Day 75/100. 25 days until I am out of the most critical time post transplant. Day 100 is my daughter’s birthday.
I remember when I was a medical/surgical nurse, hearing the cardiothoracic surgeons tell patients, “you’ll be back to normal in 6 weeks,” and me thinking in my head, “yeah right.” At the time, open heart surgery required a sternal split, stopping the heart, putting the patient on a “bypass” machine before the venous graft could be sutured onto the heart. I would hear the surgeon explain, “there is a one percent chance that you will get an infection, one percent chance that your heart will go into an abnormal rhythm, and a very small percentage of patients die.”
There is only a 0.1% chance of contracting HIV from a needle stick injury.
A one in a million chance of having HLH.
Statistics mean nothing, unless you are the statistic. And when you are the statistic, reason and objectivity go out the window. And anxiety squeezes into their spot.
This past week, I had an acute onset of pain in my operative hip. It woke me up at three in the morning and even after taking pain medication, it was not subsiding. My physical therapist came and agreed that my hip was swollen and firm and that I could not move it as I had been, so we started making phone calls. I had an appointment with Dr. Superwoman that afternoon and I really wanted to avoid the ER. We got a hold of Dr. Superwoman who arranged an X-ray. We met with her that afternoon. As I got ready for the appointment, I checked my temperature- 99.7! I burst into tears. My thoughts ran away with me- I had an infection in the hip again and was going to need more surgery. Heck they may even need to take the leg off! The HLH was back, and the battle had to be fought again. I would be away from my family for who knows how long? I would never get back to KY. I was deflated and depressed. How could I summon up the energy to survive? The pain had improved by appointment time, but my hip felt terribly swollen and sore. What had I done to myself? Or was it something I had no control over? I had been experiencing more back pain, so I had been doing some yoga exercises in order to stretch and strengthen my back. Had that caused the problem? Nothing was apparent on X-ray, but to be on the safe side my blood thinner was stopped and a CT was ordered to look for soft tissue damage or bleeding. We were to come back on Friday, but call for fever or worsening of symptoms. At least I got to go home!! The pain continued to improve, the low grade temp resolved, but I was obsessed with checking my temperature again and again. I know that I cannot stop an infection from coming- I know this, but it seemed like it was the only thing I could do to try to control the outcome.
I was an anxious person before. And, from my experiences, I think that EVERYONE has issues with depression and anxiety and some point. Many families who experience the trauma of HLH, develop PTSD (post traumatic stress disease). What makes us want to control things so much? Can you ever, completely learn to give up control? Can you just trust, that whatever comes from this will be good?
I returned home that day, ready for a long weekend. And you know what? The next day my pain continued to improve. I did not return to having a fever. And I am still out of the hospital with 25 days to go. Did I do anything to control this? No. Am I learning to give my anxieties over to God. I hope so. I need to. It doesn’t mean that I am a bad person if I struggle with this. Lord please help me to be patient.