MOHS Cancer Surgery

Skin cancer surgery is something I’ve been dealing with for about five years now. Im not sure of the exact percent, but I want to say its somewhere around 60-75% of transplant recipients form some kind of cancer. When you receive an organ, you’re put on medicines called anti-rejection meds. Those meds, unfortunately, are what causes cancer. In my case, it’s mostly squameous cell carcinoma. Since being diagnosed, to date, I’ve had over 150+ spots biopsied and surgically removed. Each and every spot was cancerous. I’ve actually never once had a spot biopsied that has been negative for cancer.

Not all post-transplant is as aggressive as mine. My situation is pretty severe. I go back for MOHS surgery about every six weeks. The day begins around 7am. Its fortunately an out-patient procedure so although it takes all day, if all goes well, I’m able to be discharged home at the end of the day. Once I’m in the surgical room, the doctor does a quick skin check where we determine how many spots we want to cut out that day. We decide this by prioritizing what spots have grown back, continuously growing and which ones are the biggest. We pick about 3-7 spots. We biopsy the chosen spots and send them to the lab across the hall. It takes about an hour to determine 1) if the spot is cancerous and 2) how far along the cancer is (early stages or further along).

When the results come back, we begin surgery. The surgeon cuts each of the spots down to muscle and tissue. It looks like a circle has been scooped out of my skin. (Pictures on my instagram highlight: MOHS. – Be warned, though. They are GROSS.)

Once we’ve cut pretty deeply, the team takes scrapings of the skin tissue around the area and brings them back to the lab. They test the sample to see if theres still traces of cancer inside. If not, they come back in and stitch up the deep holes. If there are still traces of cancer, we repeat the same process. The surgeons lay me back under a bright light and continue cutting deeper to try and clear the area of disease.

MOHS surgery usually lasts all day. I think the earliest I’ve gotten out was around 5:00pm. Tuesdays surgery last until a little after 7. After which, I’m all stitched up, usually in about 5 places, and able to go home and recover. The following two days are the hardest – the most painful. The ativan they give me during the surgery to calm me down along with the lidocaine (which never actually works // Tuesday the doctor said we used 4x the normal amount for someone my size and I still felt the cutting) have all worn off. So, it’s really the next few days afterwards that are the hardest.

There is a way to lessen the amount of cancer — a way to be able to live my life without having this surgery every 6 weeks — CHEMO. A lose/lose. I’ve attempted this before but stopped for a reason. Fertility: the next post I’ll be exploring. When on chemo, getting pregnant or doing anything fertility related is extremely dangerous. I’ve decided to start the process of freezing my eggs right now and explore the possibility of having a family someday. When my egg retrieval is completed, my doctors highly suggest I begin the chemo. It’s not such a simple decision, though. This certain chemo, because of the severity of my cancer, isn’t just a course of chemo that will kill my cancer.

I will be on anti-rejection medicines for the rest of my life, which means my body will be producing this cancer for the rest of my life as well. That also means that my chemo, unlike typical chemo, will also be for the rest of my life. Hair loss and everything that comes along with chemo wont be temporary for me, and thats a very hard pill to swallow. I could take my chances by continuing to do these surgeries every six weeks, but that only increases the risk of infection and gives the cancer a much greater chance to spread deeper, into my bones and organs, and form into stronger cancer, like melanoma.

A lot of people are under the impression that once someone has an organ transplant, they get healthy again. Thats not totally false, but its certainly not true. A transplant is a second chance at life, but no one ever said that life would be easy. If I had to do it all over again, I wouldnt change a thing. Being able to breathe with two new lungs has been a dream I never imagined would be possible for me. I’ve done more living and allowed myself a quality of life I never had before, but my God, it is not easy.

Stay tuned for my next blog about the start of my fertility journey and more about life after transplant. As always, I’m forever grateful that you’re here. I’m always up for questions and conversations. Thanks for reading. For your love, support and prayers.

Grateful to be alive and able to share my journey,

Sam, xx.

Diabetes, CFRD & Dexcom:

Glucose level: Above 600 😳!

A huge percent of CF adults form CFRD. Mine was formed as a result not only from pancreatic insufficiency (which is the organ that produces insulin in your body to regulate sugars normally) but because high doses of steroids are known to cause significantly high sugars.

I’ve suffered with diabetes now for 10 years but never stayed on top of it. There were days I’d prick my finger to take my sugar and like this photo, my sugars would be so high that a true number wouldn’t even pop up on the screen. Once your number reaches over 600, only a blood test from the hospital can show an accurate level.

For years, because of how difficult it is for CF patients to gain weight, I ate with no dietary restrictions. That included lots of carbs and sugar. In the beginning, high sugars felt the same as normal sugars, until things got out of control, my pancreas started struggling more than ever before and let’s face it.. I started getting older. Your body doesn’t bounce back to health in your 30s the way it did when you were 19.

When my baseline daily sugar started to run in the 300s, usually higher, my vision started to change. I felt tired, lethargic tired, all throughout the day. My balance was off so much I couldn’t walk a straight line on my best day. Having sugar well into the 3, 4, 500s, is so similar to the feeling of standing up after a few shots 🥃 and I knew I couldn’t keep pushing this aside. I’ve fought too hard for too long to go down to something that I could control with insulin, diet, and a little discipline.

When my endocrinologist suggested a dexcom, I had the same reaction as when my doctors suggested a port. There was no way I was going to have another device attached to my body for others to see.. to judge.. to ask in public why I’m beeping (dexcom hooks up to your iPhone and sends a signal to your phone when your sugar is high or low… it beeps… OBNOXIOUSLY LOUD)

I didn’t know then that on multiple occasions, my @dexcom device would save my life in the middle of the night.

So the dexcom is a small device that has a needle on one of its sides. I usually keep it placed on my upper arm but if I want it hidden I can pierce it through my thigh or stomach. The needle updates my blood sugar all throughout the day and connects my my blood sugar level to my iphone so I can constantly see if my sugar is too high, too low, or in range, at any time. A normal blood sugar level runs approx. in the 90s / low one-hundreds. I’m pretty sure the magic number to consider you a diabetic is above 200, but it’s concerning if it goes higher than about 150.

When my sugar was consistently running around 400/500+ daily, I knew my pancreas was failing (one of the most effected organs of Cystic Fibrosis). I also knew that because of my transplant I’m going to be on steroids (prednisone) for the rest of my life. Prednisone raises blood sugar, so this problem wasn’t going to go away.

Before agreeing to wear the dexcom device, I was pricking my fingers to see what my blood sugar number was nearly every hour. My poor beat up finger tips were covered in hundreds of little prick marks that would sting at the touch of a lemon, or hand sanitizer. Sometimes, my fingertips were so bruised and punctured, they would bleed if squeezed even an hour after pricking. After I agreed to wear the dexcom and skin-tape adhesive around it, pricking my finger became something rare. There was no need now. Each dexcom device/needle lasts for 10 days until it needs to be replaced with a fresh needle. I can shower with it- swim with it- basically do anything and not even remember it’s there (until it starts beeping, of course. Then everyone is reminded it’s there).

Ten years ago when I was first diagnosed with CFRD, the doctors said that unlike typical diabetics, my pancreas did still make insulin. Instead of being dead, it was kind of like my pancreas was asleep and couldn’t produce the proper amount of insulin that I needed to regulate my sugars. Presently, my pancreas and body are now insulin dependent.

Before I eat anything, I count approx. how many carbs I’ll be consuming at the time. I get ONE unit of insulin for every 5 grams of carbs that I eat. So, say I want a bagel in the morning. Usually my bagels are around 50 carbs. In comes the math 😖: 1 unit of insulin for every 5 carbs / 50 carbs in a bagel, means that I would administer a shot with 10 units of insulin into my blood stream to balance out the carbs from the food and help my body regulate the sugar.

Now, here’s the tricky thing about diabetes in CF and Post Transplant patients- nausea. Due to a lot of the medicines and treatments I do daily, CF and the digestive issues it causes, I throw up pretty often – here’s why it’s so dangerous. Insulin lowers your sugar. If I get those 10 units of insulin for that bagel, but then I end up throwing that bagel up, my insulin has nothing to use itself on and so it ends up bringing my normal sugar level down exactly as it would if it was working with food, except now it’s not. Thats when diabetes gets scary. The feeling of having an urgent low takes everything out of me. It’s like a phone battery draining and once it drops, it drops fast. If my level drops too low, it can be deadly. Personally, I think a low sugar is significantly worse than the feeling of a high sugar. It’s feels like all of the sudden the energy is being poured out from you. Dizziness, sweating profusely, mixing up words, unable to think straight, shaking, chills, a total body shutdown. There’s been times I physically couldn’t move my legs to make it to the kitchen for juice. When your sugar drops low, it can be a life or death situation. Your body needs sugar. Juice, honey, anything to bring that number up to stabilize you.

Living with diabetes feels like a seesaw. It’s all about balance and believe me when I say it is defeating sometimes.

There’s been a number of times I’ve gotten insulin after counting my carbs and either didn’t eat enough food for the amount of insulin I’d given myself, or ate the correct amount but was sick afterwards. On two occasions, I went to sleep with sugar in range. During the night, I’ve dropped as low as a little under 30, and it was continuing to drop. (The device tells you if your sugar level is trending downward or up). My dexcom app blared in my ear to alert me that I was scarcely low. It sent my sugar to my phone and continues to beep until the sugar is corrected. With a sugar so low, sometimes it takes every ounce of strength to get yourself something to stabilize your body. The good thing about my dexcom is that although it’s obnoxious, it’s effective. It’s usually loud enough to wake a partner or family member who can see the number for themselves just in case it became too low and the person with diabetes has passed out, which happens all the time.

I can’t help but think and be grateful for the world we live in today. Even though diabetes can be and still is very much a dangerous and deadly disease, I live in a world during a time where I’m able to track my sugar through an app on my phone! How incredible is that? From an illness where so many have lost their lives.. mine has been saved through technology.

Diabetes, no matter the type, is a heavy burden and it’s really tough. Fortunately, so am I and the entire diabetes community. Today & everyday I’m grateful that I can rest a little more peacefully knowing my Dex has my back.

Always feel free to reach out with questions or comments and as always, thanks for reading.

Sweet Sam 🍭

PICCS & PORTS:

Having a chronic illness or post transplant health issues usually means frequent IV antibiotics and hydration. I’ve been getting PICC-Line IVs my entire life. A PICC is a more temporary IV used for hospital stays or courses of antibiotics. It usually goes into the bend of your arm but can really be put into any peripheral vein. Then, a catheter is guided up into a larger vein that leads to the heart. it looks like a long piece of spaghetti.

The problem with PICC lines is that they’re not gentle by any means. They cause scarring of the veins each time one is placed, and for patients who needs IV antibiotics frequently, thats a lot of times. It makes it tougher to navigate the catheter through scarred veins. When that happens, it’s time for a port.

