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Old 06-05-2010, 10:08 AM   #1
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Join Date: Jun 2010
Posts: 2
Jamaica2000 HB User
H1N1 Survivors and aftereffects

Hi,

I had H1N1 in October that went into pneumonia, and I have been very sick ever since.
Symptoms include cycles of low grade temps(daily), swollen cervical lymph nodes, a sticky phlegm in my throat that progresses to coughing up green phlegm for a few days, extreme fatigue, etc.

These symptoms are almost always present with brief reprieves for a few days here and there.

I've had multiple courses of oral and IV antibiotics.

I had sinus surgery in April as recommended by 3 doctors to alleviate any drainage issues in hopes this would help.
Unfortunately I had massive inflammation after surgery and now have MRSA sinusitis that so far isn't responding to antibiotics.

I'm being followed at a large medical center by infectious disease and immunology. So far they can't find what's wrong. They say that clearly I'm very sick but on paper they can't find what's wrong. Sometimes I have elevated WBCs and sometimes not.

They all agree that there is something wrong, likely immunological, but can't find it. I've had numerous tests. I'm allergic to the pneumococcal vaccine so it's hard to determine subclass immune deficiency. And they don't want to do any other vaccine challenges until I'm well.

But I'm frustrated in that I don't know if I'll get well! I've been sick for 9 months now with no end in sight. Now I have MRSA on top of it, not healing from sinus surgery, and no one can find an answer. Some doctors have told me that there may never be one and I may have to live this way.

I have 2 young kids, so this isn't an option!!

Has anyone experienced immune issues after H1N1? I've never been this sick in my life and for it to persist this long is just scary.

Thanks for any help. I'm almost ready to write the Mayo or Cleveland Clinics but I don't know what they can offer me that hasn't been done. This has been debilitating and very depressing for me and my family. It's just no way to live.

 
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Old 07-20-2010, 10:20 AM   #2
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Join Date: Jul 2010
Posts: 22
linka HB User
Re: H1N1 Survivors and aftereffects

On October 19th of 2009 I had some mild soar throat. My son was sick with flu like symptom and I was running around town's pharmacies getting his meds. Later same evening I developed high fever it was about 99.7. I thought I had a regular cold/flu. So I started taking Tylenol Flu/cold sinus over the counter medicine but my fever would NOT go down at all. That was not normal to me. On the 20th I've developed deep cough and was coughing up some bloody mucous. That wasn't normal at all. So on the 20th later the day I went to see my family doctor.

Upon arriving I had high fever, chills, deep cough and didn't look too good. He ordered for me to get a swab test done. The test was performed and came back negative. He prescribed an antibiotic. I went and filled his prescription right away. Started taking....no effect. Temperature was going up.

Suddenly while watching TV with my husband I had a diariha. I rushed to the bathroom, came out and suddenly felt like I was going to faint. I yelled out my husband's name and collapsed in hallway. He called 911. 911 did not answer right away. A minute later they called back but my husband said he'd take me to ER by himself since nearest hospital is only 5 minutes drive from us. When I gained counciousness, I could barely say 2 words together. I was very very weak. My husband drove to nearest hospital's ER, there a doctor on duty ordered an x-ray, I refused to do the swab test because in my physician's office when they did it, they made my nose bleed. The x-ray was negative for Pneumonia, they sent me home. Dispite my high fever for 4+ days, sudden passing out and sudden loose stools.

I came home, did not sleep all night because fever was not going down at all! Early on 23rd of October my husband drove me back to the ER. Again they did a chest x-ray, did a swab test this time. X-ray came back positive for Pneumonia. I told a nurse about my cough with blood, she replied "because you cought so much, your throat got irritated and you have blood". The doctor on duty said continue to take the antibiotic that your doctor had originally prescribed and go home!

For the second time I was discharged from the hospital's ER. Came home, again could not sleep, early on 24th of October was in vegetatvie state already with temperature of 102.8 at 7 a.m. Nothing was helping nor working.
Called my mother, she said go to another hospital's ER.

For the 3rd time my husband drove me for my 3rd ER visit. At that hospital they admitted me right away said my condition was very critical next thing I remember 4 nurses leaning over me, making me swallow a feeding tube through my nose. Upon arriving I was diagnonsed with severe ARDS + H1N1 (apprently that hospital did some advanced tests that proved I had H1N1).

I woke up 2 months later from medically induced coma, spent 2 months on 100% oxygen support and had spent 15 days on Roto-Prone bed. That hospital saved my life. Gradually when I started being more alert and better started doing physical theraphy!

