I spent 6 years studying and learning how to become a nurse. I spent an additional year getting a graduate degree in Nursing. I have spent thousands of hours working as nurse since graduating nursing school in 2009, and even more hours working as a nurse assistant working through nursing school. The experience and knowledge I have of the medical system, one could describe as practiced or superior. (Although, I highly disagree and still have a lot to learn!)
In Late December 2015 though March of 2016 I was having increasingly difficulty swallowing. Like most health care professionals I brushed off my symptoms as something minute, while secretly thinking of all the horrible terminal diseases I could have. After continual pressure and insistence from family and friends I called my doctor who ordered an Endoscopy, commonly referred to as an EGD. An EGD is a procedure where you are put to sleep and a small tube and camera are put down your throat into your stomach and small intestine. It is commonly used to diagnose acid reflux, abdominal pain and/or cancer.
MARCH 11, 2016
I went into my first EGD appointment thinking I had acid reflux (heartburn) that caused scar tissue to build up in my throat resulting in a smaller opening making it hard for food to pass through. (my dad has this and it is very common). Well, that was not the case for me. I remember waking up from my first EGD looking at the doctor, as he mumbled words such as EOE, eosonphils, FOOD ALLERGIES and a new diet. Don't forget that I just woke up from a medically sedated state thinking I got my throat dilated, like my dad does. Instead I was diagnosed with EOE. EOE is short for Eosonphilic Esophagitis, which basically means I had a chronic allergy inflammatory disease of the esophagus (throat) where eosonphils (allergy white blood cells) build up in my esophagus as a result of food allergies causing my throat to swell and slowly decompose. AWESOME, RIGHT? P.S. EOE is rare with a diagnosis rate of 1 in 10,000 but is increasing in incidence nationwide.
I was put on a high dose of acid blocking medication along with a no gluten and no dairy diet for10 weeks with the plan to rescope to see if one of the main trigger foods gluten or dairy was a culprit. This diet was ridiculously hard. It took so much time reading food labels and meal prepping. Going out to eat was basically off the table. It was also so expensive, my one week grocery bill sky rocketed 4x what I was paying previously. I would watch people do whole 30 and wanted to punch them in the face. Why would you do this to yourself if you didn't have too? I always loved their celebratory day 31 picture of all the foods the missed and were binging on. I wanted to comment congratulations on completing the diet I have to be on for the rest of my life. But I didn't because secretly I wished I was them, doing something that wasn't permanent.
MAY 9, 2016
The day was here. The day to see if all the hard worked paid off. I wanted to be better I mean it is just food, right? I can overcome this! But secretly and hard to admit, I didn't want it to be better. I didn't want this to be forever! But in retrospect, I was being foolish. If I knew what was coming I wish May 9, 2016 was the end. The good news was that my scope was Great and all my biopsies came back normal! YAHOOO! I was thrilled but knew that I changed 3 things and didn't know if it was a combination of the three things or two things or just 1 thing. I decided I was going to dedicate the next year to finding out everything I possibly could about my new diagnosis, what I was allergic too and to be cured.
August 2, 2016
After months of waiting I finally got in to see an EOE specialist at the University of Utah. Dr. Kathryn Peterson is studying and conducting clinical trials in EOE and I was so grateful for the opportunity to sit with her and learn about EOE. We spent an hour talking and making a game plan. I told her we had until June 30, 2017 (when my deductible reset) to scope, remove and add foods and most importantly make it easier for me to manage this diagnosis. Dr. Peterson probably didn't know what she was in for taking me (and the medical team I work for) on as a patient. But I am truly grateful for her knowledge and expertise and her dedication to clinical trials.
My plan for the next year would be outlined as followed. Remove one food at a time and stay off meds until my scope was clear. I would meet with allergy specialists and try to find any outliers.
**Who would have thought that would have taken 5 EGD's, 2 weeks of allergy patch testing, 50 hours of vacation time , multiple medication/diet changes and 1000's of dollars in medical expenses.**
August 2016- May 19, 2017
11/4/16: Bad Scope Off Dairy
1/30/17: Bad Scope Off Gluten
3/17/17: Bad Scope Off Dairy and Gluten
5/19/17: Bad Scope $150/month medication, regular diet
** I got so confused I had to make an excel sheet of what I did, for how long and what my biopsy results said. **
November 15, 2016
I attended my appointment at Primary Children's Medical Center. Yep, you read that right. Me, as a 31 year old woman was being worked up at a childrens hospital. As embarrassing as it was I wanted the best, and the best were at Primary Children's. They placed baby food patches on my back for 5 days. No showering or sweating allowed! I can honestly say it was one of the worst weeks of my life, until a few months later when I got chemical patch tested, more on that later. Results showed allergies to potato, sweet potato, turkey, wheat, soy, corn and chicken. I cried after I got my results. I spoke with Dr. Peterson and she encouraged me to stick with our plan and often times skin reactions are not necessarily food allergies internally.
January 10, 2017
Chemical and environment patch testing. I would do food patch testing everyday to avoid having chemicals on my back for a week. You know what happens when you are allergic to something, you itch. I was like a 3 year old, rubbing my back on everything in sight, desperately begging someone to take these horrendous patches of my back ASAP! Even writing about it makes me ITCH! I pray that none of you have to do this and pay for it! The good news is I found some nail polish that I could use that wouldn't break me out in hives, which ultimately made it worth it.