The idea of a port was brought up to me back in 2009, while I was still seen at a children’s hospital. I absolutely wanted no part of it. At this point we were using something like an x-ray machine to search for possible veins that I could still use for PICC lines. Sometimes, the IV nurse would get as far as up to my shoulder with the catheter and we would get stuck trying to painfully push it through scar tissue. It was grueling. Laying down, head turned the opposite way of the arm, squirming, feeling exactly where the spaghetti-like line was traveling and exactly where it stopped.

When I finally decided to get a port placed it was a few years later. I was getting sicker and daily IV antibiotics were needed to keep me alive if/until I would get my transplant. A radiologist is the one who does the procedure. A small port, about the size of a quarter, is placed beneath the chest wall (Usually. My first port was placed in my upper arm. Not very common, but possible). I expected to hate it. I expected it to be another visible clue on my outward appearance that helped other people piece together that I wasn’t healthy. After my first time using the port, I had never been so happy about going through with it. The convenience was something brand new. It saved me from getting stuck multiple times for bloodwork. It ended long days in the PICC-line placement room, guiding a rigid catheter up a scarred vein. I wholeheartedly recommend a PORT over a PICC to anyone asking if its more sensible when it comes to treatment.

Once monthly, if all is going well, I keep up with PORT- maintenance. An at-home nurse (I’ve had the same nurse for like 20 years lol) comes out to my house once a month and “accesses” the PORT. That means a needle has been inserted into the placement of my chest wall and can now administer IV antibiotics and hydration. Thats what you can put INTO the Port. For bloodwork, your nurse simply pulls back on an attached syringe and can produce a blood return straight from the line. After a few times of being accessed, only the first pinch can be felt.

My chest port has been one of my easy buttons when it comes to live with terminal disease. Blessed are the days we can manage most of our illness at home with ports and IV-at-home-nurses. Back when I was in high school, a course of IV medicines meant at least a 10-day hospital stay. Today, I dont’ even have to step foot into a hospital to get accessed to my PORT and start receiving the treatment I need.

Today, I’m thankful for my port and the quality of life that its allowed.

Always here to answer questions-

Thanks for reading.

Sam xx

All The Feels Tonight: What A Time To Be Alive For Cystic Fibrosis Patients.

This blog entry is about my brother. I would think twice about posting this if he was active on any social media platform but he’s not so its getting published. He wouldn’t want me making a big deal over him. My brother, Tommy, used to be the one in the limelight. The outgoing one. The one who never hid from the disease that we share. Our roles reversed completely in our adult years. I used to keep everything about this disease hidden like my life depended on it. I once dating a guy for over a year without admitting to him that I suffered from Cystic Fibrosis. If I had an IV for at home antibiotics, I’d wrap my arm in a sling so you couldn’t see it. I’d make up all sorts of stories about how I pulled an arm/shoulder muscle or why I was wearing long-sleeves in July. If I was admitted to the hospital, I was canceling dates saying something came up last minute or I forgot I was scheduled to babysit the neighbors kids. Anything to hide the truth. While I was doing this, my brother was doing TV interviews with local and nationwide news channels about the wish he made through The Make A Wish Foundation to keep our elementary school from closing. He made the cover of Scholastic Magazine. He was only eligible to make that wish because we suffer from terminal illness. So, even with as badly as I wanted to hide behind this disease back then, I almost couldn’t no matter how hard I tried.

Then things switched up. Tommy got into the mindset that CF wasn’t going to stop him from doing anything he dreamed. He looked at it as a challenge to be accepted and overcome. He wanted to be just as able and capable as any healthy man or woman with or without illness. Our ways of coping were fire and ice. So completely different in every single way. My brother would go without his daily nebulizers if the timing was inconvenient. If he was running late for school, medicines got skipped so that he could enjoy breakfast whereas I was waking up two hours earlier than other classmates in my grade so I never missed a morning medicine. Treatments were top priority. For me, if it was between breakfast or my hour of nebulizers and equal amount of chest PT, I was going to school hungry.

Looking back now, I realize I often say and even think that the reason for my openness about CF, organ transplant, cancer, practically my whole life, is because I’ve been so close to death. Thats part of it, but it’s not completely why. I watched Tommy live without holding back his whole life. He was honest with himself and he had nothing to hide to anyone. He didn’t feel the need to be accepted or seen as “normal,” like I struggled with. I watched my brother literally explore around the world. He’s done more traveling and seen more places than I ever imagined possible for either of us. In fact, he’s been more places than most people I know with zero health conditions. Tommy’s been all across Ireland, Paris France, St. Thomas, Mexico, Nashville bars, Colorado mountains, Killington Vermont skii trips, scuba diving Florida Keys. He’s gone sky diving. He’s given himself permission to do any and everything he can. He’s allowed himself to love and be loved. And over all these years, people thought he looked up to me- his older sister. Little did anyone ever know I was the one looking up to him (and not because he’s nearly a foot taller)

I spent so much of my life hiding. Falling in love felt selfish to me. What if someone fell in love and this disease ran its predicted course? I couldn’t let that happen. Thoughts of any kind of future seemed so off-limits to me that I hardly ever let myself even wander about things considered rights of passage to someone my age. Tommy was never afraid like me. Or at least he’s never shown it.

My brother might be younger than me but I’ve learned some of my greatest life lessons from watching his determination to live every moment. I see now that all along he’s been the real motive for the excitement and adventure that I’m so full of today.

I titled this entry “All The Feels Tonight,” because I was given the grace to notice and appreciate how far we both have come. Tommy is more private about his personal life these days, but I couldn’t help but share the hope and pride I’m feeling after this beautiful day within our family. That brings me to the second part of this title: What a time to be alive for Cystic Fibrosis patients. Being diagnosed with Cystic Fibrosis back when we were born in the 90’s was practically a death sentence. Because of that cruel reality, I really never envisioned what a future would look like. Never imagined it for myself, I should say — but for Tommy? I would have given my own life to ensure more time for his.

I carried this huge weight every day since I could comprehend that my brother and I would suffer — and as expected, progressively get worse with age. It was going to be ugly. I’ve lived with anxiety and guilt in the deepest pit of my stomach fearing all Tommy would see through the agonizing ruthlessness of CF. It seemed inevitable that witnessing our disease in action would be torture to our family and each other. Whats worse was that I would think to myself: he’s probably seeing a preview similar to what will happen to him next – over time. Sometimes I even wondered if I would rather him be the sicker one out of us two. Not because I wanted to be healthier, but because sometimes it’s honestly worse to see someone you love suffer so deeply than it is to suffer yourself. I never wanted him to see me struggle. It’s difficult for me to even recall some of the real life moments I have in my memory of Tommy being so disturbingly close to losing his big sister. We were (and still are) so much alike in countless ways, but My God, there were times we couldn’t have possibly been more opposite.

It’s hard not to have a tendency to think negatively when you’re suffering. As much as I wanted my brother to have a full life, my heart broke into pieces when I would let myself think of the cruelty of this disease and what it had waiting ahead.

People often tell me: Samantha, you continue to beat the odds. Physically, thats true. Personally, I always stacked the odds against me until Tommy showed me that it’s not the least bit selfish to allow yourself the freedom to live this life to the fullest. He is the one who has beaten all the odds. Like today for example, the original reason I chose to write about him tonight — August 12th, 2021, my brother and his soon to be WIFE closed settlement on their first home. And yes, you read that right: his soon to be wife. Tommy didn’t sell himself short and hold back from living and loving out of fear. He’s not so worried about the future because he’s doing everything in his power to create his own — to build his future instead of fear it. To write it instead of read it. Watching my brother’s bravery (and stubbornness) going after what lights his soul is how I’ve learned to share my own stories with less fear of judgment and more hope to inspire. Watching my very first best friend defeat the obstacles stacked against him overwhelms me with a type of joy that literally is just inexplainable. This kid has set the example for me and after following in my younger brother’s footsteps, I’m less self-conscience about my inabilities and so extraordinarily thankful for all of the abilities that I do have.

I feel kind of sorry for the old me. For all the time I spent completely unable to imagine either of our lives being so full of excitement, love and faith. Tommy and his fiance, Kim, sent a picture of them outside their new home this evening. Instant tears steam down my face. Seeing them two with hopes and dreams and plans for the future is without a doubt one of the most proud moments of my entire life. The image of my brother and sister-in-law standing on their new front steps, their dog beside them & a SOLD sign makes me wish I could go back in time and talk to the girl I used to be — the one that could only dream of a life like the one my family and I are living today. I’m not sure that even then I could fully believe half of the possibilities that we have overcome and turned into realities throughout our lives. That’s why I say this is the time to be alive. Because in a world where our life expectancy due to this disease was brutal and agonizing, we made it whole. Life didn’t just happen to us – with the support and unconditional love from our family and God, we made something broken, beautiful.

My brother is my only sibling. We grew up in a world only each other could understand. We’ve witnessed our mom sit bedside in a hard chair throughout week-long hospital stays. We’ve taught each other tips and tricks for breathing attacks and grew up side by side on the living room couch watching our favorite shows and getting nebulizers together. We’ve watched our dad work his ass off in sweltering heat, pouring rain and ice-cold frigid nights, as a trash-man to provide our family with quality health insurance- the same insurance that covered my million-dollar organ transplant. This disease has brought us laughter and it’s brought us pure and painful heartbreak, too. Together, we’ve watched too many other CF patients leave this world too soon. Some often younger than us. All fighting until thier last breath.

I’m in awe that I’m presently witnessing Tommy create his future in all of the ways he’s able. If I take a step back and look at our lives from an outsiders point of view, I so clearly see that in this moment, the present, we are living out what we’ve prayed so deeply for in the past. It’s here. Our future is here. Now. And instead of fearing it, we claimed it.

I’ve heard more and more over the past several years that the way I live my life is admirable and I’d be lying if I said I wasn’t proud of all that I’ve seen, felt and experienced, Though the truth is, I’m not sure I’d ever have the courage to fight for a future had I not learned from watching Tommy take control of his own destiny in all the ways that he can. The most fulfilling reward though is how we’ve worked together to deal with the parts of our lives that are out of our control. It simple. We give it up to God. My brother and I are living proof that we are all in the hands of a loving God. Our blessings far outweigh our burdens because we’ve been given the greatest gift of all: life. Our lives are all the more worthwhile knowing we walk this road together.

Today, my little brother beat the odds, again. Tommy and Kim begin a new chapter in a book that has no ending in sight!

This life is extraordinary. Immeasurably extraordinary. There is deep pain, sickness, despair, hopelessness. But without those, we would never know the wholehearted, life-changing kind of elation that fills your heart once you’ve overcome.

If you’ve taken the time to read this, I so sincerely appreciate you and ask that you send up a quick but special prayer for my brother and sister-in-law, that they always remember to stay rooted deep in faith, pouring love into their new home and making memories to last a lifetime- however long that may be.

Samantha, xo.

