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Read Others' Stories
T.E.A.M. > Read Others' Stories
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Martha, A meningitis survivor from Georgia
In 1981 I came down with meningococcal meningitis. I was 19 and in
college. My case was the 1st case in the hospital in south Florida. After
being diognosed with the flu I was sent home. I woke up vomitting and would
faint when I stood up.
When the fire and rescue came, my pulse could not be detected. I spent 10
days in the hospital, 3 days in ICU. They realized what I had after the
spinal tap, and at that point injected penicillin to kick it. There were no
side effects or permanent injuries. I understand that I am very lucky to be
alive and I urge parents to vaccinate their children.
Amy, Sister of Laura, died of meningococcal disease Maryland
My sister, Laura, was a freshman at the University of Vermont when she contracted meningitis. She was away at school for just a few weeks. She hadn't been feeling well, and we all thought she was coming down with the flu. I was a senior in college when I got the phone call on an early Friday morning that Laura was very sick and that they were getting on the first flight up to Burlington to see what was going on. Of course I went with them. When we got to the hospital she was in a coma. She was receiving a lot of antibiotics but they weren't working. Her internal organs shut down one by one.
When her heart started to fail the doctors tried a pacemaker but by then it was too late. Laura died on Saturday, October 11, 1986. She was 18 years old. Our family and her friends were devastated by her death and still are. She was a vibrant and beautiful young woman who was full of life and had everything to live for. We all miss her terribly and hope that this terrible disease will one day eradicated. Thank you for letting me share my story.
Beverly, Parent of Josh, meningococcal disease survivor Iowa
I'm a mom to 16 year old Eric, who was diagnosed with Bacterial Meningitis on March 20,2008. All the symptoms he was showing were the same as the FLU. On the night of March 19th he complained of a Headache and the chills. My husband gave him some Ibuprofen and told him to get some rest.
The next morning he was still complaining of a headache, so we decided he should stay home from school. We did all we could to relieve the pain and I decided to call Ask-A-Nurse, she stated that without seeing him she could not really tell what was wrong, it could be the flu but he should come in to be seen. After I hung up he started vomiting and had the diarrhea, the vomit was the brightest flourescent green that I have ever seen. Eric said he wanted to lie down for a while and we would talk about taking him later if he still felt bad.
Well about 1 hour later I was checking symptoms on WEBMD and I heard a thump and some noises. I got up to see what was going on and Eric was stumbling to me and it was obvious to me that he had no clue what was going on. He was not able to see or hear me and when I touched him he would scream an ear piercing scream, that is when I called 911. The dispatcher was unable to hear me above the screams, I tried to talk to her and tell her what was wrong, but she knew I needed help immediately. I got Eric to the Loveseat and that is when he went unconscious. I tried rubbing his chest and feet but no response, by then the ambulance crew were there and started oxygen and tried to get him to respond. We started off to the Gundersen Lutheran Medical Center in LaCrosse, Wisconsin a 40-45 minute drive. He was unconscious the whole ride until we got a few blocks from the E.R., and then he started screaming and kicking and he was uncontrollable.
They had security guards waiting for us to help hold him down from hurting himself or anyone else, He was only 140 LBS, but it took 7-8 Men to hold him down. In the E.R. they did a Spinal Tap and Cat Scan and that was when we got the news. Eric had Bacterial Meningitis and the prognosis was not good. They immediately started him on several different antibiotics and sent him to P.I.C.U., and we were told he probably would not make it through the night, because they stated that he was gravely ill. Well, he fought any and everything they tried to do -- insertion of a breathing tube would was recommended, but he fought until we were all tired and the doctors said we will wait and put one in if needed. Well, it was a long night; he had several students stop by just to give us support and pray. My husband and I went to rest around 1a.m. and got up at 3a.m. to check and he was still out. At 3:50a.m. the nurse came in and said he was awake and we took off running. He was very groggy, but he was alive and talking.
All the praying and crying gave our boy back to us. The Doctors were so impressed by the rapid response, they had never seen someone come out of it so fast. They stated that they had never seen someone get sick so hard and fast and also come out of it so quickly, that we truly believe he is a MIRACLE. By the end of the day they moved him into his own room on regular floor, where he stayed for a week on I.V. antibiotics. He has made a full recovery, and has returned to school, driving and sports[his life]. We are so grateful for the quick action taken by the Medical Staff in finding what was trying to basically kill my 16 year old son. We will forever be grateful to them and all the Staff who took care of him. Please have your children vaccinated for Meningitis. I have 6 children and would not want anyone to go through what we had to go through.
