This is the thing that scared me about the pandemic H1N1....there was no way to predict from a clinical standpoint who would get ARDS and who wouldn't. There were tons of young people who felt unwell, went to the ER twice, but then eventually recovered. Unfortunately, there were also many people in your boat, Linka, who presented to medical attention on more than one occasion and then eventually developed ARDS.
ARDS in the context of H1N1 infection was actually not from the influenza virus itself; rather, it was from the person's own immune system fighting it in an overzealous fashion. This is seen in many other types of infection as well. There's no way to predict whose immune systems will act in this fashion, but it is the subject of ongoing research in an area known as "immunomodulation".
As you say "cannot be predicted who'd develop ARDS". I don't agree with you there.
When we seek medical help/medical attention I personally went to ER because at the time I was 35-years-old and I know my body and when something is terribly wrong. My signs were : High fever that won't go down at all, sudden diarheea, deep cough with blood, horrible aches, very bad weakness, passed out at home before ER.
When I went to ER the first time I told them all that they wrote in their report "felt like her legs could not hold her?" whatever that means? I told a nurse I have cough with blood - she said "Because you cough so much, your throat got irritated and that's why you have blood" - both chest x-rays showed pneumonia.
There are SEVERAL types of Pneumonia, viral and infectious. Viral Pneumonia must be treated at hospital! My husband had requested TamiFlu for me (a drug known to stop virus from spreading) - they denied. Said "she's not a high risk patient". Before that illness I was a very healthy 35-year-old.
Second day, arrived at ER because I felt worse no antibiotic, no over the counter meds were helping and I was exhausted I could not sleep nor sit nor walk nothing. Had horrible body ache pain all over, loose stools, super high fever and they said "you have Pneumonia, go home"! They pretty much sent me to my death!
An adequette doctor would've looked at my symptoms and would've said "let us do a blood sample to check if you have H1N1 since it's spreading all around, let us do more advanced tests on you, we'd like to keep you for an observation". But that NEVER happenned! They said "you are fine, go home with 102.6 fever + Pneumonia"
My Pneumonia which was sever turned into ARDS and at that time I was in vegetative state. My husband dragged me into 3rd ER on wheel chair I could not even walk anymore. At that 3rd ER they just looked at me and sent me straight into ICU! Immediatly they were running advanced test for H1N1 and noticed that I was short on breath and could not say long sentences. I had to push the words out of me.
Next thing I know I have 4 nurses leaning against me, making me swallow a feeding tube through my nose! Woke up 2+ months later! Spent 54 days in ICU! None of this could've happenned only if hospital #1 would've looked at my symptoms more seriously. If they would've kept me for an observation or if they would've given me TamiFlu, my virus wouldn't be at such advanced stages as it gotten to.
I was on Roto-Prone bed, doctors were fighting for my life. I had 8 nurses attend to me at all times to change IV's and things because I could not tolerate laying on my back anymore. I was on FULL life support! ARDS alone has 60% fatality rate, H1N1 has 50% fatality rate as well. I only pulled through because of people's prayers. My 6-year-old son at the time asked kids in his school to pray for his mommy. When I woke up from coma and asked to look in the mirror, my right eye was looking right way, and my left eye was looking to the left. I was in panic, crying, my vision was double, I could not see faces nor objects. Everything was blurry because when I was on Roto-Prone bed I suffered very bad case of Edema (very bad face swelling) my eyes poped out of my eye orbits and my mother told me she was even scared to look at me, my tongue was sticking out like a bottle stuck into my mouth.
I am still taking physical theraphy and now have to take meds for my heart because with all those antibiotics and them saving my life, my heart had a huge stress and now I have heart issues and lost my good eye sight forever! All that because people (medical personnel) that we'd think we'd trust with our lives were neglegent at hospital #1 and failed to diagnose me correctly first TWO times!
Again Linka, I'm very very sorry this had to happen to you.
H1N1 was not diagnosed by a blood test--it was a PCR that was done from a nasopharyngeal swab (or off a bronchoalveolar lavage). Secondly, from our experience using oseltamavir (the neuraminidase inhibitor called Tamiflu) while it did show some evidence in preventing the acquisition of H1N1 in people who were exposed BEFORE they had symptoms, it was shown to have no effect on people who would have developed ARDS anyway. In people who had H1N1, oseltamavir only worked if it was taken within 48h (MAYBE 72 if you stretch it) of initial symptoms.
