Beverley's NF Survivor Story
My name is Beverley Mitchell. I am 32 years old and I am a survivor of Necrotizing Fasciitis. I live in Northern Ireland (UK). I was very glad to come across your website a few days ago and have spent hours reading the survivor stories on NNFF.org.
Where do I start! Please bear with me while I give you a bit of my medical history. Approximately 15 years ago I was diagnosed with a Pituitary Gland Tumor. A pituitary tumor is an abnormal growth that develops in the pituitary gland. The Pituitary Gland is a small bean shaped gland located at the base of your brain behind your nose and between your ears. Despite its size it controls nearly every part of your body. Its hormones help regulate important functions such as growth, blood pressure and reproduction. In my case the tumor is caused by overproduction of Prolactin from my pituitary gland (Prolactinoma). The pituitary gland is part of your endocrine system which includes the thyroid gland, adrenal gland, pancreas and ovaries. The cause of a pituitary tumor remains unknown. Because a pituitary gland tumor grows in such a limited space they can compress an optic nerve (the nerve that transmits visual information from your eye to your brain), slowly causing loss of vision.
At 16 years old I had very irregular menstrual periods. I also started having seizures and put on a lot of weight. I was referred to a Neurosurgeon by my Doctor. He sent me for a CT scan which detected the pituitary gland tumor. He prescribed some medication called Cabergoline to reduce the amount of prolactin that the gland produces and to shrink the tumor. I have been on Cabergoline for approx. 15 years now. I also get regular eye tests. I have worked for a laboratory for 12 years and only had 2 days sick in that time. I rarely get sick and consider myself to be pretty healthy. I have a good diet and drink lots of water and exercise regularly (swimming and walking etc.) but I never seem to lose weight. I was getting very depressed and decided to make an appointment with my doctor to see if he could help. He told me that I was a prime candidate for Polycystic Ovarian Syndrome. I was so thankful that there was a reason for all my weight gain and that someone was actually listening to me regarding my weight problems. My doctor referred me to a Gynecologist who did an internal ultrasound and diagnosed me with Polycystic Ovaries. She put me on a drug called Metformin which is prescribed for management of type 2 diabetes. My blood sugars are checked regularly and thankfully I do not have diabetes but I have been told I am at risk of getting diabetes. The metformin regulated my periods and I lost a little weight.
My husband and I had been married for nine years and we decided to start trying for a baby. It was September 2005 and by April 2006 I got pregnant with our first child. I was told by my Neurosurgeon and Gynecologist that I would have problems conceiving and maybe even miscarriage. So as you can imagine how delighted we were that I had got pregnant so quickly. I really enjoyed being pregnant. I had no sickness which was very lucky. I had regular scans and attended a special Antenatal/Metabolic Clinic where I was monitored very closely. I was due on the 29th of January 2006.
Around the 15th of January I was sitting at home watching TV when a very strange thing happened. I lost the sight in my right eye. It was very scary and thankfully only lasted for about 5 minutes. On my next appointment at the antenatal clinic I mentioned the episode with my eye to my Obstetrician. He informed me that I would have to have a CT scan to see if the tumor had grown. To my horror he also informed me that I would have to have a C-section. They said a natural birth would put to much pressure on the gland. I had it all planned, no pain relief and a water birth. I was brought into hospital the next day and some blood tests were done and I had a CT scan. The scan showed that the tumor had grown 2cms since the last scan that I had done in Oct 2002. This was not what I wanted to hear! They scheduled my C-section the next day 26th of January. I had to have a general anesthetic. My husband was not allowed into the operating theatre. We were very disappointed at this. But I was just glad to be having my baby. My beautiful baby boy was delivered safely at 2.40pm and weighed 7 pounds and 13 ounces. We called him Aaron. I was in recovery for about 4 hours. It took me along time to come round from the anesthetic. My husband and mum were allowed into the recovery room with me. Aaron was brought over to my bedside. I could not touch him or hold him because I was vomiting so much but at least I could see him. I don't really remember the next couple of hours. I was eventually bought up unto the maternity ward at around 7oclock that evening. The rest of my family where waiting to see me and the baby. I was so doped up on the Morphine I don't really remember who was there or when they left. I slept right through the night. The midwives took Aaron to the nursery to feed and change him. They looked after him for the rest of the night because I was just too sick.
