"Nothing You Could Have Done..."

As I prepare to undergo some "procedures" (really, can we just say surgery, since both procedures require going under the knife??) my human nature is feeling a bit unsettled because.... well, it's surgery!  The very word makes me nauseous.

Through all the nausea, I have had wonderful friends emailing me love notes.  Some have shared ideas ideas on how to increase my energy before the surgeries, or making lifestyle changes through nutrition, exercise, etc.  Some are just a quick "thinking of you" or "praying for you" sentiments.  I am so grateful to each and every one of the friends and family who write and call to check on me.  It is giving me strength to face what lies ahead. 

Note: I am a big fan of natural healing.  I believe that modern day medicine has a time and place, but I have not always gone to the docs for the flu, or taken my kid in for swollen tonsils or a fever, etc. because I do know how to care for many symptoms at home, naturally.  I spent years as an independent distributor for one of the foremost nutritional companies out there and still firmly believe in their products.  I received a great education from them and learned much about how the body works.  Much of what we consume leads to the outcome of our health.  Although I enjoy my goodies, I do strive to eat in a healthy way.

Lately, as I have been pondering when I noticed my heart going from bad to worse, I have stopped and wondered, "What could I have done differently to have prevented my heart from enlarging?  From not functioning properly?  From getting ARVD?  What could I have done differently?"

I have wondered if I took more of my nutritional supplements or not done certain exercises or ate different foods or, or, or...

As I really, truly have gone over choices I have made in my life, according to the timetable of when I felt my heart declining, I firmly believe my specialist when he told me, "There is nothing you could have done to change this."  I understand how genetics work enough to know there are good and bad genes.  This happens to be a bad gene.  The damage was done a long time ago, even though I was taking in the proper nutrition into my body.  I stress that last part, because I need to remind myself, almost to the point of haunting my thoughts with those words, there is nothing I could have done differently.  This is a challenge that I have to face in my life, and I will do so with peace in my.... well, heart.... and all the bravery I can muster.  God will see me through.

There has been so much fasting and prayer into the decisions that have been made to undergo these surgeries.  I have looked at all the options- both natural and medically speaking- and I have had it confirmed to me through answers to those prayers that I must do everything I can to live my life the longest I can.  Without the surgeries, my lifespan could be drastically shortened.

I will work hard over the next several days to make healthy choices and gain as much strength as I can in preparation for the procedures.  I will do all I can to be more aware of my overall health habits in general from here on out.  I will go to bed tonight and wake up tomorrow, knowing that when all is said and done, there is nothing I could have done to change this genetic mutation.  The damage has been done.  Now, we just repair it the best to our (mine and the docs) abilities, be it through surgeries, rest and awareness, then move forward with an eye grateful to God for all the resources that have been a blessing in my life. 

My name is Jenny McKinney, I really want some chocolate and there is nothing you nor I could do to change that.  (Hehe)

The Need for a Miracle

Several years ago, my very dear friend, Jonathan Roberts, wrote a song called "Miracles Happen."  That song profoundly changed my life.  I believe in miracles and I know one will come.  I fully expect it to.

When we moved here to Utah, it was with the understanding that my heart doc in Idaho would be calling with some test results.  When she called, we had no way of being prepared for what she had to say- that I had a heart condition that could "absolutely be life-threatening" and that I would need a procedure, if not more than one, in order to save my life.  At the time, my husband had landed two jobs that we planned on him keeping- as long as the hours worked out for both.  After a couple of weeks, we learned that it would not be possible for him to keep working both jobs.  After a great deal of discussion and prayerfully weighing the pros and cons of both jobs, he decided to keep the one that would give him more hours, and benefits.  It was not until a few weeks later, after my appointment to learn about my upcoming procedures, that we learned the benefits the job offers were all but a joke.  Not only will they not cover the procedures I need, the life-saving procedures, they will only cover $1000 per year for hospital coverage.  Yes, I did type that correctly.  One-thousand dollars!  Oy vey!  That does not even begin to touch the frustration level I have right now.

For my two upcoming procedures, the hospital portion of it alone will be $20,000.  This does not include the actual device, the surgeon's portion, the pay for the anesthesiologist, medications, etc.  (When my dad got this same surgery two years ago, his hospital bill was $50,000!!)  Again, Oy vey.  I am looking into other health insurance options, but right now, what I need is a miracle.

I am a firm believer in miracles.  I have experienced many of them in my life, from my babies surviving at birth, to miracles being pulled off for my musical endeavors, plus many more.  I know that because we (my hubby and I) are living the very best life we can, doing all that we can to make the best of choices, we are going to get our miracle and a way will be provided for me to get these necessary surgeries.  Seeing how my first one is scheduled two weeks from today, I know the miracle will come soon.

For those of you who have not yet learned about ARVD, I am at great risk for cardiac arrest.  I am too busy and have too much to accomplish before I die, so this simply is not an option.  I am asking for you to join our family in prayer that a way will be provided for us to have the financial miracle necessary to get these surgeries done.  I have seen what happens when many people pull together for a cause.  I know that with loved ones praying for this special purpose, we will get our miracle.

My name is Jenny McKinney.  I really don't want any chocolate this morning, but I will get my miracle.

The Loss of My Sparkle

When I was in high school, I was known as the "social butterfly."  My friend, Ry, said it was because I was like a butterfly flitting from flower to flower, only with people instead.  I miss those days when I was a butterfly.

Last night I watched my children do their sparklers (Sparklers are magical, aren't they?) to celebrate Utah's Pioneer Day.  I come from a long line of pioneer stock, of which I am grateful.  Because of the strength I have inherited through family blood lines, I know I can make it though this journey, as hard as it may seem.  Last night, as I watched, I was a bit saddened that it was all I could do to only watch. I think my sparkle has started to fade.  Actually, I know it has.

