The Importance of Being Educated

The Importance of Being Educated is a contributing blog article for the Adult Congenital Heart Association (ACHA).

If you’re looking for a new charity to support this year, please consider  ACHA. Their mission “is to improve and extend the lives of the millions born with heart defects through education, advocacy and the promotion of research.”

Outreach/advocacy is vital because my cardiologist didn’t know or didn’t realize how important it was for me to see a specialist. It could’ve saved a tremendous amount of heart ache (no pun intended) if he had.

Thank you in advance for your support.

Things They Don’t Tell You

Ok, they tell you in a booklet called, Your Guide to Cardiac Surgery.  All the doctors and nurses that you consult with prior to surgery don’t mention it.

“It” is the emotional after effects of open heart surgery.  Common Responses to Surgery according to the Guide are:

  • Sleep Disturbances
  • Temporary Depression and Mood Swings
  • Restlessness and Inability to Concentrate
  • Temporary Memory Loss
  • Decreased Appetite
  • Independence

All of these are “common” or “sometimes”.  Of course, everyone reacts differently however for me, everything was 100 fold.

As explained to me AFTER surgery, your body is off balance for several weeks following surgery.  Most nights I am burning up and waking up soaking wet but do not have a fever. And the nightmares! I cannot even begin to explain them but they are AWFUL! The decreased appetite is no joke but you HAVE TO eat in order to help your body heal.  It’s all about calories and protein. Do you know how hard it is to eat when you’re absolutely not hungry?  They don’t even put you on a heart healthy diet because they want you to eat whatever you can get down. Temporary depression and mood swings…Ha!  For about two days, I could care less about anything in the world.  My family, my friends, my life…it’s an awful and strange feeling to have. I have a physician friend of mine that said, days two, three and four are the worst.  Ok, thank you for telling me that docs!  Eventually of course, I came out of it but there are still days when I think to myself, “this sucks!” and want to be in bed.

Luckily for me, before surgery I wasn’t dependent on family and friends.  For six weeks there are sternal precautions you must follow, including not being able to drive, while your sternum heals.  Amazingly, besides having to be chauffeured, independence follows pretty quickly after surgery.

I can attest to the temporary memory lost, restlessness and inability to concentrate.  I hardly remember anything and it is definitely hard to be motivated.

Because of the multiple incisions I have and being in the hospital along with all the drugs they pump you with for and during surgery and the med regime, has done a number on my skin and hair. I don’t feel human most days.

Simple tasks like taking a shower, light housework and even a short walk tires me out.  I can take a three-hour nap daily and be out cold!

Yesterday it has been four weeks since my surgery.  I’m doing pretty well considering, however, I cannot wait to feel “normal” again which could be another few weeks.

I wouldn’t wish this on anyone and I’m here to tell you, PLEASE take care of yourself and your body. My situation is a little different since I was born with these issues however, now seeing through a different perspective, I look around and see how badly we eat and how crappy our food is. Off the top of my head I can count at least three friends that have had cardiac related issues in the last few months and needed stents placed.  I have also learned that living is a CHOICE!

Be conscious of what you choose…

 

This, Is Breaking Me

Written November 8 on my flight from Seattle to California to visit family and friends before surgery.  I cried all the way to California and on the drive from Long Beach to my sister’s in Temecula. 

I read a friend’s blog the day before and he said, “What’s amazing is I’ve always thought I was stronger than this” referring to the journey he is on and my heart broke for him (no pun intended).  I started to cry for him, and for myself. The thought came to me that we are our own journeys but parallel just the same.

On my flight to California, I was breaking.  Cracking at the seams. I can’t stop crying. At that moment crying for no particular reason. I’m tired. Physically and emotionally. I’m in pain. Physically and emotionally.  My right arm hurts from the heart catheter just four days before and the area where my pacemaker is, is still healing.  If I strain my left arm, I can feel the muscle rip from the device as it’s trying to heal and form around the pacemaker.

The day before I left for California, I received a call from my doctor’s office. They told me they needed to do ANOTHER heart catheter to look at the right side of my heart.  This will be the third catherization I have had to withstand since September 19: one through the groin for an ablation, the second through the wrist to see the left side of the heart, and now a third, where the access point is the neck! *cue Jimmy Fallon’s “EW!At the time of the actual posting of this blog, I have completed the procedure and everything looks good.