Brian, Friend of Eric, died of meningococcal disease St. Louis, Missouri
My friend Eric got meningitis a few years back. He was only 17. He was very well known throughout the town, as his mom owns the local skate shop. He was friends with everyone and his death was very tragic and devastating.
Catherine, Parent of a meningococcal disease survivor
United Kingdom
My son developed meningitis when was 7 months old. He spent 84 days in hospital, and it was terrifying. He had his right foot amputated and has suffered kidney damage as a result. He is on medication, which will be for life, and is now doing well. We have a long road ahead of us and with my husband and family we will eventually get there!
Courtney, Parent of a meningococcal disease victim Montana
On 10/31/07 my 14 month old son died of meningitis. A couple of days before he died, he was great running around, laughing. He was so full of life. Sunday he would not stay awake for very long. He would get up for a little bit, but not for very long. Monday, he wouldn't eat. His eyes kind of looked weird and his color wasn't right.
I took him to the ER Monday evening. I was there for about 3 hours before they saw him. So, it was about 9:00 pm before we got to see a doctor. They sent him home with the flu.... I was thinking thank goodness it is only the flu. Well, it wasn't the flu. He died about 12 hours later. The worst day of my life. I wish there was a way doctors had to check for meningitis every time a child went to the ER with flu like symptoms. I miss him so much.. It happened so quickly... I'm sorry for everyone who has lost a loved one to meningitis. My prayers are with you. We think it can't happen to us but it does.
Danielle, a meningococcal disease survivor
Georgia
My name is Danielle and I am 23 years old, and I am a survivor of bacterial meningococcal meningitis. When I was only 2 years old, I contracted this horrible disease while traveling out of state. My parents said for days I ran a fever of close to 106 degrees, but hospitals continued to send me home with them because they could not figure out what was wrong with me. Finally, one doctor, and if not for him I probably would not be here, made the decision to do a spinal tap and discovered that I was highly
contaminated with this serious disease. After my parents were told that I had a 10% chance of survival, I was life-flighted to a children's hospital that could help me. Immediately I was placed on IV antibiotics which caused me to fall into a coma. I was in a coma for 3 months, when doctors told my parents that if I made it out, I would have brain damage, and loss of hearing and sight because of the high fever that I had suffered for such a long period of time. Finally my parents' prayers were answered when I finally woke up. To the disbelief of all the doctors and hospital staff, I had not suffering any brain damage and no loss of hearing or vision. To this day, the doctors are puzzled as to how I overcame what seemed to be an unalterable outcome. Now I am happily married with a wonderful 2 year old little boy and a college graduate from Georgia Southern University. Miracles can come true.
Deb, Parent of Ryan, meningococcal disease survivor
Steubenville, Ohio
My son Ryan was a freshman on a baseball scholarship at the University of Akron when I received a call from his roommate that Ryan was very sick with a rash all over his body. Since I, like so many other parents, thought it was the flu I told his friend to just get him to the hospital. It wasn't until I arrived at the hospital did I hear the term meningococcemia. Luckily for Ryan the diagnosis and treatment in the ER and I.C.U. came quickly and he survived. I testified in 2004 to help get our state's Meningitis Awareness Bill passed because no young person should suffer or die from this disease. Before Ryan left for college, we were told how much college would cost however, I didn't realize it could have almost cost me my son's life.
Jaylene, a meningococcal disease survivor
Wisconsin
My name is Jaylene and I survived Meningoccal Meningitis. The day was
August 25, 2005 and I had just got off from a long day at work. I was
driving home and my back hurt, but I didn't think anything of it. By the
time I got home my head and neck hurt as well. I called my mom and told her
about it; she told me to take some pain pills and go to sleep. I had been
under a significant amount of stress and we thought it was just that. I
woke up about 3 hours later and my legs hurt so I called my mom and I told
her. She said that I should go to the hospital, and I refused, because I
didn't have Health Insurance. I went back to bed and woke up at about 1:00
am, and I couldn't move my body. I called my mom and she came over to get
me. I couldn't walk out to the truck; my mom had to half carry- half drag
me. During the drive to the hospital, I kept asking my mom if I was dying.
We got to the emergency room and went right in. The doctor came in and
asked us lots of questions and then left. I sat in there for 3 hours till
he came back. They ran some tests, did a CT and a MRI and couldn't find
anything. They were going to send me home but my mom is a nurse and refused
to let me go like this. Finally they thought it was my gall bladder, so
they called for the surgeon to come down and were prepping me for surgery.
Mind you the time that has lapsed is about 9 hours since I first got to the
ER. I was in and out of consciousness and throwing up a lot. My mom said
my blood pressure was dropping tremendously. My mom called my dad and my
brother to come to the ER.
