My Mom is Simply Amazing

Mom1November is National Caregivers Month so I thought this was the right time to post about a very special person, my mom. I don’t even know if one simple blog post will do her justice, but I’ll try. Being a caregiver isn’t easy. It means you’re committed to helping someone, before you can help yourself. It means that you’re willing to put someone else’s needs before your own. Being someone’s caregiver is a choice, it’s not a requirement. And the decision to be one is done out of love. My mom is not only my caregiver but she is also my Dad’s, who has muscular dystrophy.

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NYC Summer 2017

The thing is, my mom didn’t chose this life. When she married my dad neither of them knew he had MD and they definitely were not expecting to have a child with Cystic Fibrosis. She has never once complained about the life that was chosen for her. She juggles taking care of my dad, myself and finding time for things she loves. If you walk into her bedroom you will find lots of yarn, spinning wheels and a weaving loom. Textiles are her thing and she is an amazing knitter. She can make anything from a simple scarf to a complex sweater. When she has to miss a knitting retreat or dinner with friends to help my dad or me, she says that she wants to be there with us. That she would rather be there to help us get through our struggle than go have fun with her friends. If that’s not pure love, then I am not sure what is.Mom3

You see, I’m alive today because of my mom. As a child you never want to do hours of treatments a day or spend time in the hospital. But my mom ensured everything got done and would spend every day with me in the hospital, finding ways to entertain me during it all. She kept my medications ordered and organized over the years and has spent hours at a time working through insurance issues. Now a days, I manage my own medications but that is because my mom set me up for success when it was my time to take it over. She prepared me for when Cystic Fibrosis would become my disease and when I would have to do things on my own.

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Mt. Vernon Rehab Hospital (Oct. 2016)

Last summer when I was in the hospital she came every single day. My mom’s presence made me comfortable. Some nights after she would leave me for the evening, I would be uncomfortable and unable to get to bed. I would send her a text telling her I couldn’t get comfortable or to sleep and she would jump back into the car and come back to the hospital until I fell asleep. Her presence made me comfortable. Her presence makes a lot of people comfortable.

Everyone who knows my mom can attest to the type of person she is. She is a firecracker and knows how to handle a tough situation. When I was in the ICU last summer, the nurses knew she was a ball of fire. She taught kids in drug rehab and every single one of them loved her, they learned from her and they graduated high school because of her. She knows how to give that tough love that many people need. My mom is also very loving. She always wants a hug in exchange for a glass of milk and would never let go if it was up to her. I still notice her frequently embracing my dad even though he can’t hug her back. That’s the thing about my mom, she does things out of the kindness of her heart and never expects anything in return.Mom2

So this month, for national caregiver month, I wanted to make sure everyone reading my blog knew how amazing my mom is. How amazing of a caregiver she is. How kind of a person she is. And how I’m alive today because of her. If you’re ever privileged enough to meet her, you’re one lucky person.

My Team

Let me tell you about “my team” while I’m in the hospital.

Transplant Pulmonologists

Infectious Disease

Pharmacist

Nephrologist

Nurse practitioners

Dietician

Social worker

Fellows and medical students

Well, of course there’s the transplant pulmonologist who leads the team and monitors my vital numbers related to lung function and orders tests like CT scans and blood work. The transplant pulmonologist works directly with my infectious disease doctor who looks at the buggies that are growing and decides what antibiotics and dosages will best kill those suckers. They order different types of lab work to check for infection that might be in my blood or other places. The pharmacist who I know well isn’t one of those pharmacists you’re thinking of like when you go pick up a prescription at the drug store. He works with the team to determine which course of medications are best for compatibility and avoiding bad drug interactions. The crazy thing is, the doctors ask him questions about compatibility and looking at him, you can tell his mind is running through his pharmacy reference encyclopedia and out pops an answer. Can’t forget about the nephrologist. While all this is going on, he might have a thing or two to say about the impact on my kidneys. He knows the priorities from being on the team and helps monitor when my kidneys have to take a hit. The transplant drugs are hard on the kidneys so he is an important part of my team.

