Good News– About time!

Well y’all, I have some great news. About time, right? Let me start by saying that I’m thrilled with this news. It’s incredibly exciting for me as well as for my family, but, I am writing this post and explaining this news to you because although it is wonderful news, and it is what I’ve been waiting for forever, it’s not going to be a walk in the park, piece of cake, cure all for me… it’s a complicated treatment that is not widely used for my condition but nonetheless, my best shot.

A couple of days ago I got the news that my IVIG has finally been approved, and not just for one dose, but for 13 rounds.  We’ve waited over a year and seen 3+ specialists in order to make this happen, it’s been a crazy battle to get to this point. On Monday 2/19 I will have my first round!

IVIG is IV immunoglobulin therapy. Essentially it is meant to reboot your immune system and help alleviate or reduce the symptoms of autoimmune or immune conditions. For me, the catch is that I do not have the typical conditions that IVIG is currently used to treat. There are many trials going on with how IVIG can help different conditions, gastroparesis included, but there’s no FDA approval for IVIG as treatment for it yet. That said, this is my only viable option left and because I do have an immunodeficiency, I was finally able to get it approved.

Throughout this process I’ve heard a lot of “slim possibility,” “doubtful,” “statistically…” “honestly…” “be prepared for disappointment…” and all of the other phrases doctors use to tell you they don’t think things will work…

BUT, we heard someone say, “it’s worth a shot,” and here we are today, after a long fight, ready to start a new trial.

IVIG is something my family and I decided was our best chance for change. Not all of my doctors agree, but when do they ever? It’s not a treatment widely used for gastroparesis or EDS/Dysautonomia, but because my immune system is involved, there’s a chance my GI system could respond in some way to it. My motility specialist is the one who suggested it as one of my last 3 options for treatment; today, this is the only one of those three options that I have left.

We don’t expect miracles. In fact, I try not to make expectations at all. I hope it works. It would be incredible. But if it doesn’t, I don’t want to be crushed. I’ve been warned by doctor after doctor that it is likely not going to help, so I’ve pretty much got that in my head, but I also have my own hope and positivity in there thinking maybe this is going to be it. I’m not a blind optimist, but I do have hope. It may be hard for some of you to understand that combination of emotions and feelings, but I’m glad it is, because it means you’ve never had to be this sick, and for that I am thankful.

I wrote this update because I know you all care, I know you all want and deserve an update, but I also needed to share with you how this process is going for me. It’s not going to be an easy treatment. It’s not a miracle drug. It’s not a guarantee of success or relief. It’s a treatment that is extremely hard on the body. It has major side effects. It’s a long shot. But it’s my only shot.

IVIG is what I’ve been fighting for and waiting for for a year. I’m so, so relieved that the fight for approval is over, but that doesn’t mean my battle is over, it’s onto the next step now. My family and I have worked so hard for this; hours of phone calls, emails, paper work, doctor visits, denials, tears…what a journey it has been, and now the journey continues. It will take at least 3-4 months to see any results even if this treatment does work. All great things take time.

What I need in this time is for my support team to just be here for me. I will update if there are any improvements or changes, I will update on how the treatment is going and if I am having any side effects or complications, and I will do my best to post regularly so you know whats happening in general. Try not to set expectations, have no disappointment, no pity or sadness if I see no results, no explanations of why it hasn’t worked or reassurances about when it will, just be here for me.

All I need is love. Support. Laughter. Company. Friendship. Exploration. Care. Distraction.

I’m sick and treatment is hard and unpleasant, but I have my ways of coping and I am still a person and sometimes I just need to be Rachel.

 

xoxo

Welcoming in a New Day

Another year gone, already?! I’ve read and heard so many people saying that time is flying by or posting long facebook posts about all that was accomplished or what they learned in 2017 and what their goals are for the new year. And yes, sure, I could do the same, but in all honestly, my illnesses have changed my perspective on the passage of time and watching one year pass and another begin just isn’t as huge of a celebration anymore.

My life has changed drastically over the last 5-6 years and I’ve grown and learned so much, but I’ve also lost many parts of myself and so many aspects of my life that used to create that excitement and significance of a year passing.

I’ve been out of school full time for three years now, and by leaving school I also left my friends, my social life, and my education behind. At the time, I had no idea I was leaving for an indefinite amount of time, and now I’m watching my friends graduate, some of them have even gotten engaged (s/o to my first year hall-mates who just got engaged to their high school sweethearts <3), and many of my high school classmates have even settled down and started families.