How Oils Seriously Did Change My Life

https://www.myyl.com/samantha-g

I’m pretty sure everyone and their mother knows that I’m a customer of a company called Young Living. The company is mostly known for their essential oils and diffusers but boy is it so much more than that. Each of these oils have unique properties and purposes. They’re not just living room smell-goods and aesthetically pleasing center piece diffusers. I gave the young living company a try last year when I was dealing with severe cancer, procedures and treatments. I took a chance on it as a last resort for any kind of relief. I was nauseous all the time and vomiting most of the time. I was on the most powerful of anti-nausea cancer drugs that there are — ondansetron, compazime, IV hydration. Sometimes they worked and sometimes they didn’t. Just the same as the medication I was prescribed for anxiety : it did work sometimes, and other times it didn’t. Then, there were the pain meds, and they have a lot of side effects for something that works sometimes, but other times didn’t. I’m being genuinely honest: after I tried essential oils and plant based options — guess what: sometimes they worked! And sometimes they didn’t lol. Here, though, is why they are my first go-to.

On the days I would swap a compazine pill for diffusing peppermint oil with ginger and lemon, I felt clear-minded. I felt the same amount of relief from nausea as the prescribed options but wasn’t experiencing any of the side effects. I could have taken the pill too and that would have been fine. But there was just something more calming to me about making a “scent-tent” (rub oil in palms, bring hands to nose in a triangle shape and peacefully inhale) in my hands with pure oils from the earth, healing ya up with a sweet aroma and natural relaxation.

On the days when I diffused lavender, an oil blend called stress-away, orange and vanilla, or rubbed some valor on my forearms, wrists or behind my ears, I was feeling the same calm come-downs from anxiety that I was feeling when the medication worked. Except, the oils, the plant-based cbd and aromatherapy wasn’t also giving me brain fog and clouding up my memory. No feeling lethargic. No waking up “blah.” No headaches or grog. Just the same amount of the good stuff with less of the bad stuff.

Little by little I started switching my [normal] popular products to the more [natural] plant-based products. Same results were happening. Between the two, symptom wise, my results were about the same, but the [clean] stuff was giving me all the good results without any of the bads – none of the side effects I suffer from when I take the prescription meds. There wasn’t much worry anymore about doing my best to maintain cleanliness when out in public, specially with my health because the new products I’m carrying around are all certified clean and fun and most importantly.. they were working. Thinks like nourishing hand sanitizer and a surface spray made with cloves and bacteria fighting essential oils to wipe down carts and tables while out.

It was so cool in the beginning and still is, to watch the ways the low-tox living worked equally as great as all others but without anything harmful to me or the people around me.

I kept swapping things out where I saw a chance to. Sometimes just one thing or change and then other times a ton of switches and changes at the same time like my makeup and skincare. Im not going to lie to ya and even pretend like I even know what the “bad things” are in best selling skin care and cosmetics, but I do know how to google a few listed ingredients between what I was using before, and the clean savvy line of makeup that I use now. It’s infused with essential oils, is higher quality and equivalent coverage – except the top name brands I can sleep in overnight without harming my skin… and lets be honest, I’m not getting anything younger so I need to be more cautious of what I use as cosmetics.. not just from a cancer standpoint but from an aging point of view lol

One thing after another, just continuing to feel better and better. fresher. cleaner. calmer.

I started leaning on my young living products more and more until “shopping young living” became “living a new lifestyle.” I don’t think I could ever go back to the heavy, pore clogging foundations and body lotion that I was using to moisture my scarred skin that was doing the complete opposite.

Everything I started to use built my trust enough to try something new. Find something new I could swap to that made me feel better. Most things I preferred Young Living – there were some things I didn’t though… and thats okay. No one’s perfect and just the fact that I know I’m trying where I can, makes me feel safe in itself.

But then there was this! Which, if you just think about it, it makes total sense. I’ve worn perfume my whole life and never wondered and also never cared what was in it if it smelled good. I should’ve done better in life with this — I feel like because I grew up with Cystic Fibrosis which is a lung disease, so I shouldn’t have been wearing harmful perfumes in the first place but I’m only human. Well, at every doctors visit that i’ve ever been to since I was a little girl, I take this test called a PFT- Pulmonary Functions Test and the strength of my lungs is measured in a percentage. Theres LOTS of factors that go into that percentage. Exercise, enviorment, weight, lots of things… SO I’m not saying I switched out perfumes bottles and arosal cans and switched to essential oils and suddenly my lungs got all better lol BUT I DID switch out your typical store brand “perfumes” and fragrances and only used my essential oils in their place. I credit doing this among a lot of other things to my PFT results this past year — the highest they’ve been since years before my lung transplant 7 years ago.

I could go on all day honestly about the ways I’ve seen positive changes in my life since using YL products, and I’ll tell you the ways it didn’t always work too. Maybe they will work for you! Maybe they wont. But you wont know if you dont try.

I have a personal link to help you get started as a YL customer under me and for those of you who just like to shop without having to reach out and catch up with a friend, lol, this is your time to shine. Now, you can simply click my link and shop on your own while still allowing me to receive credit! Although, I could talk EO’s for days so please do still reach out 🙂

I cant tell you enough just how much I love sharing this side of my life. Finding this health and wellness, natural, plant-based, clean product lifestyle has brought so much relief to things I’ve struggled with for years. Sometimes I get a little self-conscious, like I might be sharing too much or might come off “salesy”, but in reality thats not the case at all. I enjoy sharing so much because I deal with so much involving my health. I’ve lived my life with Cystic Fibrosis, a double lung transplant, diabetes, skin cancer, anxiety, ugh – you get the picture. All of those things wreak havoc on my mind, body and spirit. Finding these oils and this lifestyle has brought such peace to my world that I feel like sharing is just the obvious thing to do.

So heres a couple ways you can get started like I did and see for yourself the benefits and changes you can bring to you and your families lives. 

You can #1: Go to the youngliving.com website. Browse around and think of how any of the products you might be interested in can help benefit you. Reach out to me! We can get you started with what I suggest will help you best from what I’ve used personally. Either get started with a starter kit and become a member using my ID # 24439708

OR, #2: Shop my link directly- no contact needed! if you see me promote something that you decide you want to give a try.. click my YL link – no starter kit or commitment needed! Just want to try the CBD muscle rub? Done deal. Add to cart and be on your way!

YL has really made lots of changes lately to keep up with the times and create a shopping experience the way it should be — quick and simple.! Im going to try adding my personal link to this blog but if it isnt clickable – always know you can go straight to my instagram page and click the link in my profile — that’ll bring you to my link on becoming a young living customer and on your way to a cleaner, safer, healthier and happier lifestyle for you and your family 🙂

— Sending ya all my love —

Sam.

https://www.myyl.com/samantha-g

The Night Of

6/24/2014

I visit my doctor again- it’s the third time this week I’ve come to the University of Penn. He tells me we need to get on the transplant list. There are no other options left. These lungs have no other choice. I’m depending on an organ donor to save my life— if I even survive a transplant. I’m not sure at this point that I’m strong enough. My spirit is trying hard to scrape up any motivation to continue living as long as I possibly can. Every 24 hours counts. I have to keep fighting. These next few weeks are so crucial.

Someone in my family tells me about this activity that worked for her. It’s a way to call upon the Archangels. You write a wish, a petition, on a piece of paper. Light a candle and put an apple on the same table. You burn your paper wish in the fire of the lit candle and let the smoke disappear outside into the wild air. I would have tried far more strange things then that at this point. I would have tried anything. So, I do that and hope for the best.

I already visited Johns Hopkins Center in Maryland for a second opinion and received the same results. I’m from right outside Philadelphia so it wasn’t too far of a haul.

I’m naive, which makes things better for my mind at the time. I’m mostly thinking, it may take some time but I’m going to get lungs, right? No matter how many times I’ve been told that death is nearby, I feel like there’s so much more to my life. I feel in my bones that something is coming. Something big. Something life changing. And it was. It was June 23, 2014. I’m sitting on the couch getting a nebulizer. I’m eating an ice cream magic cup in between. It’s like a high fat, high calorie ice cream cup that tastes like it’s name, magic. It’s to help me gain weight and I eat probably 3-5 a day. It’s equivalent to a meal. My mom walks in the door shaken up. “Sam…”

A few days before this, mom accidentally backed her car up into mine. It left a nice little cracked hole in my bumper.

“Omg, mom. You hit my car again?” I ask, annoyed. I’m out of breath from that simple sentence.

“They just called. Eric, from the transplant center. Sam, It’s time.”

Tears fill my eyes right away. I’ve been told before there may be false alarms. I might be called for a transplant, get to the hospital and then could be told the lungs didn’t pass inspection and I could be sent home. I’m trying not to get my hopes up. I’m shaking. What if it’s not a false alarm? What if this is it. What if someone just died and selflessly left the most beautiful gift of all behind on this earth for me to continue to live. This can’t be happening. Am I dreaming?

“Come on, get up, let’s go! We don’t have much time. We need to get to Penn now.”

We had to take my grandfathers car. We weren’t prepared and moms car didn’t have gas. We wouldn’t have time to stop. Never did I expect only 20 days after being placed on the list that I would actually be called. But, transplants go by priority, and my life depends on this. The surgeon says these look like a perfect match for my size. I’m less nervous than I expected but the feeling was nothing I could possibly explain. Tonight could change life as i know it. Tonight, I could die on that table.

I’m in the backseat of our 20 minute ride to Penn. Mom and dad in the front. I’m texting my closest friends, Alicia.. Alexis. “I just got the call. I need my prayer warriors now more than ever.” I don’t have it in me to text anyone else but I know Alicia will get the word out for prayer.

I walked in through the emergency room with my mom and dad. My brother met us there and they put us in a transplant waiting room while they tested the lungs and prepared for the surgery. My closest family started to pile in. The Grays: the family that would soon become my “team” – my strongest source of support. We had a full waiting room. I wore my high school navy blue sweatshirt. O’Hara. My time in high school was such a big part of my short life. If i don’t make it through this surgery I want to be remembered in this sweatshirt.

My brother is my best friend. He seems cool and collected. He’s always so strong. How does he do it? He’s also in his high school sweatshirt, Monsenior Bonner. I ask him, “What if I don’t make it through. You know you’re my best friend, right? I love you so much, Tommy.” He has Cystic Fibrosis too but he’s always been the healthier one. He’s never had to even consider a transplant. I hope he stays like this forever.

He pulls me close, he’s taller and stronger than me. I’m under his arm and for the first time tonight I feel safe. “I know, kid. You’re the strongest person I know and you’re going to be fine.” I don’t know if he even believes himself, but he gives me hope.

They come in the room. “Samantha, we’re ready for you.” I have to leave my family now. I have to go off alone with these doctors and nurses that I don’t know and depend on them to save my life. They are going to break me open by the chest, take out these failing lungs and replace them with a selfless organ donors lungs who had just passed away maybe an hour or so ago. Their family mourns in the waiting room directly across from mine.

Surgery lasted all night until the morning. They were almost a complete match but the lungs had to be trimmed a bit to fit inside my chest. It’s June 24th and I’m alive. Im alive.

Im not out of the woods but I survived.

I’m alive.

