Thank You CF

An open thank you letter to cystic fibrosis (CF)…

Thank you, CF, for showing me the real strength of a human being and thank you for giving me the strength to fight you. Without you, I would not believe how strong our minds are and how strong our bodies can be. I would not know that a positive mind can influence our body’s health so much. I wouldn’t believe that us humans can go through a lot of sh%# without giving up.

Thank you for allowing me to realize the difference between a small and a big problem, allowing me to know that I shouldn’t fret over the small stuff. I need to focus on what’s important. You’ve helped me realize that I can think independently and that I don’t need to rely on someone else for my own happiness.

Thank you for sending me to an amazing team of doctors who know how to help me. You’ve showed me how to trust these doctors and realize that they know how to go up against you, that their care plans work.

Thank you for the understanding of all the medical terminology that is constantly thrown around me. This has helped me become more knowledgeable about my medications and the care plans, about the treatments I need to fight back against you.

Thank you for making me realize who in my life are my true friends, those friends who put up with the inconveniences you try to create, who put up will all the gross things that come with having CF. You’ve also helped me to cherish those friends who stick around.

Thank you for introducing me to some amazing people. I have met many people through the CF community and social media, people who understand and can directly relate to a lot of the struggles I go through. I understand the good in people and communities of people who come together for causes greater than themselves.

Thank you for showing me that I need to work for the things I want. Having CF makes me work for my health and understand if I don’t, I will get sick. That hard work has spilled over into career and has made me a hard worker in all that I do in life.

CF, thank you for allowing me to realize that there is always joy to be found, despite suffering, and that without that joy, my life would be so different. You’ve given me a story to share, allowing me to spread this joy to others through my story. Because of the joy and my ability to focus on the good, I have fun and I don’t think about you as much as I otherwise would. I’ve learned to take care of you first and second, to push you away, to move on past you, CF.

Thanks for my parent’s strength to have a child with CF, for giving them the energy to walk along me in my fight against you. My parents have been my biggest supporters in conquering you, CF, and not letting you take me out of this world.

And finally, CF, thank you for allowing me not to be afraid of death, realizing that it happens to everyone, and no one knows when it will come. For showing me how precious life truly is, that tomorrow is never promised so I must live in this day, this hour and even in this moment and never take one person or one second for granted.

Cystic fibrosis is hard, is complicated, is painful, is discouraging, and is time-consuming. But CF is life changing. CF is a part of who I am. Would I still be Jackie without it? The answer to that question is “no.” My life would be completely different. I am who I am because of CF and despite CF.  Thank you for helping to bring out my best self, to make me who I am today.

Love,

Jackie

The End of the Tunnel

In 22 months I have had over 7 surgeries, have spent over 200 days in the hospital and have been to over 100 doctors appointments. And hopefully on April 23 I will have my last surgery for a long while. I feel like I am just feet away from the end of a very long tunnel I have been in. I know there will be other challenges ahead, but nothing can compare to the last 22 months.

I went in for a hip aspiration today. Basically, the doctor sticks a very long needle (after numbing of course) into the joint of your hip and pulls out fluid. The fluid is then sent to the lab and tested for infection. The hip on your “average joe” should not have fluid. Because of this fungal infection in my hip, there has been fluid. But today? Today he could barely even get one drop. Even when he injected fluid into my hip to then remove it right away, my hip sucked up all the fluid and he could not get any back. He said this was a really good sign…hips shouldn’t have fluid and mine no longer seems to. Which means the spacer has worked. I have put all of my trust in my doctors and they have continually come up with plans that work.

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A quote I found on @shinetext Instagram…thought it was perfect!

Not seeing any fluid come from my joint gave me SO much joy today and A LOT of hope. Hope that after my replacement in 9 days (Monday, April 23) I will be able to get to the top of the mountain that I have dreamed of since my transplant.

There are three things that have gotten me to where I am today…my donor, choosing joy, and dreaming.

I want to honor my donor, Samantha, and the gift she left behind for me. I know that these are my lungs now, but I will never forget who they came from. I feel like it is my duty to LIVE to honor her.