May 20, 2017- June 18, 2017
I was starting to become increasingly anxious and upset as we were getting closer to the realization that maybe I did need to remove gluten and dairy and be on expensive high doses of medication that my insurance didn't cover. I had one last scope to clear before being forced to the 10 week lifestyle I lived last spring.
After my scope on May 19, 2017 I started having some pretty serious abdominal pain. I was in constant contact with Dr. Peterson and forced my coworkers to listen to my symptoms. We didn't know if my stomach and intestines were aggravated from my previous scopes or my gallbladder was acting up. On 2 separate occasions I was very close to going to the emergency room but resisted because I was set up for an EGD and the ER really wouldn't do much for me. Dr. Peterson decided I should get some labs checked, have an abdominal ultrasound and have my EGD all on Monday, June 19th. We would analyze all my results and figure out what my pain was from.
June 19th, 2017
A day I wish could be more celebrated. More to that later. I had my ultrasound which came back completely normal. One test down, two to go. At 4:30PM I went in for my 7th EGD and finally, after what seemed like years I had a clear EGD!!!!!! . I was so happy. Out of everything I had to eliminate I was hoping and praying that dairy would be safe and it was! I love ice cream, ranch, cheesecake, chocolate covered cinnamon bears, protein bars and yogurt. Two of three tests down, one more to go and I would be given a clear bill of health. No more time off work, no more medical bills, no more changes. Just me, Whitney living healthily and happy.
As I was getting ready to leave Dr. Peterson came in and asked if I had seen my lab results. (one of the perks of working in a hospital is I have access to my own medical record). I said I had and I knew that I had elevated tryptase and IgGE levels which with I associated my EOE. But if my scope was clear why would these labs be elevated?
Dr. Peterson told me I needed to be referred to a hematologist (blood doctor) up at Huntsman because an elevated tryptase level is related to mast cell disease or Mastocytosis. Luckily, she said, you work with Adam Cohen who knows all about this and can pull some strings to get you an appointment. At the time, under much sedation, I didn't quite understand the seriousness of mast cell disease.
**Here is where I normally would put a picture of MAST CELL DISEASE/Mastocytosis. But right now I can't. I can't face that yet. All you need to know is mast cell disease is a rare disorder caused by too many MAST cells in the blood, bone marrow skin and internal organs. MAST cells produce histamine resulting in anaphylaxis like symptoms. **
I went to work the next day and spoke to Dr. Cohen about what all this means and he started talking about bone marrow biopsies, treatment, chemotherapy pills and meeting with the hematologist. I learned that MAST cells act on smooth muscle which was causing my abdominal pain. I felt sick. After much google-ing, I knew I wasn't going to make it through the day without breaking down. I felt overwhelmed. I ran to the closest bathroom and cried. I cried in a way I haven't cried for years. I was terrified. On a day that was supposed to be my new normal, my new bill of clean health came a day of extreme fear and sadness. I thought about all the bone marrow biopsies I have assisted with and how inhumane they are. I understand the need for them but at the same time screwing a needle through the skin into the center of the bone to pull out the marrow is traumatic just to watch. I couldn't imagine having to have one done to me. I started to panic.
I thought about everything that could go wrong, what would happen if this was terminal, should I quit my job, sell my house, refuse treatment and go travel. I thought about my singleness and how I hadn't found the love of my life, and how sad that made me. I thought about my 5 years of sexual abuse and how hard I have worked to overcome that just to be faced with this. Suddenly, food allergies didn't seem so bad. For the last 2 days I have prayed to go back to the days of gluten and dairy allergies. I don't want to do this anymore. I don't want to be sick.
My appointment with the hematologist is on Friday, June 30. I am awaiting to hear what procedures I need to stage my disease. I definitely need a bone marrow biopsy which scares me to death.
I started writing this post to help myself process the last year. I am ridiculously grateful for employer sponsored health insurance and I hope that nothing prevents me from working and maintaining my insurance. I stand with the affordable care act and that all preexisting conditions should be covered by insurance. If I ever lose my health insurance I will not be able to get coverage again for my EOE or mast cell disease if the preexisting clause does not stay in effect.
To all my friends, coworkers and family who have purchased LipSense from me. Thank you. To be honest, Thank you isn't enough. You have made the last year livable. The extra money I earned was used to pay for medical bills. Thank you for trusting me and helping me through a difficult financial time. Thank you for giving back to the individual and not giving more to Wal-Mart, MAC or Target. You will never know how much it means to me.
To all my patients, I never understood the fear you felt of tests without answers, diagnoses that were words not explanations and the impatience you felt in receiving your results. I apologize for making you wait and not getting back to you quickly enough. I will be forever changed by this experience and ultimately hope to be a better nurse. Healthcare formalities are complicated but sometimes we just need a little comfort or explanation.
For now, I am going to stay off the Internet and trust in those who are knowledgeable about my new diagnosis. I am going to lean on those who are close, for comfort. I will continue to live life the way I always have eat right, sleep well, exercise often, cuddle with my puppy and fall asleep with my nose in a good book. These next 2 weeks will bring a lot and I hope and pray for some good news on a bad news day.
What happens when a nurse turns into a patient? We are the same as you. We are scared, tearful, full of questions and often don't take the advice we tell our patients. We don't stay off google. We deny, we cry and we
catastrophize. We loose all since of reality and the knowledge we are so good at giving to patients somehow escapes our brain. I hope this experience makes me understand my patients better and allows me to empathize with them a little better.
To be continued....
Love a patient and a nurse,
Whitney