Before leaving school and having my illness progress into an extremely severe case, I had so many goals and plans for my life, but being dependent on feeding tubes and a hickman line (a long term IV in my chest) for nutrition and hydration and being dependent on my parents for everything from setting up feeds and sorting my daily meds to driving me to appointments and staying endless nights in the hospital has really changed things for me.

I no longer look at the long term or “big picture,” but instead focus on getting through each day. Some days I just focus on getting through each hour, trying to survive the time between each dose of nausea or pain medication. My every day life can get monotonous at times when I am home bound or bed bound, sleeping more than I’m awake, awake only to take medications, go to the bathroom, start new feeds, etc. The days blur together when you do the same things every day and have little to look forward to. Although many of my days are full of pain and discomfort, its always possible to find something to laugh at, smile over, or appreciate.

Instead of looking back on what has gone on in the last year or thinking of what I can accomplish in a new year, I continue to focus on each day and every small beauty and accomplishment that occur in that day. Although I don’t have any huge plans for my future, I do have dreams and goals, and I’ve gotten really good at appreciating the small things in life, if you take time to look, there’s something positive in every day.

A bit of an Update

It has been way too long since I’ve posted. I’ve been struggling with symptoms affecting both my mind and my body and I just haven’t had the brain power/energy to finish a post! My illness is a physical illness, but it stems from my brain and my autonomic nervous system so I have both neurological and physical symptoms, many of which are “invisible” to anyone who doesn’t know about them.

I’ve written before about how my Dysautonomia causes severe brain fog—this includes problems with word finding and sentence formation, short term memory loss, trouble focusing/short attention span, and a lot of day dreaming/zoning out. Right now my Dysautonomia is flaring because I had a virus and I’m not getting the full 2 liters of IV fluids I am supposed to get because of a back order that is in place due to the hurricanes that took out a major supplier in Puerto Rico.

Not only is this flare causing me to have extreme brain fog, but I’m having other symptoms as well such as falling asleep or losing consciousness while sitting or standing due to lack of blood flow to my brain. This is a common problem for those with NCS (one of the types of Dysautonomia that I have) but it is not only terribly annoying and embarrassing, it’s debilitating and limiting because I can’t drive or plan anything that involves standing or sitting for too long, and it’s hard to be around other people because I can fall asleep mid-sentence or even worse, in the middle of someone else’s sentence! Let’s just say I won’t be going on any first dates any time soon 😉

Because of my flare of Dysautonomia as well as an increase in severity of my migraines, I also struggle with overstimulation or hypersensitivity to sound, noise, touch, and smell. Overstimulation is something that a lot of people would think of in relation to autism or ADD in children, but it’s something I, as an adult, struggle with every day. Any loud or repetitive noises or bright, colorful, or flashing lights can send me into a terrible episode of overstimulation that leaves me in full body pain and spasms as well as with a migraine that doesn’t respond to medication. Some days my skin hurts to the touch like there’s a bruise spread across my whole body. Before my diagnosis my family thought I was just crazy and picky about noises, but now we know my brain really just can’t handle a lot of these noises, lights, etc.

Winter is always a challenge for me because I deal with intense pain flare ups due to the cold, lots of migraines, and my GI system always gets even worse than normal once I hit November/December, this year just seems to be throwing a few curve balls at me with the neurological symptoms being so significant on top of the normal flares.

Luckily I’ve learned how to adapt and work around most of these symptoms so I’ve still enjoyed getting ready for Christmas and our Christmas day was lovely and (relatively) peaceful. It’s so nice having my family home for an extended break—having company and my care team here makes things both easier and much more fun J

I hope to start being able to use my brain a little more so I can update on some more things and also share more about my Newbie Tubies Project and how I’m hoping to get that going by the New Year!

Thanks for reading, Happy Holidays!

My Holiday Inspiration

I was listening to a Christmas CD tonight while I was painting and I was struck by the lyrics of one song in particular. I don’t know what everyone else thinks or feels about this season (and really any time of the year), but I’m a strong believer in the power of love and this song just really hit home for me.

The song said, “The story of hope and joy and peace…. let anger and fear and hate disappear and let there be love that lasts through the year.” (Alan Jackson- Let it be Christmas)

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Christmas Paintings!

