I have been encouraged to share my story. I hesitated at first because I did not want to appear as if I was bragging, or judging those who still have major disabilities after their bouts with Encephalitis. I did not want to be accused of offering false hope for recovery. (I firmly believe there is no such thing as false hope, either you have hope or you do not)
My recovery was aided by unbridled optimism, unsurpassed family support, good insurance, financial stability, employer and fellow employee support and a self directed rehab plan. I think each of these components played an important part in my recovery. It is a 5 year story so I will tell it in stages.
Please ask questions it will help make the story complete.
The starting point:
I am a NJ realtor in a shore area. I was sitting at my desk when I got what I decided at the time was my first migraine, an awful headache. I am a very healthy woman so I was certain if I took a Tylenol and put my head down on the desk for a few minutes it would go away. The last thing I remember from this point on until I “woke up” for the first time in Upenn, is saying to a co-worker “Oh my God , do I feel so sorry for people who get these migraines all the time” From this point on this part of the story is second hand info. It is what I have been told happened.
My broker sent me home. I drove the 25 mile route down the Garden State Parkway. Arrived home safely. Walked past my husband and went upstairs to bed. My husband said I was mumbling but he was able to understand my head hurt. Later in the early evening my moaning became so loud that he wanted me to see a doctor. He asked if I would go to the doctors I shook my head no. After a loud moan he asked about the hospital and I nodded yes.
Our small local hospital ER diagnosed it as a migraine. Gave me Percocet and sent me home. I lay on the couch throughout the night, unable to make it upstairs. My soft moaning gave way to a gasping/snoring sounding breathing pattern. My husband believed I was sleeping soundly because of the Percocet. My daughter came early afternoon tried to wake me tempting me with my constant companion a nice cup of hot tea. When she could not wake me no matter what she did, she insisted I go back to the hospital.
They carried me out to the car and into the hospital. I had a 105 fever upon arrival they packed me in ice. I was having trouble breathing and was on nasal o2. They told my husband there was nothing they could do for me but make me comfortable. That he should get a priest. After a while my daughter noticed my o2 level reading was very low and asked why I wasn’t on a respirator. They said “we don’t have the equipment to dedicate long term to one patient. A quote that to this day makes my family livid. After that comment my daughter-in-law contacted a Doctor in Philly who suggested I be transferred to UPenn. By this point I was barely breathing but taking what my family calls my swimming breaths. Large gasps from my mouth “fish like”deep and rhythmic unnatural breathing. ( I am a swimmer and used to breathing when I need air anyone who swims freestyle will understand )That may have been my lifesaver)Upenn excepted me as a patient and sent the helicopter. Instructed our local hospital what meds to start me on and to get me on a respirator Stat. My sister who rushed to the ER teases me that I missed those 4 darling sexy young medics in the tight flightsuits that flew me away.
I don’t know what treatments were given at UPenn. I will find out in July when I go for my first follow up there in four years. So more about that later.
I am off to work. I will tell about “waking up” next
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Fully recovered and how it happened
- By jerseagal
- Posted June 11, 2008 at 8:07 am · 21 replies
- In Life after encephalitis
- Shared with the public
21 replies
- Oldest first
- Newest first
- By MichelleN
- Posted June 11, 2008 at 10:02 am
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Jersegal I agree that there is no such thing as false hope. I didn't have optimism at first, but I do now and things have gotten much better. That and my family support has helped very much so again I agree with that.
My family was told that there was no way I could survive as well. It's good that you survived and similar things happened me from what I've been told. If my step sister a nurse hadn't forced the doctors to transfer me to another hospital I wouldn't have survived.
Please do tell us more and thank you for sharing your story.
Michelle
- By PamandKim
- Posted June 11, 2008 at 11:21 am
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Hi Jerseagirl,
I am glad you posted to the group with your story. You do not live that far from us, we live in the suburbs of Phia. and go to the Jersey shore sometimes. We use to have a rental house in Sea Isle City. Kim was in A.I. duPont hospital in Delaware for 4 months inpatient and 18 months comrehensive rehab. We also saw some doctors at the Univ. of Penna. and Children's hospital of Phila. Kim's wonderful pediatric neurologist is in Newark, Delaware.
Pam and Kim
- By IngridGuerci
- Posted June 11, 2008 at 12:12 pm
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Thank you so much for sharing! Sounds like you have a great family and employer! We should all have been so lucky. I was diagnosed quickly by the doc in the ER but many others here were sent home from the ER more than once with meds for migraines. One of the missions here at this group is to make more doctors aware of the symptoms of encephalitis and to start treating patients quickly.
- By KarenSueHam590
- Posted June 12, 2008 at 1:00 pm
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Wow! Your experience is amazing, and I can't wait to hear more! We were so blessed to have knowledgeable doctors in the ER who treated our daughter, who started her out on exactly the antibiotics she needed for E. We did have a surgeon, though, who told us that she would never recover, that she would just continue to worsen. Was he ever wrong!! He's totally amazed at her now. We learned to not accept each and every thing that the medical professionals told us, unless it was positive!!! Looking forward to hearing more!
