The Miracle of my Heart- Part II

The Procedure Hours
As I was wheeled into the lab (reminder: the OR for the heart and lung unit), they gave me a nice warm blankey to cover myself up as I was transferred onto the operating table.  Ah, so toasty!  Introductions were made all around.  What a nice team they were!  After I told them my daughter's instructions and they said they planned on fixing my heart the best they could, the anesthesiologist said,  "All right, I have just given you some happy juice.  Some people do not like how it makes them feel."  I replied that I didn't either.  I did not even get to count backwards from 10, because I was out so fast.  The next memory I have, I was waking up in recovery- 3 1/2 hours later!

I love when I am entertaining to others and have no recollection of it myself.  My husband, children, and closest friends refer to this behavior as the "after 10 drunkness."  My mother was witness to this behavior, as well as the medical team, as I was coming out of my unconscious state, totally loopy from the drugs that had me knocked out.  "Whooooo are youuuuu??" I asked the nurse.  Apparently Nurse Brandi introduced herself to me 3 times before I finally remembered we had met already.  The same went for the others in the room.  I would ask a question, then doze off.  Ask a question, then doze off, keeping everyone in stitches while doing so.  Some of the other question consisted of, "Where... where am I?" and "What is going on here?"  Ah... I love not remembering.  I even called my hubby and sister to let them know everything went well... and later had to be told I talked to them, because I did not remember.

The Best News EVER
I am sure it was a bit nerve racking for my mom to be the one to take in all the news from Dr. B, since I was a bit.... incoherent.  She was told everything went really well and they did not put in the ICD.  When she asked if I would be coming back later in the week to get it, she was told the best news ever: It looked like I will never need it!!  Say what??  Here is what was explained to me over the next few hours. 

This Never Happens
When the camera was placed in my heart, the med team quickly learned that it is not as enlarged as they thought it was originally.  I was given the medicine to make my heart act up in order to find the circuit(s) causing the problem.  Even if they were to find the circuit and ablate it, my condition was bad enough I needed the ICD to live!  What happened was they immediately were able to find the circuit causing the arrhythmia.  "This never happens," is what the nurse explained to me.  She said usually when they get in there, the heart decides to behave and it takes several tries to find the correct circuit.  This was not the case for me.  They fixed the problem by cauterizing the end of the circuit, ultimately making little scars on my heart in order to create a new electrical flow.  My heart began to beat normally, evenly, for the first time in my entire adult life.  After it was stable, they gave me more meds, trying to cause it to react to negative situation that could occur in the future- arrhythmia, cardiac arrest, etc.  The great news?  My heart kept beating steadily and never responded to the drugs.  The problem was fixed!!  Once it was fixed, it was determined I would never have to have the ICD and the ARVD is simply..... gone!  I do not have it anymore!  (Now what will I blog about?)  I will no longer have the dizzy spells, the fatigue, the passing out!  After more than 16 years, my heart will not fight me everyday.  It also looks as if my children will not inherit the condition after all!!  Say what?  Could that be because in the two short weeks my genes had changed enough that they were no longer convinced this was a genetic mutation?  I do not know (and whether or not you agree) but I believe those products certainly could have had something to do with that conclusion.

So Now What?
In three weeks, I go in for a check up.  As I said before, for the first time in my adult life (I was diagnosed with arrhythmia at age 20. I am now 36) my heart is working properly.  Beep... beep... beep... said the steady beeps on the monitor as I looked at it after the procedure.  At last!  Before I went in, my heart rate could not even stay above 60 bpm.  It was even dropping into the 40's.  After, it was a steady 78 bpm.  Hallelujah!!  I am having to take it really easy for 3-4 days with no lifting more than a jug of milk, only stepping up with my left leg first, walking around for 5-10 min at a time, but mostly staying down or sitting at a angle in which I am not bending at the hip.  In a week, I will be able to start doing normal things again.  What is normal?  Driving (I have not done this for months), taking walks with my kids, sitting and playing a card game from start to finish, without passing out in the middle of it etc.  In 2 months, my heart will be working 100% perfectly, after it has time to adjust to the changes.  I might feel a flutter here and there, but that is because it is adjusting to the new circuit flow and rhythm.