Maybe it’s just because I’m exhausted and emotional from post surgical pain, medications/side effects, and insomnia, but this just made me stop what I was doing and really ponder and appreciate. Christmas is my favorite time of the year, but it’s not always a picture perfect holiday. We’ve dealt with years of illness, our fair share of (extended) family drama and arguments, tears on Christmas Eve, and anything else a “normal” family (hah, normal?) may see. However, in the end, we come together and we celebrate love and we spend time together and that’s what matters.

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The day after hearing that song, my good friend posted this amazing post on Facebook about love and family and again I was just struck with how much I related to that post and how again the power of love was shining through and someone else was recognizing and sharing that. I’d like to share that post with you…

” People always ask me how I stay so strong and how I’m so positive. Well, I’m not always strong and sometimes I feel like nothing will ever be okay, but I’ll let you in on a little secret. I was born into a family of warriors. After each punch life throws at us, we help each other up and we battle it together. No one fights alone and every one of us has scars of courage to prove it. At the end of the day, our love outshines any cloud of darkness. Together we can do anything through love.”
-Carolanne Monteleone

My family and I (parents and sisters) have been through hell and back just trying to stay on our feet through each “punch”, each trial we’ve been through, but the key to that is that WE go through each trial. Together. I am never alone through this long and challenging journey I am on because I know my family will never leave my side. Sadly, I am one of the lucky ones; I’ve seen first hand that not everyone, not even every family member, works that way.

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Decorated IV pole

Love is one of the most powerful emotions a person can experience. It can make you do crazy things, but it also brings about the best things in life. To love unconditionally and to be loved unconditionally is one of the best gifts you could ask for, and you rarely find that outside of your family (until you get really lucky 🙂 ).

Families should always share unconditional love– parents, spouses, siblings, grandparents, cousins, everyone included! Life is short. Life is full of ups and downs, arguments, differing opinions, heart break, annoyances, cold shoulders, and regrettable moments, but it’s also full of laughter, hugs, big smiles, great photographable moments, tons of joy, milestone moments, and most importantly… LOVE. So why do we waste so much time being angry? Holding grudges? Arguing over the past? We should be together celebrating, making memories, being joyful, sharing happiness and love.

This Christmas season I urge you to love unconditionally. Find forgiveness in your heart for those who have wronged you. Don’t ever take being treated for less than you deserve, but always remember that life is short and relationships with loved ones are precious. Let only positive thoughts into your mind and share those positive thoughts with others; always try to focus on the good, there is so much of it.

Spread love. Laugh endlessly. Find your happy and share it with your loved ones.

Happy Holidays!

A Day with Dysautonomia

I’ve been dealing with dysautonomia since I was a teenager, really even longer before my diagnosis in high school. It started out with shortness of breath and heart palpitations before moving into full on syncopy and fainting spells and eventually complete autonomic dysfunction. Today, although my dysautonomia is in many ways managed better than it has been before, it still affects my body and routine every day.

Although my fainting spells have been minimized by doing twice-daily saline infusions, if you look deeper you find that my dysautonomia is still very much present. I struggle daily with common symptoms like dizziness, accelerated heart rate, and fatigue, but I also have symptoms that are less talked about.

I struggle with temperature regulation, being unable to stay warm if I go anywhere with a temp under 65-70 degrees, even if I’m bundled up and only there for a couple of minutes; this includes grocery stores, cars, outdoors, and my own house during the winter. Something as simple as changing my clothes can send my body temperature drops as low as 91 degrees F – hypothermia is 95 and below. I joke about my “hibernation” during winter, but it’s partially true, being that cold and unable to warm up is not a fun –or safe– feeling. On the other hand, if I’m fatigued or talk too much (no joke), I run low grade fevers and have to put myself in a “time out” to let my body rest and recover.

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I also struggle from severe adrenaline rushes. My blood work shows high norepinephrine and dopamine levels which you would expect from someone who is overly excited or even scared, maybe from sky diving or being in a high speed car chase? Well, I get them from standing up or over exerting myself. When your body has to work extremely hard just to keep you on your feet, it sometimes goes into overdrive. These adrenaline rushes either leave me hyper during the day or up all night, but either way, I’m exhausted and weak when they’re over.

My dysautonomia has also contributed to my digestive tract failure and my chronic pain. Although I have other conditions as well, these are all comorbid and interact with one another making it harder to treat. I’m on 24/7 nausea medication and daily pain medication as well. I struggle with daily migraines and occipital neuralgia. I rely on tube feeds and IV fluids to keep me nourished, hydrated, and able to stand up without passing out.

