Kayla's Story: Avascular Necrosis (AVN)

My name is Kayla and I am a two-time intestinal transplant recipient, receiving the transplants because of Chronic Intestinal Pseudo-Obstruction (CIPO). My first transplant was an isolated intestine in November 2015. After numerous complications, I lost the graft to chronic rejection. I received my second transplant, a modified multivisceral consisting of the stomach, pancreas, duodenum, and small intestine, in February 2019. While I have had numerous complications following my second transplant, as well, one that stands out to me and has greatly affected my quality of life is avascular necrosis or AVN or osteonecrosis.

AVN results from lack of blood flow to a joint, resulting in bone death. Most often people get it from chronic steroid use. I started noticing deep bone pain in my hips that prompted me to alert my transplant team. The first step to a diagnosis was referral to an orthopedic specializing in hip conditions and ordering of an x-ray. 

Since it was early on in the course of the disease, the x-ray came back clear, but that did not mean that nothing was wrong. Since I was experiencing significant pain, an MRI was ordered and revealed that both my hips, as well as both knees and ankles, had avascular necrosis. I was still considered to be in the early stages, so it was recommended that I attempt a core decompression surgery in an effort to increase blood flow to my joints and help slow the progression of the disease. I ended up receiving this surgery in all six joints, but unfortunately, it did not work for me. 

In August 2018, my right hip collapsed and had to be replaced. My left ankle also collapsed, however, ankle fusion for a transplant recipient is too risky of a procedure due to the risk of infection; for now, I just have to manage my pain and use a walker to help reduce the weight I place on my ankles.

The most unusual place my AVN has spread is my left thumb, and then subsequently has spread into all of the joints of my wrists and hands. For my left thumb we first attempted casting it for many months and then tried a bone grafting procedure, both without any success.

Now, for my deep AVN bone pain, I just use topical measures to manage the pain and just try to stay as active as possible. Since transplant patients are not allowed to take NSAIDs due to the risk of bleeding, I use a topical anti-inflammatory called Diclofenac. Every night I also ice my collapsed ankles to help reduce swelling and alleviate pain from using them all day.

AVN has been quite limiting to my everyday life. I once was much more active, as I was a runner and enjoyed hiking with my family. Although I no longer can do these things specifically, I am learning to adapt to my new lifestyle. I still can take walks outside using my walker and for longer excursions with my family I have found special crutches that are also helpful. AVN may be painful and limiting, but it doesn’t mean that you have to sit around all day and do nothing. Embrace your new normal and find new ways to do the things you love!