When the surgeon came down I had all these black and blue spots all over my
body; it was then that they decided I had Toxic Shock Syndrome. My mom
requested a new doctor and a new hospital. The new doctor came in and I
asked him if I was going to die, and he said that I was a very sick little
girl but he didn't think I was going to die. My parents had decided to have
me taken to the other hospital by helicopter vs. ambulance, so we waited
till the personnel got there. When I left the ER to go to the helicopter my
blood pressure was 34/20. I got to the hospital and the next thing I
remember is waking up 13 days later from a coma. ALL of my organs had
failed but my heart. I was on 24 hour dialysis for my kidneys. I was in
the CCU for 17 days total till I got transferred to the dialysis unit. I had
to have dialysis 3 times a week for 4 hours a time. I couldn't walk on my
own, starting first with a wheelchair and then with a walker. I had to
learn how to walk and write all over again. My kidneys finally started
working but my levels were still really high until one day I was able to go
home. I was in the hospital for a month. I then was rehabilitating myself
for the next 6 months. I have survived meningitis with all my appendages,
but I have kidney failure. There was too much damage done to my kidneys for
them to go back to normal. My kidneys are working at about 43% and I will
have to have a transplant probably before I die. I have survived this but I
didn't do it alone. My family was a huge, huge help. My mom never left my
side from the day she took me into the ER till the day we left the hospital.
They had a doctors on-call room that my mom stayed in when I was transferred
to the unit but while in CCU my mom slept on my bedrail, not wanting me to
wake up alone when I did. My twin brother took off of work and stayed with
me the whole time I was in CCU. My other brother came up every day. My
oldest brother drove all night from Ohio to be here and stayed with me till
I got to go home. My fiancee was with me everyday also. I had a huge
amount of family and friends praying for my survival, and without them I
wouldn't be here today telling you my story.
Kimberly, Parent of a meningococcal disease survivor Ontario, Canada
My daughter awoke on night with a fever of 104.5. At only 4 months of age, I became fearful of her lethargy and took her to a hospital. Within just a few hours her neck was very stiff and she was going into respiratory failure. She was started on antibiotics but it was not for 4 more hours that the first light purple spots appeared on her forehead. In the next 24 hours, she had turned into a swollen, dark purple baby from head to toe. She was on a breathing tube, and arterial lines as well as many iv pumps were keeping her alive. She suffered 3rd degree tissue damage on her legs and 2nd degree damage to parts of her arms but by the grace of God- and medicine- she did not require any amputations. Today my daughter is an active 8 year old girl. However, her illness left her growth plates damaged. She has a 5cm leg length discrepancy and the growth in both legs has now stopped. She faces corrective surgery in a wrist and ankle. My daughter is a miracle and a warrior. She is my hero. We have since learned that she became so ill so quickly, partially due to her congenital asplenia. If I can help others with my story to support research and promote vaccines, please share it with as many as you can. Thanks NMA for without your research, my beautiful baby would surely have died that night. Medicine makes hope possible.......
Kimberly, Parent of Josh, a meningococcal disease survivor
California
My son was diagnosed with meningococcal meningitis in 1988 when he
was 2 yrs old. The night before he was diagnosed we called the doctor to
let him know that my son had a fever of 104; we were told to bring him to
the office in the morning. When we saw the doctor in the morning, we were
sent home with a diagnosis of high fever flu. No medications were sent
home. By the afternoon, Josh's blood vessels were bursting, he had negative
blood pressure and he was in shock.
Thank God for the head physician at Sutter Memorial Hospital and the other
doctors and nurses for saving my child. He had a 20% chance to live and he
did. He was in intensive care for 2 weeks and in the hospital for 5. He had
to go through Physical Therapy and wear leggings and only has a few scars to
remind us all of this terrible experience.
Thank you for educating the public, physicians and other health care
professionals about this terrible disease. That the flu can be more than
just the flu. It is too bad the vaccine is only recommended for pre-teens
and teens. This disease hit my son at age 2 and hit him hard. Like blood
poisoning bursting his veins!
Lauren, survivor of meningococcal disease
Lincoln, NE
My life took a drastic change the summer before my senior year in high school when a group of students and I went on a trip to Spain in June 2002. I was nearing my 17th birthday and looking forward to coming home to see my family after the long three weeks I had spent overseas. Towards the last few days of our trip many of the students including me started to feel ill. We all just thought it was the culture shock of drinking warm milk and eating uncooked meats. We were all eager to get home and eat the food that we were all used to and eager to spend the night in our own warm beds.