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Although there are many other symptoms I struggle with, these are just a couple that are currently having a big impact on my life.

Dysautonomia is an umbrella term for a multitude of conditions and needs more research and awareness. There are way too many people suffering from this condition who deserve treatments and a cure, but we have none.

To each of you reading this, thank you. Please continue to read, share, and educate others on these conditions so that one year we can write about the cure.

Ehlers Danlos Syndrome: When Things Went From “Promising” to “Progressive”

I was diagnosed with my first “real” chronic illness at age 16. In reality, I had been having symptoms for a long time, but they had always been passed off as hormonal symptoms, asthma, growing pains, etc. At the start of my junior year of high school I was diagnosed with Dysautonomia/POTS along with three other types of tachycardia and Occipital Neuralgia. I was experiencing severe, daily headaches, chronic fatigue, hypotension, tachycardia, pain, and a myriad of other symptoms. Although the doctors I was seeing did tell me that these illnesses were chronic, they also told me that because of my age and how the illnesses presented there was a high likelihood that I would grow out of them by the time I was in my early 20s. Although I was struggling at the time and had to change many aspects of my lifestyle to cope with these new symptoms, my parents and I had hope that this was only temporary and we would see improvement.

About a year later when I had just started my senior year of high school I was just getting over pneumonia when I started seeing an increase in my fainting and then began having gastrointestinal symptoms. Within a few weeks I went from vomiting once or twice a day to not being able to keep down any of my meals. By November I was taken out of school and placed on homebound due to my inability to attend classes regularly; my state of health was in rapid decline. In December I was admitted to UVA hospital where they were finally able to put a name to what was going on… gastroparesis. My stomach was essentially paralyzed and had stopped being able to process or move food through. At the time they told me it was a chronic condition but that in young people with no other pre-existing conditions it is often post viral and will go into remission or can even go away completely within 9-18 months. They fully expected me to fall into this category and told me that adjusting my diet and taking nausea medication should get me through until this time passed.

Although I did see temporary improvement with my gastroparesis, it obviously did not pass. About a year after my diagnosis I had my second “flare up” and ended up re-hospitalized at UVA and eventually ended up with both a central line and a feeding tube. After seeing multiple specialists including cardiologists, electrophysiologists, motility specialists, neurologists, GI doctors, a psychiatrist, rheumatologists, dysautonomia specialists, and I’m sure I’m missing something, I ended up finding out that my POTS and my GI dysmotility/gastroparesis is likely all caused by a genetic condition called Ehlers Danlos Syndrome (EDS). This diagnosis is what changed the dialogue surrounding my health.

EDS is a group of connective tissue disorders that are passed down genetically and cause a defect in the collagen in our bodies. I have hEDS (previously EDS type 3), which is also known as hypermobile EDS because one of the most distinctive factors is having hypermobile joints (having hypermobile or double jointed joints does not mean you have this condition, so don’t worry!). Because of my collagen defect, my joints are loose and my connective tissue is “stretchy,” leaving me with joints that sublux or pop out of place frequently and are prone to dislocation, skin that is stretchy and bruises and scars easily, and a body that bends and folds in funky ways. EDS also causes me extreme pain almost 24/7, it has caused osteoporosis to develop at age 20, led to chronic nerve pain, and it affects every part of my body down to my eyesight, my hair and nails, and my organs.

For me, EDS is the most likely cause of the autonomic failure that has caused my Dysautonomia as well as the cause of the failure of my GI tract. The tests I had done last fall showed that my entire GI tract is now affected, meaning the paralysis and dysmotility has moved beyond my stomach and into my intestines and my colon. Sadly, EDS is a lifelong condition that has no cure and very few treatments. When I got diagnosed with EDS, doctors stopped talking about growing out of it and starting talking about “comfort” and “symptom management.” The dialogue changed and things got a lot more serious. We have a lot of hope for improvement in my symptoms and my quality of life and we hope every day that someone will discover more answers for me and everyone else who is living with these illnesses, but EDS changed the game for me.