I also try to keep a positive mind and choose joy. Of course, there have been many times since my transplant where I’ve felt sad. But I pick myself back up and I just keep swimming. I find things that bring me joy and I do a lot of it…art, hanging out with my friends, shoes, shopping, food.

And lastly I have dreamed a lot…And I’m not talking the dreams you have in your sleep. Day dreams where you picture yourself places, picture yourself accomplishing things. I had a lot of times of uncertainty, but at the end of the day…I never stopped dreaming of what I could accomplish with my new lungs, my new hip and my second lease on life.

Today my doctor said, “I am in awe of you, Jackie.” And I couldn’t help but think, “I am in awe of myself for getting to this point.” This summer I am traveling to Colorado, Alaska & California. This summer I am going to do a lot of living and some of those dreams I’ve had, they are going to come true.

Until next time,

Jackie

1/25/2018 – 1/31/2018 on Instagram

As promised, I am going to post my weekly Instagram posts to my blog for those of you who do not follow me on Instagram [@pricelessbreaths] or my Priceless Breaths Facebook group.

1/31/2018

screen-shot-2018-02-01-at-10-50-00-am-e1517501117831.png“Reading gives us some place to go when we have to stay where we are” 📚🤓

Labs this morning. 💉 Lunch with @katiepaxton for her birthday! [[Happy birthday @katiepaxton!!]] 🎈🎉 Refilled medicine container. 💊 Now relaxing with my pup while reading The Encore. [[@charitytd]] 📚

Happy hump day! How do you wind down after work or a busy day? #reading #birthdays #fabfae #pricelessbreaths

1/30/2018

Screen Shot 2018-02-01 at 10.50.10 AMThis is me a little over a year and a half ago. The weekend before I got so sick…heading to my best friend’s birthday dinner. Honestly, I barely recognize the person in this photo. My face is much rounder now, my hair shorter & I don’t wear near as much makeup (except special occasions). But more than that, I’ve grown up a lot. Things that used to bother me don’t anymore. My interests have changed. And while my view on life has always been a little different than my friends, that’s changed too. I’m proud of the person I’ve become. I’ve become a better person. A less judgmental person. More loving and accepting. But I’m also still me. Goofy and weird. Some of the worst parts of me changed for the best. 💜 #thisisme #throwbacktuesday #lifechanges

1/28/2018

Screen Shot 2018-02-01 at 10.50.18 AMLaugh every day! 😂

@katiepaxton & I are the best looking laughers, we know. Her mom was just sitting down & the bench broke. We’re talking wood snapping and down they went. So funny & caught on camera!! It’s always the best when a truly happy or funny moment is caught on camera.

I hope everyone has a relaxing sunday! It’s a rainy day here in northern virginia so I am cuddling up & watching movies. What’s your sunday plan?? #sundayfunday #laughter

1/27/2018

screen-shot-2018-02-01-at-10-50-26-am.pngDo you see the glass a quarter full or three quarters empty?? …all i see is wine. 🍷

But really, life is about perspective. Getting through the hard times comes from your mind actively reminding yourself that you can make it through. 💪🏼 Are you going to look at what you don’t have and can’t do? Or are you going to look at all you do have, what you can enjoy and what you’ll be able to do when the hardships end? It’s all up to you. You’re the only one that can control your mind & your attitude. 🧠👊🏼

Spent the afternoon at a local winery celebrating @katiepaxton’s birthday! The weather was beautiful ☀️ & today was so fun! 🎉🎊🎈 (disclaimer: not my wine) Oh & the little man hanging on the glass, his name is Chad.  #winery #paradisespringswinery #glasshalffull #birthday

1/26/2018

Screen Shot 2018-02-01 at 10.50.35 AMSTAYING HEALTHY IS MY FULL TIME JOB • [Because of cf, how complicated my case is & hurdles i still have to jump] I have had an average of 1-2 doctor appointments a week since my transplant discharge in Oct 2016. Over 60 appointments in less than 1 1/2 years. That doesn’t include the weekly lab draws, hospitalizations & surgeries I’ve had. It’s been tough, but I’m tougher!! 💪🏼

My white blood cell count has been low & last night I started to run a slight fever. [[low white count + fever = bad]] The fever is gone & I’m feeling good but today I had to go in to get a neupogen shot. It promotes the growth of white blood cells. With transplant your white blood cell count can’t be too high or your body will start to attack your new organ but it also can’t be too low or you will have no immune system to fight off anything. So hopefully next week, when they draw my blood, my white blood cell count will be up! 🤞🏼

Have you ever taken a neupogen shot? If so, what side effects have you noticed?

I hope everyone has a happy friday and a wonderful weekend!! 💜💜 #whitebloodcellcount #shot #medicine #friday

1/25/2018

screen-shot-2018-02-01-at-10-50-45-am.pngI truly believe ANYONE can learn to draw. It takes time & practice. don’t sell yourself short, you’re an artist!! 👩🏻‍🎨👨🏽‍🎨🖊✒️🖍

After my transplant, I started to draw..horribly, might I add! Then @auntbeanartworks came into my life & taught me the simplest of things. We meet up at various places around town and we have a great time. [[great conversation + art = great time.]] She reminds me that I am my biggest critic and to step back & take a look at the work from afar. That has given me more confidence in my drawings. I still have a ways to go but I’m learning and having fun!

Today we met up at a pizza place and I finished up drawing my mandala. I love it & really, that’s all that matters! 💜💜 #iamanartist #mandala #artwork #micron #penandinkdrawing

Much Love,

Jackie

Health Update #2

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Thanksgiving 2017 in the hospital

It’s been a while since I’ve posted, and I know many of you have wondered where I went. I post a photo to my Instagram account everyday with more frequent updates. You can see my Instagram feed on the right sidebar under my photo. If you click on the picture, it will redirect you there. I am going to try to figure out another way to post the daily updates to my blog so you are notified. But until then here is another health update.

A lot has happened since my last health update. I wrote it all out and realized it was way too long and boring so I’m going to give the short version. I spent 6 weeks in the hospital (with a 2 day break) from October – December. I had sinus surgery, 2 surgeries on my hip, had pneumonia and was in a medically induced coma for 3 days, got rid of the pneumonia, recovered and left the hospital in time to visit the White House. I’ve been feeling really good the last couple of weeks and have been getting out to see friends and have some fun.

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White House Christmas Tour; December 2017

My hip has been the biggest issue. Originally, from MRI scans, my doctors believed I had Avascular Necrosis (AVN or bone death due to lack of blood supply). But we’ve discovered that the bone died because the fungal infection is in the head of my hip bone and has been in the joint fluid surrounding the bone. The infection has likely been there since my transplant or even before, no one knows because I had absolutely no symptoms until March 2017. Then after the washout in March 2017 I had no symptoms until September 2017. During my last hospitalization I had 2 washouts and a large hematoma (accumulation of blood) in my pelvis muscle (SO painful, let me tell you) removed.

Each time they do a surgical washout and put me on an IV antifungal, after stopping the IV antifungal the infection comes back with more force. They need to get this fungus out of my body to prevent it from spreading. And the thing about this fungus is that it is extremely rare. We are talking only 13 reported cases of it in the lungs and a little over 100 reported cases ever. When a doctor hasn’t come across something, they research in medical journals and get information from what other doctors have done. In my situation, there isn’t any of that…so they’ve been working with little to no information. They’re doing an amazing job and they’ve kept the infection confined to my hip.

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Winery fun with friends; January 2018

Yesterday my entire transplant team and orthopedic surgeon met to discuss a plan of action. I was anxiously waiting a call from my infectious disease doctor after the meeting last night. The plan is for me to finish my course of IV antifungal then get another hip aspiration in the beginning of March. (The aspiration only tests the joint fluid. If the fluid is infected that means the fungus has spread from the bone to the joint.) If that comes back clear they are going to put a spacer in. A spacer is a temporary hip replacement that has the IV antifungal stored in it. Slowly, it will release the antifungal directly into my hip. The reasoning behind this is to 1. Get the infected bone out of my body (they cut off the femoral head just like they would in a hip replacement) 2. Make sure the fungus is completely eradicated. I will have that for 4-6 weeks. By the time the spacer is ready to come out it will be April. Then comes the actual hip replacement. I’m seeing my orthopedic surgeon on Monday for more information about the spacer and hip replacement so that’s all the information I have for now.

