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.

A couple of weeks ago something strange happened. Four mornings in a row I woke up at 4am with my heart pounding and my chest all tight and uncomfortable.

“What. Weird. Why can’t I go back to sleep?” I thought, as I stared at the clock. 4am. That’s a time I usually only see if we make foolish airplane travel plans. April does not do early.

Pound.Pound.Pound.Pound.Pound. Well, I can’t possibly go to sleep like this!

I felt more like going running than going back to sleep.

On the 4th or 5th morning of this nonsense, I decided to go to the ER. My resting heart rate and blood pressure were both high, and one of my doctors had urged me to go to the ER or urgent care the next time this business happened, so I did.

I’ve never seen doctors move so quickly. Wait. That’s not true. I haven’t seen them move so quickly since the emergency c-section of 2011.

They ran all sorts of tests, and by the time two hours had passed my heart rate was down to beautiful numbers, and my heart was working like a well-oiled machine.

“Maybe you were having an anxiety attack,” the ER doctor suggested.

“At 4am, out of a dead sleep? Really?”

“Do you have stress in your life? Are you worried about anything?”

Hahahahaha  Do I have stress in my life? Me, the woman home schooling a house full of male children, sweet, spirited boys who belong nowhere other than a farm with sixty acres?

“Well, I’m worried about my hip pain. And I mean, yes, I have stress. I have four kids!”

“But I mean are you worried about anything other than your health?”

“No.”

Why doesn’t worrying about my health count? I think it counts.

Anyway, I left, and it didn’t take too long for my heart to crank up again, and after watching people freak out about it, I started to feel rather uneasy myself.

“Ok. So I have to just get to Monday with my heart like this, and maybe on Monday my doctor will help me,” I thought to myself.

Don’t worry. She did. She pulled up my records, saw the pattern that dated back to at least 2012, and she put me on a beta blocker medication that has helped immensely.

But that’s not the point of this story.

The point of this story focuses on those days between the ER morning and the appointment on Monday.

I knew I had to get through those two little days with my pounding, schizophrenic heart, and it was uncomfortable, and it was worrisome, and you know what I had to do?

I had to literally “trust God with my heart.”

In church circles, we hear that all the live long day. “Aw. Little Johnny asked Jesus into his heart.”

“You gotta get your heart right with God if you want his blessings.”

“Give your heart to Jesus.”

“Don’t harden your heart towards the Lord.”

When we say heart, we really mean the soul. I get it. But wait. Do we also mean more than that?

Do we just mean the soul? Or do we also sometimes mean life?

Because I noticed something pivotal in all of this rig-a-ma-roar.

The ER people, and even my general practitioner, sure treated me a lot differently when my heart was in distress than they did when my hip was hurt, and my hip hurt way more than my heart ever did.

But my hip is not my life. I could lose my hip, get a replacement, and keep on livin’.

The heart is the life. Once the heart gives out, it’s over. The fat lady is done singin’!

(Sorry. I think bad grammar helps emphasis sometimes.)

Now what these folks are missing is that if they’d bring down my hip pain, my heart might not get so upset, but that’s a topic for another day…

Now let’s apply the heart=life idea to a church phrase or two.

1. “Little Johnny gave his heart to Jesus.”

Little Johnny gave his life to Jesus. Jesus isn’t just there to take you to Heaven. Jesus wants  us to trust him with our life! He wants us to come to him in prayer and to follow his teaching.

2. “You gotta get your life right with God if you want his blessings.”

But let’s not put the cart before the horse. We have to ask for Him to forgive us, and then we have to trust him to help us “get our life right.” It will never look perfect, but you will see a difference.

The biggest take-away for me was the reminder to truly trust the Lord. When you’re consciously trusting Him with the very beat of your heart, it suddenly gets very REAL!

“He that trusteth in his own heart is a fool: but whoso walketh wisely shall be delivered.”  Proverbs 27:26

“The troubles of my heart are enlarged: O bring thou me out of my distresses.”  Psalm 25:17

“Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy and my burden is light.”  Matthew 11:28-30

*****It took a few months to figure out that this episode was actually a ventricular tachycardia episode. Read here for the next part in the story.*****************

The post When Trusting God with Your Heart Gets Very Real appeared first on Stories of Our Boys.

“‘Together’ is a really good word. Together is what we need when we hit tough patches in life. Making decisions when life is making you cry shouldn’t be done alone.” –Lysa Terkeurst, in The Best Yes

Today I went to my very first cardiology appointment ever. It was both helpful and confusing at the same time.

My cardiologist thinks all of my pain and heart issues are probably related. Structurally, my heart looks superb, but the beat and the blood pressure are too high. She thinks this may be autoimmune in nature.

And then she said two things I would rather have not heard. Don’t worry, it’s actually kind of funny:

1. “No exercise until we figure this out.” (I can’t wait to see the look on my physical therapist’s face when I tell him they do not want me to exercise yet. Hahahaha!)
2. “I think you need to be gluten free.”

Bread and walking. Two of my favorite things in life. Walking is one of the primary ways that I manage the throbbing pains. Can’t I just give up sugar instead?

I’m kidding. I’ll do it, but first I need time to figure things out. I mean, who knows. We still basically have no idea what is causing the pain or the heart issues.

I’m so tired of even thinking about all this health mess. Right now it sure would be fun to forget about it and go shopping for a beautiful new outfit instead. Maybe I’d even buy a copy of In Style magazine. Then I would have a Cinnabon, and I would eat the whole thing unashamedly and wash it down with a little jug of whole milk…  These are my fantasies…

Oh, well. At least they still let me take Motrin. My friend Lisa and I were joking the other day about the things you wish you’d known earlier in life: Target and Advil. If ever there were two things we should have bought stock in, those two things are the cornerstones of life right there.

It’s not just me. I remember when I went to Ladies’ Retreat. I put my Costco size bottle of Advil on the counter, and I was constantly saying, “Yes, you can have some,” to all the other ladies.  Haha!

Everything is going rather well though:

1. I feel better.
2. One of my favorite people brought us dinner last night. (Thank you, Hillary!)
3. My doctors are running tons of tests, so maybe we will find what is wrong.
4. Oh! And I DON’T have a fever today, not even a little bit. Hurray!
5. I had those boys doing school work like crazy this morning. I’m going to get some serious house cleaning done too, while I still feel well.

Hard times make such fertile ground for growth. Being hurt and confused was awful, but it was also like rain. We all run from the rain, but if we don’t have it, our soul starts to look like a desert.

So I think I will come out of this stronger than before. I mean, physically I’m weaker, but inwardly I’m feeling all gladiator-like. That’s right. I’m 10 feet tall and bullet proof, in the Lord.  I’ve seen so many answered prayers. It’s almost tempting to take them for granted.

But instead, I will give thanks.

I have had so much help. I owe so many of you a great deal of gratitude, especially Alan. Alan has shouldered an enormous amount of responsibility during all of this. I can’t tell you how many ways he has covered down for me.

Alan and Joshua, spending time with our niece: They are both so good with babies.

I feel so thankful and full of hope today. If joy were a commodity that I could walk around and hand out to all of you I’d do it! To feel the way I feel, right this second, is a delightful thing. My joy is just spillin’ out all over the place.

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work in us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen”  Ephesians 3:20-22

I finally received a diagnosis! Click here to read it: Ventricular Tachycardia Health Update

The post Update on my Pain Battle: Things are getting better! appeared first on Stories of Our Boys.