ARDS--acute respiratory distress syndrome--is 1% the pathogen and 99% one's immune system. Almost anyone who has a severe bacterial pneumonia will get ARDS; however, it's MUCH more difficult to predict with viral pneumonias. Even a person with a high fever, oxygen saturation of <95% and feeling like crap (i.e. signs of a bad viral pneumonia) can recover completely from influenza pneumonitis without developing ARDS. ARDS happens when one's cellular immune system, in response to a viral pathogen, begins to secrete pro-inflammatory cytokines (Il-1, IL-2, IL-6, IL-12, IFN-gamma and TNF-alpha) in a cascade which can eventually get TOO big. This results in leakiness of the pulmonary vasculature and it leads to ARDS.
There are several types of pneumonia, you are correct. Non-infectious pneumonias are generally called pneumonitis and they can be from things like drugs (methotrexate, certain other chemotherapy), radiation, inhalation of organic/inorganic dusts etc. As far as infectious pneumonias go bacterial and viral causes top the list. There are certain fungal and parasitic pneumonias as well, but these are relatively rare.
Viral pneumonias are actually rarely treated in hospital mostly because the tend to be relatively mild. Physicians and doctors alike were using Tamiflu and Relenza as a crutch against H1N1, but in reality, the two drugs didn't do anything except for in very mild cases. This is likely because of the mechanism of action of Tamiflu--it's only effective in VERY early disease. HOWEVER, your case was obviously different as you sounded like you were EXTREMELY sick when you came in the first time (let alone the second and third. Admitting for observation the first time would have been good from supportive point of view (i.e. IV fluids etc). The thing I'm telling you that's was so scary about H1N1 is that, EVEN if they had given you Tamiflu that first visit to the ER, it wouldn't have made a difference to you developing ARDS! The tamiflu can stop viral release, but it does nothing for the pro-inflammatory immune system storm which was already happening in your body! THAT was what had the medical community feeling so helpless. You could see a really really sick patient, do the proper test and diagnose H1N1, give them oseltamavir and they would STILL get ARDS!
We noticed that this immune storm was happening in children 0-5 years of age, young females (usually about 30-40 years of age) and the immunosuppressed. Weird enough, elderly people who got pandemic H1N1 didn't really get sick at all!
After a week of working the thick of the outbreak, I myself got H1N1 proven by a nasopharyngeal swab. I was lucky though because I only had a sore throat for a few days and was then fine.
Linka, out of curiosity, prior to getting sick, did you work around children? How has your health been since you were released from the ICU?
To answer your question Harka, yes I have a child. My child however never had H1N1 nor was he diagnosed with it. I started having soar throat when I went to local Wal-Mart and a woman walking in my direction was coughing without covering her mouth. I pulled out my sweater over my nose to prvent me from inhaling those germs but I guess it didn't help. Almost immideatly after wal-mart encounter I've developed cold like symptoms which in 2-3 days turned out for the worse.
You sound like a medical professional. Curious what's your background?
My husband got violently ill after I was already admitted into ICU but my doctor right away prescribed him TamiFlu. After only ONE week on TamiFlu and staying at home, my husband made full recovery. Again if my symptoms were diagnosed on time and correctly, I wouldn't have gone through what I went through. My Raspiratory doctor in ICU told my family that the virus was in VERY advanced stages and did a lot of damage to my body and that if I had been treated ealier, my outcome would've been very different.
After this ordeal I look at life from totally different perspective.
How has your health been since you were released from the ICU?
My health was horrible. If one can call it "well being". I don't know if it was because of meds I was injected with or from my anxiety, I was crying non stop.
When I first woke up from coma, I saw this dark pitch room, an air noise and a monitor beeping. I touched my face/neck area with my hand and felt a tube stuck into my throat. I could not move like I was paralized from waist down. Of course I wasn't but could not move my body. A nurse walked into my room, she was saying something I could hardly understand. She told me what day it was.. (it was mid December) and last thing I remember was October 23rd..I started thinking about my son where is he, where's my family, my husband. I could not talk! I was in panic. I tried writing something on board for the nurse but she was laughing at my face saying "I don't know what you are saying" and simply walked away. I was crying because I felt helpless without any help. When I finally found on my bed a call button for nurse and pushed it, she came in one other time, again I was trying writing on board with a marker, again she said "I can't read it" walked away. Next time when I pushed the call button, she walked in with an injection. Injected something into my IV and told me "it's time for you to go to sleep" - that's how she dealt with me.
After waking up from coma, when I could communicate a bit by using a board, I asked for a mirror. They gave me a mirror and I looked at it and saw my left eye looking to the left and my right eye was looking to the right. My eyes were NOT aligned even tho I was trying to look straight. I could not sit up, had to be suppoted by 4 or 6 pillows from sides and back. I could not move by myself when they had to change bed sheets. Had people come in and roll me to sides every time. That was embarassing having strangers every time in my room rolling my body looking at my naked butt or washing my body.
