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

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New Hip, Who Dis?!

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New hip as seen via x-ray

A week ago yesterday I had my total hip replacement. And everything has gone so well. *knock on wood* I’m used to some complication happening so it is definitely a breath of fresh air for everything to go as planned. And this hip is WAY better than the temporary hip (called a spacer) that I had for 6 weeks before my surgery. The spacer was very uncomfortable and often painful. I basically laid around for 6 weeks, relaxed and did a little PT. I’m a little sore from my hip replacement but overall, I don’t have pain. I’ve been working hard on physical therapy exercises & walking. Starting yesterday my dad & I will be walking up and down the driveway everyday. Walking is the best exercise because it strengthens my muscles and increases my endurance. I’m using a walker because it allows me not to walk with a limp and I don’t want to get into a bad habit of walking with a limp. I’ve been having issues with my hip since last March. And they got really bad in October, which is when we decided I, for sure, needed a hip replacement. I was introduced to Dr. Hawken and immediately felt like he was the right guy for the job. He has done an incredible job and is an amazing doctor. So THANK YOU Dr. Hawken!!

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Practicing stairs at the hospital

I recently officially resigned from Lidl. In the last 2 years I only worked for 5 months, 8-10 hours a week. Then I had the issues with my hip and decided I needed more time off. So, I technically haven’t really worked in 2 years but was technically employed and on payroll. I’ve been doing a lot of thinking recently about what I want to do with my life and I’m not sure if finance is what I want to do anymore. So, I didn’t want to string Lidl along if I wasn’t sure that I wanted to come back and they also wanted a definitive answer of when I would come back, which I did not have. We ended on VERY good terms and I definitely plan to keep in touch with my team. That company is AMAZING and has been so good to me. So if there is a Lidl store near you, SHOP THERE. They deserve to succeed here in the United States. [I recommend their wine, chocolate & cheese.] I also know for sure I want to live a little with my new lungs. I really haven’t been able to because of all the complications I have had. My summer is full of a lot of travel & I am so excited!

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Walking the driveway with my dad

If I could do anything with my life it would be motivational speaking and starting a non-profit (if you have any experience in this, I’d love some help). I also plan to volunteer more with the CF Foundation and Donate Life/United Network for Organ Sharing.

Speaking of the CF Foundation, I was selected as an honoree for “DC’s Finest.” “The Cystic Fibrosis (CF) Foundation honors a select group of men and women from cities or regions across the country that are committed to professional growth through a guided fundraising and awareness campaign. These honorees exemplify strong leadership qualities, are active in their community and have excelled in their chosen professions. The honorees will enjoy many benefits throughout the campaign, primarily the knowledge that they are helping to better the lives of children and adults living with cystic fibrosis.” I have pledged to raise at least $2,500 dollars by August 22. If you’d like to contribute to my Finest Campaign please visit: https://metrodc.finestcff.org/jackieprice.

 It is also CF Awareness month. So if you head on over to my Instagram page, I am sharing facts about CF every day. 🙂

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.

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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.

The Letter to My Donor’s Family

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My donor, Samantha’s, mom & I
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:

“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.

Sincerely,

Jackie”

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.

Why not me?

I learned a valuable lesson from my dad. Dad & IHe is 59 years old and has had muscular dystrophy for the past thirty years of his life. We understand each other & I think it’s because, although very different, we both have medical conditions.

People often post about loved ones never asking why, seeming to make them appear stronger. But the fact is, they probably internalized the question “Why me?” at some point after a difficult diagnosis. They just chose to move forward, accept the life they were given and make the best of it.

It’s human nature for the thought to come across our minds and we shouldn’t feel bad about it. We also should never sulk on it, either. Because the answer to “Why me?”, it will most likely never be found.

When I was laying in the hospital bed last year, only able to move my fingers, unable to breathe on my own, the thought “Why me?” ran through my mind. I cried. At first, I cried every single day. I stared into space, a lot. I felt emotions I still can’t even comprehend or express. I was so thankful to be alive and to see my mom’s face when she walked into my hospital room every day. I was also in a lot of pain, physically and emotionally.

So when “Why me?” crossed my mind, I remembered what my dad had said. “Why not me?” I wasn’t exempt from bad things happening. I am no more or less special than the person who was sitting next to me on the train on Sunday. No more or less special than anyone. This is what I think people forget. Sure, not everyone ends up in a medically induced coma for a month and even fewer people have to experience daily life with Cystic Fibrosis. But we are all equal. And no one is exempt from life. If you’re fortunate enough never to have to deal with something bad happening, then I am jealous. But I don’t thing that person exists and if they do, let me know.

So next time you ask “Why me?” in a bad situation, don’t feel ashamed about it. But always follow it with “Why not me?”. You at least will have an answer.

