The Linq monitor is a small loop recorder, about the size of a small person’s pinky finger.

Recently I received an email from a reader (in the Netherlands, believe it or not) asking me for more details about the Linq heart monitor process.

I had the Linq heart monitor inside my chest, near my heart, for three years. The Linq gave my electrophysiologist more information about the arrythmias I was experiencing.

This diagnosis of a serious heart arrhythmia can scare the living daylights out of a person. I want anyone who reads this to know that I will answer any questions you have about the experience.  Happy to! I remember when I was first diagnosed with non-sustained ventricular tachycardia, I had a billion questions. Yet, doctors often do not share with you half as much as you would like for them to.

The Linq monitor reads the rhythm of your heart. It is not equipped to correct or jump start your heart like a pacemaker or defibrillator.

Instead, the Linq collects data and sends that data to a physician. For more information about the Linq, here is their website.

I cannot talk as much to the medical side of it. Though rest assured, after my diagnosis, I read two different books and countless internet articles on the topic. Sometimes, just for the fun of freaking myself out, I will go online and Google research papers for the latest information on NSVT.  Why am I this way? Ha! Such misery I bring to myself on purpose! But isn’t it best to know how to take care of yourself with any condition?

Each doctor I saw had a different opinion of how serious my problem is.

I had to see many different cardiologists and electrophysiologists because we moved from California to Georgia, then to Virginia, and finally to Maryland. We moved three times in the three years I had this monitor embedded in my chest.

First, and most importantly, please know that I would not be afraid to get a Linq monitor for a second.

I just had mine removed after three years this past October because my battery died. In 2019, I went a whole year with only 30 off-beats. That was great news. So they decided I did not need to be monitored anymore.

The Linq implantation and removal procedures were so easy.

Where do they put the monitor?

My Linq monitor was on the chest but above the breasts. It was to the left, since the heart is to the left slightly. It’s pretty close to the breastbone. The incision is only 1 centimeter or so. It was almost invisible after two years, but now that it has been reopened it is a little ugly again. It is tiny and low enough that it only shows if I’m wearing a swimsuit. 

For the procedure, I was wide awake, and it was not scary at all. They sedate you for the procedure, but I asked not to be. I hate that drugged feeling, so I preferred to rely on local anesthesia since the procedure is quick.

On the day of the first procedure, I was extremely nervous because I didn’t know what was coming. Looking back, I have had foot procedures that were much more painful. The chest seems less sensitive somehow. This was not bad at all.

Afterwards, yes, I could feel the Linq in there, and it was barely visible for the entire three years.

The surgical site was not painful past the first two weeks of soreness. I had what I thought were way more heart arrhythmias after they put it in. However, I think it may have been the sensation of the Linq embedding itself into me rather than an actual heart problem. Over time, I could feel the Linq less and less, but still I could feel it. It didn’t hurt. It was like how you feel glasses on your face or shoes on your feet, sort of. Now it is out, but sometimes I think I still feel it, and I have to remind myself that it’s gone. It bothered me more in the beginning, so don’t despair. You will get used to it.

All you could see was a little bump, where the top of it was near my incision. It looked like a tiny tumor. (I know, ugh). For a while, the doctors I saw planned to replace the old Linq when the battery ran out with a new one because I had a long arrhythmia run that they didn’t like back in 2018. That was a thirteen beat run of ventricular tachycardia. But I did so well the next year they decided against it.

Someone asked me if my bra or shirt rubbed up against the incision and bothered me. I can assure you it was completely unaffected by my bra because the Linq sits above the breasts.

The Linq Monitor is Wi-fi equipped. It comes with a little box you keep by your bed.

The box sends the information back to your doctor at midnight each night. It was not a hassle. I had three different doctors during the three years because we are a military family who moved three times. My Linq monitor was set to not even record my arrhythmias unless they went over 16 beats. The only reason my thirteen beat run showed up was because I used the clicky-stick they give you with the monitor. You hold it on your chest and click it when you feel symptoms. Through the entire three years, I only used the symptom stick a handful of times.

The reason my monitor was set to only record long runs was that my doctor decided that was the point at which they would have to do something to fix the problem.

Otherwise, I do not have NSVT often. I was on medication and not considered to be a sudden death risk. We knew I do not have it too often because during a week long monitor, I did not record any NSVT at all. On the twenty-four hour Holter monitor, I had a six-beat run of NSVT.

