April 24th, 2007 I went into the hospital day surgery clinic to have a small inguinal hernia fixed. The hernia bothered me during my pregnancies, but not in-between pregnancies. Since my husband and I were thinking of the possibility of another baby, it was time to fix this hernia so the next pregnancy wouldn't hurt so much. I had four small children at home, ages 1.5, 4, 6, and 8. I was strong and healthy with two wonderful careers; my steady job was playing french horn in an orchestra here in my city of Be'er Sheva Israel, and my other career was that I was a birth doula, helping women all over Israel have their babies. I was 39 years old, in the prime of my life.
When I woke from the hernia surgery, my surgeon, who was then a family friend, told me of a small complication he encountered. Not to worry, he said, but he found a fatty tumor in the groin when he went in (it was open surgery, not laproscopic). These types of tumors are called “lipomas”, and this one seemed filled with lymph nodes, perhaps old infection was encased in this fatty tumor. He excised the tumor, and went on to fix the hernia, and sent the tumor tissue to pathology. He said to me he's seen a lot of cancer in his life, and this for sure was not cancer, I shouldn't worry. OK, I trusted him. My entire groin on the left and all down my thigh was numb. I told him this, and he said it would come back, not to worry about that, either. [note- to this day, 10 years later- that exact same numbness exists].
I was discharged a few hours after the surgery, partially numb, partially in heavy pain from the surgery I just underwent. I was given post-op instructions that if the incision bleeds any amount that is bigger than the size of about a dime, I am to come back to the hospital the next day.
I woke up the next day with the entire bandage saturated in blood. So, back to the hospital we went after dropping the children off at school/ day care. I was in lots of pain, but that is to be expected the day after surgery.
My surgeon met us at the hospital ER entry. No check-in process, he unofficially did a post-op check. (he had done many unofficial checks before surgery as well.) He took one look at the uncovered incision and said “looks fine, closed up tight, nothing can get in there”. Those were his exact words. I will never forget them as long as I live.
The next few days I had lots of post-op pain, it didn't seem to be getting better each day like my father-in-law, who was visiting at the time, kept saying to me. I kept taking Tylenol for the pain, but it wasn't really helping. The night of the fourth day after surgery things started getting worse. I had a pre-natal class with one of my couples, and I taught them. Afterwards, I came upstairs telling Robert (my husband) that I really wasn't feeling well, and I was going to bed. I felt like I was getting a fever. I took Tylenol and went to bed. The pain from the surgery was getting worse and worse, and the Tylenol wasn't helping at all. Then I took Advil. The fever was down, but the pain was so bad it was getting hard to move in any direction. I told Robert the pain was just getting worse and worse. He called my surgeon's cell phone, remember, we were family friends at the time. He said to put ice on the incision, keep alternating with the Tylenol and Advil, and if it's not better in the morning then come back to the hospital. At some point in the night I felt like I needed to throw-up. I fainted on my way to the bathroom, and came-to all alone there on the floor. I crawled to the phone to reach my husband (we have a big house, he was in the basement). I got back into bed, and I was in horrific pain, and was shivering uncontrollably. Any move I made felt like knives were digging into my body. My husband called the surgeon again. He said that he's not on shift until 7am, and it's probably nothing, and to come in at 7am. My husband was REALLY worried and scared, and I was screaming in pain and shivering, with my teeth chattering uncontrollably. I also fainted every so often, just there in bed, apparently, but that I know because my husband told me.
Robert wanted to take me to the hospital. It was 2am. The children needed to be worried about, my father-in-law couldn't handle getting them all out in the morning. Robert called our dear friend and neighbor, Miriam to come over. I told Robert I can't move, I can't get into a car. He called an ambulance. They came, and got me down all our stairs, it was so painful. I now know that my oldest son woke up with all the commotion, but he was too scared to come out of his room.
I fainted a few more times in the ambulance, and the medics grabbed my shoulder in a certain way (think “Spock”) that shocked me awake. I was literally screaming in pain. I remember Robert asking them why don't they let me stay in a faint, if my vital signs are OK, I am more comfortable? They said they can't do that, I have to stay awake. It was a long time in the ER before I got pain medicine, that's all I remember. Many many hours before I got any pain medicine. Horrific.
