Liar, Liar- are Your Pants on Fire?

Are you the kind of person that sees a miracle for what it is or are you one who only believes if it is convenient for you?  I am in the first category.  I have seen too many to deny them, whether they are my own or belong to someone else.

I am writing this post for a few reasons. 
1- I want you to know that I still have very real struggles in my life.
2- So people will realize what happened to me was not a life-fixer, but a life-saver
3- To help you see to not waste your time on the people who create toxicity in your life.  Celebrate life with those who support you, believe you (and the doctors) and believe in you.  It is they that truly matter.

The heart struggles are still very real in that it has only been 10 days since the doctors saved my life.  I am still sore.  I am still bruised.  I am still tired.  Everyday, I get better and better and I know one day, I will be completely whole again.  I look forward to that day.  I look forward to everyday, for that matter. 

You have heard my heart story, but there is more to it.  Without going into great detail, I will say this past week, I was accused of making up my heart condition.  The accusation came from someone I used to be very close to, but due circumstances in our late teens, that tie had to be broken.  We only recently made contact again and have worked on mending our relationship.  Now, I have chosen to severe those ties again.  This is not because I cannot forgive.  It is because I will not stand to be called a liar.  Because I was heart healthy in my youth, it was assumed I always have been.  Obviously this is not true.  ARVD is real.  I had it.  I could show all the medical records and hospital bills from the past 16 years, but really, what good will that do when I am not believed anyway? 


It reminds me of stories in the scriptures when people asked Jesus to prove He was God.  They would take the attitude of, "Prove it to me and I will believe you."  That is not faith, folks.  You might as well say He is a liar.  He knows who He is and if someone chooses to not believe Him, that is their problem and not His.  This is how I feel.  I cannot make everyone believe that I am truthful in my story, but I am.  I have a dozen or more doctors and hundreds of people who have witnessed the heart struggles I've had- the arrhythmia, the dizzy spells, the passing out.  I was told from early on not to have children, or I could die, although the docs did not know exactly why.  Now we do.  Do you want to be the one to convince my children that their mom has faked her illness their whole lives?  I did not think so. 

I speak the truth.  My heart was broken.  Now it is fixed.  What the doctors were able to do (combined with the other two factors- I call it the Triple Threat)  did not fix my life, but it definitely saved it.  I still have financial struggles with my hubby.  I still have a boy with Asperger's and ADHD.  I still have a little girl who desperately wants her own room again.  I still am living with family and not yet in our own home.  I still have bills to pay.  I still have people who do not like me.  I still make mistakes.  But.... my heart does not skip beats all day long.  I no longer pass out.  I am able to drive again.  I am able to exercise again.  My heart can race and I will not die from it. 

Dr. B and his team saved me.  I. Am. Alive. 

It is all right to let go of those who only bring you down.  You are not here to please them.  You are here to reach your divine potential.  So celebrate!  Go out and find a friend that lifts you up and helps you laugh!  Sing while in the shower!  Dance in the rain with your kids!  Fill your life with joy, happiness and light!!  Those who can bring these feelings into your life are the ones you want to continue on with.  Keep smiling and always remember who you are. 

I took several pictures tonight- ones that would prove I actually did get a series of tests ran (again) and as a result of the findings I did end up getting a heart procedure in the hospital.  I wanted to "prove" something in the off chance that the non-believers read this entry.  I have decided, however, that it will do no good.  It is a battle I choose to not fight.  My life is fully blessed with people who love me, enrich my soul and most of all.... who believe me.  For me, that is enough. 

My name is Jenny McKinney.  My pants are not on fire and I really want some chocolate.

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!

 

In the Lord's Hands

I woke up at precisely a quarter after 5 this morning and am grateful I did.  (I just typed that in my best British accent, by the way.  Now I am thinking in a British accent.)  I have to fast for 6 hours prior to my surgery, which means I could not eat past 5:30 am.  Not wanting to wake anyone by fixing a large breakfast, I grabbed a cup of yogurt and a spoon and headed to eat while ..... in the privy.  (Yep, still British.  I am a huge Jane Austen and BBC fan, you know.)  I ate, finished my business, then after washing my hands, brushed my teeth so I was not tempted to eat the remainder of the morning.  Here we are, 30 minutes later and I am starving!!  The good news is there is only now 5 1/2 hours until I prep for surgery. Bravo!

(Back to my regular, western tone, folks.) As nervous as I am about having... gulp... surgical equipment taken to my body today and later this week, deep down, I am relieved.  For 16 years I have struggled with the fainting, the dizziness, the irregular rhythms.  I realize that everything will not be perfect after the surgeries, but they will be much better than they have been.  For that, I am most grateful.

Late last night, I had a long conversation with one of my very dearest friends.  She reminded me of a conversation we had several months back about the state of my health.  She told me, "Jenny, you said that if this doctor (Dr. L in Idaho) could not give you answers, you would be done with doctors.  You got answers and now something is being done.  Obviously the Lord is not done with you yet."  This brings great comfort to my heart (no pun intended... ok, maybe a little bit).  Who am I to argue when the Lord is done with me? 

Now today, I will put my heart in the hands of the doctors who are being the hands of the Lord.  I know they will be guided in searching for the misbehaving circuits to fix and that will be as it is supposed to.  Whatever happens, I fully trust in their care and capabilities.  I know they will be guided and that my heart will be better because of their expertise and training.  All will be well, because God is at the wheel.

My name is Jenny McKinney.  My heart begins to change today and to celebrate I really want some chocolate (but since I am fasting, I won't have any.)  Cheerio!

Kicking it at Scheels

Today our family took a little outing to a new (to us) store called Scheels.  We were anxious to see it, because we heard it was something rather like Cabela's, which we loved the first time we went there a few weeks ago.  While there are definitely some similarities, they are definitely each their own store. This entry is not to compare them, but to only talk about our experience at Scheels today.

We were very impressed by the customer service at Scheels. We had just come from viewing a potential rental home and we learned after that there were just too many stairs for this heart.  I felt fine while viewing it, but up and down the three levels really did me in 20 minutes later.  We were just about to the camping section of the store when my heart decided to take a bit of a flutter.  It seems that in that moment of skipping beats or whatever happened, my heart rate dropped drastically and I immediately felt like I was going to pass out.  In public.  Again. My wonderful hubby and kids escorted me to the nearby camping chairs, which were very comfy, by the way. After a few minutes of resting, I was not feeling any better, so I reclined in the camping chair.  Yep- a reclining camping chair.  And it was comfy!  I could take a nap in that chair.  I finally convinced the family to keep looking at items while I rested.

A minute later, a store employee came by and asked if I was all right.  I explained I have a heart condition that makes me have to rest sometimes, so if it was fine, I would just sit for a bit. With kindness, he said to let him know if there was anything he could do- water, etc.  He stayed pretty nearby.  About two minutes later, another employee stopped and we had the same conversation.  By this point, I was feeling very weak and the pain was getting pretty intense.  My son had come to check on me and we decided it was time to go. The Hubby knew I would not be able to walk out of that store without passing out, so he found the very nearby employee and asked for a wheelchair.  The team of nearby young men pulled together, one calling on the radio to arrange a wheelchair and went off to get it and the other two asking if I needed water or anything else.  I let them know I would be ok, especially after my heart surgery next month.  With total compassion in his eyes and on his face (much like unto our Savior, I imagine) one wished me luck and that he hoped it would go well.  The wheelchair came, I got into it, had The Hubby try out that awesome reclining chair, then we made our way to the elevator.  As we were walking by the store team, they again said to please let them know if they could do anything, even when I got downstairs. 

The Scheels team offered kindness and compassion to a stranger and her family that we have not always received.  I am grateful that the parents of these fine young men and the young lady have raised them well.  I am grateful for their care, concern and willingness to do whatever I needed and to make sure I would be all right.  There are good people in the world and you will definitely find them at Scheels.  (I wonder if they sell wheelchairs).

My name is Jenny McKinney.  I am a fan of Scheels and I really don't want chocolate, because I just had some.

Heart Control

I originally wrote this post on June 23rd over on my music blog. Since I decided to start this blog on ARVD, I figured it was a better place to have this post. This is a short version of how we led up to the diagnosis of ARVD.