At nights, it was quiet on floor, only beeping monitors and someone was moaning down the hall. All around me were elderly people in ages 60's and up. I was the only young female on the floor.
My physical theraphy started in hospital by learning how to walk! Who could've thought that after 2 months laying in ICU your muscles become weak and you can't walk. I felt like an elderly person in a nursing home. It was first hand experience. I could not talk, could just communicate with a marker on portable small board trying to write things. It was very hard to write because my hand was shacking uncontrolably. It was shaking so bad for so long that when I started taking solid foods/self feeding (after they removed my nose tube) I spilled juice on myself several times because of hand shaking.
I was released from a hospital with a walker and was wheeled out on wheel chair. When my husband was pushing my wheel chair down the cooridor, every nuse came out and everyone was applauding me and hugging me! They said "You are a Christmas Mircale". There was one time doctors told my family "she might not be here tomorrow, we did everything we could".
When I woke up from coma, everything was very blurry, I could not see faces nor objects even up close. I had to wait for a week before I could see faces a bit and objects but only very very close to me and only if I had to focus very hard. My vision never improved!
After the hospital saw 2 eye doctors. One was Cornea specialist who said "looks like someone took a sand paper and scratched your corneas". My only options were : 1) Cornea trnasplant from a donor aka diceased person 2) to wear contact lenses. I am now FORCED to wear contact lenses if I need to drive or to read. My eyes burn every time I wear them but I have to learn to live with it.
My second ordeal was to learn how to walk and injury I sustained while on coma. They had to transport me to another hospital to wean me off the vent machine and coma I guess while that transportation move somehow I got a thorn ligament in my knee. My knee was sticking out 90 degrees when I was able to walk. Had to order a custom knee brace and undergo 2+ months of physical theraphy after hospital.
Also after hospital, saw my physician who spotted that I had a heart problem. Had to see a cardiologist and had a stress test done. My heart is still having problems and I have to take meds for my heart. If my heart will not improve after meds, I'd need to see another specialist. I also have to see my eye doctor now every 6 months and I don't have an insurance that covers an eye doctor. Plus who knows how many more doctors I'd need to see. Right now I still have episodes of shortness of breath and difficulty breathing and have to use an inhalor several times a week!
I will never be the same healthy 35-year-old I was 10 months ago.
The following user gives a hug of support to linka: Floress (10-06-2011)
Our 16 year old son was not hospitalized, but the basic story holds true. It is nearly impossible to find survivors of H1n1 who have done very well in recovery. Our prior to h1n1 16 year old totally athletic son has basically become a hermit since H1n1. We have been to like 9 docs to figure out wy he still has flu like symptoms (low grade fever, body aches, unbelievable fatigue, and sleep issues). It is so depressing to see this as a parent. He can not right now even walk around the block. This is what his counselor asked him to do. He is to mow the yard tomorrow (they are all saying to encourage small bouts of exercise and we have very little yard to mow) . .. but you know what he said tonight? Wake me up very early so I will be able to drink some coffee and get some energy to mow the lawn. In spite of not being depressed according to the docs and the counselor, he sleeps 14 to 18 hours per day (averaging 16 hours per day). We have him on a homebound school program. And in spite of it all our family members just think we are not "tough enough" parents .... that we have allowed HIM as a 16 year old to be in charge. It is just heartbreaking. I know how terrible I feel with a low grade fever and severe exhaustion (I have fibromyalgia from a tractor trailer accident) and no one else relates. The rest of the world seems to thinik we are crazy. I do hope your loved one is doing better and if you find out any sort of other diagnosis or treatment let us know. Now we are learning why they call medicine a PRACTICE. This is why we have not had answers. Oh my prayers are with you, your loved one, and our family too. It's heartbreaking and I am so glad I found your post (-:
Originally Posted by kbowyer24