The next morning 27th Jan. things took a dramatic turn. I was told by the midwife to get out of bed and go to the shower and get some breakfast. I told her I felt very sick and was in a lot of pain and couldn't get out of bed. I don't think she believed me. She said I would feel fine after I had a shower and something to eat. So I went of to have a shower on my own feeling very faint. I managed to get back to my bed without collapsing. My legs were so weak. I couldn't eat breakfast and started vomiting again. I was bringing up green bile as there was no food left in my stomach to bring up. I phoned my husband at about 11.30am from the bedside on my mobile phone and told him to get to the hospital as soon as he could. I told him I had a feeling that there was something badly wrong and that I was in a lot of pain. I started to think all sorts. Maybe they had perforated my bowel or something. My husband came and seemed to get through to the nurses better than I did. They started to run some blood tests and they did an ECG on me at the side of the bed. My heart was racing. I had a high temperature and was in severe pain. The maternity ward was very busy and the midwives could not cope with me, so I was moved to an empty Labor ward upstairs. A consultant on call who was dealing with my case asked for an emergency CT scan to be done. I was moved from the maternity hospital to the main hospital in an ambulance. I was in so much pain I thought I would just die there and then. The CT scan showed that I had an acute case of Pancreatitis. I was taken to the ICU and spent 3 days there. I had lung failure and was on a ventilator. I was on high doses of antibiotics and pain medications and Intravenous fluids. My family where told that my illness was life threatening. To cut a long story short, I spent the next 2 weeks in hospital with a central line in my neck because all my veins collapsed. I had IV fluids, antibiotics, Oxygen, pain medications and Injections to stop blood clots. I also had a catheter in because I also was told that I had Cellulitis. I was carrying about 5 stone of fluid. I also took an allergic reaction to the Morphine. I was vomiting, hallucinating and shouting. I also had a rash and burning sensation in my legs and arms. I was longing to get home to see my new baby and to bond properly with him. My husband Philip was great during my hospital stay. He was by my side most days for hours on end. He was allowed to bring Aaron in every day and the hospital staff were not strict on visiting hours. I had my own private room so when Aaron cried he wasn't really disturbing anyone. I couldn't hold him much but Phil propped him up on my bed beside me and I spent as much time with him as possible.
The day before I got home I had managed to keep some breakfast down and have a shower all on my own. I was making really good progress. (or so I thought) I was about to sit down on the bed to dry my hair and I felt this gush of fluid. I looked down and to my horror I was covered in a bloody-orange, cloudy type fluid. It splashed all over the floor and seemed to be coming from the c section wound. It had burst open because there was so much pressure being put on the wound from the fluid I was carrying. It scared the life out of me. I hit the buzzer and a nurse came running into my room. She told me not to panic and didn't seem overly surprised. She said that it was actually OK that the wound had opened because the fluid had to get out somehow. I did feel about 2 stone lighter. I got cleaned up and back into bed and the wound was dressed. I had to have it dressed three times a day for the next couple of days. It was very painful.
Eventually I was told I could go home on the 12th of February. I knew deep down that I had not made a full recovery and was sweating a lot and still in a lot of pain. I just wanted to get home to my husband and baby. I got home and tried to eat something but was still vomiting. I couldn't seem to keep food down. I knew this wasn't good because I needed to get some strength up if I was ever going to be able to look after Aaron. I had to sit and wait for someone to lift him unto my knee. It was so frustrating. I just wanted to do all the things a new mum should be able to do. Our house was very busy for the next few days, lots of family and friends calling to see Aaron. I received over 100 get well cards and flowers. My mum came and stayed with me most days because my husband has his own business and had to get back to work. I seemed to be getting worse each day instead of better. I had a district nurse call every morning and evening to dress my wound. She came in one morning and looked very concerned. My temperature was high I was sweating and my heart was racing again. I feared going back to hospital and convinced her that I was OK. She said she would send my doctor over as conveniently the surgery was just across the road from where I lived. He came over and looked at my wound and marked my tummy with a pen. I had an angry red rash and my skin was starting to look bruised and black. My wound was still oozing yellow puss and didn't seem to be healing. My doctor said he would like me to go back to hospital. Stupidly I argued with him to stay at home. Big mistake, that decision could actually have cost me my life. My doctor agreed and asked for a specialist hospital at home care nurse to come in and give me IV fluids and antibiotics just so I could stay at home with Aaron. The nurse called twice a day for the next couple of days. She continued dressing my wound and mentioned a few times that it was getting worse. She kept marking it with a pen and it seemed to be moving up and right across my tummy. She said I really should consider going back to hospital. Again I argued and cried because I just did not want to go back into hospital.