Yesterday morning, my hubby said I already looked healthier.  What a GREAT compliment!  For the first time in my children's lives, their mommy will be healthy and strong.  How can we not rejoice?

I firmly believe that I am to use this experience to help others learn about this life-threatening condition.  Some of the blessings (besides the ones I have already told you about just now) are that I have made new friends along the way and strengthened already existing friendships.  I have seen the smiles on the faces of my loved ones as they have learned that I no longer am at high risk for sudden cardiac death.  I have felt Heaven's blessings pour abundantly on us as we have been loved through this very difficult time in our lives.  My heart is healthy.  My heart beats strong.  How can I deny that this is a Divine outcome?

I had an amazing team of doctors and nurses.  For them, I will be forever grateful.  I went into the surgery lab with my doctor planning on giving me a permanent device to keep me alive.  I came out without one, and my heart was fixed for good. "This never happens, Jenny."  Well, it did and in my book, that is a miracle!

My name is Jenny McKinney.  My heart is miraculous and you bet I really want some chocolate!

 

The Miracle of my Heart- Part I

Have you ever experienced a miracle?  I am grateful that I have seen many in my life.  Last night, the Lord saw fit to grant my heart a miracle.  I want to share this whole story with you, so this will be in a two or three part post.

As a Review:
When I got my official diagnosis of ARVD, my doctor determined it was a genetic condition, because of my family history.  Although we did not run any tests to make that official, it was pretty for sure.  This put my children at a 50% risk of carrying the gene.  The plan was to get them tested so we can be prepared if they do have it.  The plan for me was to get the Electrophysiology Study done, alblate the misbehaving circuits in my heart, if they could find them, (it really is a guessing game) then implant a loop recorder, which I would wear for up to three years.  This was all to be done yesterday, then later this week I would go back to get the ICD implant, which I would wear the rest of my life.  Things did not go quite like planned.  This is the miracle.

A Few Factors:
First, let me explain that I strongly feel there are several factors to the miracle taking place.  To do this, I need to share a bit of history I have not before, because it is so deeply personal that I did not think it proper to share publicly.  If I am to use my life to bring glory and honor to God, then I feel that it is now the right time to share this.  You can believe this or not, but I speak only the truth and this is my story.

Back in November, I was in my studio (aka- garage) working on selecting music for my songbook I was putting together, when I had a wonderful experience.  This is not the kind of experience that is normal to all, but it is quite common in my life.  I was prompted by the Holy Ghost to began getting my music and other affairs in order.  There was very specific instruction given and I was told that if things continued as they were going with my heart, I would not be here very long.  Specifically, I would have maybe 2 years to live.  If I found a way to get my heart under control, I would be here longer, but still not as long as I want to be.  (There was much more to it, but this is the basic info.) With that news, I collapsed to the floor, weeping.  I knew I had to do something, but what?  A few minutes later, my hubby came home from work and we talked about this revelation and prayed together.  We knew that if we did all we could on our end, the Lord would allow me to be here to see my children raised- at least a while longer.  I decided I would take whatever time I could get and live my life to the best I could, making memories with my family and bringing glory to my Heavenly Father and Savior. You can read what happened next here.

The Miracle Formula:

Personal fast and prayer is part of the miracle. Through the promptings of the Spirit, we have known what to do seemingly every step of the way.  As I began going through the testing, I was fasting and praying about the right course of treatment to take.  It was told to me very clearly that if the doctors told me I needed to get any kind of procedure done, I was to do it.  So when I got to Utah and was told I needed these life saving procedures, I knew I could not argue it.  We scheduled for August 12.

Great nutrition has played a major key in the miracle; not just any nutrition, though.: Lunarich nutrition.  During these months, I was introduced to this product that I absolutely 100% am convinced changed the outcome of my heart procedure.  Again, this is only one ingredient in the
Miracle Formula, but definitely a big part of it.  Remember when the doc said this was genetic?  Basically, this product makes negative genes no longer function and wakes up positive, healthy genes.  So when you hear about what he said after surgery, this is why I believe he was lead to his decision.

YOU are the other part of the Miracle Formula.  I had friends of every age, all over the world, fasting and/or praying for me.  That was you!  It was because of those prayers, because of your unwavering faith, that I am absolutely sure caused the miracle to happen.  For that, I will always love you.  I will always be grateful.