I’m coming out of heavy anesthesia. Family surrounding my bed and scattered around the room. There’s tubes all throughout my chest and stomach. Thick plastic tubes. Like an octopus. I’m hooked up to what looks like a million machines. There’s beeping, there’s whispers, there’s tears of joy and apprehension. I can’t believe it. I blink a few times before I fully open my eyes for the first time. Through the most extreme pain and discomfort, I’m breathing and it feels like there’s nothing in the way of my breath. It feels so foreign to me. I feel like, despite this deep ache and severe chest pain, my breathing is different than anything I’ve ever felt in all twenty some years of life as I knew it. I think to myself, so this is it? This is what it feels like to breathe like a normal human being? Softly, I look up at mom bedside. “Mom? I did it? I did it. We did it.” There’s tears in her eyes. “We did.”

I say we because I feel like she almost had a transplant too by how much she’s been right by my side through years of sickness and sadness. Years of suffering. I’m weak and tired. My childhood doctor from my children’s hospital is here. Dr. Schidlow. He’s guided & treated me through life with Cystic Fibrosis.

My adult pulmonologist, Dr. Dorgan, is in the middle of the room embraced in a moment holding my brother in a huge hug. Both their cheeks have tears rolling down them. My sweet, favorite Sister from Camilla Hall is here beside my bed with a holy communion host in a shiny golden case. My faith hasn’t ever been stronger. Im alive.

I’m weak and soft spoken but I ask her a favor as I’m coming out of grogginess. A memory I’ll keep inside my heart & mind for as long as I live. “Will you sing with me?” I ask her. My favorite church song is “Here I am Lord.” I’m certain she knows the words and I look into her crystal blue eyes. She takes my hand in hers and sings along with me, “Here I am, Lord. Is it I, Lord? I have heard you calling in the night. I will go, Lord, if you lead me, I will hold your people in my heart.”

It took everything I had to push those musical words out but I needed to acknowledge my faith. I’m saved. Will I survive this recovery? Right now it doesn’t matter. The doctor says the first 72 hours are the absolute most crucial.

It may have only been a few hours since coming out of surgery but I am now a bilateral lung transplant survivor. An organ transplant recipient. Life as I knew it up until this point is about to drastically change. Life as I knew was over. My second life had started and I make a promise to myself from this day forward to live every single day like it’s my very last.

Daily Act of Excitement

Hey! It’s been a while! Thanks for taking the time to read what I have to share- let me know what ya think 🙂

Living with a terminal illness everyday of your life is something a majority of people will fortunately never understand. You would think that most healthy, able individuals would be the ones living their lives to the fullest. Admittedly, I used to be so envious of “normal” people. I used to think, before receiving my double lung transplant and cancer diagnosis, that I drew life’s short straw. Common, everyday people seemed to be able to do all these things that I wanted so badly: to be able to attend school without frequent hospital admissions, hiding IV’s under long sleeves in summer, missing weeks of learning material, falling behind and an inability to socialize with friends. I used to hide absolutely every detail of my health as much as I possibly could out of fear of not being accepted or being thought of differently.

“Normal” people could do all the ordinary things that I for so long wished I could be capable of. The thought of being able to hold down a job without having to take a leave of medical absence for hospitalizations, surgeries, 24/hr nebulizers, constant doctors appointments- sometimes 3/4 a week!

I could only imagine what a real relationship felt like without constantly feeling guilty knowing that because of my health, I would only serve as a burden, not of a blessing. These are just to name a few. Growing up, I just wanted to be like everyone else. I prayed for predictable.

I realize now that what I considered a lifelong death sentence is actually my greatest blessing. I feel like maybe I’ve had an upper hand on enjoying life all along. People who suffer from chronic illness, terminal illness, incurable illness, like me, have a different view on life. A serious case of “do not put off til tomorrow what you can get done today.”

I know this gift is a direct result of the suffering I’ve fought throughout my entire life, but knowing that every next hospital stay always holds the potential to be my very last, I cram as much life into my days as humanly possible. Had I been born healthy, lived a life that hadn’t consisted of watching others with my same condition pass away all around me, I might be ok with living a routine life. But I’m not. I don’t pray for ordinary anymore. I pray for extraordinary. So many people with a terminal diagnosis don’t have the luxury of being able to say with confidence, “Oh, I’m still young, I’ve got plenty of time.” Wont ever be able to say without a hear full of doubt, “I’ll have a family of my own someday.”

All I’ve ever known was to despise time because getting older only meant getting sicker. But the blessing is just that.

You know how they say “you always want what you can’t have?” Ironically, I feel like I’ve done the most living because I’ve been told all my life that I’m dying. It’s a hard realization, but I think back on all of the absolutely extraordinary adventures and memories I’ve had in this life and I am so beyond proud. In comparison to the normalcy I’d always thought I wanted, I wound up living and crafting a life that is the complete opposite- a wondrous exciting life full to the brim. I search for purpose in every single day. I ask to be used for good every single day. I fight so hard to get all that I can out of this life- so that when it does come my time, I can look back on a life full of the big love, belly laughs and memories that will last a lifetime.

Despite my journey of too-soon life expectancies, filling out advanced directives and choosing cemetery plots, I consider myself to be one of the luckiest people I know. Blessed beyond belief, to be able to take my circumstances and instead of being mad at the world, be so wholeheartedly thankful for each and every moment that I’m alive instead.

I say this alllll the time, but I can’t help myself not to repeat it. When my time comes, I want to have used every last drop of all that I’ve been given: every single bit of love and light in this soul, my passion, my excitement, my unshakable faith, earned wisdom, loyal friendship, immeasurable gratitude- I want to have given every part of me away to others until I have absolutely nothing left- and only then will I be ready.

So, now, at the end of everyday, before I start my bedtime prayers, I ask myself: what was the most exciting part of this day? If you’re reading this- ask yourself! If you can’t come up with anything that stands out, I’m going to list some simple suggestions! I recognize now that normalcy is a gift, like I always knew it was. Going to work, the gym, the grocery store- they’re all typical routines— but normalcy isn’t what I want to strive for anymore. Those aren’t the things that bring me joy. The things that light me up. Why want ordinary when you have the opportunity to be extraordinary?

It doesn’t have to be extravagant but I realize now that mundane is setting the bar too low. It can be something as simple as singing out-loud to your fav feel-good songs on your morning commute, or volunteering for something you’re passionate about. But something should be bringing you excitement each 👏🏼 and 👏🏼 every 👏🏼 day!

Struggling? Here’s some ideas:

Call and check in with someone you care about

Make near-future plans with friends

Prioritize quality time with family

Treat yourself – maybe a pedicure / fresh haircut

Get a massage

Eat a piece of your favorite candy

Walk in nature

Make a weekly gratitude list

Order takeout of your fav meal

Wear something colorful !

Give a compliment

PLAY with your dog

Cook a creative meal

Be a photographer – capture something beautiful

Enjoy a beach day – even if it’s winter!

Set aside time every day to pray!

Watch a sunrise/sunset

Drive with good music and no destination

Paint, even if it’s just strokes of color

Share an old memory with a friend

The list can go on forever.

Try some of these out! Comment and let me know what are some of the things you do to make the most out of your days. What daily act can you give to yourself like a gift? Something that brings you joy- a tickle in your stomach and smile on your face. I think that if you find your day comes to a close with satisfaction, excitement, passion and love, your life will be one in the same.

Sending out all my love,

Sam xx

Short and Sweet

Tonight, my U-Penn nurse said the most beautiful thing that has ever been said to me. So simple, yet so powerful. Something I will never forget. It was no coincidence we were placed in each others paths the past few nights. We’ve both agreed to that.

“You are the reason I became a nurse” 🥲

Wow. I think to myself sometimes… (not complaining) but I wonder, Lord.. don’t you think this is a little much for one person? I’ve suffered with chronic disease and sickness my whole life. Hospital stays since I was little, surgeries since I was born, procedures, needles, medicines and treatments lasting for hours every single day for thirty years.

Cystic Fibrosis, Cancer, Double Lung Transplant (and all that comes along with it), severe diabetes, I could go on. And then I share my story and my faith with people like my nurse tonight and I see the genuine response on her face as she tells me with tears… “YOU, are the reason I became a nurse.” And at that moment, it all kind of pieces together. Maybe my purpose is to simply remind others of theirs 🤷🏼‍♀️

I’m not bragging. I’m never bragging. I’m just trying to figure it all out. I may never understand… but tonight, I lived out my favorite quote from Mother Theresa… “I am a pen in the handwriting of the Lord.” (Or something like that)

No, I’m not the creator of the message.. but I’ve often been the tool HE uses to spread the word… and that’s a big job. A job I’m honored to serve until my last breath 🙏🏼

PennMed #OrganTransplant

Controlling Anxiety

My advice for •anxiety• 💥

I’m not an expert. I don’t have a degree in psychology or human behavior but I have experienced anxiety in many forms. Nervousness, anxiousness, fear, uncertainty and even utterly crippling anxiety that causes actual physical side effects. Through therapy, self-reflection, exercise & utilizing meaningful conversations with friends and family, I’ve learned to acknowledge those feelings WITHOUT attaching to them.

I take a deep look inside. Sometimes, the answer to what’s causing my anxiety is clear. Other times, it’s a complete mystery as to why I’m feeling that way, as if it came out of no where.

Still to this day I don’t have the answers to an anxiety-free life, but I have learned helpful techniques to managing an attack.

It’s important to know you’re not alone. There’s probably not a single person you know that hasn’t experienced anxiety in some form.

When an attack starts to present itself, my first go-to tool is breath. Focus on breathing. Tell yourself that you are in control and dig deep to discover (if possible) the cause of this negative energy.

Second. Get up. Literally, get up, stand up, move around, shake it off. Sometimes, my anxiety can feel like there’s ants crawling in my stomach. Take that discomfort and literally shake 👏🏼 it 👏🏼 off.

Distraction* has been a huge instrument I’ve used to overcome an anxiety attack, too.

•Call a friend
•Step outside
•Journal
•Wash your face with cold water
•Diffuse essential oils (@youngliving)
•Adult coloring books
•Walk the dog* (my pets are an amazing source of peace for me)

^Just to name a few.

Again, these are all things that have worked for me, personally. I’m not a professional but I’m deeply experienced not only with the feeling of anxiety but also with trial and error of tips, tricks and tools to manage these feelings.

I hope if you’re reading this, the next time you’re feeling uncertain or anxious, you try out any of these options to calm down & return back to a state of peace. Even tho it may not feel like it, anxiety is only temporary❗️

Please share in the comments anything not listed here that has personally worked for you when experiencing anxiety 🖤

Sending peace and love —Sam

Behind the Curtain:

Hey friends,

I’ve been working on this blog for a few days now but just haven’t quite been able to find the right words or where to start. It’s unlike me to have a case of writers block, but that seems to be the case with this particular blog and I think I know why. Lately, I’ve been doing a really good job at making things seem close to perfect. I’ve been posting a lot, keeping myself busy with my Senegence business, getting outside in the fresh air and truly having some real control over my anxiety, which is something I haven’t been able to say for quite some time. I just recently started working with some new brands and companies that have been paying me to promote new and exciting products on Instagram, and all around just keeping myself busy and distracted from a darker reality. I guess in all honestly, these Instagram and Facebook highlights have been an escape for me. I think the reason I’ve been having a more difficult time with this blog in particular is because I wanted to believe things were nearly as perfect as they seem, instead of admitting that’s not the total truth. Don’t get me wrong, these recent daily activities like Makeup Monday LIVES and product reviews have been a ton of fun for me, sharing blogs and my progress with clarity and well-being with friends and family has been 100% honest, but I haven’t been telling the whole story… the story of what’s behind the curtain of pretty posts and smiles. So, it’s been a little harder to admit to you all, and myself, that things haven’t been as simple as they may seem. I mentioned in a live video that I did the other day that I always strive to be REAL and honest with my friends, family and followers, so that’s what I intend to do through this blog post. If I only fed you the highlights and the positives, I wouldn’t be telling the whole story. So, I want to share 100% of what’s going on — not just the highlights.

