Endocarditis

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.

Recovery

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.

YouTube

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: