November 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.
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.
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.
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.
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.
Let me tell you about “my team” while I’m in the hospital.
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!
“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.
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.”
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.
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.
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.
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.
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!
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.
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.
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!
On Monday I shared with you the letter I received from my donor, Samantha’s, mom. Today, I share the letter I wrote to her. I had wanted to hand write my letter (I had already typed it up) and was planning to snail mail it after the 4th of July holiday when I received Angela’s. I decided to reply that same day via e-mail because I was so anxious to get the letter to her. Next week I will share with you my personal experience meeting Samantha’s family for the first time. My letter to Angela:
I’ve imagined writing this letter to you ever since I woke up and found out I had been transplanted. I’ve been curious about who my donor was, the type of person they were and their interests. I’ve thought of what I would say and the words I would use to thank them and their family because a simple “Thank You” is not enough. I’ve had my letter drafted, prepared to send after the 4th of July holiday, when I received yours. I had always wondered if I would hear back from my donors family. One of my biggest fears about writing is that I wouldn’t receive a reply but decided I had to write because they needed to know how their loved one saved me and how grateful I am.
Thank you for telling me about Samantha, I can only imagine how lovely of a girl she was.
Samantha saved my life on June 21, 2016. I received both of her lungs.
I’m 25 years old and was born with a genetic disease called Cystic Fibrosis that causes sticky mucus to build up in the lungs, causing frequent lung infections. These infections scar the lungs and cause a decline in lung function. I have lived my life as normal as possible despite my disease…attending college, having fun with friends and starting a career. There have been plenty of large speed bumps along the way but I just moved over them and kept going. I knew transplant was going to be in my future but was not expecting it for a few more years.
My lungs took a rapid and unexpected turn for the worse in June 2016. I was placed in a medically induced coma on June 13, 2016 with the hope my lungs could rest and work again on their own. I made the doctor promise me that I would wake up again. My lungs completely failed me days later and I was placed on an external heart and lung machine (ECMO), doing all the work for my lungs. My doctors decided the only hope that I would ever wake up again was a transplant. And so, with the help of my parents and older brother, they listed me for a double lung transplant. Without Samantha’s lungs, multiple nurses told me, I would not have made it another night. I was very very sick.
I won’t say this last year has been perfect, I was in the hospital for 4.5 months after my transplant and I had to build the strength to do everyday life things again like walk and hold a fork to eat. But I have made such great strides and am going to the gym regularly, something I despised before transplant because I would become out of breath. I am back at work part time after 11 months off – it is such a great feeling to be contributing to something. I am hanging out with my family & friends who mean so much to me. I have travel plans for this year to visit my brother, Byron, in Boston and my aunt in Colorado. I enjoy doing art and have a new found interest in taking pictures/videos on my GoPro and creating movies. I have Samantha to thank for this. I want you to know that my body is accepting Samantha’s lungs and I have not had any signs of rejection. Her lungs continue to breathe for me.
A day hasn’t gone by where I haven’t thought about my donor and their family. Now, I finally have a name. I know every day I have here is because of Samantha. I will know that for the rest of my days. I call her my angel looking over me everyday.
I want you to know the type of person I am. I could sit here and write what I think of myself but I wanted you to know from an outside perspective. So I’ve asked a couple of my closest friends to write honestly about me. Here is what they said:
“Jackie makes LOVING life look effortless – because for her it really is. She’s a person who has a true lust for life and all the adventures it brings. She’s the person who won’t give up when there are obstacles in her way or the odds are against her. She’s the person who will, despite everything, find something, some-reason to love life and honestly, she’s contagious in that way.”
“Jackie’s thirst for life is far greater than anyone I’ve ever known. In the midst of her constant hardships with CF, her optimism shines through as she continues to feel immensely grateful for all of life’s gifts. Having had the experience to attend a best friend reunion vacation with Jackie recently brought an insane surprise amount of joy to all of us. The miracle that she is with us today is one we are forever thankful for. I can’t wait to see what life accomplishments are in store for Jackie. She is an absolute warrior, and her strength is inspiring to all. The quote ‘keep on keeping on’ is one she lives by. And she does so with a huge heart, and a smile on her face.”
“I met Jackie when I was 12 years old when she was randomly assigned to my soccer team. At first I thought who is this wild child. She had so much energy it was almost annoying. I remember the day we became friends. We were hosting a soccer party at my house and all he girls on the team were downstairs while the parents were upstairs, with the exception of Jackie. It felt wrong so I went upstairs to talk to her and started a friendship that grew into family. Jackie is my only friend brave enough to tell me like it is and kind enough to want the best for me the same way my parents do. She will tell me if a boyfriend is no good, demand I ask for a raise at work because she knows my worth and refuses to ever let me settle. People like Jackie help the ordinary see all the extra out there in the world. She has taught me to value myself and live everyday to the fullest. She may be a control freak, but its only because she knows exactly what she wants out of life and isn’t afraid to go after it.”
