Wonderfully Unique

Today I rest, I breathe, I catch up on school work, I center myself. I rest because these past few days have seemed so huge. When I think of these most recent events my mind flashes to the beginning of it all…

Tuesday April 12th

On Tuesday I had my appointments with the Hem/Onc department at AFCH. I began my day with an ultrasound at 11:20. This ultrasound was to check the blood clot I had developed in my left clavicle region, and to check my PICC line on my left arm. It all began so normal. The ultrasound tech took images from my neck all the way to right above my insertion site. We were moving at a lovely pace. That was until as I was viewing the monitor I noticed the blood flow waves suddenly halted. And then there was nothing. No blood flow.

Once we were in the room we sat down and waited for the doctor. As soon as we heard that all too familiar knock on the door we immediately asked if the blood clot was gone.

“Is it gone!?!?”

“Yes… But there is now a new fully occlusive clot around your PICC line.”

We were stunned. I sat there for a while and realized that my line may have to be pulled. So I brought that up and the doctor agreed. We paged GI (who is responsible for my PICC line choices) and let them know of the news. We realized that this explains how one lumen was no longer working and my machine would alarm all the time saying my line was occluded… We still were shocked.

After letting this all sink in the other hematologist Dr. Diamond came in. She said the most delightful thing about me, that I am “wonderfully unique”. Throughout this whole journey adjectives such as “interesting”, “weird”, “complex”,  “puzzle” and so many others have been thrown at me. But this new name was one that I adored. I think I am going to use it more often! As she was examining me I showed her my bruises from the lovenox injections. My whole abdomen was black. Black and blue. My jeans would rub against the sores and cause a rippling burn across my abdomen. It was so uncomfortable. Thankfully they saw this and realized I needed a change. So I got my first insuflon catheter placed! That means only one poke for my twice a day injections! One poke a week! That’s all! So far it has been working very well! I am loving it.

My Mom and I left that appointment confused and concerned. We had no idea what would be in store for my PICC line.

Wednesday April 13th

We decided to get my labs drawn at a specific time that day to make sure my injections were still in the therapeutic range. My mom picked me up and I went to a local clinic to the phlebotomist. After the labs were drawn we got a call on the way home. The orders from Dr. O’Connell at GI were placed to pull my line. Once my old line came out they would need to place a new one ASAP.

Once they scheduled me in we headed back to the UW hospital to the IR. There we did the usual routine. We heard what the procedure would be, the risks, the healing process. My mom signed the consent and I signed on it too. Consent forms are something that will always confuse me. They are necessary, but really, does anyone want to say its okay to have their body poked and prodded? I hugged my mom and she was taken to the waiting area. I selected my favorite artist, Jess Glynne, on Pandora and jammed it out. I took a deep breath as the lidocaine was injected into my right arm, and we began.

After my old line was pulled and the new one was secured I was taken back to see my mom. With my first line out and my second central line placed. I never thought I would be saying that. I never thought in my lifetime I would be discussing central lines. Once we headed home I could not help but comment on how sore my chest was. We both thought it was just from the procedure. I wish I could say we were right.

Monday April 18th

Over the weekend I could not help but notice I was short of breath and my chest was so sore. At my last Cardio appointment we found that my heart function was lowered and my mitral valve prolapse had progressed. My cardiologist NP, Erin Marriott, was able to fit me in on Monday for an echocardiogram. Afterwards we were told how the echo did not show any reasoning for my symptoms. So after I met with the Hem/Onc nurses to have my catheter changed and had labs drawn, we went home. It was a long clinic day. A very long one.

That night our home phone rang. I was rather surprised to hear my mom say my cardiologist’s name. I wasn’t expecting for them to call after work hours. They said that they had talked with Hematology and they were concerned that I could possibly have a pulmonary embolism. They wanted me to head straight to the ED the next morning.

I was thinking that I was going to get a break from the hospital trips and pokes. I thought that we would not have to worry about any issues for a while. And on top of those emotions, I had also come down with a virus which triggered my autoimmune disease to go off. I just wanted to rest.

Tuesday April 19th

My mom and I arrived at the ED that morning. After meeting with the doctors, the plan was to get an MRI with contrast of my lungs. As we were waiting to hear the news I stood up from my bed. When I stood up the monitor started beeping and the alarms at the nurses station went off. In all red it read tachycardia and I was shocked to see my heart rate was 147. Before standing every time I would let myself relax, my monitor would beep and say bradycardia. In a time span of less than five minutes I went from having a heart rate that was too slow to a heart rate that was too high.

The doctor came in an hour later to tell us the news. I have a pulmonary embolism. A pulmonary embolism is a very serious thing. It is a blood clot that travels to your lungs. About 30% of people with these die. They die because the warning signs are hard to notice and take seriously in time to receive treatment. We didn’t know what to think… I was already on blood thinners for a month before that.

I came home that night and stopped at an amazing local smoothie bar, Bowl of Heaven. I could not help but take one look at that smoothie bowl and then at my mom and cry for a bit. I felt frustrated that every risk they would say wouldn’t happen, happens to me. It has been a rough patch lately of bad news after bad news.

I guess when you are wonderfully unique, the “small risks” are indeed big risks.