The past little while has been..... a roller coaster, to say the least. We have finally moved to Utah, but are not quite settled, as we are staying with my folks until we get our own place this summer. The last two months I was in Idaho, we finished the show, packed our house, moved it into storage and sold off many of our belongings, moved in with two families (our family was split up the last month), missed The Hubby while he paved the way for us in Utah, and I went through a bunch of heart testing. Now that we know what is coming for my heart and I would like to tell you my story.

I have been struggling with heart issues for 16 years and lately it has gotten worse. When I was 20 and pregnant with our first baby, my hubby took me to the ER for what we learned were kidney stones (not my first time having them.) I also came away with a diagnosis of arrhythmia. Over the years, I struggled a LOT with fainting spells (which sent me into early labor MANY times) as well as fatigue. Every year, when I had these frequent fainting spells, I would get tests ran and year after year I would see specialists. Because most of the trouble happened when I was pregnant, there were only so many tests they could run. Ultimately, I was told time and time again, that something was wrong with my heart and there was nothing they could do, because they could not pinpoint the problem. So, I lived with it all these years. I cannot count the number of dizzy spells, fainting spells, and chest pains I have struggled from over the years. Along with it (and a story for another day) I have had multiple miscarriages. (Now I think my heart would not have been able to handle giving birth so many times, so the Lord took those precious spirits home so I could stay and finish my work.)

The Hubby and I have fasted and prayed and pondered much over the years when to keep going with tests and when to stop. From past experience, I knew the docs would say, "Yep, something is wrong, but we don't know what it is..." and there is nothing they can do about that. One day, after a bunch of testing that proved nothing significant, and a particular fast, the Spirit whispered very clearly to me, "There is something wrong. The doctors will not be able to find it. You have to do this on your own." So, I did.

After I went to see my dentist a few months later, I knew I really needed to figure this out. My teeth, that had always been healthy, had suddenly began decaying- at a very quick pace. Three year prior (yes, it had been that long since I had seen a dentist) I did not have one cavity. Now I had THAT many?!?! What in the world was happening? After may Q&A's, it was concluded I may have an autoimmune dis-ease from what we could tell. The dental pros (there were two of them) did all they could to save my teeth and in the end, I only lost two teeth, which was pretty amazing considering the circumstances. They were not the first medical pros that month to tell me I may have this condition. So, I decided to go see my doc- a NEW doc- and maybe, just maybe this would give me some answers I had not had before.

The new doc (who came highly recommended by several friends) held a Q&A session with me as well. He knew almost immediately what was wrong- my heart troubles, my kidney history (infections and stones), and now my teeth. He just KNEW that it was either my thyroid or I had Lupus (the same condition three medical pros had suggested that previous month.) We did tests and ..... they were inconclusive. (Which is pretty standard from what I gather when testing for Lupus. It is VERY hard to diagnose.) So we decided to just treat it as Lupus and check back in a few months later. During those months, I started getting some great results. I figured out red meat causes my joints to inflame, so I gave that up.... mostly. (You have to have a few bites of roast now and then when you are a dairy mans daughter!) In previous months, I walked the fine line of life or death and yet, we still could not get answers. (I am grateful to the wonderful friends who took care of my family while I was so sick and The Hubby was working out of state.) Once again, there was nothing to really do, but try and figure it out on my own. So I did a LOT of research and concluded I must have Lupus. However, that only lasted a while. Most of the symptoms went away, kidneys were fine, the teeth were treated and saved and no more major issues there, but.... my heart started acting up again.

Skip to recent months.

During the time of the 2012 Prison programs, as well as doing the Emma show this spring, I was also struggling with a lot of dizziness, fatigue, fainting spells and chest pain. There was much to do, so I just pushed through it. Then, at the insistence of many dear friends, I finally went in to my family doc to get an EKG. (When you pass out at church, the third time, they really push you to see a doc.) This was, of course, to put to ease the minds and hearts of those around me. I knew there was nothing the docs could do. Or was there? Turns out, since I did all I could on my own, the Lord stepped up the plan. You see, during these months I had an experience that told me VERY clearly what was to be done and what would happen if I did not do it. I went back into my doc, he ran the EKG and sent me to see a cardiologist a few days later.

She. Is. Amazing. For the first time ever, I felt like I had a specialist who actually cared what was happening to my heart. We have ran a series of tests (EKG from 1st doc, blood workup, echocardiogram, CT Scan and most recently, a Cardiac MRI- which is a miracle in itself that I was able to get it before I left Idaho.) The tests results came in after the move to Utah. She got a 2nd opinion before she even called me. I have now seen another specialist- an electrophysiologist- here in SLC.