The nurse practitioners are like glue that holds everything together. They are there to answer any questions I might have and to take information back to the team. I can bother them or complain and they always help and encourage me. The dietician makes sure I’m bringing in enough calories to fight off any infections. She reviews with me foods that impact blood sugar, potassium and a bunch more. The social worker makes sure that my spirits are high and manages any paperwork. She’s aways easy to chat with. The fellows and medical students come along with the team and add to our conversations. I always want to know where they went to school and how much longer they have in their training. My team has great camaraderie.  It’s easy to tell how well they get along, how much they enjoy their work, and how they are dedicated to each of their specialities. I have a lot of faith in them, fun with them, and am thankful for them!

Anya

I lay in my hospital bed in room 224 in the CVICU at Fairfax Hospital. I turn my head to the left and see a young blonde woman pass my room. “She must have cystic fibrosis,” I think. There are not many people under 50 in the cardiovascular ICU, or any pulmonary floor for that matter. And when there are, my first thought is always CF. She has a trac in her neck with a tube tracing back to a ventilator pushed by a respiratory therapist. My next thought, “She must also have had a lung transplant.”  Then she walks around again, and again, and again. Each time she passes, before I knew it, she is back again. I look to my mom & tears start to run down the side of my face. “I want to be her. I want to be able to walk the halls with my ventilator,” I mouth, unable to speak because of intubation. I want to be walking so badly. I want to be able to move so badly. At that moment, I want to be anywhere except where I am. “You will be, Jackie. I promise, you will be,” my mom responds, holding back tears herself. Anya passes my room day after day, multiple times a day. Dr. Brown comes in during her usual rounds and I write to her in a notebook, “I want to be her. The blonde woman who walks past my room.” Unable to say much, Dr. Brown simply replies, “She is on a different journey than you.” But she takes note.

Anya
Anya Crum Huie
Later that afternoon, a woman from the hallway hands my mom a note. The corner has been ripped from a sheet of paper, on it said www.anyasstory.com. Curious, I immediately ask my mom to get my phone. With hands barely strong enough to hold it, I go to the web address. I read Anya’s story. I find out that she had a transplant in 2008. That she had won 2nd place at the transplant olympic games in the 100m dash. She had an amazing husband and an extremely supportive family. All of this she shares with us, people she doesn’t even know. I also find out that her body rejected the first set of lungs she received and she went through a second transplant in 2014. So I am right, she did have a transplant, but that’s not why she is in the hospital this time. Her body is also rejecting the 2nd set of lungs and she has developed an infection. Some people would feel defeated. But from what I witness, not Anya. I’d never met her and I could tell she was more determined than ever just by the way she passes my hospital room every day. One day, on the ventilator, she walks a mile around the CVICU. That is over 15 laps. Amazing.

Anya’s mom comes by my room just to check in and see how I am doing. This becomes a regular occurrence along with Anya’s walks around the CVICU & past my room. Except now Anya smiles & waves. We are friends. We could never actually meet in person because of cystic fibrosis and because of the bugs we each might cary. But we are friends. People with CF, they just get each other. It’s almost like an immediate bond is made when you find out someone has CF.

That summer I learned a lot watching Anya walk past my room. I learned that everyone is on their own journey. No two people are the same. I learned that it wouldn’t be easy, but I could be walking the halls on my ventilator. And I would be soon. I learned that someone could have the worst possible thing happen to them post transplant, but still have sheer determination. She inspired me before I ever even said “Hi” to her. I wanted to work hard and get through my tough time because I saw Anya walk past my hospital room, fighting CF and fighting rejection. In my mind that’s what inspiration is, someone making you want to be better or do something more. Anya did just that.

Anya lost her battle with CF on September 7, 2017. Anya reminded me of something important. You don’t know what someone is experiencing just from watching them walk the halls past your room. They may appear the strongest of person, but are fighting a battle of their own.  Anya also gave me hope. Hope that I would make it through and hope that I would be walking the halls, just like her. Anya and I may not have been close friends, but one thing I know is that I will never forget watching her walk past my room every day.