June 22, 2002: This would be the day that I would never forget. Approximately two days after we arrived in the States I woke up around 4:00 am my parent’s house with severe pain in my abdomen. It was painful enough that I yelled for my mother. At the time the both of us just thought it was “the bug” that I had picked up from Spain. After popping a few aspirins and Pepto Bismol I fell back asleep until about 8:00 am when my mother woke me up to let me know that she needed to run into town to attend a teaching seminar. She notified me that she would be back in a few hours and if I needed anything to call her and she would be right home. A few hours later my mother came home and found me sweating and unable to move in my bed. Within the two hours my entire body went numb and was in a paralyzed state. To this day, I feel that an Angel carried me from my second story bedroom to my mothers car. From this moment on, I have a huge gap in my story. Little did I know I was going to be blind for the next 72 hours. I was rushed to Seward Medical Hospital in Seward, Nebraska (my hometown) and some hours later I was being life flighted to Children’s Hospital in Omaha, Nebraska where I spend the next 2 weeks fighting for my life. I had lost all recollection of what had happened during my first few days in Omaha. I am so grateful to the doctors, nurses and staff at the Seward Family Medical Center who were able to realize I needed care beyond what they could provide as well as the doctors, nurses and staff at Children’s Hospital for diagnosing me with Bacterial and Viral Meningitis. The bacteria in my body had spread into my brain causing much swelling and also had gotten into my blood. I had type C neisseria meningitides.
Recovery: After being in the hospital for so long and having such a severe case of Meningitis I lost all feeling in my legs. I attended physical therapy regularly for years to learn how to walk as I did before this happened to me. I went back to my senior year but not with a full load of classes. Towards the second semester I was able to walk and attend classes with my friends. I am going to celebrate my 6th year anniversary this year and I am so lucky to be here. If it was not for the heroic efforts of the StarCare team and the rapid medical treatment I would not be here today.
Side Effects: I currently live with hypertension in all of my joints and suffer from rheumatoid arthritis in my knees. I was fortunate enough to get all of my vision back in both of my eyes and did not need to amputate any of my limbs. Due to the medicine I was given in the hospital I suffered loss of feelings in two of my fingers on my right hand. During my stay in Omaha my fingers turned blue and were almost amputated. During the winter months, my pointer and ring finger become stiff and difficult to move. I am unable to engage in running or sprinting due to the increased swelling of my joints. All of these are so minor to what many individuals encounter after having Meningitis. I truly have an Angel looking out for me and I am blessed every day that I am here. My hopes are that someday I can be directly involved in an organization such as yours to help educate how important the Meningitis vaccine is. I also want to become more educated on Meningitis as well. Thank you for allowing me to share my story with you. Please let me know what I can do! Thanks and God Bless!!
Rebecca, Friend of Sara, died of meningococcal disease
Pennsylvania
Back in March 2007, my friend, Sara, woke up one day with the flu,
or at least that's what the hospital said. After the hospital sent her home, she went back two more times that day for help. They assured her that she just had a bad case of the flu and would feel better tomorrow. Well tomorrow never came; she ended up dying that night at 10:20 in her bed.
Robbie, Parent of a meningococcal disease victim Texas
My 35 year old son was diagnosed with bacterial meningitis and died on February 11, 2009, 36 hours after entering the hospital. He lived in Dayton, Texas, and was taken to Herman Memorial hospital in Humble. I don't believe this news was made public in the area. His name was Shawn. I feel that everyone should be made aware; it is such a dreadful and dangerous disease.
Terry, Child of a meningococcal disease victim
Georgia
When I was in the 1st grade my father, who was never sick woke up one morning feeling nauseated. He decided to go ahead into work in San Francisco. As the morning progressed, he got worse and was admitted to the hospital. Unfortunately, as the afternoon turned to evening, he died. He was 31 years old, had never had a serious illness and just got sick and died all in one day. Needless to say we were all in shock, especially when we were told they were not sure what caused his death.
We didn't even have a chance to tell him goodbye. We returned home from the funeral to a Christmas tree with presents for our dad still under the tree. It was almost a week before we learned of the reason being Spinal Meningitis, something we had never heard of. During that week my mother had to make many life changing decisions to raise four young children as a single parent. That was over 42 years ago and there are still so many people who have never even heard of meningitis and what is even scarier is that people still die or become permanently disabled.
The speed of this disease taking over your body is still today as it was in 1965, devastating. I feel as if there is no "getting a handle" on this once you have it. The day I heard immunizations were available, I thought to myself, "wonderful news" I would tell everyone, don't wait till someone close to you experiences this disease, be proactive and get the vaccine.
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