Of course, the other part of the formula was the guided, prompted hands of the doctors and nurses that treated my heart.  I know if Dr. B had not combined his expertise with spiritual guidance, things could have been a lot different.

The Waiting Game:
I was scheduled to be at the hospital at 11:30 am.  I was prepped for the procedure fairly quickly and we thought I would be in the lab (aka the heart and lung operating room) by 12:30.  My mom and I (She stayed with me the whole day. Love my mom!) were updated every 20-30 minutes, making us aware there was a bit of a wait.  The patient in the lab before me, also under Dr. B's skilled hands, was having some complications.  They kept finding something else wrong with her heart and had to fix it while she was in there.  Who was I to complain?  I pray they were able to mend her heart. 

Meanwhile, I looked over the paperwork with my nurse and the orders said I was to have all the procedures done that day.  This included: the Electrophysiology Study (heart cath), ablation, the loop recorder implanted, and the ICD implant (which I originally was told would be later in the week, remember.)  A bit unsure as to what to prep me for, Nurse Patti called Dr. B in the lab.  He said to prep me for everything.  You see, the study we knew for sure was going to happen.  Then, IF they could find the misbehaving circuit, they would fix it by ablating it, which would reroute the electricity in my heart.  They also were going to implant a loop recorder under my skin.  This device would allow them to see all of my heart comings and goings.  The final procedure would be the ICD, but until we got into the lab, we would not know for sure if I was going to get it that day.  However, when he said to prep me and have me plan on staying overnight, I knew I was going to be going home the next day with a device permanently implanted in my chest.  I realized that if this is what he felt he was to do, it was what the Lord wanted for me, to keep me here.  I was at peace with that. 

It was nice to have the day with my mom, but really, she needed to put her feet up and I wanted to have it all done with.  I am not a patient person, but at least the nurses and aides were fabulous and the bed was super comfy.  However, fasting 6 hours before my time to go in, then having another 5 hours added to that fast was not the easiest thing in the world to do.  (Ah well!  It's over and done and I have eaten plenty since then!)  It was finally 4:30pm before I got wheeled into the lab.  When I left the house that morning, my little girl (6 years) ran outside and yelled, "Go get your heart fixed... and bring us presents!!"  I informed the medical staff in the lab of her instructions to fix my heart.  They said that is what they intended to do.  Yay!  Here we go!  My heart was about the be in their hands.

My name is Jenny McKinney.  The story is about to get amazing and I really do want some chocolate.

The Miracle of my Heart- Part II

I am Not My Disease

This is ..... a bit tricky- writing about a disease I barely know anything about, while trying not to think of chocolate to often. I am not sure what is harder some days: having to rest so much because my heart is not working right, or having to hurry and lick my fingers ...... again ..... because I snuck into the chocolate chips ..... again .... and I don't want the kids catching me.

Sometimes they are the only source of chocolate I can find when I really, really want some chocolate, which is pretty much all the time.

I would say I am an addict to many things. Chocolate is definitely one of them. Learning is another. No, I am not addicted to drugs or alcohol. (I have never touched those things in my life. Well, there was the one time I accidentally got drunk ..... Ah, another day, another story.) There is much to learn about ARVD.

Why the blog title about Chocolate? Simple. I love chocolate. I thought if I keep the humor in this blog a bit here and there, I would not focus so much on the dreary parts my condition. I have a pretty good sense of humor. Hopefully, it will come through now and then.

I have recently been diagnosed with ARVD (Arrhythmogenic Right Ventricular Displaysia.) When I say I say "recently," I am talking about a week ago. I have only began to research and have so much to learn on this heart journey. My condition is not exactly common. (1 in 5000 cases documented). And since it was only discovered in 1982, there is more to be understood, I imagine. I have not yet found a lot of personal stories on the web regarding this condition, so I thought if I shared my own, it may help someone along the way.

I am not my disease. It may limit what I do with my body these days, but I am not my disease. I am a happy, joyful person that seeks to uplift others through service and especially music. I am married to my forever sweetheart and mother of 4 beautiful, incredible children. Now that I know about this condition I have, I am especially grateful to have been able to bring them into this world. I plan on staying around as long as I can to raise them up to the wonderful adults I know God designed them to be.

My name is Jenny McKinney, I have ARVD, and I really, really want some chocolate.