The End of the Tunnel

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

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

FullSizeRender-13
A quote I found on @shinetext Instagram…thought it was perfect!

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

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

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

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

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

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

Until next time,

Jackie

The Truth About Scars

IMG_0650
You can’t see my scars

The truth about scars is that we all have them, emotional scars or physical scars. And many times, we won’t see other people’s scars. My scars will be with me forever, but so will all of the doctors who saved my life by giving me each scar. All of my scars tell the story of a procedure that saved my life, a story from a doctor who spent many years learning how to save lives.

Sitting up and looking down for the first time after waking from my medically induced coma was horrifying. My stomach was covered in scabs and scars and wound vacuums. After I became so sick, I swelled. It wasn’t just, “I’m feeling bloated today” swelling. It was, “You looked like the Michelin man swelling.” I more than doubled in size. The skin on my stomach couldn’t handle how fast my body expanded, so it blistered to keep up. And these blisters turned into scabs that have now faded into scars.

There is a new scar on my stomach, a vertical line leading from the middle of my previous scar down my abdomen, about 6 inches long. Together, they form a “T” shape. Dr. Teicher gave me that scar. He emergently came into my transplant operation to open me up because my stomach area was swelling.  He saved my life.

There is the small horizontal line, where a feeding tube used to be, from Dr. Kodama. I gained enough weight to have the feeding tube removed. And a small circular scar in my left groin from ECMO, where a large catheter previously was. Dr. King, Dr. Dalton and Dr. Ryan gave me these scars, working together to get me on ECMO as soon as possible because my lungs had failed. Add in a scar on my right groin from surgery to remove a large hematoma, an internal bruise they had to take out. That surgery took place in my hospital room.

IMG_0636
My body tells my story of overcoming all the odds

I have some scars on my neck, the most visible, from the first time I was on ECMO and from dialysis catheters. There’s a scar from a tracheostomy in the middle of my neck. I was kept alive from these machines that caused these scars. Dr. Howard decided to put me on continuous dialysis and I still believe today he, with his team, is the reason my kidneys gained back just enough function for me to eventually stop dialysis. Dr. Bobby gave me the scar from the trach. Each day I would ask for the trach because I hated being intubated by mouth and finally he said it was time. Dr. Bobby also took my trach out and was the first person to see me without the trach and breathing on my own with my new lungs. Dr. Swamy closed the trach hole, leaving a small line that hides between the wrinkles of my neck.

There is a foot long scar atop my pelvis area from surgery on my hip. Dr. Schulman & Dr. Hymes each operated to clean out the fungal infection and remove a hematoma from my hip area. The tiny circular scars that reside on my arms and chest are from many picc lines and central lines placed by many talented interventional radiologists. I have spent many hours in “IR.”

And I can’t forget about the most important scar of them all, my transplant scar forming a wide “w” from armpit to armpit, the clamshell incision, they call it, which allowed for the transplant surgery without breaking any bones. Dr. Brown decided it was time to put me on the list for a transplant, thus the life-saving transplant, thus the clamshell scar. And Dr. Ryan, my cardiothorasic surgeon, created that scar by lifting my rib cage, scraping out my old, infected, lungs, and gently placing in new lungs. That surgery was 11 hours.

Those are the many scars that fall across my body and those are just some of the doctors who gave me those scars while saving my life. Those scars tell my story of overcoming all the odds stacked against me. Without talking, my scars tell my story. I’ll take all of these scars if it means I have my life.

1/25/2018 – 1/31/2018 on Instagram

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

1/31/2018

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

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

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

1/30/2018

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

1/28/2018

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

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

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

1/27/2018

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

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

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

1/26/2018

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

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

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

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

1/25/2018

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

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

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

Much Love,

Jackie

Health Update #2

IMG_4579-1
Thanksgiving 2017 in the hospital

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

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

IMG_0068
White House Christmas Tour; December 2017

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

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

IMG_0343
Winery fun with friends; January 2018

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

IMG_0378
Eating a beignet at Bayou Bakery in Arlington, VA

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

Peace Out 2017!

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

IMG_3099
Boston, MA – July 2017

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

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

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

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

3. Keep a positive mind.

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

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

6. Go on my first hike since transplant.

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

8. Take a cooking class & cook more often.

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

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

Some photos from 2017:

IMG_2648
First Lungaversary celebrated with friends
IMG_4394
Getting asked to be in my donor’s sister’s (Sara) wedding
IMG_2023
Fab Fae
IMG_1861
Stone Tower Winery fun with friends
Peace 2017
Peace out 2017!

My Mom is Simply Amazing

Mom1November is National Caregivers Month so I thought this was the right time to post about a very special person, my mom. I don’t even know if one simple blog post will do her justice, but I’ll try. Being a caregiver isn’t easy. It means you’re committed to helping someone, before you can help yourself. It means that you’re willing to put someone else’s needs before your own. Being someone’s caregiver is a choice, it’s not a requirement. And the decision to be one is done out of love. My mom is not only my caregiver but she is also my Dad’s, who has muscular dystrophy.

Mom5
NYC Summer 2017

The thing is, my mom didn’t chose this life. When she married my dad neither of them knew he had MD and they definitely were not expecting to have a child with Cystic Fibrosis. She has never once complained about the life that was chosen for her. She juggles taking care of my dad, myself and finding time for things she loves. If you walk into her bedroom you will find lots of yarn, spinning wheels and a weaving loom. Textiles are her thing and she is an amazing knitter. She can make anything from a simple scarf to a complex sweater. When she has to miss a knitting retreat or dinner with friends to help my dad or me, she says that she wants to be there with us. That she would rather be there to help us get through our struggle than go have fun with her friends. If that’s not pure love, then I am not sure what is.Mom3

You see, I’m alive today because of my mom. As a child you never want to do hours of treatments a day or spend time in the hospital. But my mom ensured everything got done and would spend every day with me in the hospital, finding ways to entertain me during it all. She kept my medications ordered and organized over the years and has spent hours at a time working through insurance issues. Now a days, I manage my own medications but that is because my mom set me up for success when it was my time to take it over. She prepared me for when Cystic Fibrosis would become my disease and when I would have to do things on my own.

Mom6
Mt. Vernon Rehab Hospital (Oct. 2016)

Last summer when I was in the hospital she came every single day. My mom’s presence made me comfortable. Some nights after she would leave me for the evening, I would be uncomfortable and unable to get to bed. I would send her a text telling her I couldn’t get comfortable or to sleep and she would jump back into the car and come back to the hospital until I fell asleep. Her presence made me comfortable. Her presence makes a lot of people comfortable.

Everyone who knows my mom can attest to the type of person she is. She is a firecracker and knows how to handle a tough situation. When I was in the ICU last summer, the nurses knew she was a ball of fire. She taught kids in drug rehab and every single one of them loved her, they learned from her and they graduated high school because of her. She knows how to give that tough love that many people need. My mom is also very loving. She always wants a hug in exchange for a glass of milk and would never let go if it was up to her. I still notice her frequently embracing my dad even though he can’t hug her back. That’s the thing about my mom, she does things out of the kindness of her heart and never expects anything in return.Mom2

So this month, for national caregiver month, I wanted to make sure everyone reading my blog knew how amazing my mom is. How amazing of a caregiver she is. How kind of a person she is. And how I’m alive today because of her. If you’re ever privileged enough to meet her, you’re one lucky person.

Why not me?

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

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

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

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

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

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