I don’t write this to scare you or ask for pity, I write it because it’s awareness month and I think it’s important to understand that there are illnesses out there that go unnoticed and unfunded and you only hear about it when it hits someone close to you. Heck, I had no idea what gastroparesis, POTS, or EDS was until I got diagnosed, but now my life is literally forever changed by them and even I don’t have answers. Doctors don’t have answers. So I write, I share what I do know, and I hope that maybe the next girl will find out a little sooner or find the right doctors a little faster. Awareness is important, so thank you for reading and thank you for sharing!

Adventures of a Tubie

Have you ever had to make a decision between what may be smart or practical vs. what would make you happy or what would be fun? People often make these choices in small ways every day when it comes to choices about what’s for dinner, whether to study or go out with friends, what to wear, etc. One of the biggest lessons I have learned in my journey with chronic illnesses is that life is short and sometimes it’s worth a little bit of impracticality if you’re just in need of some fun.

I spend a lot of time taking care of myself and majority of the time my health comes first. I have a lot of doctors appointments and I spend anywhere from 16-20 hours a day hooked up to my IV pole on various tubes for infusions and feeds. I take countless daily and as needed medications and require a great deal of rest due to chronic fatigue and pain. That said, after a rough recent admission—which you can read about in a recent article here—my parents and I decided that I am in need of some fun.

I have some fabulous friends who live with similar health conditions that I do, but most of them live hours, states, and even countries away! Taylor is one of my best friends and she lives in Texas; she has two or three of the same conditions I have and has a feeding tube! Taylor came to visit me and our other friend, Macy, last summer and we had an amazing time! We have had two other trips planned but both fell through due to our health at the time.

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You’d never know each of us have tubes, central lines, and a handful of chronic illnesses! This time together was so precious.

Well, even though my health is not currently considered “good” or even stable, I’m going to go visit Taylor! I will fly to see her and spend a week with her in Texas! Considering most days I hardly leave my house right now, this is a huge undertaking for me, but it will be so good for my spirit. And although we are both in our early/mid twenties, Taylor and I are both quite sick and have similar restrictions so we will be good company for one another 🙂

I am so excited for this trip. I do have some anxiety about flying and traveling by myself and I know that I will need a long time to recover when I get home, but it is totally worth it. Although I can’t escape my body and my illnesses, I can take a small break from all of the stress that comes along with appointments, phone calls, insurance, etc. (or at least I can try!).

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Sometimes you just gotta pretend you’re a normal 21/24 year old and duck face it out 🙂

This trip does not mean I’m feeling better or I’m recovering, it just means I’m doing something that is fun and something that will make me happy. I’m taking time to be young and savor this part of my life as much as I can. We don’t have time to waste, so even if all Taylor and I do is watch movies and talk and nap, it is so worth it. Even if it takes me two months of sleeping when I get home, it is so worth it.

Don’t forget to choose the option that will make you happy sometimes, even if it may not be practical.

Thanks for reading.

xoxo

Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is a group of genetically inherited connective tissue disorders. EDS causes a severe defect in the production of collagen, which is the part of the connective tissue is what provides strength and elasticity to major structures in your body such as your skin, joints, and blood vessels. EDS can range from being mild to being life threatening from person to person.

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EDS mama and nurse 🙂

Ehlers-Danlos Syndrome is considered a rare disease, and although I have the most common type, EDS type 3 or hypermobility type, there is still a major lack in research and funding. There are six different types of EDS, some more severe than others. There is no cure for Ehlers-Danlos Syndrome and very few treatment options.

EDS type 3 is diagnosed based on clinical evaluation and family history. Doctors look at joint hypermobility using a nine-point scale called the Beighton scale. I scored an 8/9 on my clinical evaluation, you generally need a 5 to be diagnosed, but it varies some. Other things they look for are easy bruising and scarring, stretchy and soft skin, subluxations and dislocations, joint and back pain, GI symptoms or bowel disorders, dental crowding, and postural orthostatic tachycardia. I have all of these symptoms and we found that my mom fits much of the criteria for EDS as well.

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My shoulder is in the process of sliding out of place in this photo, just because of how I was selfie-ing! Oops!

That’s a simple medical definition of EDS, but it is such a complex illness and causes daily symptoms and complications. In my case, we believe EDS is the underlying cause for many of my other conditions. It is likely that this genetic condition predisposed me to the autonomic dysfunction that led to Dysautonomia (POTS & NCS) as well as the failure of my GI tract. I have also been diagnosed with scoliosis, osteoporosis, and have suspected fibromyalgia that causes severe nerve pain throughout my body. My EDS causes severe joint pain and chronic back pain that often leaves me bed bound as well as constant subluxations and dislocations of my major joints such as my shoulders, knees, hips, thumbs, wrists, ribs, and collar bone. I rely on my feeding tube for nutrition and my port for hydration because my stomach and intestines/colon no longer function properly due to gastroparesis and generalized intestinal dysmotility.

