It’s been a while since I’ve posted, and I know many of you have wondered where I went. I post a photo to my Instagram account everyday with more frequent updates. You can see my Instagram feed on the right sidebar under my photo. If you click on the picture, it will redirect you there. I am going to try to figure out another way to post the daily updates to my blog so you are notified. But until then here is another health update.
A lot has happened since my last health update. I wrote it all out and realized it was way too long and boring so I’m going to give the short version. I spent 6 weeks in the hospital (with a 2 day break) from October – December. I had sinus surgery, 2 surgeries on my hip, had pneumonia and was in a medically induced coma for 3 days, got rid of the pneumonia, recovered and left the hospital in time to visit the White House. I’ve been feeling really good the last couple of weeks and have been getting out to see friends and have some fun.
My hip has been the biggest issue. Originally, from MRI scans, my doctors believed I had Avascular Necrosis (AVN or bone death due to lack of blood supply). But we’ve discovered that the bone died because the fungal infection is in the head of my hip bone and has been in the joint fluid surrounding the bone. The infection has likely been there since my transplant or even before, no one knows because I had absolutely no symptoms until March 2017. Then after the washout in March 2017 I had no symptoms until September 2017. During my last hospitalization I had 2 washouts and a large hematoma (accumulation of blood) in my pelvis muscle (SO painful, let me tell you) removed.
Each time they do a surgical washout and put me on an IV antifungal, after stopping the IV antifungal the infection comes back with more force. They need to get this fungus out of my body to prevent it from spreading. And the thing about this fungus is that it is extremely rare. We are talking only 13 reported cases of it in the lungs and a little over 100 reported cases ever. When a doctor hasn’t come across something, they research in medical journals and get information from what other doctors have done. In my situation, there isn’t any of that…so they’ve been working with little to no information. They’re doing an amazing job and they’ve kept the infection confined to my hip.
Yesterday my entire transplant team and orthopedic surgeon met to discuss a plan of action. I was anxiously waiting a call from my infectious disease doctor after the meeting last night. The plan is for me to finish my course of IV antifungal then get another hip aspiration in the beginning of March. (The aspiration only tests the joint fluid. If the fluid is infected that means the fungus has spread from the bone to the joint.) If that comes back clear they are going to put a spacer in. A spacer is a temporary hip replacement that has the IV antifungal stored in it. Slowly, it will release the antifungal directly into my hip. The reasoning behind this is to 1. Get the infected bone out of my body (they cut off the femoral head just like they would in a hip replacement) 2. Make sure the fungus is completely eradicated. I will have that for 4-6 weeks. By the time the spacer is ready to come out it will be April. Then comes the actual hip replacement. I’m seeing my orthopedic surgeon on Monday for more information about the spacer and hip replacement so that’s all the information I have for now.
I’m not gonna lie, on the phone with my infection disease doctor, Dr. K, and after we hung up, I cried. Why? Because I am missing my best friends Bachelorette party, plans to visit my brother in Boston and aunt in Colorado. My life is again being put on hold and plans cancelled. It was hard to hear and very upsetting. But I know in my heart that this is the right plan. I know this fungus needs to get out of my body and I’m not going to risk it spreading (and risk my life if it does). It really sucks but I let out all of my tears last night and I’m ready for what’s to come. I’m going to stay positive and find things to keep me busy. Before I know it, I will be walking with my new hip this spring. I’ll be OK…I have been until now after all.