Unimaginable support is allowing me to take flight and continue this fight!

Two months ago I was diagnosed with Dense Deposit Disease, something that has changed my life forever. December and January felt like an entire year, and time still seems to slowly pass. Every day seems to be a new challenge to stay positive and look forward. It is hard to believe that about two months ago I was diagnosed with DDD; I feel like I have cried enough for a whole year! The weeks following my diagnosis were very difficult, and somewhere between crying, researching more about DDD and trying to accept this life change, I had to pull together strength to study for my finals and go home for break.

Finals week was pretty challenging for me. Thank goodness we only had two finals to tackle, but school was the last thing I wanted to think about. I debated emailing my professor to ask if I could push my final back, but something inside me was saying, “Just finish your finals and be done with it.” I knew that after my last final I would be home free with one less worry on my mind. Although learning about the care for patients with burns and cold injuries was interesting, I didn’t have the energy to do it. Thanks to the encouragement of a few of my nursing classmates and friends, I somehow managed to finish the semester with two A’s and a B+.

My kidney doctor here in Boise put me in contact with a doctor that he wants me to go see soon. His name is Dr. Smith and he is a doctor who is researching DDD at the University of Iowa. My contact with him and his family has been an amazing experience. He has a son who is also in nursing school, and a daughter who also has DDD. She is 25, a twin, and was diagnosed at age 6. Her twin does not have DDD. We are at very different stages of this disease; She has been on dialysis for 17 years after a failed kidney transplant when she was young. She and I have been emailing back and forth for a while now and it makes me realize how small of a world we live in, and how some things are just unexplainable! Her name is Jenna, and she goes to the University of Oregon, the school my little sister goes to. I find each of Jenna’s emails to be very inspirational. She takes everything lightly, giving me a little advice about how to cope with this disease.

At first I found it very difficult to talk to people about my condition. When people would ask me how I was doing, I wanted to say I was okay, but sometimes tears would just start pouring out. At times I would purposefully ignore people, even my closest friends, just to avoid talking about what had been going on. I knew that ignoring my friends and being a hermit were not good for me! Eventually I was able to talk freely about it but I felt that every time I was asked about it, I was constantly reminded of it all. I apologize to everyone whom I ignored and thank you all for understanding.

Tawni (Rio’s Mom), her sister Trina, their mother Sheila, and their friend Lesley put together the most wonderful fundraiser so my Dad and I can see Dr. Smith in Iowa. Clearwater Spa, owned by Tawni and Sheila, is a day spa located on Broadway in Boise. On January 28th and 29th, people scheduled all sorts of treatments! Facials, massages, pedicures, and more! It was a weekend full of old friends, new friends, family, hope, love and laughter. My sisters even drove from Portland to surprise me at the fundraiser! Even though I only got to see them for a few hours, I am so happy they made the trip for me. I had no idea they were coming! One hundred percent of proceeds are going towards my medical expenses and travel to Iowa. Trina used her frequent flyer miles to help buy our tickets to Iowa. There, I will be seen by two nephrologists and hopefully get most of my questions answered. I am so anxious to start feeling better and to know how my body is reacting to my disease. They’re already working on my genetic testing and all other sorts of fancy lab work! Just thinking about what Tawni and her family have done for me makes my eyes tear up, and I realize how blessed I am to have this family in my life. It all started when I met Tawni in my chemistry class a few of years ago. Somehow we managed to be assigned to the same clinical groups from that time on and we became close friends!

The amount of gifts I’ve been blessed with during this challenging time is unbelievable. I cannot express my gratitude for all of the nice words and thoughts that have been sent my way within the past two months. Strangers have told me that I’m on their church prayer list and have donated money. People I haven’t spoken to in years wrote me messages and friends I met on my trips abroad reached out to me. Every message, email, letter, phone call, and text I received brightened my day more than anyone can imagine. My nursing class has been overly A-M-A-Z-I-N-G and supportive as always. This also includes my current and past professors who show concern for me. My family, especially my sisters, are my best friends and have been wonderful. Rio has been there for my good days and bad ones. Goodness.. there are a million and a half people I want to say thank you to… and I am so far behind!

My friends are so supportive... They know how much I love ostriches! (Thank you Erica, Beth and Jason!)

I have so many people to thank for getting me through this Christmas break, the hardest part for me, but my friend Katy Hassler said something that really stood out to me. I was her RA last year in the dorms and we were always encouraging each other to do well in school. She is a pre-nursing student, so I knew exactly what she has been going through! Katy wrote me a message saying, “You will get through this and God chose you as such a great person of strength.” – I had never really thought about it like this before. A question I continuously asked myself was “Why me?... I am supposed to be healthy”. But after reading Katy’s message I was reminded that God has plans for us that challenge us and that he would never put me through something I could not get through without his help.

