, and steroids, given a breathing treatment and admitted to the hospital. 

The first two nights he slept maybe a total of four hours, between being constantly monitored by the nurses, taking his vital signs every 4 hours, and giving him breathing treatments as well as IV antibiotics, along with blood draws several times a day. The first day he said they took 16 vials. Now I find that hard to believe, but as sick as he was… There wasn’t much chance for him to sleep. Plus his almost constant coughing didn’t help, nor did the fluid in his lungs and around his heart.

He was continually on oxygen up until the next to last day he was in the hospital. 

They had to give him several insulin shots because the amount of steroids he was on to help calm down his lungs raised his sugar level too high.  

I’d like to share the post he made on his Facebook the first day he was in the hospital.  It really says it all:

“This respiratory infection is fairly new [actually it’s been around a long time but this new strain is different] and highly contagious, too. Deborah and I discussed several weeks ago that based on our age and my complicated health issues we needed to get our vaccination shots.

Well, you guessed it. I was exposed and diagnosed with RSV. I was taken to Sentara Princess Anne Hospital immediately via ambulance and admitted last Sunday, and here I remain trying to clear up this Infection for the past 5 days, and facing more time here till I’m well enough to go home. 

We had no idea that this RSV infection can trigger other existing health issues such as my current lung problems, and particularly certain heart problems. I’m in good hands with all the specialty doctors with all the testing and procedures to clear out this RSV Infection.

Please keep us in your prayers and thank you for all my family and friends for visiting.  Now go get your vaccination so you don’t wind up being hospitalized too.  Love you guys & Merry Christmas!”

After that posting, he had to have restricted visiting hours in the afternoon in order to take a nap to give him more rest. He wasn’t able to walk the halls to try and get his strength back because of the contagion risk, so all the exercise he could get was walking around his room, which wore him out. 

Finally after four days we were told if he could maintain an oxygen level of 90 or above without having continuous oxygen, and if he could walk for 6 minutes without having any,  he could be sent home on Friday.

Fortunately he did make it home Friday afternoon. Although the walking combined with the ten minute drive back home exhausted him, and he immediately fell asleep on the sofa.

He’s trying to rest as much as possible while at the same time trying to get his strength back. It’s a slow process and even just taking a shower wore him out. Going out for a quick fast food lunch (at his request) resulted in his having to take a 3 hour nap when we got back home.

It’s obviously going to take several days, or more, for him to be able to even think about going back to work.

Please, as I’ve said before, whether you have underlying health issues or not, if you’re over 60, get your RSV vaccination, and if you start having any breathing issues get help immediately. Trying to be “brave” and saying you’re ok isn’t the right thing to do in this case. This stuff is nothing to fool around with. And for him, it’s also aggravated his heart issues.

Hopefully with rest and the medication he was sent home with we can soon resume our normal Christmas activities, although they may be a somewhat toned down version this year. We’ll just have to see.

At least he’s out of the hospital and on the road to recovery from this stuff!

Matters of the Heart, Part 32

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I didn’t expect to write a Part 32, but sometimes things happen out of our control. Unexpected things. But then again, we don’t plan on serious diseases to rear their ugly heads in our life. 

They just happen. And usually very quickly.

I’m sure you’ve all seen the ads about RSV. And a lot of us ignored them, even though we’re in the age category that RSV can really be dangerous. We’d talked about getting the vaccine, but hadn’t gotten around to it. We had time. Until we didn’t. Three nights ago night Ben developed almost uncontrollable chills, and shaking and wheezing. I wanted him to go to urgent care, but he said he’d go Sunday morning. He actually did call his primary doctor and spoke to a nurse who told him if the symptoms got worse, he did need to go to the hospital, but since he was going to urgent care the next morning he should be OK unless things got worse. 

