My Heart Story

Ali Edwards Journal Card from the Pieces Story Kit.
This inspired me to tell my heart story.


I was diagnosed with a heart murmur when I was younger.

In the spring of 2004, I had a routine blood draw that went bad, they couldn’t get my blood, and had to call a backup person. They took off their gloves. I think that’s how I got infected.

In the days after the blood draw, My blood glucose levels skyrocketed, I couldn’t figure out why, and couldn’t get them to come down. Also during this time, our dog, PupPup, started sleeping under my side of the bed. She’d never done this before (and never did this again after I got better). We thought it was such a strange thing for her to do. She barely fit. She had to flatten herself out and crawl under. Only after the ordeal did we realize that she knew I was very sick and trying to protect me or warn me somehow.

I remember starting to get fevers. Starting not to feel well, but it wasn’t a cold or flu. I was working from home, on a call with my boss when I told her I had to go to the ER because I was about to pass out.

Two weeks after the blood draw, I ended up in the hospital ER. It took them a while to figure out what was wrong. I was finally diagnosed with endocarditis. I had a clump of bacteria on my mitral valve. I was in and out of the hospital for two months. At one point I felt nearer to death than I’ve ever felt before or since. I remember two girls walking by in the hall. They were dressed in cute clothes, and I thought about how I don’t care about that anymore. I’m dying, I don’t belong here anymore. I had “the talk” with Kevin. Told him it was OK to move on after I died. As my medical power of attorney, he overrode my decision not to get a blood transfusion. They gave me two bags of blood that night. I watched as it dripped into my veins, giving me life.
Another low point was when I was told I’d had a stroke from a piece of the bacteria breaking off and going to my brain. I didn’t seem to have any side effects from it, which is good, but when they told me, I just broke down into tears. I sunk into emotional despair.

I went for test after test as they tried to understand how I’d gotten infected. They never found an answer.

It only took a few weeks of heavy antibiotics to eradicate the endocarditis and I was sent home, but my body did not react well to such a heavy dose of medication. I was swollen and broke out into hives all over my body, then my skin started to peel. My kidneys started to shut down. I had to go back. Back into that place where I was poked and prodded, and didn’t even feel like a person at all.
One night I had three nurses come into my room in the middle of the night, strip me down, and check me all over for bed sores.
I had a cardiologist come in the room and tell me I wasn’t taking this seriously, and I was close to death.
I would cry when someone wearing blue scrubs came into my room. It meant they were there to poke me and take vials of blood. It hurt so bad, especially when they couldn’t find the vein and had to poke me multiple times, digging around in my arm.
They decided to give me a PICC line. This is a catheter inserted into a large vein that carries medicine directly to your heart. It can also be used to draw blood. To get the line placed right, it had to be done with ultrasound. They wheeled my hospital bed out of the room to get the procedure. They left me all alone in a dark hallway. I knew I was lost. I learned later that Kevin was fighting with a nurse who told him to “calm down, Sir” because they didn’t know where I was! Eventually, the tech inserting my PICC line came to get me from the hall and wheel me into the procedure room.

I got a staff infection from the PICC line. It meant more antibiotics and inserting a new PICC line.

This cycle of getting better and going home from the hospital only to have my body swell up, break out in hives, and have my skin peel off happened several times. I always had to go back. I hated it. I hated that I was young, and in the hospital. I hated my body for not being “normal”. I hated that I was putting Kevin through this.

After finally getting out of the hospital, I had to continue IV treatment at home for a while. I had home healthcare nurses come by the house to flush out my PICC line and change the dressing. One of the nurses refused to treat me. She said I was too sick to be at home and needed to be in the hospital. I was told I had to have someone with me at all times, or I would have to go back in. I had friends and family come and stay with me for a week at a time; Kevin’s dad, my mom, my best friend Melissa.

My body was so thin. My hair started falling out in clumps! I had significant damage to my Mitral valve. I was told that I’d probably need the heart valve replaced within 10 years. I had to get annual echocardiograms to check how it was functioning.

Life returned to normal. I was getting my annual echocardiograms, and everything was fine.

Open Heart Surgery

Fast forward to 2017. I was working out with a trainer at the gym. She kept pushing me, and I kept telling her that I couldn’t do it, I was going to pass out. She just thought I was out of shape. I had several sessions like this.

In December 2017 I had my annual visit to the cardiologist, Jody. I told her about my experience at the gym. She told me this was a red flag and immediately scheduled me for some tests.

In January 2018, I had a stress test (Jan 2nd), then a coronary angiogram (Jan 16th) then a TEE (Transesophageal Echocardiogram). The TEE was horrible. My blood pressure was too low for them to sedate me, so they had to do it while I was fully awake. It felt like I was being choked and I followed my natural instinct which was to yank the tube out of my throat. After I did that, they held down my arms and started again – me gagging and choking the whole time.
On February 2nd I had a follow up appointment with my cardiologist. Kevin was with me. We learned that I’d have to have open heart surgery to repair or replace the valve. Jody explained the procedure and the healing process. It was surreal and scary. I broke down into tears. So did Jody!