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Eating a beignet at Bayou Bakery in Arlington, VA

I’m not gonna lie, on the phone with my infection disease doctor, Dr. K, and after we hung up, I cried. Why? Because I am missing my best friends Bachelorette party, plans to visit my brother in Boston and aunt in Colorado. My life is again being put on hold and plans cancelled. It was hard to hear and very upsetting. But I know in my heart that this is the right plan. I know this fungus needs to get out of my body and I’m not going to risk it spreading (and risk my life if it does). It really sucks but I let out all of my tears last night and I’m ready for what’s to come. I’m going to stay positive and find things to keep me busy. Before I know it, I will be walking with my new hip this spring. I’ll be OK…I have been until now after all.

Peace Out 2017!

2017 has been a roller coaster ride. I have climbed, & stood tall, at the top of many mountains and I’ve fallen into valleys. I’ve experienced suffering, sadness, hope and happiness. Sometimes all in the same day. I was stranded in one place & I have traveled to different places. I thought I was horrible at art & I felt like an artist. We lost a dog (Scrappy) & we gained a dog (Fae). I learned I will eventually need a kidney transplant & we learned that my mom and brother are both matches. I found out I need a hip replacement & I found an amazing surgeon. I lost friends & gained new friends.

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Boston, MA – July 2017

What I am getting at here is that with every “bad” thing that has happened to me, something good has also happened. Sometimes not right away, but good things have always come. So we can’t sit on the negatives when surely something good is soon to come. While I know challenges are ahead in 2018, I made it through 2016 and through 2017…I can make it through anything. One year is only 1/26 of my life…that is only 3.8%. And as each year comes that percentage will become less and less. So in time, these challenging years will be a tiny percentage of my life as whole.

I have 8 goals for the new year and I want to be held accountable to reach my goals. So I am making all of them known.

1. Every week, write down at least 1 positive thing that has happened to me. Save them and read them to myself on 12/31/2018.

2. Partake in at least 5 fundraising/volunteer events throughout the year. Whether it is at an event or raising awareness for a cause.

3. Keep a positive mind.

4. Get a new hip and use my new hip to exercise more.

5. Travel to 3 places I have never been before.

6. Go on my first hike since transplant.

7. Make it to Wilmington, NC to learn more about where my donor, Samantha, is from.

8. Take a cooking class & cook more often.

I hope each of you have learned and grown during 2017. And I wish you the most health and happiness during 2018. Stay positive, stay happy and stay strong!! And remember that good things are always to come!

And with that I will say, Happy New Year!!

Some photos from 2017:

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First Lungaversary celebrated with friends
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Getting asked to be in my donor’s sister’s (Sara) wedding
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Fab Fae
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Stone Tower Winery fun with friends
Peace 2017
Peace out 2017!

The Lung Transplant Process

Have you ever wondered how a lung transplant happens? My transplant surgeon answered some questions about the transplant process from beginning to end.  This is a general overview & is not the exact process taken for all transplants. This process may also vary depending on the hospital where the transplant is taking place.  He explained this process in an understandable way. Whether you have had a lung transplant or not, I think you will find it interesting.

The transplant pulmonologist and transplant coordinator (who is usually a nurse practitioner or physician assistant) receive a call from the organ procurement organization (an organization that evaluates and procures deceased-donor organs for transplantation) regarding an offer for an organ. They then determine whether or not the donor organs are sufficient for donation. Some organs may be viable, while others may not be. The transplant surgeon then receives a call from the pulmonologist and coordinator with basic information regarding the donor. The surgeon will accept, decline, or ask for additional testing to be done. If they accept, they proceed with the transplant. The procurement surgeon (a transplant surgeon can do procurement and the actual procedure but they never do both for the same patient) drives or flies with two operating room nurses to the other hospital to bring the organ back to the hospital where the surgery will take place. There are four operating room nurses for the recipient and two operating room nurses for the donor. Cardiac perfusion runs the heart/lung machine if it is used during the operation and they help initiate ECMO support post-operatively, if necessary.