As recently as four months ago, I was the fun, energetic mom who danced silly all over the living room with my little girl, who spontaneously started a sock war with my kids, who encouraged family walks.  These days, I struggle as I can barely do a sinkful of dishes without feeling like I am going to faint from fatigue, or pick up the canned fruit off the shelf without feeling like I am going to have a heart attack.  Some days, I feel it is surreal how fast the condition of my heart has decided to decline.  I have an electrical storm going on in it, but that is not the kind of sparkle I miss.  I miss the energy.  I miss the pain free days.  I miss being able to play games for hours on end with my family and not having to lie down after only one round of Uno.  I miss being silly and carefree.  I miss my sparkle.

Everyone needs a sparkle in their life.  Mine is family and music.  I have plenty of those, but the heart troubles tend to damper my spirits of late, so I need to restore my sparkle again.  I am going to pray and ponder and create a plan to get my sparkle back.  I look forward to finding my sparkle again.

My name is Jenny McKinney,  I am off to find my sparkle and I really do not want chocolate, because I had some last night.

The Art of Being Tired

Restless night.... again.  Nap... again.  This is pretty much becoming routine in my journey to healing my heart.  That is why I have not blogged in several days.  I have many, many thoughts I want to share, but I am so tired, that they will not come together for the purpose of making sense.  It must be an art form of some kind to be this exhausted. I am grateful my family allows me to rest when I need it. I look forward to the new part of my heart I will be getting in a few weeks, if only for the sake of having a bit of energy again.  The truth is, ARVD wears you out.  My heart does not pump blood regularly, doesn't beat like it should and there is an electrical storm going on that wears me out.  The positive side to all of this is that I get to read a lot.... well, when I am not too tired to hold a book.  I recently read Paul Cardall's book (his music is AMAZING!) about his experience in awaiting a heart transplant.  He had to rest- a lot.  Although I have not talked to my friend, Dee, about her recent transplant, I imagine she had to do the same.  What do you do when you are so tired?  I am usually a go, go, go kind of person so this is a serious struggle for me.  I do a lot of thinking, reflecting, meditating, "Little House" watching, and one of these days, journaling, when holding a pen is not so tiring.

I am not complaining. Truly.  I am just being..... real.... open.... honest.  (Today, someone told me the honesty is refreshing.) I look forward to the day when I can sit at a piano for hours again, romp around with my kids again, spend a lengthy day having a bake-a-thon with my kids, then taking goodies to hand out to neighbors.  I am grateful and relieved that after 16 years, we finally have an answer and a solution in keeping me around longer.  God willing, for years to come.  For now, I will rest when I am tired.

Now, I realize that what I am dealing with does not compare to other heart stories or situations, but it is very real to me and very much serious enough that I have to stop and pay attention to what my body tells me. There are many situations.  None is more or less important than the other.  ARVD happens to be mine.

My name is Jenny McKinney.  I am tired and you have no idea how badly I really want some chocolate.



Please enjoy this video of a song written by Paul Cardall.  It suits my mood today.

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.

Just Let Me Cry

Emotions... blah.  Sometimes, I am grateful for them. Today, not so much.  It has been a roller coaster kind of today.  I understand this is normal at this point of diagnosis. Tonight, as I reflect on what I am learning about my heart, I will admit.... I am a bit nervous and dare I say.... a bit scared.  I truly believe that faith has no room for fear.  However, I am human and tend to feel human emotions on some days. Today is one of those VERY human days.  Maybe I will refer to them as my Mutant Days, since I can become rather cranky when I am feeling this way.

I do not usually intend to ignore the challenges of others.  Right now, life has handed a big pile of ... stuff on my plate and as I am in the process of learning how to work through each bite, I have been a bit neglectful of those around me.  I have not been ignoring those in my immediate living space, but those outside the immediate family bubble have been a bit out of my reality.  I hope they forgive me for that.  When you are handed a diagnosis such as ARVD, it is a lot to adjust to, especially when you are already dealing with major life changes. I always thought I would be one of those people that if handed a huge challenge such as this, then I would say, "It's all good. We will just beat this thing!" I have tried.  Truly. Today, though, that positive attitude seems a little out of touch for even a generally positive person like myself.

To help deal with this issue of Mutant Crankiness, I decided to do a little research, while eating my handful of chocolate- of course! I want to learn about the emotional side of this condition. I want to be as prepared as I can for whatever is coming. I found this tidbit from Johns Hopkins Medicine:

"For many patients, the diagnosis of ARVD/C comes from out of the blue. For others, it explains a long history of symptoms that were never understood. (This one is me.)  In either case, patients and their families may feel a sudden loss of well-being and a perception of helplessness. (Yep!!)  With any diagnosis of a chronic illness, it usually takes time to adjust to the emotional and psychological impacts. Most people learn to cope by gathering information about the disease and find comfort knowing that with proper medical care, they can find ways to live healthy and productive lives."

Phew! I sure hope so!!  I want to live a healthy and productive life.  I will live a healthy and productive life!
Tonight, I learned that my sister's long time friend of 20+ years underwent a heart transplant a few days ago.  I have been so focused on resting my own heart and some other life situations, I have not been thinking too much about the hearts of others.  Dee is amazing and I am grateful for her team of doctors that have pulled her through this ordeal.  Her new heart will help her be even more amazing.  We are all touched by the life of the young man lost in the process as well and our prayers are with his family.

It is obvious I have much to learn.  I do not like this phase of grief- the cranky, mutant part.  Tomorrow will be a better day, where I will reach out and help lift someone else's spirit.  I am grateful for the tomorrows.

My name is Jenny McKinney, I really want some chocolate and for tonight, just let me cry.

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