With two of my doctors, they rarely looked at the reports and never reported back to me what any of the reports said unless I had an appointment. However, I had a more involved cardiology office in Georgia. They would actually call me each month and read me my report. That was so nice!

When they discovered a long run of v-tach, they immediately set up an appointment with the electrophysiologist for me, getting ready to look into an ablation.

However, I moved to D.C. before I had time to follow through with that appointment. It is very hard to have good continuity of care as a military family. The D.C. doctors decided to do more testing instead. In fact, they said I would need a new cardiac MRI every few years.

Once all the testing was done, and my heart was behaving quite nicely, the D.C. doctors decided to just leave me on my medicine and not do an ablation or anything.

Processing all the feelings…

When the doctor removed my Linq, I was a little annoyed at his lack of knowledge of my history. To be fair, I routinely saw his nurse practitioner, who I like and trust. I met the actual electrophysiologist once and explained my story to him, but he did not seem to remember. After my removal procedure, he said, “I’m sure this will never happen again, and you will be fine.”

Say what? Oh man, this guy. Obviously details were lost with the second hand information. Even when I read my chart I could see he did not know much about my history. He seemed to think I came straight from California to the D.C. area. Did he have any knowledge of my problems in 2018? I am not sure. Heart arrhythmias are not a thing that you have several times and then never have again. I had several documented cases of NSVT, in the span of three years, so I am under no delusions that it will “never happen again.”

I have met several women who have been through this before me.

They had the exact same problem I had. Their symptoms also would disappear a year at a time and then reappear. With two of the three women I have talked to, they eventually had a long run, which was a near death experience. They passed out in their home, and then had the ablation to kill off the errant cells causing the arrhythmia. When my doctor told me I would not have any more arrhythmias, I told him about the stories I had heard. I calmly but firmly told him that I knew it would happen again, but that I am okay. He did not argue with me.

That left me feeling sort of alone. It can seem lonely as a patient when you feel like you cannot find a doctor who listens and helps. I have learned not to put too much hope in a doctor. They are just practicing medicine. I let them see what they can do to help, but I also do my own research and plenty of prayer. The Lord knows. With me moving every one to three years, I do not have any doctors who actually know me. How many times can I re-explain all my health issues? Bleh. I grew tired of it. These days I do not bother with a physician unless I really have to.

Having the Linq monitor removed felt like this major milestone.

I knew I should be ecstatic to be free of it, to know that the doctors deemed me “okay.” Yet, I felt a little sad. Without that monitor, I had to truly trust that I was fine. Now there are no alerts sent out if I have an unusually long run of NSVT.

I think I was also feeling down because of other life circumstances, though. Everything I do has to be planned around my husband’s work schedule and my children’s school schedules. It was so impossible to find a day that the doctors and Alan could agree on. When I finally scheduled it, the boys were out of school.

We had to bring our two youngest sons to the hospital with us. Alan managed them and took them out to eat, so it all went really well, thankfully. When it was all over, the doctor gave me my final talk. Then he said, “I am going to go out and get your family and let them come back to see you.”

“Great!” I smiled. I looked forward to being encouraged by my family.

Then I was disappointed when the doctor came back in and said, “I talked to them and told them you’re doing great and about ready to go.”

Doc looked at me funny. I think he was not sure how to tell me that my husband not only told him he was not going to come back and see me.

I could tell from just his look that they were not coming. It might sound ridiculous that this was a let down. But after you have opted to stay awake through a surgery where they open up your chest, dig around in there, pull something out, sew you back up, and then get details of your history wrong while they talk to you, you feel discouraged and you just want your loved ones to come and stand beside you. At least, that is how I felt.

So here is my last surgery tip:

Talk about who is going to come back to your recovery room in advance. Let them know if you want them to come see you or not. Alan thought keeping the kids in the waiting room was what I would want to give me some space. I have been on stay-at-home Mom duty for fourteen years, and doctor appointments are like a big day out for me. However, I felt sad that they didn’t come. Talking about expectations beforehand is a good idea. The doctor probably thought we were separated or something.