So here it is. If you’ve kept up with my past blogs, follow me on any platform or know me personally, you know that I’ve been given a second chance at life. After being told years ago that I had a very limited time left to live, I underwent a double lung transplant after a lifetime of suffering with Cystic Fibrosis. Along with that life saving surgery comes a lot of post transplant issues. One of them being the prolonged use of medicines that keep my lungs healthy, but have nasty side effects for the rest of my body. To date, because of one certain anti-rejection medicine, I’ve had over 75 skin-cancer surgeries. It’s something I go in for about every 6-8 weeks. We do anywhere from 3-7 positive cancerous spots each time, starting with biopsies and ending with scrapes, digging and stitches. These appointments usually last anywhere from 7am-4/5pm, depending on how many spots we remove that day.

My latest battle has been one of the toughest though, and it’s because of a few reasons. One being it’s terribly painful. Two being that’s it’s discouraging in the sense that there is no cure.

I’ve been recently diagnosed with a condition called bone necrosis, which translates into the death of bone. Its a common result of being on a medicine called prednisone, a steroid which I’ve been on daily for over ten years. This medicine causes weakness in the bones until eventually necrosis sets in, which there is no stopping. This necrosis is spreading all throughout my body, but specifically in my joints is where it’s most painful.

In the beginning of this year, I started complaining of severe bone pain in my right knee. I hadnt fallen or hit it in any way that I could remember so I went a little while without addressing it, thinking it would heal on its own, but it only started to get worse. Eventually, when I could barely walk, I saw a Penn orthopedic doctor who took an MRI. The results came back that my knee bone has essentially died. This doctor felt as though a knee replacement was my only option.

Just as I did with my transplant back in 2014, I just felt more comfortable before taking action by getting a second opinion, but soon after seeing the first doctor, the coronavirus hit and I was quarantined. It was actually a small relief, because as a result of having to stay inside, I was out of work and for the most part off of my knee. I was getting through the days with pain management and a knee brace which worked for a bit of time, until it didn’t.

A few days ago, the pain and the condition of my knee became unbearable and so I was seen by a new Penn orthopedic doctor for a second opinion. The news was better than I expected it to be, which I’m grateful for, but still not ideal. This doctor said that he believes there’s something we can do to buy me a few years before the knee needs to be completely replaced. This doctor believes he can do an arthroscopic surgery, drill some holes in the knee, create better blood flow and in-turn promote new bone growth. He said the success rate is about 75% and that he’s confident I’ll immediately be in less pain. So, that’s where we’re at right now. Unfortunately though, this is only my first of many experiences I’ll have trying to control the pain and condition of necrosis. As it spreads through my body, the doctor could already see the bone in my left knee beginning to die too. Luckily I have no pain there yet, so we’ll cross that bridge when the time comes.

I’ve been given a surgery date for this June, and until then I’m required to use crutches for the simplest of distances —- as short as traveling from the living room to the kitchen. I’m sharing all of this because I want all to know that as good as things seem to be, nothing is as perfect as it appears. I strive really hard to be real, authentic and genuine, and because of that I want to share not only all of my highs, but my lows too.

Right now, I’m doing a pretty good job at staying positive. I’ve had a controlled handle on my anxiety and panic and although this has been a difficult reality for me to face, I’m reminded by friends and family of how far I’ve come and how far I’m strong enough to continue to go. I’ve come a long way since the beginning of this year, when I was at an all time low and dealing with an extraordinary amount of change and life lessons. In all honesty, this news has been discouraging and I’d be lying if I said it hasn’t brought me a few steps backward, but I’m actively working toward remembering there are some things I just don’t have control over. Those things however, I believe God has control of, and my faith in Him has yet to fail me.

I’m going to continue to do the things lately that have been bringing me joy, because those are the things I can control. Spending time with my family, connecting daily with close friends, promoting new products from brands that have allowed me to work from home, keeping up with my Senegence makeup and skincare line. I’ve even fallen in love with learning embroidery and have been spending every chance I can get outside in the fresh air and sunshine, gaining clarity and well-being. A sweet friend of mine has even reached out and helped me to join a new mediation program which I know will help me gain strength through practicing patience and mindfulness.

All I ask right now is that if only for a moment, you could send some prayer, positivity and encouraging energy my way. I don’t usually like to ask others for prayers for myself, but I’ve felt the power of true prayer and positively before, and I truly believe it works more powerfully than any medicine known to man.

As I go through this most recent journey, I feel proud of how far I’ve come, and the strength I know I have inside to overcome this too. I’m so beyond words grateful for the love and support I’ve already been shown through sharing all of what’s been going on, and I’ll continue to keep sharing not only the highlights of life, but the raw realness that I deal with too.

So as always, from the bottom of my heart, thank you for reading what I have to share. I’ll be keeping you all updated with my progress through this journey and all that’s to come. The support and love I’ve been shown just this far has reminded me that my blessings far outweigh the trails I’ve gone through.

I’m forever grateful and will only continue to keep fighting for this incredibly beautiful life.

Love and Light, Sam 💟

A Letter to my Donor

A letter to my Organ Donor:

It’s no secret that I’m living with someone else lungs inside of me. What is a secret is who’s lungs they are. The Gift Of Life has a very strict policy on finding out who donated their organs to the recipient. You, the recipient, have to write a letter to the gift of life. The Gift of Life then delivers your letter to the donor’s family and after reading, they then decide whether or not they’d like to be in contact with you. I understand how drastically different we see this situation. I received life. Because of this selfless soul I was able to continue living. To the family, their loved one is gone. There is no coming back. So, to give them their space I waited a year to contact them the first time. I wrote a letter with the utmost gratitude for the life I’m now able to live because of thier loved ones selflessness. I wonder if my donor, my hero, ever thought in their wildest dreams that they would one day save the life of a 23 year old girl dying, fighting like hell every single day to make it to the next. 
I wondered if the lack of response I received was because I didn’t write a strong enough letter. I thought maybe I should have dug deeper, maybe I should have been more raw with emotion to make them realize just how unexplainably grateful I am to be alive because of their loved one. I wrote again two years later thinking maybe the first letter just came too soon. That wasn’t the case either. Still, no response. It turns out though, that what I thought was a weak letter wasn’t weak at all. As a matter of fact, the Gift Of Life reached out to me asking for the rights to my letter. They said it was so well and strongly written that they’d like to use it as an example for recipients to use when writing to their donors family. I was so honored, but still a little discouraged that my letter didn’t receive a response. So now, I’ve decided to say some things that I’ve wanted to say to him/her for a while.
Before my surgery, I lived everyday fighting with everything in me to make it to the next. I’ll never forget this one day when my health was really coming to the end, my mom and dad knew they had only a short time with me left, so they would make efforts to go on nice car rides or take me to the beach for the day when I could. I was frail and weak at 85 pounds so days like that were rare, but when they came along we took full advantage. One sunny day, us three went to the beach together. I remember not even 5 minutes by the ocean and I started to cough up massive amounts of blood like I so often did. I couldn’t make it through the walk in the sand to get back to the car and I couldn’t stop coughing up this blood that made me feel like I was drowning. My dad, being the rock he is to me, carried me through the sand back to the car. Luckily, with todays technology, we had a portable nebulizer machine in the car and I was able to get a nebulizer treatment and calm down, but I learned something that day. There actually is something worse than suffering so massively yourself, and thats watching your loved ones, who would do anything to take this pain away from you, suffer from being helpless. It’s a feeling that makes you sick to your stomach.
My very first words after surgery were, “this is it, this is what it feels like to breathe,” by breathe, I meant breathe easily. Despite the pain of being cracked open, having your lungs cut out and replaced and then sewn back together like a toy doll with less stuffing, I was still able to finally feel what it was like to breathe easily. I knew then I was starting a brand new life. A brand new life to say the least. 
My dearest donor, my hero, I am alive because of you. But, I’m not just alive. Im thriving. Because of you I now live a life of adventure, compassion, excitment, love, light. I FEED MY SOUL AND FOLLOW WHAT SETS IT A BLAZE. I’ve made new friends along the way that support me more than some people I’ve known my whole life. Donor, would you believe the girl that couldn’t walk of the beach that day, who lived on a feeding tube at 85 pounds and oxygen to survive has ridden in a hot air balloon since your selfless gift? Would you believe I’ve been to Disney and walked the parks with no wheel chair, unhooked of any IVs. I’ve been to the Florida Keys to celebrate the anniversary of US, and this beautiful life I’m now able to live. I’ve swam with dolphins in Atlantis Bahamas. I followed my passion for hospice care and became a volunteer. My compassion was recognized and I was offered the head position of the entire volunteer department. A dream job I couldn’t have ever imagined being able to commit to before your gift of life to me. 
Donor, I rode an elephant. And I did so laughing until my stomach hurt the whole time. I completed a 5K, let me repeat that one, I COMPLETED A 5K. I went from the girl who couldn’t make it up the stairs to my bedroom, to the girl who fell in love with hiking and zip lining. I’ve done yoga with baby goats. I’ve strengthened my relationship with the Lord because of your gift. Because of my gratitude and my endless faith. I let excitement decide I was going to do my first water slide ever in Atlantis. I’ll never do it again lol! It scared the begeezees out of me but I DID IT! I’ve done more living in the almost 5 years since you’ve saved my life than I ever had in the 23 years pre-transplant. Most important, I’ve allowed myself to accept being loved. Never once in my life did I imagine being able to think of a future with someone I love. I always thought it selfish of me to put it bluntly — to have someone fall in love with me and then…die. Leave them lonely. And that was inevitable before. Now, I live in hope. I live in Love and other than receiving those lungs, this love was the greatest decision of my life. 
There are no words in the human language to describe my forever gratitude to you for your selflessness. I continue to live with nothing but excitment, adventure, love, light, passion, compassion, feeding my soul and heightening my spirit. 
Of course, like everyone else after transplant I have many trials that I have to get through, but nothing compares to the life I once lived. I’m alive. I’m brand new. In a sense, my life has just started and I cant wait to see what the future holds. Just being able to say that gives me chills of love and appreciation. A future. Something people think about everyday that I avoided thinking of at all costs. 
My donor, my dear friend, as badly as I wish I knew something…anything about you, my faith keeps me hopeful in the fact that we will meet one day. I’ll see you at heavens gates when I’ve used every ounce of passion for this life and I HAVE NOTHING LEFT. Thats when I’ll be ready to go — thats when we will meet, easily breathing, pain free and with open arms. 
Until then, I hope to continue to make you proud here on this earth. 
Always fighting for the next day,
Always living in love and light, 
Thanks for reading, 
Sam 

Q&A

Hey there, Readers,

No long introduction here for this blog post… short and sweet — I’m a sucker for these question & answer surveys. I have been since Myspace days. Also, I’ve been meaning to create a blog post that was a little more lighthearted than my typical writing. Although, even though these questions are more lighthearted, they’re still pretty personal. Feel free to copy any/all questions and use them for yourself. It’s fun getting to know yourself through personality questions. It’s even more fun to share them with others who want to get to know you better too – win/win.