On February 7th I met Dr. Fang to discuss the surgery and schedule my appointment. He quickly went over the procedure and looked at his calendar. He was on Spring Break with his kids the week of the 19th, but he’d be back at work on Monday and could schedule it then. March 26th. A day that would forever change my life, but just another Monday for him.
He told me he’d try to do a repair if at all possible, but if not, I’d need a valve replacement. I had to choose between a mechanical valve or a bio valve right there on the spot. It was a life altering decision, and with only minimal information I had to make a choice. It was the kind of thing that I’d normally spend weeks agonizing over before deciding. I chose a mechanical valve. It was what he recommended for my situation. So that was it, and we left the office.
I spent the next six weeks preparing for the surgery. Mentally, emotionally, and physically.
I needed to know everything I could about the surgery. What exactly would they be doing? How long would I be on a bypass machine, and how did a bypass machine work anyway? What was the healing process like? I looked up videos on YouTube, and followed along with other people on this same journey.
I desperately wanted to have a repair and not a replacement. I wanted to finally have something work out for me the way I wanted. The way that would allow me to put this in the rear view mirror, and not have to deal with it all the time. I’d learned in my research that a mechanical valve was loud, you could hear it clicking, other people could hear it clicking! I learned that it required daily medication and monitoring to make sure blood clots do not form on the valve.
So I prayed, A LOT. I prayed that I would live, and that the surgeon would be able to do a repair. My family and friends prayed for this too. I got a blessing as well.

Jody is the best doctor. She told us that she would have her husband, who is chief of staff at the hospital, do the anesthesiology for my procedure. I guess they were talking about it over dinner one night and he told her he was too busy to do it. She said she got so upset that she got up and went to the bathroom crying. After that he agreed to do it!
Before the procedure, Dr Fang (my surgeon) and Dr Echkardt (my anesthesiologist) came by to ask about antibiotics. They saw that I had listed Vancomycin as an allergy, and they wanted to know more, because it was the best medicine to use for the procedure. I told them about my hives and skin peeling. They convinced me it was from something called “Red Man Syndrome”. They said it happens when the antibiotics are given at too fast a rate. They said they would give it to me at a very slow rate and discontinue if they saw any adverse effects. So I agreed.
When it was time for my surgery, I was very calm. I knew I would have angels watching over my surgery. I felt I would be okay, but I was also reconciled to the fact that I might not survive the procedure. They gave me something in my IV. I said goodbye to Kevin and they started wheeling me down the hall. That’s the last thing I remember until after the surgery.


Coming to in the recovery room, I heard Kevin and my parents enter the room. They didn’t know I could hear them. I wasn’t able to open my eyes or move. I had a breathing tube in my mouth. I wanted Kevin to know I was okay. I tried to give him a thumbs up, but my hand just sort of flopped around.
The timeline over the next few days is blurry. I remember the breathing tube. It was there when I woke up. Jody had warned me it would be, and I should remain calm. The calmer I was, the faster they could take it out. Apparently I was very calm because they were so excited about how fast they were able to remove it.
I remember them removing a tube or a wire from my neck. They couldn’t get it to stop bleeding. They had to call in a trauma doctor. She said she was going to have to stitch it up without numbing it. So I got two stitches in my neck, and I felt the needle going in, the tugging when she tightened the stitches. I still have a bumpy scar there on my neck. I was unnaturally calm throughout the whole process. I must have been on some good drugs.

At some point Kevin told me that Dr. Fang had done a valve replacement instead of a repair. I was so angry. Angry at Dr. Fang, but mostly angry at God for not giving me the one thing that I’d sincerely asked and prayed for over and over. I felt abandoned by God. Dr. Fang later told me that my valve was the most damaged he’d seen. He said he didn’t have time to repair it or I’d be on the bypass machine too long, so he had to make the call in that moment. I’m sure it was the best decision in the long run, but I’m still very disappointed that it turned out that way.

That night in the ICU I started to feel like I was burning from the inside out. Every time the nurse would flush my IV, I would scream from the pain. All I wanted was water to quench the burning. When I got to sip water, I remember it was the best water I’ve ever had in my life and I wanted more. I kept asking for it, but I was only allowed a few sips every so often because they were afraid I’d throw up.
I don’t remember when it started to show up, but eventually I started to swell up and get hives and rashes from the antibiotics. Another severe allergic reaction. Months later I showed some pictures to a CVS nurse and she said I had “Steven-Johnson Syndrome “ which is a life threatening reaction to medication.

