Tuesday, July 29, 2014

My Recovery Story {Part 2: Avascular Necrosis}

Please forgive me for taking weeks upon weeks to write the other half of my recovery story... Although this is the second part of my series, it does not entirely cover how I was cured from my battle with Avascular Necrosis; instead I went into detail of how the disease affected me. I realized as I was writing this second part that living with Avascular Necrosis is a much different story than me recovering from a bilateral hip replacement. I mean, the Avascular Necrosis was the reason I got the replacements in the first place but I wanted to really dig deep with the memories I had prior to my surgery and writing it all in one essay would be somewhat ridiculous. With that said this part covers what may had been the most painful time in my life; but much like my ulcerative colitis, I was only strengthened by it and God blessed me with such an incredible person to love. In the next and final part, I will share my operation and full recovery and a very happy ending.. I apologize again for the delay!

During my Ulcerative Colitis recovery process, I began exercising again and became much more fascinated by food and eating for health. And this is a bit off topic, but I joined a dating site in July 2011 during the time of my recovery. To be honest, I did it more out of curiosity than any hope that I would successfully meet my future husband. Let me tell you, I came across the most unusual crowd of people and often saw people I knew from church; that was weirder for me than the people I didn’t know! A couple months passed by and there was no success so I decided to disable (not delete) my account and decided to focus my time on my upcoming semester of school. As time passed, I began feeling a lot better and got a job at the clothing store Zara and I restarted my second semester of college that fall. I wasn’t very enthusiastic about returning to school but I was excited to join a ballet class. I thought to myself, “Get credits for dancing? Sign me up!” and I also took ballet when I was younger so that made it more interesting for me. The reason I mention this because exercising regularly and the addition of ballet classes twice a week, helped me to notice the initial stiffness that starting occurring in both my hips. I noticed a difference in my range of motion in late November/early December and at the time I thought it was just muscle soreness from a previous exercise and so I shrugged it off.

(my husband is going to kill me...) This was his default picture on Ok! Cupid; he was in gymnastics in college.

Somehow I managed to wind up on that dating site again, this time I sent a message to a guy whose profile stood out to me. He mentioned he was interested in nutrition and fitness and was very blunt in stating that “if you don’t care about yourself don’t bother messaging me”. I had to laugh because as superficial as it sounds I wanted to share that lifestyle with someone. I felt compelled to send a little “hiya” and I really didn’t think he would message me back because I was younger than him.

To make a long story short, he messaged me back and we even exchanged numbers and began texting nonstop. He was a recent college graduate, with an interesting job and was really cute! I liked texting him because he was funny, smart and said old fashioned words like “gal” and “flick.” The week before we met in person the stiffness in my hips and knees became more frequent, especially after a long day of classes and then work directly after school. I even told my ballet teacher what I was experiencing, and she told me that it sounded like a bone disease and that I should seek medical attention. Due to the holiday season I was working longer hours and one Saturday night I had a very difficult time walking to my car. My knees ached and my hips were uncomfortably stiff which caused me to walk with a limp. That Sunday morning I asked my parents if they could take me to the ER. I didn’t want to take any chances since I had a history of Ulcerative Colitis. Surprisingly I felt calm and collected as I waited in the ER, and when the nurse came in and took my vitals and then the resident on call. She inspected my legs and asked questions. Because of my regular exercising, she said I might have developed a sports related injury and to just take it easy, take some Tylenol and to use a heating pad on my hips and knees. The next week I was still experienced pain in my hips but “took it easy” and used heating pads and took long hot baths after each shift.

The day I met Michael...
I met the young man I was texting that Sunday afternoon and we spent the day walking around New Brunswick, getting coffee, watching the tail end of the Nutcracker at the State Theater on a screen and then got plantain chips and hummus at a restaurant. I barely talked and mostly smiled. He talked a lot. We walked to our cars and he told me he wanted to take me on a real date. I agreed and we parted ways until January.  When we began seeing each other more frequently, we spent lots of time together. At first my parents were skeptical because 1. I met him online and they didn’t know where the heck he came from. 2. I had never dated anyone. 3. They weren’t sure he was fully committed to Christ. But once he came over for dinner for the first time, they were actually very impressed by him. That Monday he came over again-- then Tuesday, Wednesday, Thursday and Friday! That Sunday he went to church with us and then on Thursday he asked me to be his girlfriend. Although we didn't make it official until that Friday when he asked my parents for permission and the rest is history…

By now the pain and stiffness in my knees and hips had gotten worse. I began walking around with a limp. My mom found an orthopedic doctor in our area and I got an x-ray but it showed nothing. I began explaining my pain and what I was feeling to my doctor and he wrote me a script for an MRI for both hips. A few days before I got the MRI, Michael and I visited New York City on a cold wintery day. We walked across the High Line Bridge, ate dinner at Souen and saw Traces. The night was perfect but that didn’t stop my hips from screaming at me and I tried so desperately to pretend that I was okay for my then boyfriend. A few days later I got the MRI and as we waited for the results, I continued going to work, school and spent lots of time with my boyfriend. I started to experience dizzy spells and felt faint whenever I spent too much time on my feet.
my new best friends 
After viewing my MRI results, my doctor diagnosed me with Avascular Necrosis* and I had no idea what that was. He explained that it was a bone disease caused by Steroids, Alcoholism and Sickle Cell Anemia. It was very possible that I developed it from being severely underweight and going on steroids to treat my Ulcerative Colitis while I was in the hospital but the jury is still out. Unfortunately for me my doctor at the time had no experience with Avascular Necrosis and mistreated my diagnosis; he was older and most of his patients were senior citizens. I will give him credit for giving me crutches and prescribed me to see a physical therapist three times a week for a month. His goal was to “fix my walk” because he actually told me that I walked like an old woman. After much going back and forth, I made the decision to drop out of college and pursue a culinary education. My parents also insisted I quit my job because of my condition and I began my therapy. The PT office consisted of older clients who were recovering from joint replacement surgeries and I felt very out of place. Looking back the exercises my therapist had me do were for someone who already had surgery and while it helped straighten my walk, it was not the medical attention I needed at the time.

