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!

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The Letter From My Donor’s Mom

I want to share with you my experience meeting my donor, Samantha’s, family. But first I want to share with you the letter I received from Samantha’s mom & later in the week I will share with you the letter I wrote back to Angela. With Angela’s permission, below is the letter I received on June 30, 2017, 1 year and 9 days after my double lung transplant.

“Dear Recipient:

It is with both sadness and joy that I write you this letter. My daughter, my heart passed away 12 months ago, on June 19, 2016. She was pronounced and went home to be with God. 12 months ago you were given the chance to live again, and for that I am so very proud of my daughter Samantha.

Samantha
A picture of my donor, Samantha, given to me by her mother, Angela.

Samantha grew up in Wilmington, NC. She was 20 years old when she died. She was a bright girl, and loved everyone. She met no stranger, even though I always taught her “stranger danger” LOL, she didn’t listen. She didn’t care if you were rich or poor, in her eyes everyone was the same. In those short 20 years of Samantha’s life she grew up surrounded by friends, family and her beautiful and sweet dog Benelli Rose (now my Grand Dog). Samantha loved the beach and that is where she spent a lot of her free time.

Samantha was a daughter, Granddaughter, sister, friend, and soon to be Aunt to my beautiful Grandson Brayden. She couldn’t wait for him to be born. Samantha was not a shy girl. She knew her faults and she accepted her imperfections. She laughed at herself and took advantage of opportunities to grow every day. She was not perfect and she was the first to admit it.

The day my daughter died a piece of me went with her. I have spent every second, minute and hour thinking of her. I think about how she will never have the chance to marry, or be a mother herself. I wonder how her life would have turned out, would she have been a doctor, veterinarian, teacher, or a stay at home mom. As parents we expect to die before our children, so when you have to bury one of them it’s like your burying yourself. I have somewhat come to grips that it’s time for me to move on, although it will be easier said than done, but I have two other girls, my Grandson and my husband to live for.

Since Samantha’s passing you have crossed my mind a lot. Samantha was always such a giving person, and her desire to be an organ donor was but one example of her selflessness attitude towards life. I guess I have some peace knowing a piece of her still lives on in five people that I hope she was able to save. The thought of my daughter’s heart continuing to pump and her lungs continuing to breathe is so heartwarming to me.

I guess I am going to end with the hope that you will allow me and my family to meet with you. I would like to tell you more about her and how big her heart was. Maybe it’s too much to ask, but I hope you will allow me this last chance to hear her breathe for someone else, for you.

Sincerely yours,

Angela”

Wow, Communication!

It was Sunday June 12th, 2016 and I sat enjoying a Wendy’s chicken sandwich, fries & a fountain coke. My friend Gabby had brought it, at my request, when she came to Inova Fairfax Hospital to hang out with me for the evening. This was my last memory.  A rare and unexpected fungus ignited my cystic fibrosis lungs. After an all night effort to keep my lungs breathing, I was intubated and placed in a medically induced coma. My life was saved that night by an ICU pulmonologist.

My next memory, sometime in mid July (I am not sure the exact date). I lay in a bed in the Cardiovascular ICU, turning my head to the left and seeing my mom in the hallway. My mind was blurry, I couldn’t move my limbs, my body was still. Tubes were coming out of my chest, my neck, my arms, and a tube was coming from my mouth, breathing for me. I couldn’t talk. I couldn’t move even if I wanted to. I learned that movement would come back in time but not right then. What happened? Where was I? Why couldn’t I move? My eyes looked left, looked right, up and down and back again.

My mom hurried in telling me she loved me, telling me I had a double lung transplant. “The doctors saved you. You had a lung transplant. Do you understand?” Apparently this was the 5th day she’d come in to tell me this. The medication they use in a medically induced coma has an amnesia effect. I understood what she was saying but still had so many questions running through my mind that I wanted to ask, but couldn’t. The only way to communicate was raising my eyebrows, they told me, to only “yes” or “no” questions. So I raised my eyebrows, signaling that I understood.

The following weeks, patience was tested.

Is the pain below your waist? Is it this foot? Is it that leg? Communicating only with yes and no questions is frustrating. Like a puzzle that sometimes goes unfinished. I just wanted to be able to tell them what was hurting or which way I wanted to be situated. My family adapted and quickly learned my facial expressions when I was annoyed, unhappy, or in pain. We are meant to communicate with our mouths, being specific. I couldn’t do that.

I became the best listener. I would overhear my doctors in the hallways talking about my medical care or my mom talking with visitors. When my friends came to visit they would sit there and tell me what was happening outside the hospital walls. Sometimes I would try to mouth words. Some were understandable while others not. I would feel frustrated they didn’t understand and would mouth more drastically thinking that would help. It only made it harder. Finally I would give up.

Communication tests people’s patience. Communication prevents confusion and let’s people relay their thoughts. Communication saves lives and ends wars. Communication is key to, well, everything. I was so happy when I was able to write, even though chicken scratch, with hands just beginning to reconnect with my brain, just beginning to move again.

The feeling at the time was helpless but I knew that I was going to make it through. I knew it would take a long time but one day I would be able to enjoy my new lungs. That’s what happened but those memories of last year remain clear in my mind.

Have you ever been in a situation where you had a hard time communicating?