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My feeding tube goes through my stomach and into my intestines so that I can bypass my stomach and receive nutrition.

Because I have low bone density (weak bones) and experience regular subluxations (joints popping in and out of place), I have to be extremely careful not to hurt myself. I can fracture bones much more easily than most and my skin bruises from things as simple as crossing my legs the wrong way or wearing boots for long periods of time. I used to be extremely active and adventurous and I loved to run and swim, but now I’m lucky to be able to take a short walk or do simple floor exercises a couple of days a week. My chronic fatigue syndrome leaves me in bed anywhere from 16-22 hours a day sleeping and resting and even when I’m awake I’m usually still just at home because of pain/nausea, daily migraines, and fatigue.

Ehlers-Danlos Syndrome has changed my life, just as it changes the lives of everyone else it affects. I have had to leave school and am unable to work due to high levels of daily pain, constant nausea, and extreme fatigue. One positive thing that has come from my diagnosis is the many friends I have been able to make from the online support communities that I joined once learning I had the condition. Making friends who are going through the same things that I am has been such a gift, even if most of them live in different states and even different countries.

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My first ever EDS friend! She also has gastroparesis and Dysautonomia/POTS just like me!

February 28th is rare disease day, so take time to be aware and spread awareness for rare conditions like Ehlers-Danlos Syndrome today. These conditions need more research, funding, and awareness so the millions of people living with rare conditions can move towards finding cures.

Upcoming Birthday

As my 21st birthday approaches (less than 2 weeks away!), I have been reflecting a lot on all that has changed this year and how crazy my journey with chronic illnesses has been. My life is so different from what I used to imagine it would be at this “milestone.” I never could have predicted the many things that have shaped me into who I am today, but I’ve made it another year and that’s something.

When I was younger, I always imagined my 21st birthday would be celebrated with food, friends, family, and of course, my first legal drink. I figured at this point in life I would be in college studying and living like a college student. I got one year in at UVA before taking medical leave; I am still working on getting back two years later. A part of me still feels like I am a first year at UVA, yet I see all of my friends getting ready to finish their third year! I can’t believe it.

This year, my illnesses have progressed to the point where I’m not able to intake almost anything orally, I have trouble even tolerating my tube feeds, and most days I spend much of my time in bed. My migraines make me extremely sensitive to sound and light so I get over stimulated very easily. I am 100% dependent on my feeding tube and my port for nutrition and hydration and I am on around the clock medications to try to control nausea and pain. My symptoms and lack of energy make it hard to plan ahead and make it so that I’m most comfortable just being at home.

My 21st birthday won’t be celebrated with food or alcohol. I likely won’t see friends or have any sort of “party.” My mother does like to try to be sneaky, so if you hear of any secret plans, feel free to inform me. I’m not a huge fan of surprises 😉  My birthdays now are usually a quiet affair celebrated with just my family. I don’t tell you this to complain, this is just how it is; for me, simple and peaceful is usually just right. Since I can’t eat and my energy levels are extremely low, I don’t require much. Chronic illnesses steal a lot from you, but they don’t have to prohibit you from having fun or enjoying special events.

Although my 21st birthday is not what I would have imagined it to be, and my life has taken some unexpected turns, I feel blessed just to be here and to have an incredible family here to help make the day as happy and celebratory as possible. My illnesses have taught me to be so appreciative and thankful for all of the small things in every day, and I know my birthday will be wonderful, even without cake or alcohol 😉

My Feeding Tube Journey

This week is Feeding Tube Awareness Week. As part of that, I decided to write a blog post about my journey as a “tubie.”

I got my first feeding tube in March of 2015. I had been battling with gastroparesis for just over a year at that point and was in my first year of college at UVA. Although typically you try a feeding tube before you resort to TPN (total parenteral nutrition—IV nutrition), I had already been on TPN for three months before this. Because I was hospitalized in December right around final exams and was supposed to return to school away from home, my doctors had placed a picc line in December in hopes that it would be short term and it would allow me to remain at school. However, when that line got infected in March and TPN was not working well, we decided to go ahead with a feeding tube.