So the next morning we went to an urgent care. They tested him for flu, Covid and RSV. The results came back surprisingly not Covid or flu, but he tested positive for RSV. But the PA that we saw said, “Don’t worry about it too much. We’ll give you cough medicine, and just take it easy and rest for a couple of days and you should be fine.” That didn’t sound right to us, but we figured she should know, right? 

By noon he was having a bit of trouble breathing, and was coughing more, and starting to get chilled again. He tried to get comfortable, but by late afternoon he was miserable. He went upstairs and I kept checking on him, and by 5:30 he told me he was having trouble breathing and to call the ambulance to take him to the hospital. And for those of you who know him well, know he doesn’t say that lightly.

Of course I was a wreck, knowing his medical history of heart and lung issues. By the time medical help arrived his lips were turning blue and so were his fingers. They immediately started oxygen on him. Fortunately we’re very close to the hospital and got there quickly, although to me it didn’t seem like it. With the oxygen he started slowly to get some of his color back, but was still having breathing problems.

The bottom line is, evidently the RSV triggered his asthma and other breathing issues. There was fluid in his lungs and around his heart, most likely aggravated by the RSV as well. He was put on IV antibiotics, and steroids, given a breathing treatment and admitted to the hospital where he will most likely be for 3-5 days. His breathing is still labored, but at least he’s where he will be monitored and get better.

He didn’t sleep well that night, because lying down made his lungs fill with more fluid. As I write this he’s still having breathing treatments every four hours. They’ve had to give him three insulin shots because the steroids raised his blood sugar level too high.  They’ve done a number of cardiac tests including an echocardiogram, as well as taken a lot of vials of blood for further testing. As the doctors said, there’s a lot going on with him right now, and they have to figure out where to best start treatment. And I’m sure they will.

Please, whether you have underlying health issues or not, if you’re over 60, get your RSV vaccination, and if you start having any breathing issues get help immediately. If you have questions from a medical provider because you aren’t sure about their diagnosis, ask them! This stuff is nothing to fool around with. And for him, it’s also evidently aggravated his heart issues.

We’ll keep you updated in “Matters of the Heart, Part 33”. And be sure to read some of the other posts, which tell the entire story of his ongoing heart and lung issues for the last almost forty years. It’s hard to believe what we’ve gone through in all these years!

Matters of the Heart, Part 31

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Just when we thought we were clear and weren’t going to have anything else happen relating to Ben’s heart for a while, life comes up with something else. 

Guess why that’s why it’s called “life”. 

Because you never know what’s next.

You may not know this, but every person who has a pacemaker has a routine yearly checkup on the pacemaker itself. The technician has a device that is put on top of the area where the pacemaker is located and it gives out readings on how the pacemaker is functioning, checking that the settings are still correct, and reviewing its remaining battery life.

Yes, you may remember that Ben has two of them, because when the original one was put in, for some reason it was implanted in such a way that tissue had grown over it so that it couldn’t be replaced. Therefore, when he needed a new one with a defibrillator it had to be implanted on the right side instead of the left, which is the normal location for pacemakers.

Should we have expected anything less?

After two pacemakers, we figured now he was done for a while. The “bionic man” could take a break. For at least 7 years or so until he needed a new battery in this newest one. Well, this will be about five years since the new one was put in.

We never really thought about that, though, and what it entailed.

Until several weeks ago when he had his annual pacemaker checkup.

Everything checked out fine. Until he was told he had about 15 months of battery life left on it.

Uhhh…what?

Then what?

And how would we know when it needed replacing? Since the technician told him the pacemaker was keeping him alive, that was a fairly important question.

“Let me show you how you’ll know,” she said. And she hit a button on the machine and a beeping noise went off. And it was definitely audible.

“That’s what will happen about 4 months before we need to replace the battery. It’ll do that for about two minutes. And it’ll keep doing it every day until you call our office and come in for us to turn it off. And you’ll make the appointment for the replacement then.”

When I told the story to a friend of ours, he said he could just picture Ben being at a client’s business when it went off and saying, “Excuse me while I take this call” as his chest is beeping! And knowing Ben, he may do just that.