New & Old Lungs
My old, CF, lungs and my new lungs

The process of taking out old lungs is relatively straight-forward but depends on the recipient’s underlying condition. Cystic fibrosis lungs and sarcoidosis lungs are generally very difficult to remove due to chronic infection and inflammation. The lungs are quite literally fused to the walls of the chest cavity and have to be peeled away. (This was the cause for excess bleeding post transplant in my case.) Conversely, COPD, chronic obstructive pulmonary disease, and PPH, primary pulmonary hypertension, are generally quite easy. They dissect out the pulmonary artery (the artery carrying blood from the right ventricle of the heart to the lungs for oxygenation), the pulmonary veins (the veins that transfer oxygenated blood from the lungs to the heart; there are two or three per side) and the bronchus (any of the major air passages of the lungs that diverge from the windpipe). If they are doing a double lung transplant, this process is done for both sides through a clamshell incision (shaped like a curved ‘W”, and is typically cut just below the breasts). If a single lung transplant is being done then it is through a thoracotomy (incision on the side of the chest towards the back).

My surgeon does most of his single lung transplants and all of his double lung transplants on bypass support. There are many reasons for this – his feeling is that it minimizes blood loss, keeps the heart stable while they’re working, and lets him take both lungs out at the same time during a double lung transplant. The alternative is bilateral sequential lung transplant off of bypass but this means that at some point, the new lung and one of the old lungs is in the body at the same time. This leads to potential contamination of the new lung. Not many people do double lung transplants this way in the modern era.

Time is of the essence, in two senses. One, they try to time their explant procedure to coincide with the arrival of the donor lungs. They don’t want a patient sitting on bypass for hours waiting for an organ. Conversely, they also don’t want the donor lungs to arrive before they are ready to put them in…which leads to the second component. In general, the lungs need to be put in the recipient within 6 hours from the time they were removed from the donor. This is why donor organs are allocated on a regional basis. It would not be possible for a recipient in California to receive donor lungs from Virginia. There are centers that push this number up to 7 or 8 hours but the majority of centers look at 6 hours as the maximal tolerable ischemic time (a restriction in blood supply to tissues, causing a shortage of oxygen and glucose needed to keep tissue alive).

The most critical point in the surgery is the airway anastomosis (connection between the recipients airways and the donor lung airways). Blood vessels bleed so if there is a problem its pretty obvious. The bronchial anastomoses do not – if there is a technical error, they don’t know until sometimes weeks later.New lungs are put in by matching the bronchus to bronchus, pulmonary vein to pulmonary vein and pulmonary artery to pulmonary artery. They are all matched up and sewn end-to-end.

A dry run is when it is decided that the donated organ is not viable. This happens 25-30% of the time in lung transplants and less than 10% of the time in heart transplants.

My surgeon’s longest double lung transplant was 8 hours and shortest single lung transplant was less than 2 hours.  This is the amount of time he performs the actual transplant with other medical professionals assuming roles in the operating room before and after.

The advances of modern medicine are quite remarkable. To think that one person can donate an organ to another person is just incredible. Seventy-five years ago, no one would believe heart & lung transplants would be happening.  So far in 2017, my hospital has performed twenty-some lung transplants.

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!

Meeting My Donor’s Family For the First Time

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Samantha’s family & my family

“Hello” I answered the phone. Recognizing the number as one from Fairfax Hospital. It was the social worker. It was weird that she was calling but I had my one year transplant clinic appointment coming up & I assumed she wanted to prepare me for some things we would discuss. “I have a letter for you from your donor’s mother. Would you like me to email it to you?” I was in shock, I hadn’t sent my letter yet. It’s not often that a recipient receives any response from their donor’s family and it’s even more rare that the donor’s family writes first. The only word that came out of mouth was “Yea.” With shaking hands, I immediately went to my email and started to read.