After the phone call from my doctor’s office telling me I needed another procedure, I broke down. Through all the challenges I have faced, from losing both my parents to cancer, to losing a true love to a motorcycle accident, to suffering months of retaliation in the workplace (you can’t imagine unless you’ve experienced it), to being born in the first place with a congenital heart defect, this is the first time I thought, “this, is breaking me.”

I’m not hungry. I am overwhelmed. It’s all too much.

I’m taking this opportunity to spend time with my family and friends before the big day.  It will help on an emotional, supportive and spiritual level.  To spend time with those I love and whom love me.  No doubt it will help with the healing and recovery process. Then I cannot help but think of all the people around the world that have it worse than I do and I feel like a baby.  I should be strong. I should push through like I have always done but I just can’t.  I don’t feel weak per se, but I am different.  I’m having to accept my “limits” at this moment, accept the help, the support, the LOVE and just plain slow down!

This is what it’s all about, learning to accept all those things that I have never really done before.  Regardless, it’s breaking me. Breaking me down to be rebuilt into something better, something stronger than ever before.  Deep down I know this but in the meantime, I’m breaking.  I’m broken and I have no choice to let the pieces fall where they may and let some one else pick up those pieces and put me back together.

 

Wow, How Life Can Change

It’s been about four months since my last post.  I wanted to use my blog as a way to keep friends and family updated on my experiences in Alaska.  Since July, A LOT has happened.  Actually, my life has been turned upside down.

About a month after my last post I started to not feel well (hence the lack of posts).  Shortness of breath (I basically couldn’t breathe most of the time), my heart raced constantly, I was fatigued because I couldn’t sleep, I had a decrease in appetite, I was working longer hours (more stress) and then I developed acute edema.

Being the middle of Alaska, seeking medical care was a bit of a challenge.  I would have had to have gone to Fairbanks (2+ hours) or Anchorage (4+ hours).  If you ask anyone, yes, I had no plans of seeking medical care in Alaska. Why?  Deep down I knew that if I walked into a hospital with my medical history alone (I have a congenital heart disease known as Tetralogy of Fallot (ToF), coupled with my symptoms, I would have been admitted into the hospital. I didn’t want to be admitted into the hospital in Alaska.  I prayed everyday to “just get me to the lower 48.”

Yes, yes, why didn’t I just leave and end my seasonal commitment early and go home?  I mean, it’s a seasonal job, no big deal and they would’ve completely understood.  I just didn’t.  It wasn’t an option and I cannot explain why.  Well part of the reason was I could barely get from A to B without being extremely out of breath.  I’m talking a few steps and you would’ve thought I ran a marathon. Yes that bad.  So the thought of packing up my belongings and getting to Anchorage by myself was horrifying.  No way did I want to do that.

Mid-September my obligation in Alaska was over and I traveled to visit a friend in Seattle. She insisted we go straight to the ER from the airport. I was diagnosed with congestive heart failure and was in the hospital for two weeks.

I now have a pacemaker (for life), I had an ablation procedure, cauterizing extra electrical activity in my right atrium and I am now scheduled for pulmonary valve replacement surgery on November 20. I don’t have a pulmonary valve so they are unable to go in non-invasive.  I am having full open heart surgery.  This will be my fifth.

For someone who has completed a number 5k’s and mud runs, has walked 60 miles in three days, who thought was healthy as can be and did basically whatever she wanted, it’s been quite a shock.  Physically, the procedures and being in the hospital has been torturous but the emotional impact has been overwhelming.

Before everything went downhill, my friend Cindy visited me in Alaska for over a week and we had a fantastic time visiting Homer, eating the most delicious seafood on the planet, exploring the Kenai Peninsula and hanging out together in Alaska. It was nice to have a friend from home know the experience in Alaska.

I look back at pictures and think THAT day I was fine, then the next, I just wasn’t.  It happened THAT fast.  I’m slowly wrapping my mind around the whole thing and learning to accept that my life has completely changed. And to live so differently.

I left Anchorage with someone who cared about me and helped me.  I met and worked with a wonderful boy (I mean that as a term of endearment) who was my life-line during those final weeks.  And I mean literally and figuratively, my life-line (I’ll save that for another post).