- By jerseagal
- Posted June 12, 2008 at 3:44 pm
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We are re-writing the medical books. We are beating the odds. We are healing injuries they say can not be healed. It is very difficult for science to admit they were wrong. We need to keep pushing for a followup empirical study.
Medical science has developed the methods and tools of support to keep us alive long enough to start the healing process. Those of us who are in a social setting conducive to the support and encouragement we need progress quicker in our healing process. Those of us who have a competitive spirit and love of adventure attack this process as a challenge.
I think you will see a clear pattern develop if we get more input from others who have “ been there done that”.
- By Sets
- Posted June 13, 2008 at 12:42 am
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Jerseagal:
Thank you very much for sharing. I am very, very interested in your story of hope and am waiting to hear more.
- By jerseagal
- Posted June 15, 2008 at 7:14 pm
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I was wrong to say we are "beating the odds" We are making new odds! Every improvement we made and continue to make is a physical healing of an injured brain. Case history and excepted prognosis of brain injury was so socially and medically pessimistic that patients had to be at the very top of the pyramid model to heal. No wonder it was deemed a miracle.
- By MichelleN
- Posted June 16, 2008 at 8:13 pm
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jerseagal, you could say that we are beating the odds to make new ones. I often wonder if so little is known about the brain that it is mostly hope that keeps us alive because they don't want to take a chance with messing up a puzzle that hasn't ever been solved.
- By jerseagal
- Posted June 17, 2008 at 6:49 am
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More likely it is human progress.
Think how different things are with computers. You and I would never be sharing our experiences without this tool. The health care community is playing catch-up in many areas.
The cancer support websites are also helping to beat down the old prognosis’ timetables and creating new odds.
- By MichelleN
- Posted June 18, 2008 at 8:39 am
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These sites are wonderful for both us and the doctors. I always compair the brain to a much more complicated computer. That's a little strange, but that how I explain seizure to people who don't understand them.
Michelle
- By LeoA
- Posted February 19, 2009 at 11:53 pm
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J.
Thanks for your story.
I'm also a survivor and totally recovered (hope so...). I've been afraid to join the group because of the same reasons you mentioned. After reading your story I joined.
I COMPLETELY AGREE with your point of view regarding "we are beating the odds". I do also believe that a big part of your recovery depends on your attitude before the illness. In my particular experience, I convinced myself I was going to be out of that nightmare, where doctor just kept telling me very pessimistic things.
If there's something people like you, or me, could do to help here is to communicate the strong power that a correct attitude, will, faith and self confidence have.
LeoA
- By one_lil_red_hen
- Posted February 20, 2009 at 3:08 am
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Thanks for sharing JerseySeaGal, I'm so glad to hear your inspiring story, and I'm jealous.
~hen
- By yapingedon1
- Posted February 20, 2009 at 2:20 pm
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HUP Hospital of university of Penn Rules!! That is why I survived a three month coma due to E. I had pretty much the same story...good insurance/family/work...to back me up..... just got to get rid of these occasional seizures.
- By jerseagal
- Posted February 20, 2009 at 2:55 pm
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Please describe your seizures. The term is so vague.
- By elodge
- Posted February 20, 2009 at 5:08 pm
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i am only a couple of weeks out of the hospital...so your story is much needed and i appreciate you taking the time to put it down...
recovery ... is a lot harder than i thought...so your story gives me something...of great value...
HOPE>>>>
thankyou again....
rick...
- By jerseagal
- Posted February 20, 2009 at 10:43 pm
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I f you are on this site, typing these entries already you are leaps and bounds ahead of many of us in the early recovery period.
Take heart in that fact. Many of us were incognizant for weeks and months.
- By IngridGuerci
- Posted February 21, 2009 at 9:22 am
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Go to this website and read some of the stories; you are NOT alone!
http://www.1halloween.net/encephalitis/index.html
- By missmariann3
- Posted February 21, 2009 at 7:54 pm
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i want to mention a bit about my recovery of 16 years so far. i 'got over' HSE. as time went on i relapsed with different viruses. take care of yourself cause now you are immune compromised.
I am very glad you had all that support and look forward to hearing about the rest of your recovery.
Mariann
- By missmariann3
- Posted February 23, 2009 at 2:22 pm
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didn't want to sound down there. in between these viral relapses -2, I had very good recovery.
i would say, if you have to take meds, i do for seizures, don't just stop. take care of yourself.
mariann
- By plbubba
- Posted September 27, 2009 at 3:47 pm
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Good to hear success story. My Mother which was 77 when she got HSE in May. She was in the hospital for 2 long hard months. She is now in rehab and making progress. She feeds herself, talks (still confused at times but knows all of us) and has started to help us get her up and down. Family support and assistance from medical help is truly important. I feel that people can truly support others when they have been there themselves. Can't wait to hear the rest of the story.
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