MY BEST FRIEND'S HUSBAND 33, WHICH IS PERFECTLY HEALTHY,NEVER HAD ANY HEALTH PROBLEMS, STARTED HAVING BODY ACHES ON FRIDAY, NOVEMBER 13TH, BY SUNDAY HE WAS SO SICK WITH A FEVER, BODY ACHES, AND HEADACHE HE COULDN'T GET OUT OF BED. hE WENT TO THE DR. MONDAY THE 16TH. ONLY CHECKED WITH A STETHOSCOPE! TOLD HIM HE HAD THE FLU AND WAS STARTING TO GET PNEUMONIA. SO PUT HIM ON ANTIBIOTICS. BY WEDNESDAY THE 18TH HE WAS WORSE MY FRIEND CALLED THE DR. AND TOLD THEM BUT THEY SAID ANTIBIOTICS TAKE A WHILE TO START WORKING. THURSDAY GOES TO ER HE IS SO BAD THEY END UP PUTTING HIM IN ICU BECAUSE HE HAS PNEUMONIA IN 4 OUT OF 5 LOBES AND BY FRIDAY HE IS ON RESPIRATOR. THEY HAD TO LIFE FLIGHT HIM TO WEST PENN EARLY SATURDAY MORNING. HE WAS ON 100% OXYGEN. BUT TO TRY TO MAKE THIS A LITTLE SHORTER. THEY TESTED HIM FOR H1N1 IT CAME BACK POSITIVE. IT HAS NOW TURNED INTO ARDS. THERE HAS BEEN SO MANY UPS AND DOWNS THROUGH THIS. TODAY IS DECEMBER 18TH AND HE IS STILL ON 75% OXYGEN, FINALLY JUST NOW STARTING TO SHOW IMPROVEMENT. THE XRAYS OF HIS LUNGS ARE STILL VERY CLOUDY, HOPING ITS NOT TURNING INTO SCAR TISSUE. BUT WE THINK HE IS GOING TO PULL THROUGH. THE DR'S CAN'T EVEN GIVE US A TIME FRAME BECAUSE ITS NEW TO THEM ALSO. THEY SAID DON'T EVEN EXPECT HIM HOME FOR EASTER. i WAS WONDERING IF ANYONE ELSE KNOWS ANYTHING ABOUT THIS, OR KNOWS ANYONE THAT HAS HAD A CASE LIKE THIS. I HAVE DONE SO MUCH RESEARCH BUT AM HAVING A REALLY HARD TIME FINDING OTHER CASES LIKE THIS.
THIS FLU IS ABSOLUTELY CRAZY ESPECIALLY IN A VERY ACTIVE AND HEALTHY PERSON.
In 2009 when there was an epidemic somehow I got H1N1. At first I thought it was a regular cold. I took over the counter drugs Tylenol, Iboprofen but those drugs ones that would usually help me did not that time. Then I've noticed that my fever won't come down at all despite what I did.
I went to my local physician who did a swab nose test (which btw is horribly inaccurate) and should not be even performed. The test comes back negative. Physician puts me on an antibiotic just for safety. A day later not only that antibiotic had no effect on me what so ever but my fever was sky rocketing.
My husband drove me to hospital's A ER they did tests, sent me home. Next morning my fever was 102.8 went to the same ER at that time they did swab test came back negative again but x-ray showed I was having Pneumonia. So that stupid young resident doctor despite of my complains of high fever for 5 days now and unable to take fever down with Pneumonia now she sends me home! She said in her report "Recovering" they gave me a huge dose of fever reducer (hospital's strength) and she thought I was recovering....
The SAME day I was in vegetative state at home. Unable even to make trips to bathroom. Sitting there like a zombie in heat not caring for anything pretty much ready to die. My husband drives me to 3rd ER to SECOND hospital in 2 days there when I arrive, they take my vitals and send me straight into ICU.
They immediately called Infection Specialist who did some study on me and test and then nurses wearing space suits started coming into my room. I remember laying in bed in ICU and mumbling to my husband "I don't think I am going to make it" at that time I could only speak short sentences/words.
They put me on ventelator and had to pump settings to 100% oxygen at that time I had full blown ARDS. I required Roto-prone bed and spent 2.5 weeks on my tummy. Because of that I had severe Edema to face and my eyes came out of their orbits. I looked like out of horror movie. My eyes won't even close (I was in medically induced coma at that time) with trech stuck in my throat. So my eyes dryed up despite nurses using eye drops on me and I've lost more than 60% of my vision.
I've spent 48 days in ICU, 28 days in hospital recovering, 60 days in rehabilitation! I survived yes. I did develop heart complications and have very bad Asthma now. It's been 2 years almost since I got sick. They applauded me in hospital when my husband was wheeling my wheele chair out with me. I remember arriving home and not able to make simple steps from garage to kitchen area. I had to be carried from sofa to bed, I had to be carried by 2 people to take a shower. I am fortunate to have good relatives who took care of me around the clock but I am mad at that first hospital's ER for unable to correctly diagnose my sickness who refused to give me Tamiflu drug that's known to stop virus from spreading. The ER that sent me home with Pneumonia despite my cough with blood and x-ray showing pneumonia.
Two years after my illness I am still weak, in pain every day, forced to take meds for heart and Asthma meds.