Who could've thought that if you lay 2+months in bed, your muscles become weak and give up on you. I had to start learning how to walk again! I was released from a hospital with a walker, altho I could not walk even short distances without taking a break. I had to rely for 2 months on my family to help me around the house. I even needed help to go potty. Like my husband had to lift me up from the toilet because I could not get up on my own. I had difficulty stepping into shower and holding my balance had to have someone to lean on.

I was crying when I was using a shower. We don't realize what a great thing it is. Not having a shower in hospital for 2+ months other than sponge baths done in bed by techs is not same as taking a shower on your own.

Because I spent so much time in coma on Roto-prone bed, I suffered edema (all face was super swallen and eyes poped out of my eye orbits) because of my swallen face and eyes, I've suffered more than 50% eye sight loss. But I'd rather not have 50% eye sight than being dead.

They called me in hospital a "christmas miracle". Doctors have told me they really thought I wasn't going to pull through it.

God put me back on Earth for some reason. I am greatful to all people who prayed for me over the course of my illness. So now I can spend time with my 7-year-old son.

You never know what and when can hit you. I was stay at home mom, washed my hands religiously and still got the flu.

 
Old 01-23-2011, 11:10 AM   #3
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Join Date: Jan 2011
Location: Uniontown, Pa
Posts: 2
jkyjty HB User
Re: H1N1 Survivors and aftereffects

Quote:
Originally Posted by Jamaica2000 View Post
Hi,

I had H1N1 in October that went into pneumonia, and I have been very sick ever since.
Symptoms include cycles of low grade temps(daily), swollen cervical lymph nodes, a sticky phlegm in my throat that progresses to coughing up green phlegm for a few days, extreme fatigue, etc.

These symptoms are almost always present with brief reprieves for a few days here and there.

I've had multiple courses of oral and IV antibiotics.

I had sinus surgery in April as recommended by 3 doctors to alleviate any drainage issues in hopes this would help.
Unfortunately I had massive inflammation after surgery and now have MRSA sinusitis that so far isn't responding to antibiotics.

I'm being followed at a large medical center by infectious disease and immunology. So far they can't find what's wrong. They say that clearly I'm very sick but on paper they can't find what's wrong. Sometimes I have elevated WBCs and sometimes not.

They all agree that there is something wrong, likely immunological, but can't find it. I've had numerous tests. I'm allergic to the pneumococcal vaccine so it's hard to determine subclass immune deficiency. And they don't want to do any other vaccine challenges until I'm well.

But I'm frustrated in that I don't know if I'll get well! I've been sick for 9 months now with no end in sight. Now I have MRSA on top of it, not healing from sinus surgery, and no one can find an answer. Some doctors have told me that there may never be one and I may have to live this way.

I have 2 young kids, so this isn't an option!!

Has anyone experienced immune issues after H1N1? I've never been this sick in my life and for it to persist this long is just scary.

Thanks for any help. I'm almost ready to write the Mayo or Cleveland Clinics but I don't know what they can offer me that hasn't been done. This has been debilitating and very depressing for me and my family. It's just no way to live.
I also contracted the H1N1 in november 2009, I was pregnant 27 weeks, the baby did not survive, but a year later I still am getting monthly illness of sinus congestion, chest congestion, runny, stuffy nose ect. What ever comes around I get it.

 
Old 02-24-2011, 11:37 AM   #4
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Join Date: Feb 2011
Location: Grand Rapids, Michigan
Posts: 1
ambergarrot HB User
Re: H1N1 Survivors and aftereffects

Hi my name is Amber. I am currently 19. Last year in february i had a fever for atleast two days. i ended up passing out at my moms boss house and by the time i got to the hospital i had a fever of 104.3.. While we were in the waiting room waiting for them to call us up for our information. I started seizing. I have never had any history of seizures before. It took them two days to find out i had the h1n1. i was hospitalized for a week. They used so many drugs to try and slow my body down. i was having multiple seizures a day. My speech was so slow... The doctors released me after a week and told me the seizures were a long term effect of the h1n1 and they sent me to a neurologist.. they neurologist found nothing.. although EEG's dont always show seizure activity. He said most of the time they wont even show if i was having a seizure.. it may take years to show seizure activity. so its been a year later and i am currently still having seizures.. i have fought with so many doctors.. they all say i have seizure activity. but they wont put me on seizure medication until they have a positive EEG. They wont fill out any forms for work even though i have them at work quite often and an ambulance is called. They sent me to a phsycologist. Who is now fighting my neurologist to put me on siezure medication. He says that i do have seizures and that he will prescribe them himself if he has too.. why is it such a big deal to get put on seizure medications.. a year later and i am still struggeling and fighting this.. has anyone else experienced anything like this?

 
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