The technician also demonstrated how important it is for the pacemaker to be in good shape by turning it down just for a few seconds. Ben said his whole body suddenly felt limp and exhausted. It was a weird feeling, and one he doesn’t want to experience again.

We assumed he’d just have a simple battery change. But we didn’t know how that would work because we never really thought about it. But we discovered it wouldn’t just be a simple battery change. It was a total pacemaker replacement! And we remembered that last time his doctor tried to replace the one he had, which ended up not being possible because of the way it had been installed, so he ended up with a second device on his right side. 

Well, since the same doctor would be doing the replacement, we can only assume he did it so that it’ll be simple to change out.

I guess we’ll find out in about twelve months though. 

So stay tuned, because there’s probably going to be more to come before this next procedure.

Matters of the Heart, Part 30

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As I said in Part 29, I didn’t expect to have a Part 29 of this series, let alone a Part 30. But here we are.

Looking back, Ben and I have been dealing with his heart issues for 36 years. We’ve been married for 37 years. What does that tell you?

Deciding on having the Watchman procedure done was easier than the steps involved to actually get the procedure itself approved. And it certainly wasn’t his doctor’s fault.

There were several tests he had to have first, including a new EKG, and echocardiogram. Those were simple and of course showed he was a good candidate for the procedure. 

Then he needed a second opinion from another cardiologist in his group. Time was ticking until the end of the year, and we were getting a bit antsy. 

But that appointment was finally scheduled and the doctor confirmed that with his history he was definitely a good candidate for the procedure 

Now to get it approved and scheduled before the end of the year. With Thanksgiving and Christmas affecting schedules as well.

But our doctor assured us we’d get it done by the end of the year, and we’d get a call from the office as soon as it could be scheduled.

We just didn’t realize we’d get the call just five days before the surgery date, with two of those days being a weekend. It was scheduled for TWO DAYS before Thanksgiving! And we found out on Thursday which was the Thursday before Thanksgiving Day!

He’d be the first surgery of the day, which meant we had to be at the hospital at 5:30. In the morning! And I am NOT a morning person, which meant we’d have to get up at 4 am to get ready and be there that early. Ugh.

Well, we’d take what was available. Which meant frantically rearranging both his and my work schedules, as well as finishing putting up all the Christmas decorations! Fortunately we’d started early, and if you followed the stories about our 8+ Christmas trees, plus the Christmas ledge in our two story foyer, well you can imagine how much we needed to get done since we were having Thanksgiving dinner at our house.

I finished all the big trees, and he finished the ledge. Boxes for the decorations were still sitting around which needed to be put away, but I figured our daughter and son-in-law could do that since Ben wouldn’t be able to lift anything for several days after the procedure. Talk about rushing around…!

But plans don’t always go as planned, shall we say. The night before his surgery he got a call from his doctor around 6:30 PM. From his doctor’s personal cell phone. (Yes, we have that number.) That’s a call you don’t ignore.

And you guessed it. Surgery was postponed. The insurance company still hadn’t approved it. We weren’t happy at all. However, as Ben told the doctor, “my wife will be happy she doesn’t have to get up at 4:00 in the morning.” He said the doctor laughed himself silly over that comment! After apologizing profusely, the docotr promised they would reschedule as soon as they got the word from the insurance company, and it would definitely be before the end of the year.

Things did work out for the best, though, because not only did I not have to get up before the crack of dawn, we were able to put all the decoration boxes away, and I didn’t have to beg for extra help from our daughter to get Thanksgiving dinner ready. And Ben was able to play with the grandkids on Thanksgiving without being concerned about his incisions. 

But how was this going to affect our Christmas plans? Would we have to scramble to change other things?

Fortunately, the next week we got a call rescheduling the procedure, for the following week. Our doctor must’ve remembered Ben’s comment about early mornings, though, because the new surgery time was 1:00 in the afternoon and we didn’t have to be at the hospital until 11:00 am. That worked really well, at least for me.

