Guinea pig

After all of that worrying, I have gotten the COVID vaccine.

I did research for weeks, printed out article after article, read whatever I could on the CDC website, and talked to my co-workers that have gotten the shot.

I am being the guinea pig for my family. My family (as was I) has been distrustful of the vaccine. I decided I would be the first and let them know how it has been. I want to do my part in trying to get this pandemic under control. Once I get the second vaccine done I will discuss with my family about getting theirs as well.

I am trusting the science. I am trying to be a good role model for my family, and hopefully others in the black community, to follow. I’m trying to do the right thing.

The vaccine is here, why I haven’t gotten it yet…

Two vaccines have arrived to help with this COVID outbreak, one from Pfizer and one from Moderna. I have signed up for neither.

I know as a nurse I should be one of the first to get out there and get vaccinated. However, I still have questions that I needed answers for and only recently have I starting finding the answers. I wanted to know more about side effects, how many participated in the studies, how is the vaccine supposed to work?

There is also one other thing that has been holding me back; I am black and I have an inherent distrust of the medical system, the very system I am a part of as a nurse. Learning about things such as the “Tuskegee experiment”, seeing how many times the healthcare system has failed black women, seeing in person how implicit bias plays a role in how medical professionals treat people of color, realizing that there was only a small amount of people of color (9.8%) were actually in the Pfizer study, all make me wary.

I want to trust the science behind the vaccine. I want to trust the medical system. I want to believe in the potential of finally getting this pandemic under control. I also want to feel safe.

DiGeorge Syndrome

Have you ever heard of DiGeorge Syndrome?

I hadn’t until I had a pediatric patient with the diagnosis. So what is it?

According to the Mayo clinic, it’s a genetic disorder caused by the deletion of a section of chromosome 22. Patients tend to exhibit heart defects, cleft palate, weak immune systems, developmental delays, and behavioral problems.

I had the most adorable little 7 year old with DiGeorge. She didn’t have the cleft palates that is common with the disease but she did have cardiac issues. In fact, one of her ventricles was huge! She already had cardiac surgery before and it looked like she would need to have it again. Apparently she would be dealing with this for the rest of her life.

Working in radiology I come across at least one disease a day that I have never heard of. I like to look up the disease just for my own medical knowledge. Any diseases you’ve run across that you knew nothing about?

Li-Fraumeni Syndrome

Every now and then you all know that I like to share some of the things that I encounter. This week I encountered a disorder that I had never even heard of:

Li-Fraumeni Syndrome

If you are scratching your head at the name don’t worry, so was I! This is something I have never come across. You know me, when I don’t know… I am all over the internet until I do know.

I will say I had no idea such a brutal disorder existed.

Let’s get to the gist of what this syndrome is. The disease was first recognized back in 1969. Drs. Frederick  Li and Joseph Fraumeni were studying familial cancers and this study focused around four families that suffered with multiple cases of young adult and childhood cancers. It turned out that a mutation in a gene, TP53 to be exact, made them predisposed to cancers. Oh, while we are talking about the gene, it’s a tumor suppressing gene (figured I would throw that at you so it makes a little more sense). As if that wasn’t enough, it made the carriers more susceptible to rare cancers. We are talking cancers of the “soft-tissue, bone sarcomas, breast cancer, brain tumors, adrenocortical carcinoma and acute leukemia. Other cancers seen in LFS patients include gastrointestinal cancers and cancers of the lung, kidney, thyroid, and skin, as well as in gonadal organs (ovarian, testicular, and prostate.)”(lfsassociation.org)  This article gives a lot of info

Li-Fraumeni Syndrome is an asshole.

It was the statistics surrounding the genetic mutation that shocked me the most. According to the LFS association, individuals with the mutation have nearly a 50% chance of developing cancer by the age of 40. It gets worse. The risk goes up to nearly 90% by age 60. However, hold on for this one, women have a nearly 100% chance of developing some type of cancer within their lifetime (much higher risk for breast cancer)!

Yeah, I was NOT ready for that particular statistic.

Like I said, Li-Fraumeni Syndrome is an asshole.

What should trigger oncologists to test for this mutation is family history. If a patient has a strong family history of the cancers listed above, especially if family members tend to get cancer at a young age (40 or younger), LFS should be looked at.

So, what made me do some research on LFS? A patient. I came across a young patient coming for a radiological study that had a tumor, while one of their parents was battling cancer as well. Yes, parent and child were both going through chemotherapy at the same time.

Once again, Li-Freumani is an asshole.

I happened to be a part of the care and saw some prior scans of the patient and had never really seen such a large tumor. Someone from the patient’s medical team happened to be down here with us and they were able to tell me the name of this syndrome.

I can’t even imagine what it would be like knowing that I carry such a genetic mutation. Would I ever want to have children? If I decided to have children, would I feel guilty if I passed it on to them? I had this discussion with some of my coworkers and we all had differing views. So bloggaverse, I ask you two things:

1. Have you ever heard of LFS?
2. Would you ever have children if you knew you carried the mutation?

Constantly learning

A little while back, while I was still a STICU nurse, I decided to start a little notebook where I would right down new diseases/diagnoses/medications I came across during my shifts so I could look them up and learn about them. I was afraid when I transitioned into an imaging nurse I was not going to really be “learning” anything new. I’m just going to start IV’s and monitor for contrast reactions.

I was wrong.

People get MRI’s for all kinds of reasons. I have probably come across more diseases that I have never heard of in this position than I had the whole time I was in the ICU.

It’s been a constant learning experience. I start looking up the disease the patient is diagnosed with (which is the reason they are coming to MRI in the first place), and that leads me to another related disease, which leads to a new study, which leads to a med I have never heard of, and so on.

I’d never heard of MGUS, plastic bronchitis, or a syrinx. Came across all of those in MRI. I assumed that I need to be bedside to learn anything new in nursing. That’s not the case at all. As long as you are providing patient care you never really stop learning…