As it turns out, I may have congenital heart defect, meaning I was born with it. My electrical system is all messed up as a result of the right side of my heart (right ventricle) being enlarged. I cannot remember the initials of the condition I have (I did not right it down, duh!) but I can tell you that it can be life-threatening if I am not very careful with how I treat my body. Because of my family history and the wonderful genetic gift I have received, I am due to get a procedure in a few weeks, then surgery after that. The procedure I will be getting is an electrophysiology study. After that, I will most likely (although we will not know for sure until after the study) be getting an ICD implant. (Yes, I want to be just like my daddy when I grow up!)

All of this sounds scary- and I will be honest, it has been- but after a LOT of prayers, blessings and fasting, I feel very at peace that the Lord has His hand in all of this. We are following the promptings He is giving us on how to best take care of my heart, and in turn, my family. We are very blessed here in Utah, surrounded by family and friends and good work to sustain us. I have a husband and children who take really great care of me. I am grateful to them.

If I am a little lacking in sharing my music, I hope this will better help you understand why. I hope my story can help someone understand that we can make decisions that are tough, but necessary, as long as we are willing to let the Lord guide us. I know I will be ok. I have been promised that. I am not scared. I am moving forward in faith. I pray that you can as well, in whatever decisions you have to make.

 Thank you for your ongoing support and love.

With Hope,
Jenny McKinney

I'm Not Gonna Lie....

"I'm not gonna lie...." today was a rough day. The quote comes from one of my dearest friends in the whole world. She always prefaces her statements with that when she wants to get a serious message across. For example: "I'm not gonna lie.... these cookies are really, really good." Or how about, "I'm not gonna lie, I look good today." Or my personal fave: "I'm not gonna lie, I hate being a bum wiper." (She is CNA in nursing school who worked in the ICU.) Haha! Love this woman!

I'm not gonna lie..... yesterday was good. Our family (minus the one kid out of town) went to a parade in our old neighborhood and saw some of our favorite people. We made cookies, I took a nap, then we went to hang out at my brother's house for a BBQ and fireworks. My heart was sustained through the day and all was well, making memories with the family.

I'm not gonna lie..... today was a lot worse. Perhaps yesterday took its toll one me, but my heart was not happy. There was a few stressful hours of insurance crud- to make sure I will have the coverage I need for the upcoming surgeries. When DH and I came home from our errand outing, I was feeling really..... icky. I sat to relax for a bit and thought I was fine. Then, while sitting on the floor playing cards with two of my favorite men, Chest Pain decided to make an appearance. Sensing his loneliness, Dizziness, Fatigue and Lightheadedness decided to join the fun. Next thing I know, I could not hold myself up anymore. Hello Floor! Good thing I was already sitting down!

I'm not gonna lie...... I hate that feeling- know the passing out is coming and not being able to fight it off. I hate knowing that the pain is just the first symptom of things that will happen in the next bit. Not sure what happened after that, except I found myself laying down on our makeshift bed when I woke up. (We are staying with my folks temporarily, so we only have a makeshift mattress on the floor, for which I am grateful.) DH confirmed the passing out. Awesome.

I'm not gonna lie..... I have been laying down the rest of the day. I am so grateful I have such good kids to take care of each other when I am not feeling well. I know this is a very uncertain time for our family- staying with relatives until we find our own place; Mommy being run down and knowing she is getting surgery in a few weeks; missing friends in our old town.

I'm not gonna lie... in spite of the trials, we are really blessed. We do have family that is allowing us to stay put for the time being. We have work to get us back on our feet financially. I am in the care of a really great team of medical professionals who have discovered my problem and know how to treat it. And.... I have a small stash of dark chocolate to get me through the next few days.

Tonight, I have been reflecting on some songs I wrote over the past couple of years. One is a reminder that Gods hands are gentle hands of love. He will heal all, in His time. The other is a reminder to not weep, because I know what His plan is for me. I'm not gonna lie.... in spite of the difficult days like today, I feel comforted. How can I not? "For I am His child and His light shines in me."

My name is Jenny McKinney and I'm not gonna lie.... I really want some chocolate.