The good news

The good news is that so long as I keep taking my beta blockers everyday, I truly am just fine. My heart is also sometimes borderline low functioning, not bad, just sometimes my heart doesn’t pump quite as efficiently as it should. Other times it is normal. It depends on how well I have been taking care of myself. I do still get more tired than the other members of my household.

I am so grateful that the Linq monitor findings helped the doctors to come to the conclusion that I do not need any kind of surgery and am not at risk for sudden death. This is wonderful news.

I hope this answers all your questions about what it’s like as a Linq patient.

If it would be of help to me, I would gladly have another Linq monitor. It was not a problem at all. Feel free to ask any questions you have. It is frustrating how little info they put out. If you would like to hear the whole story of my Linq monitor insertion procedure, you can read that here.

The post What it was Like to Wear a Linq Heart Monitor for Three Years appeared first on Stories of Our Boys.

The day before yesterday I made a trip to D.C. to see my cardiology team. For more back story on my heart issues, you can read this page. It’s a diagnosis I’ve had for 3 years now.

At the beginning, my heart was having all sorts of symptoms, beating hard, beating fast, feeling exhausted, etc. They ran tests, they found a run of NSVT. NSVT stands for non-sustained ventricular tachycardia.

I tried a couple of different arrhythmic drugs, and I couldn’t tolerate them. What worked best was sticking with Propanolol, a common beta blocker that keeps my heart beating slow and steady, slow as in normal. And as we all know from the tortoise, slow and steady is exactly what we want.

A linq monitor was inserted into my chest to keep an eye on my condition. If an episode of NSVT went to long or happened too often, we would look at doing an ablation.

Most of the time I was fine. I took my medicine everyday, and I was fine. This beta blocker changed my life. I absolutely love it. I used to get these body-shaking adrenaline rushes when I would get stressed, and it has never happened again since I began Propanolol.

Last year, as I was working on our move from Georgia, I had a longer episode, and as a result of that I had to go through all the testing again. Ablation was back on the table.

First, I had an MRI (my 2nd cardiac MRI). It showed slightly low heart functioning on one side, so then I had to get an echocardiogram to get another look at it.

For the echo, I knew I needed to pass that with flying colors to stay out of surgery. I drank lots of water, abstained from caffeine, and took my heart medicine before I went in there for the echo. Even better, the echocardiogram technician turned out to be a very talkative middle-aged lady who put me completely at ease, which always makes my heart behave itself. Stress is surprisingly powerful.

My echo came back looking beautiful. I passed with flying colors. Everyone was satisfied.

The winter and spring passed with no incidents. Then lately I noticed that my monitor, which I keep beside my bed, has stopped communicating with my implant. Normally, the implant downloads its info to the monitor base each evening, and the base sends the info to the computer at my cardiology office.

Well, it hasn’t been working since July 4th. Hmmm. So I emailed my nurse practitioner, and she said they were tracking that my battery was depleted. Linq monitors only last 3 years. I got mine in May of 2016, so this is right on time.

They set me up an appointment, and I went down there.

First, I go to the pacemaker clinic and have my heart monitor read by their machines. All looked good. I’ve only had 30 errant beats this year.

They left the whole decision of whether or not to put in a new Linq monitor up to me. I just volleyed the decision back to them. I am at peace if they are. I’ve gone a year before having trouble again before, so I’m not kidding myself. It will come back, but so long as it only comes back in short waves, and doesn’t affect my quality of life, I’m okay.

I said, “Well, what do y’all think? If you think I should put a new one in, I’m fine. If you think it’s unnecessary, I’m okay with not doing it too.”

The NP and the electrophysiologist talked it over, and they decided to simply remove the device and not put in a new one.

As for my medicine, I will probably ALWAYS take Propanolol. It has helped me a ton, so it stays.

I’m way too busy taking care of 4 boys all day to do this over the summer, and we still have a month of summer vacation left. Alan is too busy for me to do it in September, so we will take it out in October.

It’s good news, and from now on I only have to go to the cardiologist when I’m having symptoms. All good news, and yet it still feels weird to me.

Am I happy to lose the wifi-equipped device that has been with me 3 years now? Yes, but at the same time I pretty much feel sad about all of life right now. Sad that I’m out of my comfort zone, AGAIN. Sad that Alan isn’t home much. Sad that most of my children don’t have any friends here yet. Sad that my family is so far away, with no end in sight for that. Sad.