The next day 16th of February my cousin and friend came to look after me because my mum had to go back to work. They both had babies so you can imagine it was a bit like a creche, feeding changing nappies etc. They left to go home at around 6oclock and my husband and mum came in. I had a commode because I couldn't make it up and down the stairs to the bathroom. I asked my mum to bring it in so I could go to the toilet. My mum helped me out of the chair and unto the commode. To my horror when I stood up the smell that hit me was awful. My mum was very concerned and knew that I had some sort of infection. The nurse came in that evening at about 9oclock and got me up the stairs and into bed. She took of the dressing and I just knew by her face there was something wrong. She called my husband into the room to see. They didn't want to panic me and just said everything is OK but I knew it wasn't. I wanted to see what they were looking at, so I asked my husband to get the digital camera and take a picture so I could see. I was nearly sick when I saw the mess of my stomach. The nurse was not sure what she was dealing with so she called the out of hours doctor to get some advice. While the nurse, my mum and husband discussed my condition, I had fallen into a deep sleep. Next thing I woke at about 11.30pm and there was two ambulance men standing at the top of my stairs. My husband told me not to worry that I would be OK but was going to have to be sensible and go back into hospital. I was rushed into hospital in the ambulance. My husband came with me. The surgeons were waiting in the operating theatre for me. I required debridement surgery. I was in surgery for about six hours. My husband was left sitting outside the door he thought they had lost me at one stage because there was some kind of panic. I had lost so much blood that I needed a blood transfusion. I was moved to ICU and was again on a ventilator and had tubes coming out of me everywhere.
My husband was allowed in with Aaron to see me. I didn't waken until lunch time the next day. I remember coming round and my throat being so sore and asking for a drink. They gave me those awful sponge things on a stick to rub round my mouth. The surgeon came to my bed to explain what had happened. He said I had an infection called Necrotizing Fasciitis. He told me that they had removed about 4 to 5 inches of my stomach but they were not sure if they had managed to get all the infection away. I had to go back into surgery for more debridement surgery that afternoon. I had a wound Vac attached and was told that I had an open wound and they explained to me what the vac was doing. I was eventually moved from ICU to the burns and plastics unit. I spent the next two weeks on IV fluids, antibiotics, Oxygen, pain medications etc. I was taken into surgery and was mildly sedated so they could change the Vac dressing. I was told that I would need skin graft. This really bothered me because my brother had a bad motor bike accident a few years ago and had to have skin graft on his ankle and I remember him telling me how painful it was. Thankfully I did not need the skin graft as they were sure they had got all the infection away. They were able to sew me up.
It took me days to get out of bed. Every time I stood up I felt like my insides were going to fall out. I had to learn to walk again it was so hard. I was physically and emotionally exhausted. I didn't give up though my family were all brilliant. Especially my husband, mum & sister. My sister washed my hair, shaved my legs, painted my nails and anything else I asked her to do. She had lots of patience for me. My mum and dad were so good, bringing me lovely food because I couldn't eat the hospital food. Unfortunately it didn't stay down very long. I was so weary with the vomiting all the time. The day came when I was able to go home. The journey in the car on the way home was murder, I felt every bump on the road. I was having panic attacks and cold sweats and still was in a lot of pain. My mum and dad where at our house with Aaron to welcome me home. I was so glad to be home and to hold Aaron. I would have a little cry now and again and wander why this had happened to me. My road to recovery has been a long one. Lots of trips back and forwards to the hospital for ultrasounds and scans etc. My hair all fell out because of the anesthetics, drugs and stress on my body. It's a year later and my hair is only starting to grow back now. My scar is red and ugly. I have to go back into hospital for reconstructive surgery but the thought of that scares me to death. I would like my tummy fixed because it is awful looking. I have stretch marks all over my stomach and although my wound has healed well, it is all puckered and uneven. I can't feel parts of my tummy its just numb. Lets say I don't think I will ever be in a bikini again. But at least I am alive to tell the story I am so thankful to have survived. I would like to thank all my family and friends who prayed and supported me through my illness. I know I couldn't have got through it without them. I am so grateful for this website and being able to tell you about my experience has really helped me
God bless all of you out there that have come through NF and survived. My heart goes out to all of you that have lost loved ones through this awful disease and may God give you the strength to get through each day. I would be happy to talk to anyone about my experience so please feel free to contact me.
5/24/2007 4:08:45 AM PDT