 

Tomorrow, February 16^th, 2012, my Dad and I leave for Iowa to see Dr. Smith and Dr. Thomas. I have countless concerns and a list full of questions! Thank you all for your prayers, thoughts, donations, hugs, smiles, and friendships, new and old. Without the support of everyone, especially Tawni and her family, this trip wouldn’t be possible. I love you all.

I’m ending this very scatterbrained blog with a quote that has helped me through this time. It’s from Jason Mraz’s song, ‘The Remedy’, and helps me smile:

 “You can turn off the sun… But I'm still gonna shine!”

My diagnosis of Dense Deposit Disease

On Tuesday, December 6^th, I was diagnosed with Dense Deposit Disease, a disease affecting 1 in 2-3 million people. It’s a rare autoimmune disease that is usually diagnosed in kids aged 5-15. It is a disorder that stops the kidneys from correctly filtering waste from the blood. Most people with DDD progress to kidney failure over time, but there are promising treatments currently being researched.

Journaling has been a big part of my life. I have a box of journals at home filled with thoughts, ideas, and awesome times in my life. This blog is a way for me to let out any stress and thoughts that I have on my mind, and to also realize all of the blessings that I have in my life. So, Here we go. Here is my story:

I had been having lower back pain for about 2 years, but had done nothing about it. My family’s health insurance wasn’t good enough and I always ended up paying out of pocket in the end. It wasn’t until August 2010 that I received my HRSA Nursing Scholarship (full ride + $1300.00 a month for living expenses.. pretty awesome when you’re paying out of state tuition!), that I was covered under a better health insurance through my school. I decided to take full advantage of it and finally go in for my back pain.

That month, I scheduled an appointment with my University Health Clinic at Boise State. At first the doctor suspected a kidney stone after they found microscopic protein and blood in my urine. I was sent down to the Intermountain Medical Imaging here in Boise to get a CT scan. The results came back with no stone, and I was still in pain. The doctor had no idea what it was. A few months later the pain went away and I forgot about it.

This year on Friday, September 23^rd, I was at the MSTI Pediatric Oncology Conference for my Family Nursing clinical when I started having back pain and pain upon urination. I had the urge to pee every 15 minutes and when I finally made it to the bathroom, nothing but 2 drops came out! I was sure that I had a UTI and was able to leave the conference early after calling the University Clinic and getting an appointment. I was nauseous, pale, and just downright felt terrible! After I got to see a doctor, he told me that I had Pyelonephritis, which is a kidney infection. It was awesome to hear something that I had just learned about that week in my Medical Surgical class! As I had suspected, I was given antibiotics and left the clinic knowing I was going to feel better soon and enjoy my weekend. I was wrong.

That weekend was terrible. My kidneys ached and it hurt so bad to pee. I threw up numerous times and blamed it on my antibiotic. But I knew that I had to continue to take it. In nursing school we learn to teach patients to keep taking the full course of their antibiotics until it’s done. The next Monday I returned to the clinic to tell them how the medicine was making me feel. I was expecting to get an antiemetic like Phenergan or Zofran, but my new doctor, Aurelia Nelson, had something else in mind after reading my urinalysis again. My urine had a large amount of protein and blood in it and my white blood cell count (an indicator of infection) was normal. Apparently I didn’t have an infection, but she wasn’t quite sure what was going on. She knew something wasn’t right.

After a few more times seeing Dr. Nelson, she finally decided to call a kidney specialist and ask what he thought about my situation. He requested that I do a 24-hour urinalysis to evaluate my kidney function and other labs. What a pain in the a** it was to do that thing! I have to collect my pee for 24 hours and keep it refrigerated. I felt terrible for my roommates Ammon and Erica… I warned them that it wasn’t apple juice.

I returned my jug of pee the next Monday and patiently waited to hear from Dr. Nelson. She called me a few times on her days off and gave me her cell phone number in case I had any concerns. She truly went above and beyond for me and had me call her whenever I had questions. Later that week I got a call from Dr. Nelson saying that I was going to be getting a call from a nephrologist here in Boise, Dr. Michael Adcox, to schedule an appointment. Dr. Nelson said that he wanted to see me right away and was able to get me an appointment that next week. But this worried me a bit.. Why was I being referred to a specialist? Was it something serious?

My amazing Mom, Lucy, came to the appointment with me the next week on Thursday, October 13^th. The office was located at St.Lukes downtown where I had my Family Nursing clinical. The first thing I noticed when I walked into the office was a page-a-day calendar by National Geographic. It was a picture of an ostrich, my favorite animal ever. My Mom and I agreed that it was God’s way of saying that everything would be okay. When we were called back, Dr. Adcox told me that I had 20 times the amount of protein in my urine than normal and that it was a big concern for him. My labs for my kidney function showed that I was at 100% (which was exciting to hear!). Dr. Adcox still wanted to figure out what my kidneys were doing. He suspected Lupus and a few other diseases, but he couldn’t put his finger on it. We decided that a kidney biopsy would be the best option for me at this time.