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Picc Line AND NJ tube! Ick!

My hospital does a short-term trial run with an NJ (nasojejunal) tube before placing a long term GJ (gastrojejunostomy) tube surgically. For me this meant a two hospital stays, one for the trial run during which I had my NJ tube, a tube placed through my nose and down past my stomach into my intestine where we hoped I could tolerate feeds. Having this tube placed was one of the most uncomfortable procedures I had experienced up to that point. I was not sedated or medicated at all aside from some lidocaine ointment and they stuck the tube down my nose, past my throat and into my esophagus while I was choking and gagging, my nose bleeding, tears streaming down my face, and they kept telling me to sip on water and swallow and just hold on it’ll be over soon. Some people tolerate it fine, especially people without gag refluxes, but for me it was miserable. I could hardly talk or swallow for the two days they made me keep it in. So shout out to my many friends who have multiple, long-term NJ tubes, I don’t know how you do it.

The second hospital stay was for my surgery. They decided to place a low profile, mickey GJ button tube. I was lucky that I still saw my pediatric doctors, because they use these tubes on children and I am small enough to fit into them. Often, adults get long, dangling tubes called PEGJ tubes. My surgery was able to be done laparoscopically, but they placed the wrong size tube so the pain was much more than anticipated and we stayed in the hospital for a five days to try to manage that. I had to keep that tube in for 6 weeks for the tract to heal before switching it out for the right size and finally getting some relief.

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Tubie– this is about one year post op. I actually continued to lose weight for awhile.

I stayed in school for that semester anticipating that my feeding tube would improve my quality of life; in many ways, it did. However, my gastroparesis continued to progress and I had to make the decision to take time off from UVA and stay home the next fall. Although my feeds did help me gain some of my strength back, I didn’t end up tolerating them as well as we had hoped. It’s been quite a journey.

For a while I was able to get in almost 1,200 calories by tube every night. Because of my chronic fatigue and the amount of time I spend in bed, that was almost enough to get me by and I was still able to take in a few hundred calories by mouth. Over the first year or so, my tube feeding rate slowed down by about 40% and it took me much longer to get in what I needed and I often wasn’t able to finish feeds over night. But still, I was able to supplement some of what I needed by eating a few of my “safe” foods—potatoes, squash, simple carbs.

Other parts of tube life include daily maintenance like keeping drainage clean, flushing the tube every couple of hours so it doesn’t clog, and changing tubie pads or gauze. I deal with bloating, pain, and changes in how my tube has affected my self confidence and body image as well as adapting to how little control I have over what goes into my body.

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This is where I get my tube swapped out!

I also have to get my tube changed out every 3-6 months or every time it flips into my stomach or clogs. I can tell my tube has flipped into my stomach when my medications and feeds make me sick. When this happens, I have to schedule a time to get my tube fixed. When it is clogged, I have to call UVA and ask them to order a new tube. Sometimes it takes up to a week for them to get a new one and I go that long without receiving my feeds. (That happens to be the case this week!) I don’t get sedated for these tube swaps– some doctors use sedation, others don’t, mine just happens to be one who doesn’t. I get them done in radiology under imaging. They know me pretty well down there. It is an uncomfortable procedure but usually only takes between 30-60 minutes.

I’m about to hit my two year mark with my feeding tube and I now only tolerate a rate of 50ml an hour. That is almost half of what my goal rate was when I got my tube. My original diagnosis was gastroparesis, or paralysis of the stomach, but now my diagnosis has changed to Digestive Tract Paralysis (DTP) which means my dysmotility has moved into my lower GI system which makes tube feeding much more difficult. My colon is now greatly affected and my intestines are also delayed.

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This is the smart pill– a pill I swallowed and it tracked the movements of my GI tract and told us how each part worked (or didn’t 😉 ).

I recently switched formulas to a blended food formula in hopes that I will tolerate it better and it will make my body feel more human-like than my old formula that was full of preservatives and sugar. Sadly, I am not able to get in enough formula to gain weight. At this time, I also do not have any “safe foods” that I can intake orally to use to supplement my tube feeding. Because of this, my doctors talk about alternative options that could be in my future.

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My tube and my port peeking through!

My tube saves my life every day.  I rely on my tube and my port for 100% of my nutrition and hydration now. I can’t say I’m always thrilled about tube life, but I wouldn’t be here without it and I am so thankful for it. If you have any questions please don’t hesitate to ask!