I am happy that you wrote you would like to meet, because I also would like to meet you and your family. I want to hear more stories about Samantha and what she liked to do. More about her big heart and what seemed like amazingly kind soul. I am going to ask that they release my personal email address to you so we can continue to communicate that way. Thank you so much for writing Angela.
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.
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 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.
My first health update on my blog. Where do I even begin? A lot has been going on!
Let me start with my lungs. My last pulmonary function test was 60%, my highest since transplant and my highest since before college! My x-ray and CT scans have all looked clear in recent months which means there aren’t any spots of pneumonia (bacteria causing mucus to stay trapped) which is also a really good sign. I’m hoping I can get my lung function above 65% with some good old fashioned exercise. I haven’t been doing a ton of exercise recently because of my hip…but my aunt and my friend Gabby’s mom have graciously donated me an elliptical and seated bike (both low impact and not hard on the joints). They will be put to good use and I am oh so grateful!! If I had to give my lungs a grade, I’d give them a B. The reason is there is always room for improvement & for the fact that I have been coughing up some nasty looking stuff every now and then recently. We believe this sputum has been coming as drainage from my sinuses and not necessarily my lungs. Which is actually a good thing, even though it’s not great.
This leads me to an update about my sinuses. A recent nasal swab showed that my sinus boogies are growing a couple bacterias and fungus. Bleh!! My sinuses have been a huge issue my entire life. It comes with CF. A little anatomy…The sinuses are considered part of the upper respiratory track which leads to the lower respiratory track…aka the lungs. This makes it especially important to keep them free from bacteria to avoid any possible drainage infecting my new air bags. To try to clear out the bacteria & fungus I will start IV antibiotics, change up the anti-fungal I am on, and have a sinus surgery next week to give them a good old fashioned “power washing”. We’re hoping this will get rid of all those bad buggies! This is usually an outpatient surgery but because of my lung transplant, I will spend one night in the hospital for monitoring.
My kidneys are stable. I am currently listed for a kidney transplant but the process is much different than a lung transplant and takes much much longer. The average wait time for a kidney is about 4 years!! It’s very complicated but I’ll try to explain the best I can…My current kidneys are working just enough to prevent fluid build up and remove any extra minerals, like potassium (too much in your body can actually cause dangerous heart rhythms) and phosphorus, from my body. If I stay very well hydrated my creatinine level (a reliable indicator of kidney function) will stay around 1.8-2 (normal level is between 0.5-1.1). I regularly see a team of nephrologists (kidney doctors) who work together with my lung transplant team to ensure my kidneys do not endure any additional damage and to try to keep them functioning for as long as possible. That is what I love about INOVA Fairfax Hospital, teams of all different types of doctors work together for their patients. And they are all friends, you can tell from the way they interact with each other.
Moving down to my hip. To be blunt, it’s not good. This was probably the toughest pill for me to swallow when I found out how bad it actually is. I have avascular necrosis (AVN) in both my hips but far worse in my left. AVN is essentially the death of bone caused by a lack of blood supply and is a possible side effect of prednisone. It causes a lot of pain at times & a limp when I walk. I have transplant friends who are 5+ years out and have never gotten this…So how did it happen? My doctors believe that the extremely high doses of prednisone I had last year (to save my life) combined with not being able to move for months caused the AVN to develop quickly. Unfortunately, there is no cure for this and my hip will need to be replaced. Timing is crucial though. The orthopedic surgeon wants me to be as far out from transplant as possible. But if I we wait too long there is a chance the ball of my hip will collapse in on itself which causes a lot of problems with the muscles and makes the replacement more difficult. Not to mention a lot more pain! So, my doctors & I decided we would aim for January. This will allow me enough recovery time to be able to enjoy my summer with friends but also far enough out from transplant. And time to zap the bugs in my nose! We do not want any type of infection having any opportunity to make it’s way into my new hip.
I think that about covers it. This all may sound a lot worse than it is but to me, if my lungs are healthy and I am breathing, then I am one happy girl!! Yesterday I spent the day in DC with my friend Amber. We had such a fun time finding amazing wall murals and eating some great food. We decided to try out a new shared biking system called MoBike. The nice thing about these bikes is that they can be parked anywhere, you don’t have to find a station to dock it once you’re done. Highly recommend. According to the MoBike app we rode for about 2 hours and covered about 13 miles. I was breathing pretty hard up the inclines and had to walk my bike some, but I made it! That should give you an idea as to how my lungs are doing and my energy level. Both good!!
I hope everyone reading this has an amazing rest of their week! Stay healthy & happy, my friends. 🙂