I am now currently sitting in a Starbucks just outside of Seattle (what else do you do in Seattle) currently living with my dear friend Lana while I receive and seek treatment.

I was often asked what would be the most memorable of the time I spent in Alaska. It’s definitely the people. The people I met and worked with are beyond kind, funny, compassionate and plain old awesome.  I am so grateful and thankful of the new friends I made and they are now near and dear to my heart.  As with EVERYONE in my life.  I am overwhelmed from the love and support from my family and friends during this time.  I never would have thought that those in my life cared SO MUCH! I know that sounds lame but the amount of love pouring in is overwhelming. Something else I must learn to accept.

click on image to scroll through photos

Oh, What An Adventure

“Welcome to Alaska!  Where anything and everything can go wrong and will. Hard!”

The General Manager of the Denali Cabins, where I work, said that the other day as he and a few others were putting back together a wood plank walk way.

The water source on our property is a well and apparently, they’re not sure what happened, the water pump went out and we’ve been out of water now THREE times for a matter of hours. Okay, so, once it was to replace the filtration system, but still.

Sunday night, we experienced a 4.6 earthquake.  The epicenter was exactly where I sit.  Denali.  It certainly felt stronger in the trailer I live in.

Last week there was tsunami warning on the coast of Alaska (I’m several hundred miles away) due to an earthquake. A few days later, a massive storm hit the Denali National Park and Preserve, washed out the roads and guests and employees had to be evacuated.  Hey, we made national news!

And the mosquitoes!  I must be allergic because the bites become huge and I swell.  The left side of my face was swollen for a few days.  I’ll spare you the photos.  Not attractive.  I have a huge bite on my thigh at the moment that looks bruised and the pain stretches all the way down my leg.

I have been trying to remind myself to wear insect repellent however, I think of mosquitoes in hot, humid places not cold and rainy places.  I suppose the rain keeps the mosquitoes away but as soon as it stops….I just found another bite on my face and shoulder.  Ugh!

Excursions!  Yes, it’s definitely not all dismal and dreary.

Denali_BackcountryLodgeI went out our Denali Backcountry Adventure! It’s a 13-hour tour to the end of the road in the Denali National Park & Preserve and back. There is only one 92-mile road that stretches the Park and after 15-miles you can only go by bus.  The roads ends at our Backcountry Lodge, where, on the tour, you have lunch and have time to either pan for gold in the creek that runs along the Lodge, go on a short botany hike or stroll at your leisure around the property.

Denali_Fox
A fox, strolling along the bus.

 

It was amazing! The Lodge, the whole tour, the views, everything!  We did see bears, caribou, sheep, a beaver, a fox and Mount McKinley (don’t worry, we didn’t get out of the bus. We are on their territory).  Now you might be saying to yourself, of course you saw Mount McKinley. Well, it isn’t guaranteed.  Only 20 percent of the hundreds of thousands of visitors each year see Mount McKinley. It’s the highest peak in North America and creates its own weather system. If it’s clear and sunny around the Park, it may not be around “Denali” (the “other” name for Mount McKinley).

The next day, I went on an airplane tour of the Park. The pilot said, doing the bus tour first is like reading the book before the movie.  It was definitely a smart move.  We were able to get up close and personal to Mount McKinley.  Even saw climbers and their camp.  Those people are crazy!

I finally made it to the visitors center of the Park and walked around a bit.  It’s informative and helps with my front desk duties.  I tried to get on an ATV excursion but I was bumped. Since I work the front desk, these companies allow us to go on their adventures on a space available basis for free.  If there’s a paying customer, we’re S.O.L. No biggie, at some point I will probably suck it up and pay for it.  In a way, I was thankful.  It had rained all day and night and it was cold.  I wanted to be a tough cookie but I was saved!

Denali_HuskyHomestead
The puppy likes me!
Denali_HuskyHomestead_DownwardDog
The original “downward dog” …hey, they said it, not me!

And lastly (so far), I went to Husky Homestead, where Jeff King, a four time Iditarod winner breeds, raises and trains his mushing Alaskan Huskies. If you know me, I’m not much into dogs but it was certainly interesting. What possesses people to want to trek 1,100 miles across Alaska in the cold, I will never know.

Okay, I need to rush off and get ready for work.  I wish I had more time to write and be creative. Soon! Until then, I hope you enjoy! (click on the photo to enlarge)