I Forgot to Introduce Myself

Hi everyone! I just realized I’ve never introduced myself. So here it goes…

My name is Jackie Price and I’m a born & raised Virginian.beach It’s the greatest state (in my [non] humble opinion) because it’s a short drive to the mountains and the beach (which I love)…the best of both worlds. On the weekends I’m usually hanging out with my family or friends. I’d say (I think my friends would too) that I’m the quirky one of the group and maybe a little weird. Or a lot weird, it just depends on who you’re asking. I ask a LOT of questions. But hey, I’m a curious person & if you haven’t given me enough information what else am I supposed to do? I put A1 Steak Sauce on my rice…and on my steak, of course. My favorite food? Yupp, you guessed it, rice. Or sushi. I can’t eat raw fish anymore so I stick with the cooked stuff now. People usually think I’m about 8 years younger than I actually am. (I’m 26.) But in 10 years I’ll appreciate that, right?! I own a [semi] hairless dog named Fae.

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Fab Fae.

She’s so ugly she’s cute. My favorite store is Target, basic right? Wegman’s might tie though. How does one love a grocery store so much!? I actually work in the corporate headquarters of another grocery store (that I also love…I can’t tell you which one, you might show up at my office one day…), so maybe that’s how. And if you’ve never had Popeyes onion rings, go. right now. and try them. Oh yea, and I have cystic fibrosis & had a double lung transplant last year.

So here I am telling my story to the world (or whoever decides to read my blog).

I decided to start blogging because I have not been dealt a royal flush or even a pair in the game of life. I’ve been through a lot of $%*# in my 26 years on earth, more (a lot more) than some people ever will in their entire lives. And you know what, that’s ok. Because life isn’t fair. But I’m still here today, remaining positive and living my life. I’ve learned a lot over the years, about myself and life. I know that I can help others who weren’t dealt that royal flush make it through anything. Or someone who’s just having a bad day. We can make it over any speed bump, or even mountain, together.

One day I’d love to do inspirational/motivational speaking. (If you’re interested in hiring a speaker for an event or assembly, contact me. I’ve been told I’m pretty good (I’d have to agree) & I’ll do it for free…for now.) So that’s the goal I’m working to…& I’m a hard worker so I know I’ll get there.

So, come follow along! No but really, enter your email address in that little box under Follow My Blog and click Follow. You won’t regret it!

Have any more questions for me? Post a comment and I’ll answer it!

 

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?

Compensation

Today is the first day of fall 2017 and the first day of my blog.  I found this post my Dad wrote last year while I was still hospitalized from a double lung transplant I had on June 21, 2016 with complications.

September 1, 2016:

“Wow, what a summer. Thankfully, it is almost over and fall will soon begin. My father died in mid-September when I was a young child. I have always loved the spring for the obvious reasons of better weather and the proverbial rebirth of life but my dislike for fall had to do with the negative emotions connected to my father’s death. But now there will be joy in the fall when my bonnie lass returns to the warm embrace of her home. The falling leaves and the cool air will no longer be companions of death but of life. Mr. Emerson has an essay on compensation, which seems to be appropriate. We may not always be given what we want or need at a specific point in our lives but life, at least it seems so to me, has a way of compensating us in other ways. I have been compensated twice now in the fall, the first time when Jackie survived her birth trauma and now having survived her lung transplant. Isn’t life amazing? I look forward to the crisp air and the falling leaves, they will be auguries of life, of the new life my daughter will be embarking upon with renewed energy and vigor. What a testament to her spirit. Twice now, I have been witness to her indomitable will to live. I am so proud of this amazing human being for her zest for life, for the many friends she has, and for her desire to be a productive member of our society in spite of the hand life dealt. What a gift I was given to be her father, I truly have been compensated.”

After the initial shock of finding out I had a double lung transplant, I was excited. I made plans to run for miles and go on long hikes in the mountains. These are things I had so badly wanted to be able to do but couldn’t due to coughing spells and feeling out of breath due to cystic fibrosis. With new lungs and the ability to breathe again, I have gratefully made plans and accomplished some of them. But due to an array of complications, I physically can’t accomplish running miles or hiking mountains right now.  Namely, the medications that saved my life have harmed my hip-joint. It acts up badly these days and eventually will need to be replaced.  Yes, a hip replacement and I’m only 26 years old, but I am going to look at that as small stuff after all of the big stuff I’ve been through.  As human beings we have a tendency to initially focus on the negatives, what we don’t have but want or think we need but can’t get. We all have to bring our minds around to think that in time, things fall into place, think about all that we CAN do and all of the ways life has compensated us.

With my favorite season, fall, rolling around I am focusing on compensation, on how I truly have been compensated. Here are some of the ways:

  1. Being alive
  2. Supportive friends
  3. Having a great job
  4. Great food in awesome restaurants
  5. An amazing Mom & Dad

 

How have you been compensated in life?