Enjoy!

(If you’ve read my previous blogs, you know I over talk, so I apologize in advance if you were expecting short answers)

1. What does your dream life look like? My dream life? I’m living my dream life and thats the truth. Not to be boastful, but what more could I ask for? I’ve been given two brand new lungs to keep me alive, a strong faith that gets me through every trial I’ve faced, a warm home, a loving family, a brother who isn’t just a sibling but a friend, generous and loving grandparents, a mom and dad who I’ve never once had to question their love and loyalty, a partner to share this life, good and bad with, friends, a purpose. It might sound corny but I literally could not dream up a better life. If we’re talking about the future, I do dream of having my own family someday. I have so much love in this little body… I want to give it all away… every ounce. (I wouldn’t mind a blue frenchie either as an addition to that future family)

2. What do you know to be true today that you didn’t know a couple years ago? I’ve recently realized something that I think I have actually known but never acknowledged. I know to be true that I, and anyone for that matter, if you believe with your whole heart and soul, can manifest things to actually happen in our lives. There’s a line in one of my favorite Disney movies, Halloweentown, where the Grandmom witch tells her magic grandkids that magic is simple, “all you have to do is want something and then let yourself have it.” Thats stuck with me literally since 98’ when I watched the movie for the first time.  

3. In this very moment, name 3 things you’re most grateful for: First and most importantly, my health. You don’t realize how much of a blessing good health is until you don’t have it. Not suffering through each day to get to the next has been the biggest blessing in my life. Feeling strong because you can breathe is a feeling unexplainable to anyone who hasn’t lived fighting to stay alive. Second, obviously, my family. Not just blood. Those who treat me like family and the ones I could call at two in the morning if I needed somewhere to go… like my family the Grays and Lonergans. Third, I’m thankful that I was raised with a foundation of faith. I’m grateful that I was brought up introduced to,  but not forced,  to know and love the lord. It was my choice to grow my faith as I got older but I never would have made it a priority had my parents not sacrificed to build my foundation.

4. When/Where do you feel most in tune with yourself? Two places make me really at one with myself: first, alone in the chapel at Camilla Hall Nursing home. There’s some places where you close your eyes and your surroundings are so powerful that for a moment you forget where you are. I get so lost in wholehearted prayer here that it’s almost an out of body experience. The second place is alone on long car drives, windows down and wind on my face, singing something that gives me the feels… like every single Carrie Underwood CD ever released. I don’t think I’ve ever felt so in tune with myself more than on a solo drive.

5. What does happiness mean to you? Happiness. Plain and simple – when the fire in your soul is blazing and you know in your heart that even if it’s not right now, everything is going to be ok.

6. If life stopped today, what would you regret not doing? I love this question. If life stopped today I would be so absolutely positively satisfied with what I’ve accomplished here on this earth. I don’t regret doing, or not doing a single thing.

7. What are you most afraid of? As simple of a question as this sounds, its actually one of the deepest for me. My answer isn’t spiders or the dark. My biggest fear is being forgotten.

8. What quality do you admire most in others? There is one quality that I respect and admire amongst all others and its sincerity. I believe I’m a pretty good judge of character and I see right through fakeness and wrong intentions. I surround myself with sincere,  genuine people who are real and kind.

9. Top three movies: Everyone makes fun of me for this first one but I don’t care, my favorite movie is “Signs.” Yes, the one about the aliens, but aliens aren’t why its my favorite.  Its a movie I could watch a thousand times because the theme is about those of us who chose to see coincidence and those who chose to see signs. I’m a sign person. Second movie, Beauty and the Beast. It’ll never ever get old to me. And third is one you probably never heard of but its one of my all-time favorites and you should see it… Win a Date with Tad Hamilton.

10. What excited you the most?  Adventure. I want to look back on this life and know that I’ve seen things, done things, learned new things, met new people in new places. I love nothing more than when my heart is racing from excitement. Riding on the back of a motorcycle on a beautiful sunny day, a hot air balloon ride, zip lining, jet skiing, visiting new cities and trying new foods. What is life without adventure?

11. Pretend money is no object, what would you do? So, my problem is that I already pretend money is no object and that gets me in trouble. But if were talking like an unlimited amount, I’d start my own nursing home for no cost to the patients and we’d have activities all day like bingo and ballroom dancing and pet therapy everyday.

12. What advice would you give to your 16 year old self….. how about your 21 year old self? Oh Lord, if only we could actually do this! I’d tell my 16 year old self to stop being in such a rush to grow up. Slow down and enjoy the ride. When I was 16, I was a completely different person. Thats because I grew up through my teens thinking I wasn’t going to make it to my 20s, so I tried so hard to cram every life experience in during those years and a lot of times it got me in trouble. My 21 year old self, same thing just about…. except I’d probably add a “stop dancing on the bar and call it a night,” somewhere in there.

13. How do you relax? Naps. Everyday. Naps.

14. Imagine yourself back in the 90s… What memories do you have? My whole childhood was in the 90s but there are some things that stick out above others. First being my Uncle Tom. He used to live with us in our Upper Darby house when life was so good. He taught me the words to the very first song I ever memorized: This is how we do it by Montell Jordan lol. I used to sing every word and had no idea what it meant. Another memory was one of my favorites, after school at St. Cyrils every Tuesday my dad used to pick me and Tommy up and take us to Johny’s Drive In… I’d get a cheeseburger and dad would get hotdogs. It was the highlight of my whole week. Then there was the Fridays me and my best friends in 8th grade would clean the convent. I’ll never ever forget running shoeless in our stockings through those hallways doing anything but cleaning — unfortunately it ended around the time Alexis and Leah knocked over a burning candle on the alter in the chapel and we almost burnt down the convent. Ah, good times.

15. Whats your favorite way to spend a Sunday? Lazy Sundays are happy Sundays. Recently, I like to lounge around with Steve now that we live together… make breakfast and drink our coffee in the morning… nap, and then go to his moms for Sunday night dinner. Its the little things in life that make it perfect.

16. Describe in detail your life 5 years from now: This one I’m choosing to skip. If I’m alive and well in 5 years thats plenty enough for me.

17. What sets your soul on fire? Excitement, adventure, love in all of its forms. I live my life in constant search of things that set my soul on fire, and when I find them, I don’t let go.

18. If you couldn’t fail, what would you do? Im not crazy about this question because winning wouldn’t be half as satisfying unless you know how it feels to fail. Since I’ve failed at this already, if I tried again and knew I couldn’t, I would become a published writer.

19.Your biggest day to day challenge? Had I been asked this question 4 years ago, boy would my answer. Be different. I would have said surviving to tomorrow was my biggest daily challenge. Not being able to breathe or thrive. Managing oxygen and a feeding tube, feeling weak. And hopeless. Today, I struggle with something that after realize what I used to deal with seems shallow. I struggle daily with self confidence and speaking up for myself — although, even though I struggle with it, I work on it just as equally.

20. Where do you find your purpose? My volunteer work. I have always said for the past ten years since I’ve started that I’ve found my calling with the elderly. Working in hospice care and volunteering at. Camilla for 10 years now has given me  the greatest sense of purpose. The feeling of knowing you’re making a difference, a real difference, in this world is one of the greatest feelings I’ve ever experienced.

21. If you won the lottery, would you keep working? Absolutely. I actually love working. I’d probably just. Volunteer but either way I would still stay active. Although I probably would end up having to keep working anyway considering the horrible way I spend money.

22. What’s your best friend like and where did you meet? I have two and they’re true earth angels to me. I couldn’t ever write an answer significant enough to explain them in a format like this.

23. Do you believe youre living a meaningful life? I wholeheartedly believe that every life, from Pope to a criminal, is meaningful. So yes, I live an extraordinarily meaningful life.

24. Name a few materialistic things you can’t live without: I could create an entire blog post out of this question alone, but here’s three things: 1, coffee – 2, self-tanner- 3, pictures

25. Whats something that offends you? Might sound silly but I have to admit, I’m completely turned off when men curse (not like hell or damn, but you know, like the big ones) in the presence of women. I think its rude and disrespectful. I also get pretty offended if someone is late for a meeting with me. I like my time respected.

26. What makes you feel most empowered? Honestly, another answer that might sound silly, but I feel most empowered when I take pride in my appearance. It empowers me to go to work everyday. When I put the time into my hair, makeup, and outfit, I feel unstoppable honestly. I FEEL CONFIDENT & that’s empowering.

27. Whats your ideal morning? I’ve lived it. Sweet and simplistic. A good cup of coffee outside on a porch, sun shining, gentle breeze blowing.

28. What is one of your long term goals? Long term goals? My health. Today and always I want to show my thanks to my lung donor by keeping myself healthy for as long as possible.

29. Name your greatest weaknesses: I wish the answer to this question was different but one of my biggest weaknesses is not speaking up for myself enough. I keep a lot in because there is almost nothing I hate more than controversy, but on the few times that I have spoken up for myself, its felt so empowering. I’m a work in progress.

30. What are you most proud of yourself for? Most proud? Where do I start? I imagine most of my readers would assume my answer to this would be my transplant journey, and of course, thats at the top of the list. My faith is another one. I’m proud that for the first time in my life I’ve allowed myself to accept love instead of turning it away because I was afraid of dying. But above all of these things… I’m just proud of who I am. I’ve fought my entire life to become who I am today and everything I mentioned, and all that I didn’t mention have contributed to that. IT’S NOT SELFISH TO BE PROUD OF WHO YOU ARE.  I’ve learned that and I hope if there’s anything you take away from this blog today, that you realize you have a lot to be proud of yourself too.

Love & light 💕

Sam

Sharing the Struggles

I want to get something straight during this post before I even begin writing about what I really intended on writing. Something that I struggle with often. Something that I’m fully confident others struggle with as well — it’s about sharing our lives on social media. I actually surprise myself. I used to spend the majority of my life doing everything in my power to hide my health and everything that it involved. Honest to goodness, some people would never believe how unbearably exhausting it is to try everything possible to appear what others consider ‘normal.’ Nowadays, I find myself sharing health updates, personal accomplishments and writing blogs letting the outside world in to the inner most feelings of my new life, learning how to cope and understand how to literally start over after everything I’ve ever known. And to be honest, I’m not sure which of the two are better. I have a hard time when writing deciding if I should just highlight and delete every word once the blog is done. Am I helping anything by sharing — am I hurting by sharing? Am I just filling this social-media-run-world with more personal information that truthfully nobody actually cares about?