People with CF, they should never be forgotten for they are some of the strongest and hardest fighters. We know how precious every breath truly is. The ones who lost their lives fighting to breathe should be a reminder that a cure needs to be found. That people with CF & lung transplant shouldn’t be fearful of the word “rejection” because that word shouldn’t even exist in our world. The CF Foundation is leading the fight against CF and recently, CF transplants and rejection. To find out more and donate in honor of Anya Crum Huie please visit http://www.cff.org.

Meet Dr. A. Whitney Brown

I’ve decided to share stories about important people in my life. Every so often I will feature someone on my blog. It may be a family member, doctor, or friend. Anyone who has shaped me into who I am today.

My first post will be about Dr. A. Whitney Brown, my primary pulmonologist.Dr. Brown

It was February 2015 and I was dependent on oxygen for the first time in my life. I was in the Emergency Department of INOVA Fairfax Hospital with one of the worst lung exacerbations I’d ever had. I was extremely weak and had the lights turned off. In walked a new pulmonologist I’d never met before. Most doctors would have flipped on the lights to examine and talk to me, but she didn’t. She simply sat on the chair next to my hospital bed. She told me her plan and was determined to get me better. As a patient with Cystic Fibrosis, I know a lot about medical care. Over 26 years I’ve learned things that can’t be taught in a classroom. Because of this it takes time to trust medical professionals. But I trusted Dr. Brown right away. And right I was too. She & a team of doctors led me out of that exacerbation and off oxygen.

Over the next year I started to see Dr. Brown regularly, every 1-3 months depending on how my health was doing. We talked about medicine but we also talked about life. About work, about my social life. Each visit I felt like she got to know me as a person and not just me as a patient.

Then in June 2016, I needed a double lung transplant and I needed one badly. I was in a medically induced coma and I hadn’t done all of the pre transplant testing yet. During that hospital stay they had planned to start testing for very early phases of the transplant process. Dr. Brown knew me well, though. She knew I was a compliant patient and she knew I could handle transplant life. It was Friday afternoon and the insurance companies would close for the weekend. Dr. Brown made the decision to get insurance approval before then. She was smart. Donor lungs were found that weekend. And my life was saved the following Tuesday.

Life happens in serendipitous ways. Had I not let Dr. Brown get to know me as more than just a patient, I may have never received those lungs. It’s not easy to get listed for any organ. Certain guidelines have to be followed and your case presented to a board of people. Dr. Brown was able to vow for my character and the way I handled my health. Because of her I was listed for a double lung transplant & I will forever be grateful.

Dr. Brown is still my doctor post transplant and we still talk about more than just medicine when I see her in clinic.  When my mother’s there, she says, “Two pretty people.”  She’s an amazing doctor who truly cares. Us patients of hers are so lucky!

I though it would be fun to ask her a few questions:

1. Why did you decide to become a doctor, a pulmonologist specifically?

I always wanted to be a doctor from a young age. It was either a doctor or a teacher…. and my dad told me doctors make more money and encouraged me to go in that direction. At one point, I remember saying I wanted to be a teaching doctor. I went into pulmonology for critical care. It is a combined fellowship training of both pulmonary and critical care. However, the more training I got, the more interested in pulmonary I was. During my fellowship training at UNC, my favorite parts were cystic fibrosis and lung transplant.

2. What is the best and worst part about being a doctor?

The best part of being a doctor is the people who you get to meet and develop special relationships with over time. The worst part is the long hours, and working weekends and holidays… which takes away from your own family.

3. What do you enjoy doing for fun?

For fun, I like traveling, going boating, and snow skiing with my family. I enjoy going out to dinner, to see live music, and dancing as well.

4. How many countries have you visited?

Not sure. I think around 15. But hoping to go visit many more over time.

5. What is your favorite food?

Mac & cheese

Mac & cheese is one of my favorites, too.