“Dear Recipient,

It is with both sadness and joy that I write you this letter. My daughter, my heart passed way 12 months ago, on June 19, 2016.”

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Angela listening to me breathe

Tears started to run down my face. I continued to read about Samantha. I felt sadness that she had passed away and sadness for the grief her family had endured over the past year. My heart hurt for them. But I was grateful that she left me the gift of life through a new pair of lungs. It was a while before the tears would stop. I immediately called my mom. She thought something bad had happened because I was crying so hard. “I received a letter from my donor’s mom,” I cried into the phone. She came home right away and I read her the letter. She too cried with me. I called my brother, Byron, who lives in Boston. After I read the letter all he could say was, “Wow” and I could hear the tears in his voice. I read that letter many times that day & I still read it often today.

I was planning to hand write my letter to her family and send it after the 4th of July but decided that, since I had received one first, I wanted to send mine out right away. I changed a few things & sent my letter only hours after receiving the letter from Angela. And thankfully I did because the Donate Life Donor Family Advocate was going out of town for the next week & would not have been available to send the letter on to Angela, had I sent it after she left.

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Samantha’s sisters & I (Allison, left & Sara, right)

One thing Angela & I wrote in our letters was that we wanted to meet each other. I was excited she wrote that she wanted to meet because this is something I always wanted. To meet my donor’s family and thank them in person. From the moment I found out I had a lung transplant, my mind immediately went to my donor and since that day I’ve thought about them every single day. Who were they? What did they like to do? I even wondered what caused their death. I now knew that my donor’s name was Samantha, some things she enjoyed and I would later find out more. I was anxious to plan our meeting. We decided on September 9th because my brother was going to Spain for 3 weeks in August and of course we wanted him to be included in the meeting. We decided not to communicate before then so it was two months before I would get to talk with Angela again.

We pulled up to the complex where the Donate Life office was, our planned meeting spot. Emotions I have never felt before started to flood my body. I was nervous, excited and even scared all at the same time. “What would they think of me?” “Will I say something stupid?” Thoughts similar to those you would have before a first date started to run through my mind. This was WAY more important than a first date, though. Then I started to think, “Am I ready for this?” Immediately followed by, “Of course you’re ready for this.” Butterflies started to go crazy in my stomach.

We waited outside until we got the call to head up the elevator. We walked through the glass doors of the office. There was candy in a small bowl near the coffee counter – I ate two laffy taffy’s as I prepared myself for the meeting. We were told it was time. I walked down the hallway and into the arms of Angela, Samantha’s mom. We both cried into each others shoulders. Neither of us had words for the moment, just tears. Angela had told me that for the first time in a year she felt Samantha’s presence. That meant so much to me, that I could give Angela something so special. I let Angela listen to me breathe…hear Samantha breathe for me. Most importantly, I let Angela talk to me about Samantha. The donor family meeting was so important and special to me. The day was all about Samantha, though, & the great gift she left behind.

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Samantha’s dog, Benelli Rose

After our initial meeting, I invited Angela and the rest of her family back to my parent’s house for some BBQ. I had been really nervous to ask for the fear that they would say no. They accepted the invite! We spent the next 4 hours hanging out. We sat out on the screened-in porch all night. I learned more about Samantha and they learned more about me. We shared photos and stories. Samantha’s youngest sister, Allison, is only 16 years old and at first she was quiet. But as the night went on I felt her becoming increasingly more comfortable and talkative – it was so special for her to open up to me. I also got to meet Samantha’s sweet sweet dog named Benelli Rose. I am usually afraid of bigger dogs, but she was so sweet, gentle & kind!

Towards the end of the evening, I stood in the hallway of my parents house with Sara (Samantha’s younger sister) and she said that she felt so comfortable around me. Like we had know each other for more than just hours. I felt the same way; it was an instant bond. A bond that we will have forever.

The night flew by and some parts are even a blur. There is a saying about not remembering everything that someone says, but you will remember how they made you feel. I don’t remember everything we talked about that night but I do remember how I felt. I was excited and happy. I remember laughing & smiling a lot. I also remember feeling sad & holding back tears at times. But most of all, I remember how comfortable I felt all evening.