But heres why I do it: Total and complete inspiration. I have this burning passion inside me to show others in the dark that there is light to be found. I post the majority of my life, my adventures, my family, friends, relationship, places I go, things I’m able to do now that I never would have imagined being able to do before — but never do I feel as though I should be sharing “the bad stuff ” — the issues that still linger in my life daily, in different ways shapes and forms then years ago, but still very much real and present. I really, really used to struggle with sharing my fears and health status back before these new lungs. I hid for so long — never letting anyone in. I’ve come a really long way — and now I sometimes find myself asking if maybe I’ve even come too far. I share the things that I share because I am so damn proud of how far I have fought to be able to live the life I’ve been living the past few years. I want to share every second! I want others that are struggling to see where I’ve been — so low, so hopeless and so incapable of any type of quality life, to a life of gratitude and endless possibilities! I feel like, as selfish as this may sound, I have something to offer those who witnesses my journey through the life I presently live. It’s not tangible — its not monetary or advice-filled or even that out of the ordinary (for most). What I provide by sharing my story is hope — so much endless hope and excitement and pure addiction, appreciation and ecstasy for the universe and all of its daily miracles big and small. Thats my reasoning behind the blogs, the photos, the sharing of my hospice work and the most genuine reward I feel from giving all of myself to this world. I want to share every ounce of all the good in my life in hopes that it relieves just one struggling soul to see light. Theres an endless need that burns inside me just roaring to show others that there is nothing so bad in this world that cant be overcome by the power you hold inside yourself. I can say in all honesty, I’ve never posted a moment or a memory or an adventure or an experience for any certain amount of “likes”. What I post and share is intended for so much more than that. I post positivity to be a beacon of light. I want so wholeheartedly, so sincerely with everything inside me to lead as an example for people to be changed by powerful of works of mercy and a grateful heart. There is goodness, there is love, there is endless hope no matter what circumstance. I strive with this new opportunity of life to be an example that shows life is worth living at all stages — at the most broken, the most unexplainable lessons, incurable illness and unimaginable loss. There is reason behind all things, even unbearable things we may never understand. I share my positive blogs and pictures and my life after transplant because I feel like I have been given a purpose to remind those struggling there is light through darkness, and no matter how bad or scary things become, I wont ever let fear keep me from the power of fulfilling this purpose.

Now, here’s where I fall short. Posting the struggles. This is something that I’m not comfortable with. With the help of a new transplant friend, Tiffany, I’m starting to realize the negativity I’ve associated all along with sharing more than just the “good things,” shouldn’t be frowned upon, but it’s still something that’s not easy to accept myself, let alone with others.

Chronic disease, organ transplantation, clinical appointments, life expectancies and learning to be in control of an entire new body isn’t at all just a physical adjustment. It’s mental and it’s been really hard for me to share the struggles I’ve dealt with after my new lungs because I haven’t wanted to seem ungrateful, weak, or still broken. I’m supposed to be fixed now, and I’ve never thought of sharing my struggles as something that could be beneficial to anyone — instead, I saw expressing the negative pieces as cries for help, weaknesses, and things that should be hushed because I should only be grateful for the life I’m able to live now. The truth is, life after transplant is full to the brim of hardships and struggles — it’s just different issues than I’ve dealt with before — more manageable issues but issues nonetheless. Putting it out in the open truthfully, I’ve had over 75 positive cancerous spots taken off of my body caused directly by my anti-rejection pills over the last four years — rejection meds that I can never discontinue if I want to stay alive. I’m in constant fear of organ rejection. Every sign and symptom of a cold gives me anxiety that all that I’ve worked for for so long could be taken away from one infection. I have MOHS surgeries every four weeks and just recently had a partial finger amputation for a cancer spot that spread down to the bone beneath my finger nail. I’ve had blood clots that spread to my lungs. I’ve formed uncontrolled diabetes to the point that when I came in to be admitted this time around, my body was so stressed, my sugar was over 1,000. That number is easily deadly. I’ve been avoiding a permanent diabetic pump even though I know its needed at this point. You might also be surprised to know that I’ve been on steroids for over a decade, which causes the most horrific, deep, uncontrolled bone pain to the point of screams. I don’t drink alcohol because of high kidney functions that require monthly hydration through a permanent port in my chest because standard IVS no longer go through my scarred veins. Those high kidney functions will eventually result in progressive kidney failure due to the pressure of the anti-rejection meds that keep me alive, but thats a worry for another day. I’ve even done courses of chemotherapy to try and lessen the progression of the cancer caused by the anti-rejection meds. I’ve fought, and continue to work through fertility issues— we’ve researched surrogates, I’ve dealt with positive family planning and discouraging experiences as well involving personal opinions of professionals who don’t believe its ethical I bring life into this world with a life- expectancy of my own lingering overhead. All of these things are just to name a few — and I would look at these things as issues people would never want to hear about. So, I’ve kept them all quiet. Until now.

The Real Post: The Latest Struggle

Mental Health. There aren’t any words to be able to explain a life where I’m able to wake up daily and breathe air into my lungs. Mornings I’ve never imagined waking up next to someone I cherish, who accepts me for all that I am, because of all that I’ve gone through. I still struggle daily with the acceptance of that concept — of any concept really that involves things considered as “normal life.” But here I am. I was called in to the hospital on a June night in 2014 and have never been the same. My old, deteriorated, sick lungs were removed and replaced with the gift of new life from an organ donor who remains anonyomous. Since then, I’ve accomplished things that were only far fetched fantasy to me at one point. I’ve traveled. I’ve celebrated transplant anniversaries in The Florida Keys, Disney, Orlando, I’ve swam with dolphins, I’ve zip-lined, I’ve found a purpose in work I’m passionate about and pour my heart and soul into hospice work as much as I possibly can because I know the fears that end of life can bring. I’ve made new, lifelong friends. Spent valuable time with family. I’ve found love. Actually, I cant take credit for that. God placed love, acceptance, support, excitement, a best friend and a loyal partner in my life who walks beside me through the bad things I don’t want to share.

I’ve tried alligator! We have a trip set for Atlantis Bahamas coming up and another Florida Keys planned for my anniversary of 5 years strong since my life was saved. I’ve literally had to ADD things to my bucket list because there was a point I was crossing things off too rapidly. I’ve filled my life with volunteer work, celebrating 10 whole years as a volunteer at Camilla Hall, where my heart is at home. I’ve continued to build upon a relationship of infinite trust with the Lord that could never be broken. I have no plans on stopping. I have no plans on slowing down. Which is why right now is the hardest physical and mental roadblock I’ve dealt with in years. Slowing down when your body is suffering isn’t something you plan. So, having my first issues with my lungs since my new life is something that made me embarrassingly scared. I immediately felt like I was picking right back up where I left off what seems like such a long time ago. The chest pain, the rattle, the wheeze. The panic finding the breath for your next word. It all came rushing back. There’s all these statistics and I’m only human. The life expectancy after a double lung transplant is estimated 5 years. I do my very best to avoid the feelings that come along with stats like that, but again. — only human. So, when I started to feel in my lungs these old symptoms from back when I lived in survival mode, you can see how that could mess with someone’s head. Can my new body handle this? Is this temporary? Was I given a 4 year long pause from dying and it was remarkably beautiful but I finally did it — I used every ounce of passion life and service that You’ve given me and now it’s really time to come home? This is the truth. These are the things you think about. The things I really don’t know should be shared.

I tried starting out with at-home IV antibiotics which isn’t uncommon for me still these days, and we gave that a chance to work. Usually it does. This time it didn’t. I was brought into the hospital around day 10 of feeling the worst I’ve felt in years. I tested positive for RSV virus deep in my lungs. My pulmonary functions test which keeps track of my baseline lung strength is down the lowest it’s been since my recovery time out of surgery years ago. Normally, this wouldn’t be something I share, but my way of thinking has been changing and I’m finding it just equally as important to share the struggles along with the joys. This is the important part about mental health — my latest struggle — something I’ve spent so much time trying to avoid. I realize expressing my blog in this manner – so honestly— is in some ways equivalent to the physical care I’m receiving in this hospital – through IV antibiotics and treatments. They go hand in hand and it’s just as important to inspire as it is to shine truth. This life is about balance, and how could I expect anyone to ever understand the gratitude I’m full of if I don’t let you inside the darkness. I’m starting to see that mental health and sharing our burdens aren’t something to be ashamed about, but proud of, instead. I’m still working hard currently admitted to the University of Penn doing my best to overcome this RSV and come out stronger than before. I have all the faith and hope in the world that I can beat this — especially with the outpouring of love and support shown by such sincere people in my life. Asking humbly for positive energy, thoughts and prayer for continued patience. I’ll be sharing updates — good and bad! — on my social media accounts.

Always holding on to hope,

Sam

Baby Roman

I’m on a mission.

Throughout our lives, we’re introduced to people, places and things that strike us all differently. Growing up with a chronic illness, I’ve been exposed to countless stories of people fighting their own battles, how they survived… or didn’t survive. Every once in a while, you hear a story that sticks with you — something, that for some reason, interests you enough to want to become involved. Sometimes, there’s no rhyme or reason as to why. Well, I’ve found one — and it’s buried itself into my heart deep enough for me to feel the need to share it as far as I possibly can.

I’m a person who believes without a doubt [something] works through us to complete acts of service. Whatever you believe in, whether it be God, The Holy Spirit, a higher being, the universe & the stars being aligned, it doesn’t matter — I believe at times we are all used like puppets of a higher power — and that for reasons we might not even understand ourselves, we’re constantly being led toward a greater purpose.

I came across a page on instagram dedicated to a baby named Roman. He’s fighting for his life. For a few months, I’ve kept up with pictures being posted by his mom and even spoke to her through messages about Roman’s need to be accepted for transplant. I thought maybe because I’d been given the gift of life by an organ donor that maybe that was why I felt so connected to this sweet little fighter. I had never clicked on the link in Roman’s instagram bio until today.

I came across a picture during my daily scroll that was posted of little Roman’s hospital room, decorated to perfection with lights and caution tape and all things Halloween. It brought me back to the hundreds of times I would sit in a hospital room looking around at 4 blank walls and thinking of how I could decorate to make it feel less depressing. Back when I was seen at St. Christopher’s children’s hospital in Philadelphia, I would have my own sheets and colorful blankets, posters on the wall, a mini fridge, microwave and coffee pot. People used to think it was over the top  — try living in a little hospital room for a month and you’ll realize the need for these things.

Seeing Roman’s room decorated for Halloween lit that fire inside me and I realized why I felt so connected to this little boy that I don’t even know. In a way — we are the same. I don’t think he is even two years old yet, but all he knows of this life is fighting to survive — that, and endless love. For a long time, that’s all I knew. So, I clicked on the link in his insta’ bio and read about all that he’s been through in his short life. I read that his mom was aware that Roman had Downs Syndrome and a heart defect while she was pregnant, and just as my mom was advised, abortion became an option. This is one of the reasons I can’t let go of Roman’s story. His parents remind me of my own. When I was born, the life expectancy for children born with Cystic Fibrosis was 18 years — and those 18 years were expected to be full of pain and suffering. It would be a difficult life, but regardless, it would still be a life. My parents decided any life, even that of a chronically ill, helpless kid, was better than no life at all. I thank God every single day for their decision. That’s what Roman’s parents decided, too. I’m usually pretty good with words, but I can tell you honestly that I don’t think any words can do justice for the respect I hold for these decisions. My life, at 28 years old, is the reason I have a heart full of hope for Roman and the beautiful life that could be.