My blood sugars were extremely high. They wouldn’t let me use my insulin pump. The endocrinologist decided not to give me insulin to cover my food – only to make corrections when it went high. That was a ridiculous decision. I was tired of feeling horrible from high blood sugar, so one night I just hooked up my insulin pump and managed my insulin myself. When the doctor found out he said that we hurt is feelings by doing this. Wow!

The days continued to get blurrier as the week went on. They had me on some opioids and they built up in my system. I was having hallucinations. One night I was so confused I knew I couldn’t tell the difference between what was real and what Wasn’t. I called Kevin and he came back to the hospital to calm me down.

They sent me home on April 1st – Easter Sunday. I was so happy to get out of there. I was still having hallucinations. For a minute I could only see in black and white! I got off the drugs as soon as possible. Within a few days I was just taking Tylenol for the pain.

It was a very slow healing process. I was off work for eight weeks, but I could have used twelve.
We had gotten a shower chair and a long nozzle for the shower. I definitely screamed in pain during my first few showers. Kevin had to wash and rinse me. It was humiliating. I didn’t want Kevin to see me so helpless.
I went to a dermatologist about the skin rashes and peeling. I felt like such a freak in the waiting room. I felt inhuman because my face was swollen, covered in rashes, and peeling. They gave me a topical steroid.

My incision was not healing well, part of it had come open and was infected. Bloodwork showed I had a high white blood cell count. Kevin sent a picture to Dr. Fang. He freaked out and sent me to the ER. They had to do a PET scan to see how deep the infection was. Luckily it was only surface deep. The high white blood cell count was related to the steroid I’d been using on my face. They sent me home with a prescription. My health insurance would not cover the $3,000 prescription. My insurance wanted me to go back to the hospital, be admitted, and have the hospital administer the drug. The pharmacist called them and said they were being unreasonable as it would cost them so much more for an inpatient stay than to just pay for the medication. They still refused. We found a GoodRx coupon and a pharmacy that accepted the coupon and had the medicine in stock. It was a miracle when the coupon actually worked and we got the medicine for only $75.00!

Three months after the surgery my hair started falling out in clumps again. I wanted to shave it bald, but decided just to cut it shorter.

I still have sporadic nerve issues and migraines that I didn’t have before the surgery.

I had to build up strength and stamina again. At first I couldn’t walk to the fridge without getting winded, then it was difficult to walk to the mailbox. I couldn’t get into bed without a stepping stool. I couldn’t get comfortable enough to sleep, because every position hurt.

The incision finally closed. The bones have healed and I’m able to run again. I’m able to work out again. My hair has grown back in, and I’ve adjusted to the clicking sound in my chest. Each click a reminder that I’m still here. I have the scar on my neck, a 6 inch incision scar, which has keloid so it still looks red and bumpy, and a couple of scars from the tubes in my chest. These are my battle wounds. Proof that I’m a survivor.


It was healing to write out my story and put it together with photos and ephemera from the ordeal. You can check out the album flip through video below:

Story Album Vol 1 YouTube || PrettyLittlePocket

Europe Travel Album – Getting Started

As I mentioned in my previous post, I’m so inspired by travel albums lately – so why not start another one? This time I’m putting together a 12×12 album of our trip to Europe in 2017. We flew to Venice, Italy and stayed there for a few days before boarding a cruise ship and sailing to Croatia, Malta, Spain, and several cities in Italy.

I’ve had so much fun already going through my photos – I had so many photos it took me hours and hours to figure out which ones to print. There were so many, I decided to send them out to have them printed rather than printing at home.

Stack of printed photos
Box of ephemera stacked on my 12×12 album
Travel journal I created on the trip

Here’s a video walkthrough of unboxing my photos from Persnickety Prints, and looking through the ephemera and other items I have to work with for this album:

Be back soon with more progress.


Ali Edwards Story Camp | Travel Album

I’ve been really inspired lately to work on my travel albums. Maybe because I haven’t been able to travel anywhere for a while (hello, pandemic!). Looking back through my photos and ephemera takes me back to those places and relive those memories.

I started with my Ali Edwards Story Camp album. It was the last trip I went on back in January 2020. The event was held in Eugene Oregon.

My first step was to look at all of my photos and pull out my ephemera and see what I was working with. Based on the length of the trip, and the “stuff” I had collected from the trip, I decided to go with a Travelers Notebook sized album from Citrus Twist Kits. I also used the Ali Edwards 2020 Travel collection (both the physical and digital kits) and add-ons.

Next step was printing out all of my photos and coming up with a formula for my album. Using one kit and a basic layout formula for the album helped me to complete the album quickly because I had less choice.

After the photos were in the album I added my ephemera and then added all of my journaling.

Final steps were to add the embellishments. I had some fun playing with my gelli plate to create the intro page for each day.

I love how this album turned out, and so happy to have all these memories documented.

