Most people cannot wait to get out of the hospital when they have to go there. But after you nearly die everyday for 3 weeks and then again a year later, you start to fear leaving the place that saved you on two separate admissions.
I stayed in the hospital for 3 more days after the second surgery. An additional drain had been placed in my abdomen, so I now had four drains removing the blood and fluid from my abdomen and leg. The pain was nearly unbearable. The pain medication helped a little, but I was on an IV, and I knew when I went home, that would be stopped and I couldn't imagine how bad the pain would be without the strong medications. During those 4 days in the hospital, I slept a total of about 4 hours. I was so much pain I couldn't sleep. I'd dose off for a few minutes then be jolted awake by stabs of pain in my stomach. The majority of the pain was on the right side of my abdomen where the hematoma was. That poor area had been operated on twice in one day, plus 5 times previous to that. The post op pain for this most recent surgery was the worst yet, and I didn't know how it would be possible to manage it.
Besides the pain, I felt weak. Unstable. Just felt like something was seriously wrong and it didn't feel right to not be monitored 24/7. My heart rate was still hanging around 130-140. My doctor and nurses attributed it to the pain, but something just didn't feel right. I had received quite a few units of blood so my labs started to improve, yet I worried about my heart rate and overall stability.
I was excited to be in my own bed and see Mady and eat regular food instead of hospital food, but I was scared. As a nurse, I know the dangers of 3 large incisions, back-to-back surgeries in the same incision, too much blood loss, possible infection, and potentially, another hematoma. I had to trust my doctors and God.
After I got home, there is really only one word that could sum it up: Pain.
It was absolutely horrible. Worse than the skin grafts, because one, with the grafts, I was in the hospital and on IV medications for 2 weeks afterwards, and two, the skin graft removal and reconstruction of my abdomen paired with a hematoma had crushed that part of my body.
It also wasn't fun laying in one position without being able to really move. I had a brace on my leg so I couldn't bend or move it (they didn't want the new incision to be pulled at all). Besides the pain, that was the hardest part. Since my discharge from the hospital after my BIG hospitalization and those first 6 surgeries, I have been devoted to my PT and working out daily to get my leg to heal. That hour or two a day de-stresses me and makes me feel great because I know with every workout, I'm strengthening that leg. TV isn't fun anymore when you're watching it 24/7 for 5 weeks. Despite the pain, I wanted to jump off that couch and do something. Just laying there is depressing. With the 4 drains, I felt self-conscious. It isn't pleasant looking at that, trust me.
A week after I was discharged from the hospital, I started noticing that there was too much fluid in the drains and my abdomen started swelling. I had a sudden drastic increase in the pain, and it was horrible. I cried to my mom over the phone, asking her to please pray that the pain would go away. I was scared that something was wrong, so Jon brought me to the ER to get checked out. They did a CT scan of my abdomen and noted that there was some fluid and a ton of air on the right side where the hematoma was. The fluid and air was pushing against my incision from the inside, causing severe pain. There was nothing they could really do for it...I just had to wait it out. Another trip to Loyola a few weeks later resulted the removal and re-insertion of the drains when the doctor noted that there was too much fluid and fluid build-up under my abdomen. I was running a fever and was put on antibiotics, and the quick diagnosis prevented any additional surgery to remove fluid. Of course recovery couldn't be simple.
One funny story from the night Jon took me to the ER. The resident who reviewed my CT scan in ER saw the air in my abdomen under the incision and came in the room and told us "We're gonna have the surgical team look at the CT because one of the signs of necrotizing fasciitis is air buildup inside the body. I'm concerned you might have nec fasc again." ARE YOU FREAKING KIDDING ME?!!! Jon was like "WHAT??? What the heck are you talking about??! " I knew it wasn't nec fasc and the surgical team confirmed it, so I can laugh about it now. He was a first year resident in his ER rotation and just hadn't encountered NF. Of course he hadn't, there's only 500 cases a year in the US. It's funny when I see a new doctor or nurse who hasn't taken care of a patient with a history of NF and all the surgeries, wounds, skin grafts, coma, etc. They are always fascinated, ask a million questions, and want to examine all the wounds. I can't blame them, I'd probably be curious too. When I told Dr. Mosier and Dr. G about it, they just laughed and shook their heads.
After those shenanigans were over, all that was left was recovery. I layed on the couch and tried to ignore the pain. Eventually, the drains were taken out, one by one. The last abdominal drain stayed in for several more weeks but finally they removed that, and I was somewhat free. Not really, I still had to lay there and not move, but at least I wasn't dragging drains around. Laying there like that was extremely depressing. I felt somewhat worthless- I couldn't work, I couldn't take care of the house, I couldn't make dinner. As others went on with their lives, I started to feel lonely. Jon was amazing, as usual, but he was gone at work for 12 hours a day. There were many, MANY, times that I called my mom crying. WHY am I still going through this?? Why did this happen? It's not fair! I'm so sick of being sick. Why am I still consumed with this nec fasc while everyone else is living their lives, working, having kids, etc. "I know, Ames," she would say. "I know it feels unfair. God is gonna get you through this. You have to trust that God has great plans for you.. We don't know why, but we have to trust."
I knew I had to walk with God instead of walking away. And when you feel like that, trust me, sometimes you feel like walking away. I knew I had to trust in Him and go to Him for strength, instead of trying to be strong on my own.
5 weeks after surgeries 8 & 9 I was allowed to start PT again. I was thrilled... Finally I could MOVE!!
I'm now around 12 weeks out. I'm working my butt off in the gym, trying to strengthen a leg that has no quad muscle. I'm teaching myself how to run differently, using different muscles instead of my right quad. As a result, my knee and hip are constantly sore and my calfs cramp in the beginning of every run.
You might think, okay, if you can run, you're totally healed, right? Ehh...no. Not yet. Nec fasc is an illness that brings lots of lingering health effects. I still don't sleep well. I still have nightmares about surgery. I still deal with weakness all day long, and have to suck it up to go to the gym for that hour or two. When I'm done working out or going to PT, my body is just done. I ache so bad, everywhere. My leg, my hip, my knee, my back. Since alot of my abdominal muscle was removed, I just don't have any strength in my core. Working out and PT is helping that, and slowly, I'm getting stronger.
My goal right now is to get back to work (I'm a labor & delivery nurse) sometime this summer. I'm doing everything I can to build up my endurance, deal with the pain, and fight the weakness. Right now, a 12 hour shift would be impossible. Even a 4 hour shift would be extremely difficult and probably very painful.
I know I can do it. I'm praying about it daily and doing my part- working hard and fighting. I know when I run my first post-nec fasc marathon and help deliver the first baby, all of this hard work will pay off in pure exhilaration.
And when in doubt, I have to remember that I'm here. I'm alive. I beat the odds; 5% survival rate.
I have a BIG but it's now what makes me, me. and I AM BLESSED.