Roman is awaiting acceptance to receive the transplants he needs to survive. The real truth is that people die every day waiting for organs. I thought I would be one of those people. I wasn’t. Now, I’m on a mission to make sure this sweet little boy is not one of those people either. My goal isn’t to raise the most money, although anything at all that you can donate is helpful to their family. My real goal is to change his circumstance through the power or prayer– so that in 5, 10, 20 years — not only will I still be here, but I’ll be alive and looking at new photo’s posted to Roman’s instagram of a boy who was given a second chance at life.

Help me, please.

Help me to help Roman. Read this and share it. Share it and then share it again. Follow his Facebook, follow his instagram, spread his Go Fund Me page around like wildfire. I can say in absolute truth that support, PRAYER, and positive energy is half of the battle. I want to flood heavens gates with sincere and genuine positivity in the highest hopes this kid lives to see the beauty this world has to offer — that he is able to experience the excitement of Disney World — that he is able to breathe without oxygen machines and eat without feeding tubes. It sounds far fetched — it may sound impossible — I am here as living proof that it IS possible.

Follow him everywhere. Look at his photos. Read his story. Say his name out loud. Raise awareness and raise your hands to the Lord in the most desperate need for this boy’s life. Be a part of a miracle. Pray so deeply, so wholeheartedly, that the universe can not possibly deny the energy being poured out this little boy’s way. In the future, I hope to be able to update you that Roman has been accepted for all he needs… and when that happens, I hope you find peace and take pride in knowing you had a part in the power that changed someone’s life.

To Roman’s mom and dad — I see my own parents when I see you. Two people who have given a beautiful soul a chance at life. Two people who, if you could, would take away every ounce of your child’s suffering without question. You two, like my own mom and dad, are examples of the purest form of selfless love. Keep decortating hospital rooms. Keep spreading the word. Keep your faith and never lose hope.

Like I said in the beginning, sometimes, some stories find a way into our hearts and stick with us. We’re used to carry out works of mercy and purpose for a greater good. Help me to carry this one out. Help me to help someone through the power of prayer, and when you come across a story that hits you as hard as Roman’s has hit me, go after it with everything inside of you.

Follow Roman’s story:

On instagram @PinnedDownWithRoman

On facebook at http://www.facebook.com/romanburnette

On GoFundMe at http://www.gofundme.com/romans-lung-transplant 

Coffee with Rosemary: ☕️

If you ask me what one of the most important things in life is, I will tell you that at the top of the list is keeping in touch with the “good” people throughout our lives. I’m one who truly believes that every single person we come into contact with, from our 5th grade teacher, to an ex love, to the cashier at the grocery store, has been introduced to us for some reason or another. I like to think it’s for learning experiences, but whatever the reason, we connect with every individual differently. If you’re lucky, like me, you meet people along the way that stand out on a different level among all others. These people aren’t common and sometimes they’re not meant to stay, however, permanent or temporary, they refresh our souls, they lift our spirits, they make us think in different ways and feel such powerful energy — much deeper than what’s felt on the surface daily. These are the people you need to keep in your life at all costs – whether it’s a phone call every few months, a lunch once a year, grabbing coffee, a letter to let them know their being thought of – these actions are crucial. Which brings me to Monday’s coffee date with Rosemary, formally known to me as Ms. Goodwin, my 5th grade teacher. We mutually decided now that I’m 28 (she taught me when I was 11) that it’s OK to use her first name. (Going to take some getting used to)

Rosemary is one of the “good” people. The type of person so genuinely good that she’s almost naïve to the daily downers in this world that so easily steal our joy. I get together with her maybe once a year. It’s refreshing for the both of us. We meet for coffee and talk for hours… but what we talk about is the real key to what I want to get across through this blog post. I feel as though Rosemary and I talk about this life, spirituality and faith on a level that only few actually understand. We engage so deeply in the power of the human spirit that I actually used to be self-conscience that people would hear us at a nearby table and seriously think we were nuts. I don’t feel that way anymore. In fact, I feel privileged to feel emotion so deeply. I actually kind of feel sad for those who don’t quite understand how much potential the human spirit truly has. I look at each one of us as having this tiny flame inside our belly and unfortunately some people live their life never knowing the excitement this world really has to offer. On our normal, day-to-day routine, that flame burns low and slow – lit, but just enough to keep us fueled for that day. Here’s the way I imagine it visually: sometimes, something happens like hearing good news, a girls night out, your team wins the Superbowl or that cute guy in your college English class starts a conversation with you. Things like that cause a “breeze” and if only for a moment, our flame brightens.

This is something I’ve imagined and felt for as long as I can remember, but especially now after my second chance at life: the need to fuel that fire – and the “good” people that I’m talking about in our lives help us to do just that. Surround yourself with them 💛

I want to tell you a little bit about my conversation with Rosemary because we have a very similar outlook on this flame image, which is the real topic of this specific blog. The ways to fuel the fire inside ourselves are endless. As human beings, regardless of religious belief, I wholeheartedly believe we are all spiritual creatures with the need to feel alive — there is nothing ordinary about being a spiritual being. So, why live an ordinary life? We are extraordinary beings. Rosemary and I talked about the way so many people live with such little passion, so accepting of the “ordinary” and mundane.

I have a statement I started using after I received my gift of new lungs: my gift of a new life. I say “when it does come my time to leave this earth and I stand before God in the kingdom of heaven, I want to stand before him with NOTHING AT ALL LEFT INSIDE ME WHATSOEVER. I mean that. I want to have used every single ounce of love, passion, excitement, kindness, service, everything. I want to have used it all down to the very last drop – everything I’ve been given — my purpose, my service, TAKE IT ALL here on this earth. Only then will I be ready to leave.”

I wish that way of life upon all people.

I truly believe we have this fire inside all of us waiting and wanting to be set ablaze.

– and it should be, in some way, EVERY. SINGLE. DAY. I know this because I’ve felt it. I’ve found ways throughout my entire life to keep this fire burning. There are things, people, places, that strike us all differently but that have the power to strengthen our fire.

These are the things I talk about with Rosemary. This is why we make it a priority to keep in touch. And here’s why it’s so important…

I know I talk about it a lot, but I said earlier, some people in this world cross our paths to teach us things. I don’t believe I went through all that I have been through to keep it quiet. When I was told (four years ago) that I had only weeks left to live, I was surprised at my initial thoughts. Instead of thinking of the time that I had left, I started thinking of the time that I had already spent. Instead of wishing I had done more, experienced more, loved more — I was proud. I had spent so much time leading up to the end of my life that I worked to create a life of fullness and service that I was proud of. This included keeping in touch with all the people throughout my life that had changed me, taught me, influenced me in any way. I will admit, it was always a little different in my situation because I grew up with this “life expectancy” from having a chronic illness that lingered in the back of my mind, so from a young age I was always looking for ways to experience all this life had to offer and make the most of what I’d been given. A lot of times this way of living would get me in trouble — but I don’t regret a thing. Every once in a while, during high school, I would pack my little Jeep full of friends in the morning and drive right passed O’Hara when everyone else was rushing through the halls to their homerooms, trying to avoid demerits for not being in your seat exactly when the bell rang. Meanwhile, Carrie Underwood’s CD played on repeat and we’d sing the whole way down to Ocean City on a Tuesday morning during February. We would reach the beach, stand on the rocks at the ocean and laugh together as the waves crashed. Every time we did this, I’d close my eyes just for a second. I’d let the cool, heavy wind blow through the strands of my hair, standing still in my uniform and think, “this is it.” “THIS is life, and I’ll never feel bad for myself because I suffer, because in this moment, I’m alive.” When I say alive, I don’t mean I was living and breathing — the truth is even at this age I was barely breathing. When I say alive, I mean I had this undeniable, uncontainable energy flowing through me powerful enough to think I’d been standing on the edge of a cliff ready to jump. I never regretted these choices — passion vs. normalcy– not even when my mom text me “I’m in O’Hara’s parking lot and your car isn’t here. You have 60 minutes to get back before I call the school and you’re not going out for a month.”

Once, in college, I was walking through the courtyard on my way to a playwriting class that started in 10 minutes. It was the review class for the final exam that was two days later. I’ll never forget this day. It was springtime and the weather was just one of those days where the sun warms your face and its like an angel smiling down. The kind of breezy day where things are starting to bloom and you have to take a second to stop and be thankful for exactly where you are. Well, I did stop, and I looked down at my phone. I had a message from a friend who had a motorcycle, “Today is too beautiful not to go for a ride. You busy?”

-“Nope. Pick me up in the courtyard.”

Now, don’t go abandoning all of your responsibilities. That’s not what I’m saying. I went home later that night and studied my ass off for that playwriting exam. I got a 100. But, I assure you, I couldn’t tell you one question or answer on that test today. I can however explain exactly how the wind felt on my face through that helmet, the racing of my heart in my chest, every street we went down and the sight of that beautiful golden sun beaming through the trees when I’d look up into the sky.

I encourage you with everything I have inside of me to do things like this. Because when I was sitting in that University of Penn office, these were the moments I was thinking of. The moments in February on the beach, when I should have been freezing, but I was nice and warm – not because of the shots of whiskey we were probably taking, but because the fire in my soul was raging with excitement for this incredible life.

Now, years later, I dedicate my service to hospice care, I often wonder if our patients think more about the life they’ve had, more so then the life they have left. The truth is, at one point, regardless if your 24 with Cystic Fibrosis, 100 with heart failure, 88 with Alzheimer’s, or 40 with liver disease, there is going to come a time where you too will be at the end of your life. I want those of you that I’m able to reach through writing to take advantage of this information and make it a priority to be constantly fueling your fire. If I hadn’t lived my life feeding this fire by young summer nights, giving and receiving love, serving others and following my heart, singing out loud and recognizing all I’ve truly been given, I would have had nothing to look back on. It also turns out, during that time I thought was the end, I had an awful lot of people…”good” people there for me, praying for me, keeping me in the best possible places to be — in their hearts, their minds and their prayers.

Before I close, one of my strongest passions happens to be with the elderly. I don’t know why. Some people have the passion for working with babies, animals, children, abuse victims, etc. I’m also aware that although extraordinary in a positive way, this life can and is often times EXTRAORDINARILY HARD, too. Not everyone has the privilege to work in the field where their heart lies, but that’s no excuse to let your light burn out. Make it a priority to set time aside for what really makes you feel alive.. even if it happens to be something simple, like making a call to an old friend to keep the “good” people in your life. And if you take anything at all from what I’ve written today, remember to feed your fire, so that when your time comes, and you think back on the life you’ve lived, the love you’ve provided and the compassion you’ve given, you’re proud. Leave nothing left. Use every since ounce of your energy, kindness, passion, service, heart, soul, all your love, all your light. You’ll be amazed at what you’re filled with in return.