See this album come together from start to finish in my process video:

Here’s a look at the completed album:


Week In The Life 2020

This year I participated in Ali Edwards Week In the Life (WITL) project. For this project you take a deep dive look into your life for one week.

WITL Title Page

My Reason Why

Reason Why Page

My main purpose for completing the project this year was to capture the little things about my life in this moment in time. Looking back through my old scrapbooks, I don’t have an overall feel for my day-to-day life, I mostly just documented the big events. I wish I could remember things like my daily routine, what I was listening to or reading, what kinds of products I was using. Those little details slip away over time.

Documenting The Week

Focus on Photography

Setting up for photos from different angles

I love photography, I decided to use the week to get out my big camera to take a lot of the photos, and I also wanted to try to take photos from different angles than normal (a birds eye view, from on the ground, from behind me – I even put my camera inside the fridge and took a picture of me reaching in). I used ladders, various tripods, self-timer shots, remote shots, and also used my Apple Watch as a remote. I really enjoyed the process.

Focus on the Words

To document each day, I used an app called Day One, which is an online journal that syncs across all your devices. It was a rough start at first, but I finally got the hang of it around Wednesday, when I used the prompt Facts & Feelings. I would open up the app throughout the day and write the details of what I was doing, and then I would also write my feelings. Including facts and feelings gave my journaling a more complete picture. When it came time to put my album together, it was easy to do the journaling because it was already written.

Putting the Album Together

3×8 Album

I decided to use a 3×8 Album, which was a little daunting since most of the products in Ali’s WITL kit were made to fit in a 6×8 album. I wasn’t sure how I was going to fit it all in. I managed, but it’s a really tight squeeze!

I used the 3×8 album that came out with Ali’s Day In the Life (DIL) Kit 2020. To complete the album, I mostly used products from the DIL kit, as well as the WITL kit.

Sketch Layout of the Album

The first thing I did after the documenting week was over, was to put together a sketch which helped me see which photos I needed to print. Then I printed out all of the photos. I sent off most of the photos to Persnickety Prints.

Acetate Divider Page
Day of the Week Side Tabs

Each day starts with an acetate divider. I used the ones from the DIL kit. I cut off the day of the week on the top of the divider. I created my own side tabs by using an Avery index tab, and adding the white plastic day of the week words that came with the kit. I had to trim them slightly to fit inside the label tabs.

The divider includes the day of the week, and the date on a circle. I purchased these as a digital element, and printed them out on sticker paper. I put one on the front and one on the back of the divider.

I also included icons from the kit that corresponded to the topic I was going to focus on for that day (e.g. Monday I took a deep dive look into what we’re doing for work right now, so I included a computer and email icon on the divider).

Date Tags

Behind the daily divider, I created a tag by cutting down the day of the week 4×6 cards from the kit to a 3×6 size. I repeat stamped the date in a messy pattern using a large rolling date stamp from Studio Calico.

On the back of the tag, I wanted to include a schedule of my day. I thought it was the perfect place to include a scanned page from my daily planner. After scanning my planner page, I brought it into Photoshop Elements, and sized it down to 3×6 size and printed it out. I adhered it to the back of the date stamped tag.

Since I had to cut off the bottom of the 4×6 card, I lost some of the colored pattern that was on the bottom, and I really wanted to use it. So I used it on the back of the tag, along the top and bottom of the planner page. It added a nice touch of color.

Then I finished off the tag with some black and white bakers twine.

I used a 6×8 divided page that had a 3×8 pocket and a 3×2 pocket. I slipped the tag into the larger pocket. for the smaller pocket, I glued in plastic numbers related to the date (e.g. 11 for May 11th).

Journaling Day of the Week Die Cut

After the date tag page, I added photos from the day, and my journaling for the day. I used a day of the week die cut from a Feed Your Craft kit.

Each day I focused on a specific topic of our lives, which I chose based on the “-ing” cards from the DIL kit.

  • Monday – Working
  • Tuesday – Eating
  • Wednesday – Wearing
  • Thursday – Listening
  • Friday – Watching
  • Saturday – Going
  • Sunday – Loving

I picked my favorite photo of the day and made it into a full page photo that was outside the page protector. I backed the front and back of the full photo with large 4×8 photos.


You can see a walkthrough of the vide here.


Take photos from different angles. Use self-timers or remotes to get yourself in the picture.

Write your journaling throughout the day – don’t forget to include facts and feelings.

If you don’t want to (or can’t) include an original item in your album, scan it or take a photo to include in the album

Don’t be afraid to use an album that’s a different size than what’s intended for the kit. Get creative and cut up journaling cards and elements to meet your needs. You can also alter page protectors to meet your needs. For this kit, I took a 6×8 page protector and folded it in half to create a 3×8 page protector that flips out. It’s your album – have fun with it!

6×8 Flip out

~ Tonya