I’m not the depressed, can’t get out of bed, level of sad. It’s just sort of a quietly underlying subconscious sad, a wistful feeling. Maybe that’s a better way to put it. It’s not that I’m sad. It’s more like I’m wistful and contemplative. Change has happened, and I’m not done adjusting to it.

I think once the procedure is over and done, I’ll feel pretty excited and more like a healthy person again though.

You gotta take the hills with the valleys in life. This move is just another hill to climb. Will do. We’ll climb that hill one step at a time.

⁵ A wise man will hear, and will increase learning; and a man of understanding shall attain unto wise counsels:
⁶ To understand a proverb, and the interpretation; the words of the wise, and their dark sayings.
⁷ The fear of the Lord is the beginning of knowledge: but fools despise wisdom and instruction.
⁸ My son, hear the instruction of thy father, and forsake not the law of thy mother:
⁹ For they shall be an ornament of grace unto thy head, and chains about thy neck.

Proverbs 1:5-9

The post NSVT Update: A Turn for the Better appeared first on Stories of Our Boys.

It is done. I am Wi-fi equipped. No, literally. My chest has wi-fi. Today Dr. Grogin implanted a Linq heart monitor into my chest.

That’s right. I got to go through just one more heart patient embarrassment.

Let me set the scene for you.

#1. About 5 nurses and 1 doctor in the room

#2. I was naked down to my waist.

#3. They had to cover my face with a cloth because the procedure was just below my neck, and the area had to be sterile.

#4. I was totally in my right mind. Only local anesthesia, because that’s how I asked to do it.

I know you think that as I lay there, blindfolded and half-naked, that I was thinking, “Oh, I am so going to blog about this.”

But not really. I was actually thinking things like:

“This cloth covering my face is smothering me. I should have let them sedate me.”

and

“Oh, I’m freezing. When will this be over?”

and

“I am so naked. I am so naked.”

As you may or may not know, I’ve been having strange heart-pounding and roller-coaster-like heart cartwheels since January. Through much testing, we found out that it’s ventricular tachycardia episodes, but otherwise my heart is structurally fine.

At first, my favorite doctor, PA Carlquist, thought that I would need an ablation, but then Dr. Grogin decided against it. Instead, he wanted to implant a Linq heart monitor into my chest. This thing goes right under my skin and can last up to three years. This should give them more information on what my heart is doing.

I joke that I have Wi-Fi because the thing communicates with a little data base I keep by my bed that sends reports to Dr. Grogin. Fascinating, really. I’d never heard of these until this year. But then, I’d never even heard of ventricular tachycardia until this year either. Medical professional I am clearly not.

I decided to do the procedure, which is very quick and easy, unsedated because I really don’t like feeling woozy-headed, especially considering that I’m going to my boys’ AWANA awards program tonight. I’d like to be firing from all thrusters while I obsessively take their pictures and beam with pride.

But don’t worry. They gave me lots and lots of local anesthetic. I even told them, “Remember, I’m a red-head, so feel free to give me plenty. It takes a lot.”

I can’t explain it, but it’s true. It takes a lot of drug for me. They were nice. They gave me lots.

I think this Linq monitor is going to be a good course of action. In fact, while I was in the hospital today, the EKG machine went off two different times and said “Pair of PVCs”. Of course, you know I came home and googled what the heck a PVC is. It’s basically the same thing as ventricular tachycardia, just far less serious because it’s only one or two beats. It’s like 2 ventricular beats being off instead of 6, and it is actually very common, whereas v-tach is rare. But it’s not surprising that I would have these, since I’ve had V-tach.

I have learned so much about hearts this year. 2016 has been a serious drag, but it’s all okay because April is going home. The South is calling my name. And every time I start to feel down, I just remind myself, “Self, we are going home. And this will be nothing more than the past, my own strange time in the land of Oz.”

There’s no place like home. There’s no place like home. There’s no place like home. C’mon, Toto, only 6 more weeks! I’m clicking my ruby-red slippers with excitement!

For more updates on how the Linq experience went for me over the three years that I wore it see these posts:

Diagnosis: V-Tach

What it was like to wear a Linq Monitor for three years

The post The Linq Procedure for Arrhythmia: Another Half Naked Patient Story appeared first on Stories of Our Boys.