Whole Foods takeout, kombuchas, kale chips were just a few of the essentials for our Car Picnics.
During this difficult time Michael and I spent a lot of time at my house and going on “car picnics.” Literally a picnic in the back of his car! Anything that didn’t require lots of walking or standing became a safe date for us. I believe that God provided me with trust to open up to this man. I felt safe with Michael and even when I was super dizzy and could barely move, he always treated me with kindness and never let me feel like a burden.  As much as I hated feeling so limited, I often question how our relationship with each other and Christ would’ve grown without this period of suffering. We loved each other and after dating for three months we knew we were going to get married. In the beginning of our relationship Michael had told me he was a part of a rotational program and would eventually have to go back to Pittsburgh for five months. In April Michael moved back to Pittsburgh and we endured a long distance relationship; I also attended an open house held at Natural Gourmet Institute in New York City with my parents, crutches and all, eager to enroll in their 5 ½ month program that upcoming July 2012.

our relationship hasn't changed...
I agreed with both my parents and Michael that I would only attend school that summer if I showed improvement after my second round of physical therapy. By my doctors standards I was looking much better and had been walking straighter. I sent my application in to the Natural Gourmet Institute that summer and was accepted and set to start that July. I moved in with Grandmother Margie who lives in the Bronx and used the bus that took me directly into 23rd street, just two blocks from where I needed to be. The first couple of weeks of school were about getting familiar with our appliances and the basic cooking classes. Because the school was going through renovations we were given three and a half weeks vacation and I got to go back home. I remember being so excited because it was the first time I’d been away from my parents for so long, and I was feeling homesick! During this time Michael was still in Pittsburgh and had been pushing to be placed in New Jersey for his next rotation. I prayed that he would be closer and to cope we spent the evening’s skyping.

Once my vacation was up, I was back in the Bronx and back in school. The classes were wonderful! I never knew I would find myself happy to go to school and I finally felt like I was in the right place. While I was walking to school from the bus one morning, Michael called me and told me he wasn’t going to be placed in New Jersey. For a split second I felt my heart sink! But then he continued by saying, he was going to be placed in New York City! It ended up working out better for us because I was going to school in the city and he could easily commute from my grandmother’s house via bus and train. And he did. Things were going smoothly and after school I would tell Michael all about what I learned in school.

Even though I was happy, the pain in my hips had increased once again and this time it was sharp. One day in our stock class, I started to feel very faint and needed to sit down. My instructor gave me lemon water, which temporarily did the trick. From that day forward I couldn’t stand for long periods and the commute was taking a toll on my body. I felt paralyzed. Michael urged me to use my crutches again and to tell the school about my condition. I told the school’s supervisor and gave her a doctor’s note. She told me to take it easy and sit down and take breaks whenever necessary.  Because the pain seemed to worsen Michael and I began researching more and more about the disease. We were frustrated and determined. We finally came across a doctor in Boston who specializes in Avascular Necrosis and does a stem cell procedure that extracts the patient’s stem cells and injects them into the diseased area promoting bone growth. Michael and I emailed his office and they told us I needed to send in my x-rays and MRI results.

During Thanksgiving time, I had an appointment with my orthopedic doctor and I told Michael and my parents that it would be my last visit with him. Prior to the visit I had asked for my MRI’s and x-rays because I wanted a second opinion. Within a few weeks of sending my results, the Boston doctor’s secretary called me and scheduled when he would call me for a phone consultation. After school I stopped at a nearby Starbucks and waited for Michael so he could be with me for the consultation. I put my dad on the other line and we both listened in on what the doctor had to say. It was very discouraging news. The doctor informed me that I had stage V Avascular Necrosis in my hips and that they were on the verge of collapsing. He said that my condition was far too severe for his stem cell procedure and that I would eventually need an operation.

Despite all the pain, I managed to push through culinary school and it is still a huge accomplishment for me!
A couple weeks after hearing this somewhat frightening news, I graduated from culinary school and went back home. Michael came across a doctor in Newark who specialized in a procedure where he took a piece of healthy bone from the patient’s shin and then shoves it into place with the diseased femur. We were able to get an appointment scheduled pretty quickly and again we received the same news from this doctor as the one from Boston. He told us that my condition was worsening and a total hip replacement in my left and then eventually my right hip was my only option. He strongly urged me to seek an Orthopedic surgeon and said the disease would cause severe arthritis which would potentially cripple me. I left his office feeling terrified but relieved all at the same time. I felt for the first time that I had answers that would grant me with lasting and beneficial results.

I will close this part of my story by saying this experience has taught me that sometimes I’ll need a second or third opinion; and when it comes to specific diseases such as Avascular Necrosis, always seek a doctor who specializes in that disease and be an advocate for my own health. In my opinion a good doctor will be honest with me and point me in the proper direction that will improve my quality of life rather than shooing me away and giving me temporary solutions. In my next post, I’ll finally end this series with the conclusion of my recovery story; thank you for all your patience!

*Avascular necrosis (AVN), also called osteonecrosis, aseptic necrosis, or ischemic bone necrosis, is a condition that occurs when there is loss of blood to the bone. Because bone is living tissue that requires blood, an interruption to the blood supply causes bone to die. If not stopped, this process eventually causes the bone to collapse. (source: WebMD) 


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