It’s 2 am, and I lie in bed listening to the swooshing sounds of my husband’s oxygen machine as it delivers the air that’s helping him sleep. After being ignored or told by several cardiologists that he doesn’t need oxygen for sleeping, I recently went ahead and bought one for him online, and now, after months of struggling to sleep, he sleeps through the night peacefully. Oxygen came to my mind to help him sleep after he recently was in the hospital for pacemaker replacement surgery.

You see, within in the last 10 years Roger has been the victim of two medical mishaps that have almost taken his life. In 2005, at the age of 69, a doctor attempted to implant a stent in an artery, and the procedure went terribly wrong; the artery was poked, causing a heart attack, leaving him with one-third of his heart dead.

While in the hospital and in a coma, a pacemaker was implanted as a precautionary measure to save his life. I knew nothing about pacemakers, no one explained them, and we quickly learned once he got home and started to recuperate.

Through the whole ordeal, both Roger and I have been indoctrinated in the language of the medical community, learning words like ejection fraction, atrial fibrillation, congestive heart failure, and functions and devices like heart rate, pacemaker, defibrillator, etc.

He was fine before this catastrophe, tending to business and life as normal. We were subsequently told this stent should never have been attempted. It was also verified by testing that yes this stent attempt did cause the heart attack.

We learned that after all this, because of the lack of heart function, he was left with atrial fibrillation, acidosis, and congestive heart failure. One of the noticeable side effects when he was able to come home after weeks in the hospital was that the rhythm of his heart was horribly out of control. He would lose his breath constantly, struggling for air. He could feel and hear the pounding of his heart, going high and then low. This daily occurrence was very much like his breath during sleep. I would listen as he took huge breaths and then they would diminish to nothing, to silence, as if he weren’t breathing at all, and I would wait cautiously for the sound to start again to verify he was still alive. I listened to his labored breathing while he slept, not knowing the reason behind it.

Very soon I was online searching for all these symptoms and information about atrial fibrillation; I read about pacemakers and more. 100,000 devices are implanted yearly. I found that whenever a pacemaker is implanted, it is common, and recommended, that the heart rate in the device be set at 70 beats per minute. Roger’s normal heart rate is in the low fifties.

Immediately we arranged a visit to the cardiologist. We explained what we’d researched, and it was correct; his pacemaker was set at 70. The doctor said he would lower it to 60. That wasn’t good enough; we couldn’t understand why he’d want to only go that low, but I said no, set it at 50. He did. No problem. From then on Roger’s heart was at ease, staying between 52 and 55, feeling much better. No more A-fib.

It’s a long and difficult story, but after almost a month in the hospital, a trip to Bangkok for stem cell therapy, a year of recuperation, and a strong nutritional program, he has survived these ten years feeling probably better than most men in their seventies. No more labored breathing.

He’s nevertheless had to live with what he was left with. As all our neighbors hire help to mow the lawn and trim the bushes, he’s been his own landscaper. He’s enjoyed washing his car, and even being sexually active. In essence, he’s felt younger than his years, mostly because of his young spirit and lust for life.

It took about a year for Roger to finally feel as normal as he could with two-thirds of a heart. And for 10 years he coped miraculously.

Fast forward to 2015. We made the semi-yearly trip to Los Angeles for his major checkup with his cardiologist: EKG, echo, pacemaker check, all the pertinent blood tests. It was routine, and it came through without problems, just like previous years; pretty much normal. The pacemaker manufacturer tech as always was the one who reviewed and checked the device. “Yes, it’s working fine; mostly since you never use it because you’re in rhythm. You’ve been in rhythm for 10 years.” Every year they would report this. Roger would always ask, “So do I need to replace it? I’ve had it for 10 years.” Their response would be, “No, it looks like you could have another year left on this. By it not being used, the battery doesn’t get used up, and so lasts longer.” They were the experts; no need to question anything.

About two weeks later, Roger began feeling a little strange. His breathing became a little strained; shortness of breath as they call it. It wasn’t normal for him, after all these years.

We scheduled another appointment with the cardiologist, and explained what was going on. His only response was that it seems just normal progression of his congestive heart failure, along with atrial flutter starting, a mild beginning of atrial fibrillation. After all, he is 79. He recommended an added drug. Getting back home and starting the drug, it just made him feel worse, also made his breathing more labored, and so he stopped taking it.

As days went by, the breathing got more and more out of control; he was struggling. He couldn’t walk far. He struggled to take a shower. And at night, he couldn’t sleep. He would try every angle, every position; he would try the couch, the recliner, sitting straight up. He was literally exhausted, not to mention scared. He could no longer do the things he was used to doing. Roger’s mind was consumed with the idea that his heart was failing like the doctor had indicated, and would only continue to get worse. This came on so fast, and was puzzling to say the least. He was devastated by thoughts of not being around much longer.