I scheduled my biopsy for Tuesday, November 15^th. We chose this date because it was after my 12 hour nursing clinical days were over for the semester.

November 15^th couldn’t have come any slower. I found myself throwing up 2 to 3 times a week with terrible migraines and dizzy spells. Rashes were breaking out in more and more places regardless of how close I’d follow my food allergy diet (I’m allergic to wheat, peanuts, potatoes, tomatoes, and oranges). I missed class and even a few clinical days after being up till 4 AM with a headache and throwing up.  Towards the end I was so sick of being sick. I’d always say to myself and to my friends, “I’m so ready to be done with this. I want to know what is going on with my body”.

November 15^th slowly but surely came around. Rio drove me down to St.Lukes early in the morning and stood by side through the whole process. They drew blood to get a baseline of my lab values before the procedure. I was so nervous, so scared. As a matter of fact, I had seen a kidney biopsy done on a patient at St.Lukes in Meridian last semester during my clinical. It was nice to know what was going to happen to me, yet it didn’t seem to calm my nerves. 

I don’t remember the biopsy happening, I only remember “waking up” from my Versed and talking nonsense to the nurses. I can actually remember hearing them laugh at me! It reminded me of when I did my rotation in the OR (operating room), when I followed my patient to the PACU (post anesthesia care unit) and he was talking about hamburgers to my preceptor and I. Obviously, we all have our moments!

After the biopsy I was held for observation for 6 hours as Rio and my Mom sat next to my bed and read and chatted with each other. I couldn’t believe how much pain I was in. Tawni, my good friend and Rio’s mom, came to visit me and brought a card with signatures from tons of my nursing classmates. It brightened my day so much. My classmates have been absolutely amazing and such a huge support for me. Many of them were there when I got sick during clinical and are always checking in on me to see how I’m feeling.

I got my blood drawn one last time before I was scheduled to leave the hospital. The doctor came in a few minutes later and told me that I had lost blood during the procedure and that they wanted to keep me overnight in the hospital for observation. A CT scan of my abdomen showed a hematoma on my kidney from the biopsy. At that time I just broke down and cried. I was told that this procedure was going to be so simple and I thought I was going to be able to walk out of there that same day!

My overnight stay in the hospital was an amazing learning experience. My Mom, Rio and my roommate Erica were all there with me for a while, and Rio ended up staying the night with me there. It was so different being on the other side of this whole nursing thing. I had nurses taking care of me, and I even had a nursing student do some assessments on me! It was really exciting to talk with the nurses and the nursing student. We all had so much in common. And the best part of it was that I knew exactly what the nurses were doing, and why they were doing it. I felt like I had learned so much over my past year and a half in nursing school.

Weeks later I finally hear from the nurse at Dr. Adcox’s office. She told me that my biopsy results were “unusual” and “something he’s never seen before”. I was going to have to wait 4 days until my next appointment after hearing this before I found out that I had DDD.

On December 6^th, my Dad drove up from Ontario and picked me up to go to my appointment. I was nervous all morning, and I felt my heart racing. We finally got called back into his office and Dr. Adcox walked in. I was certain that he was going to say something along the lines of “We don’t know what this is. More testing is needed”. I felt like that was all I ever heard. But this time was different. Dr. Adcox told me that I had Dense Deposit Disease. I didn’t know what to say.. I had never heard of it before. I also didn’t understand the severity of it until he started talked about plasma exchange, kidney transplants and dialysis. I tried my hardest to keep my tears in, and saw my Dad trying to do the same. Dr. Adcox asked if we were able to fly to Boston to see another specialist where research is being done for this disease. My thought was, “Wow… is this THAT serious?”.

It’s been a really rough couple of days, and I’ve done a lot of research. It’s easy to read and remember all of the scary facts that I’ve found, but I often forget that they’re working hard to find a cure, and they’re making great progress. I’ve had nothing but amazing support from my parents and sisters and also from my family here in Boise. My nursing classmates have become like family to me, especially since I can’t be home right now. Tawni, her sister Trina, and their Mom are working on finding alternative treatments for me, and my Mom and I are SO excited to see what they have found! It is amazing to see how everyone has come together for me and has offered so much. I am so blessed to have incredibly genuine and caring people surrounding me.

Thanks to everyone who has listened to me cry, laugh, or vent about this.  And thanks to people who have given me time. I’m ready to tackle finals week and be home with my family.

 I saw this quote while studying abroad in Costa Rica a few years ago. It really stuck in my mind:

“Being happy doesn't mean that everything is perfect. It means that you've decided to look beyond the imperfections.” Anonymous

If you want to know more about Dense Deposit Disease, this is a wonderful link that answers most questions in a straightforward manner: http://www.healthcare.uiowa.edu/kidneeds/about%20MPGN2.htm