What's also horrific is that I didn't get any antibiotics, either. Not that day, or the next, or the next. My doctor came on duty at 7am, like he said, I was admitted to his ward with post-op pain, but no antibiotics were administered. When Robert suggested it, my surgeon said that since I'm allergic to Penicillin, he didn't want to give me a broad-spectrum antibiotic, and didn't have a specific bug to test for, so no, no antibiotics for now. It's “just” post-op pain. They did an x-ray and an ultrasound, all of which seemed to be clear. (I found out years later, in our law suit, that the tell-tale air-bubbles of NF infection could easily be seen in the ultrasound, but two doctors signed off on it being fine). There was one nurse who, when my husband approached her to tell her I needed more pain medicine, she took him aside and said “you know what it is with your wife? She is just looking for the pain medicine, she's spoiled”. He was SO pissed off. He told her off. He said he saw me give birth naturally three times with no medication, she cannot talk that way about his wife. (I had an emergency c-section with my 4th child- a whole other story, also about a hidden infection). I'm glad he stood up for me.
At some point they moved my room to right across from the nurses station. I didn't know why. I later learned that it was because my blood pressure dropped to 40/60. I was blissfully unaware of the danger, or of the need for the room change. Robert knew, though. The nurses had called him to tell him. He then called me (it was morning, and he was driving children to school and child care) and I answered. He was so glad to hear my voice, asked me if I'm OK. I told him I was fine as long as I had the pain medicine. He did seem overly relieved to me, but I didn't know anything was up. I didn't know that according to my blood pressure I was dying.
My surgeon came in and told me that a decision has been made to take me for an exploratory surgery. I actually was surprised, I hadn't thought that was on the table, I hadn't been warned. He told me, again, that he thought I may have a tubal pregnancy. I told him, AGAIN, that it's highly unlikely, since I track my cycles and know exactly what is happening. I later found out, in the law-suit, that he was told by the head of surgery not to take me in for exploratory surgery because my blood pressure was too low, my vitals were too unstable. But he did, anyway, ALONE. He had no assistant with him, just an anesthesiologist.
It was during the exploratory surgery that they started to suspect “a bad bug on board”. I write that in quotations because it is what my husband told me he was told by the surgeon, when the surgeon came out to give my husband an update. That they now suspected a bad bug, and had me in CT for a scan.
I remember that CT, but I didn't know I was in a CT scan, of course. They must have lifted the anesthesia a bit. Just enough for me to open my eyes, but not feel my body. I actually thought I was possibly dying. I was seeing myself in a white tube, and the last thing I knew I was pretty sick, and I was taken into surgery. I couldn't feel my body. I started thinking, I started pleading with God, “no, no, not now, my kids are too young... they need me, they're just babies, don't leave them motherless...
I was so scared. But then, as a tear rolled down the side of my temple, I found peace. I said the prayer that a Jew says at the moment of their death. “Sh'ma Yisrael, Ado....”
The next thing I remember, along with many loud voices all the time and constant beeping and chiming, is trying desperately to open my eyes again. I opened them, and I saw my husband next to me, saying Psalms. I tried to talk, but the tube in my throat prevented that. I tried to raise my hand, to take out the tube. The nurse alerted Robert that I was awake. He was so excited, almost in disbelief. He told me not to try to talk, he took my hand, which apparently was only a few inches up, and gently put it back down. He told me I've been asleep for a while. He told me it had been four days. That they had to medically induce coma because I had a very bad infection, but I am clear of it now, and I'm OK now. That was the beginning of shock for me setting in. I had no idea of the real damage, or any details.
I was in ICU for a few days. The next shock to hit me, though, was to see my parents walking through the doors of that ICU. They had gotten on a plane from New York (I live in Israel) because they were called and informed that I may not make it through the surgery. I had just gotten the tube removed from my throat, but could barely talk. My mother saw me and hugged me, saying “oh, my baby!” over and over, crying. My father took my hand and just didn't let go. I still didn't know the depth of the danger I had been in, but it was sinking in.
In a few days time I was transferred to the surgical ward. I still didn't know the extent of my surgical wound, because I was very heavily medicated, but the dressing changes were very elaborate. I just didn't watch. I kind of knew it was a big hole, I knew that they were packing it every day, but I couldn't look. It was the top of my left leg, and the bottom part of my stomach on the left side. Robert kept trying to tell me little facts about the disease I had, Necrotizing Fasciitis, and I was interested, but mostly shocked and scared.
In a shower once, a nurse decided she was going to make me look at it whether I was ready or not. She told me to put soap on it, that she was not going to do it for me any more. It was so hard, I felt I wasn't ready, but I did what she told me. I saw it, I soaped it, I washed it. She told me to go over it with the shower head 10 times, and I did. I can't tell you how hard it was to see my body that way, it looked like a piece of meat in a butcher shop. I couldn't imagine how I was going to survive in the world like that.
I have so many stories of things that happened to me while I was in the hospital. I'm sure we all do. One that I choose to write here is for the specific reason to teach others... to spread awareness. This specific thing is so important, and it caused me so much trauma, and should not have happened.
It happened after my skin graft surgery.
I'll back up a bit-- after two weeks in the surgical ward, the wound was ready to receive a skin graft. This would close it, and aid in healing. Skin would be taken from a “donor site”, my right thigh, and put over the hole on the left side.
The surgery went well. I was pleased when I woke up and was told it was the same day. The first thing I felt was the donor leg, my right thigh, felt like it was on FIRE. It was really awful, urgent pain. I was given pain medicine, but it only really took the edge off. I had never felt anything like that. Like a terrible sunburn on the whole thigh.
The next morning, the plastic surgeon came in with a crew of residents from the medical school. I was awakened by their arrival, and had no pain medicine in my system yet, and nobody by my bedside with me. Now came the time to see if the graft had “taken”. He carefully removed the bandages on my left side, poked around a little, and pronounced it good. It had taken. I was so relieved! Then he moved to my right side. He asked a resident to start removing the bandages from the donor site. Then I got scared. That hurt. The resident started opening the bandages slowly, and I began to yelp... he continued, and I began to yelp louder, that would be, yell....
and the resident said to the doctor “I shouldn't continue, she's in pain”. My eyes darted to the doctor. The doctor said in Hebrew “Open it”. Direct command. Resident said “I can't”. Doctor pushed resident out of the way, opens up my bandage himself as I scream bloody murder into my pillow. I'm quite sure the entire ward heard. Nurses came running, but just stood by the side helpless. Remember, first thing in the morning, no pain medicine in me. Nice way to teach students, huh? This doctor is the head of the plastic surgery ward now. He took one look at the leg bleeding all over the place, said “fine”, and lead his shocked med students out of my room.
I later learned that the bandage that is put on the donor site is supposed to fall off by itself. It is a special bandage, and is meant to only fall off when the wound is ready. Because the doctor did this, I had problems with the donor site for an entire year after the surgery. The donor site gave me more problems than the NF wound site did.
After the doctor left I was hysterically crying, in horrific pain. The nurse immediately gave me pain medicine. I called my husband to come immediately. He had to drive the children to school and day care, and he came as fast as he could. I wouldn't let the nurse touch me until he was there and the pain medicine took effect. By that time, all the bed sheets and torn bandages were stuck to me with dried congealed blood. The nurse was an angel. She brought the shower wheelchair to me, and gathered all the bed sheets up around me and helped me into the shower chair. In the shower, under warm water, in the course of about 20 minutes (that's a lot of time for a nurse to give to a patient in a hospital) she slowly helped get my bandages off in the shower. Yes, it hurt, but there was nothing to be done about it, she was going as gingerly as possible, using soap and warm water, saying soothing things to me as I sobbed under the shower. My husband was waiting for me right outside. After I got back into bed, the nurse gently bandaged me after putting Syntomycin cream on it. That BURNED so much. In the end she gave me another Percocet, and after a while I did calm down, but I think it wasn't until about four hours from the time that the plastic surgeon came in the door that morning.
It took an entire year for both my scar sites to settle down. That means they itched, the donor site got infected and was hypertrophic, the wound site was not flexible and had many problems, I wore silicone sheathes and a pressure garment on them for well over a year. I developed lymph edema in the thigh of the left leg where the lymph nodes were by-and-large removed during the NF surgery.
I developed another rare disease in that left thigh, as well. You'd think one would be quite enough for me. As the year went on, and pain increased in the joint itself, I had to convince the doctor to please do an MRI on the joint, that something is bothering me. They kept telling me that scar tissue is growing into the joint, and that's what is bothering me, but I insisted that it is something else. So, To make a long story short, I did the MRI, wound up having to take it to three different doctors because there was something there but the doctors didn't understand exactly what, until I got to an orthopedic oncologist. It was diagnosed as a rare tumor disease called PVNS. That meant another surgery, left leg, again.
In these past ten years, there have been many more illnesses... cellulitis multiple times, appendicitis, surgeries for the NF wound (mesh/clips), more left thigh joint surgeries because of PVNS, right thigh joint surgery, kidney disease as a result of the NF, I can't even think of all the other things. My medical resume is a mile thick. I never got healthy again after I had NF. I can't explain why. Even as I write this, I am in a very low point medically, something is wrong in my abdomen and I have been in tremendous pain for two months, I probably need another surgery on the hernia mesh where the NF was. (I am waiting for a consult with my surgeon who is presently out of the country).
Many people heal and go on after NF. My system, for whatever reason, never bounced back. I never got my health back. I never got my careers back, I didn't get back to work since the age of 39.
But my children got a stay-at-home mom, which they would not have had, and that, I'm quite sure, is priceless. I'm also quite sure that that is God's plan.