Months of this, and then one day he finally noticed, “I think there is something wrong with either my pacemaker or my heart monitor; my pulse doesn’t seem to go below 65.” He was on to a remarkable discovery. He’d been monitoring his heart rate like always, and never put two and two together; assuming that because his congestive heart failure was acting up, his heart rate would of course be irregular.

I quickly made an appointment for checking his pacemaker locally. The pacemaker tech started the monitoring, and she looked over at Roger, and said with a surprised look on her face, “you need to replace your pacemaker immediately.” That was it; the pacemaker had finally given out. But why is this causing such turmoil with Roger’s heart? If it stops working, wouldn’t it just stop pacing the heart all together? Wouldn’t the monitor just indicate the correct heart rate, and not be bouncing the rate back up?

No, and here was a new lesson to be learned. When pacemakers stop working, they don’t really stop working. We also learned that not all brands of pacemakers work the same.

With this particular pacemaker there is only one lead to one chamber that is programmed to continue pacing at 65 when the battery gets low. 65. At least ten points above where Roger’s heart wants to be. It was being thrashed as it was trying to go to 52, being stopped at 65 every time. For several months, his 79-year-old heart was being overworked for no healthy reason. Roger couldn’t sleep at night because his heart could not relax as it should; as it wanted. He was exhausted. If he hadn’t noticed the heart rate not going below 65, he could have died after more months of this. The doctor didn’t think to recheck the pacemaker, since it had been checked just weeks before; yet his heart rate at that time did register at 65.

After checking around locally for a doctor to replace the pacemaker, and none sensing the urgency to stop the madness, he contacted a doctor out of state, securing an appointment in just 4 days, as opposed to weeks that the other doctors were only willing to accommodate.

Because his heart doesn’t function like the average person’s in the first place, this pacemaker malfunction put a huge burden on the status of his heart.

He checked in to the Utah Medical Center, and was scheduled to have his pacemaker replaced the next day. In the morning, it hit me that he actually slept through the night rather comfortably. In assessing the situation, the only difference was that he was breathing through the night with the plastic tube to his nose attached to the oxygen concentrator by the bed.

The surgery went well and quickly, and he was soon okayed to check out. Roger and I discussed the sleep and oxygen connection, and he was ready to ask the doctors about getting it for home use.

Surprising to us, they denied his request, and more or less negated the whole idea that he even needed it. They had him walk the halls as they monitored his oxygen level. It was fine. But none thought to test if there was a difference lying down, and, as novices, we didn’t either at the time. We soon found there was much bureaucracy for some reason connected to doctors being able to prescribe oxygen, as if it were a dangerous drug.

Finally at home, Roger still had trouble breathing, and not getting a restful night’s sleep. I finally took it upon myself to order an oxygen concentrator online, and disregard the doctors and their red tape rules.

Yes, the oxygen does wonders for his sleep. But nonetheless, his heart has been weakened by this whole unfortunate bout with the pacemaker not working properly. Month after month the 79-year-old heart was zapped and thrashed with the artificial electrical impulses. The only persons void of such a thing happening with this type of pacemaker would be those whose normal heart rate is above 65 beats per minute.

Having the pacemaker malfunction for so long created the atrial fibrillation. Only one chamber was being paced at an unreasonable rate. For the 10 years following the first bout of heart damage, he had been in perfect rhythm. Having A-fib puts more work and strain on it, weakening the muscle. His ejection fraction has gone from around 25%, to now a critical 10–15%. A healthy person’s is above 50%.

Before anyone having a pacemaker implanted, they should definitely know or find out what their normal pulse rate is, and, better yet, what it has been throughout most of their life.

“I’m no good for anything anymore,” is a common outcry lately from Roger. Right before this medical setback, we were so happy to discuss how he seemed so much younger than his years, outdoing most men his age. He still has the mind of a Warren Buffet, and would have the gusto of any forty year old if it weren’t for these unfortunate happenings. Now it’s evident that the older the heart muscle, the more difficult it is to get back the strength that was lost.

It’s most important to know what your normal heart rate is before ever having a device implanted. Deaths of those with implanted pacemakers are not generally attributed to pacemaker malfunction, but in so many cases, the cause must be nebulous considering the fact that cases like this could go undetected, and not registered as ‘related to malfunction’.

It makes sense to replace a pacemaker before it malfunctions,

but then, there is insurance clearance for replacing pacemakers; some will deny replacement unless the device is definitely in need of replacement…meaning when they stop working properly. But it’s most important to have the rate set closely to a person’s normal rate when one is implanted for when and if this may occur. And, ask for information about your device.

Subsequently, Roger has seen a pulmonologist to help explain his breathing issues, and remarkably this doctor advocates oxygen for heart patients, especially those in Roger’s condition. It makes sense since the heart and lungs work together, and are so dependent on each other. A common sleep test did show his oxygen level dipped below normal lying down. At least he sleeps through the night with it. And, as the pulmonologist explains, oxygen definitely helps relax the heart.

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