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Samantha’s parents & I (Ray, left & Angela, right)

Angela, Ray, Sara & Allison & I have kept in touch. We met in Richmond last weekend and it was so nice to see them again. I hope to find my way down to Wilmington, NC one day to meet the rest of Samantha’s family (especially her grandmother) and her friends. I want to see where she grew up and enjoy some of the same places Samantha enjoyed.

Meeting Samantha’s family has been the greatest experience of my life. I encourage all recipients to write a letter to their donor’s family. Even if you don’t receive a response, letting them know how thankful you are is so important. And it could just mean the world to your donor’s family. If your the donor’s family, I encourage you to be open about writing a letter to the recipient and the possibility of meeting them. Angela has told me that she felt angry about Samantha’s death and when she received my letter she felt peace. Knowing that I gave her that, was so so special to me. My decision to write her and meet was definitely the right one.

If you’d like to read my letter to Samantha’s family, click here. To read Angela’s full letter to me, click here.

 

 

Mountain Weekend 2017

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The McDonough’s mountain house.

A few weekends ago some friends & I spent a weekend in Old Fields, West Virginia. It was a weekend of completely disconnecting and having some good old fashioned F-U-N. There was no internet and absolutely no cell service. It is important to have weekends like this where we don’t bother with our phones and we connect with those around us in a different way. We arrived at the mountain house around 11:30am on Saturday morning after a beautiful drive through small towns and a lot of windy mountain roads. Some people had already arrived Friday night, so we were greeted by friends.

The goal of the weekend was also to raise money for charity. We auctioned off the beds on the property. If you didn’t win a bed, you had to camp out in a tent. We had “beer bitches”…Shawn’s younger sister and her friend would get beers (or anything you wanted), at a price. We played drinking games & for each person who participated, the McDonough’s would donate $5.  I’m thankful to them for hosting the weekend!

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Emily aiming for the target.

We started the day shooting bow & arrows and an assortment of guns. One of the rules of the mountain house is that you cannot shoot anything after any drinking which is why this took place first. Let me tell you, shooting a bow & arrow is a lot harder than it looks. I couldn’t get the arrow anywhere close to the target! There was a bb gun, shotgun and handgun. The shotgun & handgun were so loud, ear protection was extra necessary! I was surprisingly good at shooting the handgun and hit the target both times I fired, pow pow.

The day continued as the ladies hung around the picnic area, chatting and listening to music. We gossiped about the ins & outs of our lives and caught up with each other. It is not every weekend that we are all together so we really cherish these times. The guys played games in the yard and goofed around, what guys do. We had hot dogs and chips with helluva good dip for lunch, food I have craved a lot after my transplant.

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Most of the girls.

We played dizzy bat…you chug a beer and then spin around for ten seconds with your head on the top of bat, while the other end of the bat is on the ground. You’re extremely dizzy after and try to find enough coordination to hit a ball. Most people fall straight to the ground! With my hip problems, I had an excuse to watch and laugh at everyone’s tries.

We brought out the bier stick…It is filled with beer and while you press the end of the stick against the wall, beer is shot into your mouth. A friend, Kevin, challenged people to use the bier stick and he would specify a donation amount for each time. We sang karaoke, ate hamburgers for dinner, danced and laughed some more. We ended the evening with a bon fire. Because of my transplant I cannot be near burning wood but I wanted to be able to enjoy the bonfire & guitar sing-a-longs. So I sat up wind and wore a mask. I didn’t spend too much time by the fire.

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The bonfire, blazing!

The sky was so clear, it felt like you could see every star in the galaxy. I laid with my back on a bail of hay and looked up. The weekend was coming to an end but it had been such a fun time. My mind immediately went to my donor, Samantha. How grateful I was to her for giving me a second chance and for my ability to spend this weekend in the mountains with great friends. I thought how amazing and how precious life truly is. At that moment, I knew she was looking down on me, smiling. And I was looking to her, smiling back.

 

 

We ended up raising $1,066! Here is a video I made from the weekend, enjoy!