Then we found out the insurance company had actually approved the procedure at 4:30 pm the day before the original surgery date. They just didn’t notify the doctors in time.

Go figure. But it did all work out for the best, since Ben had a week’s vacation already scheduled for the following week after the surgery to make recuperation easier.

Surgery went perfectly. In fact our doctor told him he’d done hundreds of these procedures and usually he had to do a little maneuvering to get the device precisely where it needed to be, but this one went in perfectly the first time! Thank goodness!

Ben will now be on blood thinners for 45 days after the surgery while the tissue grows over the device to seal it in. He will then have a CT scan to be sure everything is going well, which we’re sure it will. Then he will be on a different blood thinner plus baby aspirin until 180 days after the procedure and then no more blood thinners; just a daily baby aspirin.

Naturally we’re all pleased with the results, and so glad he made the decision to do it.

What’s ahead in this saga now? Hopefully only 6 month follow up visits that will show everything is still doing well.

After three heart valve replacements, two pacemakers, and now the Watchman, I think he’s had enough.

We are so thankful for all the great doctors and nurses he’s been fortunate enough to have over the years, and I do have to say that the last two cardiologists that have been caring for him have been the absolute best!

If any of you reading this have any heart issues, or have loved ones with these issues, please be encouraged. It’s not always as bad as it seems. Yes, it’s scary, but look what we’ve been though over the years. And if you have questions please feel free to message me with questions.

And Ben is still going strong after all of this!

Matters of the Heart, Part 29

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I really didn’t expect to be writing another installment of this series. After all there’ve been 28 installments so far, the last one being in September of 2019. A little more than two years ago.

Certainly enough stories, right?

Well, you would think so.

But after the last heart valve procedure, which is still doing very well, thank goodness, both of Ben’s doctors determined that he was a very good candidate for a device called the Watchman. This device is implanted in an area of the heart called the left atrial appendage. It permanently closes off that area of the heart in which blood clots can form for patients like Ben who have a history of atrial fibrillation or AFib (which can lead to a stroke).

AFib patients, even those with pacemakers, like Ben, are on blood thinners daily to prevent blood clots from forming. This particular device prevents such clots from forming, thus eliminating the need for patients to take blood thinners daily, which in Ben’s case have also caused a number of blood vessel ruptures in his left eye, which has had numerous recurrences of iritis, which is another story altogher.

Naturally we had a lot of discussions on this procedure, as it’s only been around a little over ten years, and we’d never heard of it. But we did a lot of reading about it, and after several talks with his doctor, we decided that it was the right thing for him to do. Particularly since it was a non-invasive procedure in which the device was inserted into his heart through an artery in the groin, much like his last heart valve replacement. An overnight stay would be required, which was no big deal.

There were several tests that had to be done prior to getting final approval by the cardiology team (not to mention his health insurance, but that’s another matter entirely).

But before we could start the process, Covid hit, and although we’ve been extremely fortunate and neither of us or his medical professionals have contracted it, all elective surgeries were put on hold until further notice.

Of course the Watchman is an elective procedure. So we were on hold. For quite awhile. About 18 months or more.

We kept checking with the hospital and his doctors and finally the restrictions on elective surgeries were lifted. We made an appointment as soon as we could with his doctor to discuss the next steps.

When we were finally able to get the appointment  with his doctor we all quickly decided this was the best way for him to go, and proceeded to schedule the testing involved to be able to apply for approval not only within the cardiology group, but also with his insurance company for their approval.

Nothing is ever simple, though. And we also needed to do the surgery by the end of 2021 to avoid a huge out of pocket expense, since he’d already met his deductible for that year. And it was already early in October 2021.

So the process began…but not without a few complications along the way. Of course.

Read the next installment of “Matters of the Heart, Part 30″, to be published on January 24.

Matters of the Heart, Part 28

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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

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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

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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.