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ventilator weaning-my personal experience on a life support machine

Updated on July 5, 2011

Why I was on a ventilator

This is my personal account of my life on a ventilator. At the age of 49 I had not had any serious illness or cause to be hospitalized and then it happened. I thought that I had a cold which very soon seemed to develop into flu. Within four days my condition deteriorated rapidly. I was rushed to hospital and x-rayed. I am quite a strong willed person and can take most things on the chin. I asked the doctor was it lung cancer to which she answered "yes probably".

At this point my family were very distressed and I tried to re-assure them. It was a couple of hours later that I was diagnosed with pneumonia

Mechanical Ventilation-Life support

I was moved to the high dependancy ward. I had been suffering with severe pain in my ears and the strangest thing I kept hearing my favourite Russel Watson CD. It was so clear I kept asking where the radio was. Of course there was no radio. It turned out that as well as pneumonia I had pneumo cochineal in my ears.

My family (husband,daughter and son) were by now so worried,whilst I remained calm (that was probably because by now my temperature was so high and the pain so bad I was past caring). It really hurt me so much to see the family suffering. I remember the doctor coming to see me to tell me they were going to have to put me on a ventilation machine/life support machine.

I said I did not want the family to be there when this happened because I knew they would be upset and told them to go ahead. I did not know at this point that the family had requested to be present. I didn't want them there because I felt I would be saying goodbye and it was my intention to survive. A nurse came to me and said the family were really upset and asked me to see them before they put me on the ventilator so I agreed. It was awful I could tell they had been crying and were trying to hide it from me.

Can you hear people when on a mechanical ventilator

I was on the life support machine for 2 weeks. My family tell me that there was someone there with me all the time talking to me but I heard nothing.I did have the most weard dreams (but thats another story)  I have written another hub about these dreams  the link is here.

It turns out that I was diagnosed with pneumonia,pneumo cochineal in ears septicemia,mrsa and ARDS All this four weeks before christmas. The family were called in by the doctors three times and told to prepare for the worst. apparantely my daughter was offered counselling because she kept saying "my mum won't do this, she won't die on me before Xmas".

Ventilator Weaning

Apparently the problems the doctors were having was weaning me off the ventilator.To the shock of the medical staff I suddenly woke up. I was totally unaware of what had been happening and how ill I had been. I couldn't understand what all the fuss was about and why they would't let me get up.

I have vague memories of the first few days off the ventilation machine. but I was in a confused state.Because I could not distinguish between day and night the nurses asked the family what did I do at night. I liked to have a drambuie before I went to bed so they asked my husban to bring some in. (strange I always thought you should not drink when taking medication). I remember the first time the nurse offered me the drink and I tasted it, it tasted awful and has since put me off drambuie.

I also had really strange dreams again through this period.After a couple of days I became a bit more lucid and they got me out of bed and moving a little. I kept asking to go home and I remember the physio's coming to take me for a walk and they said if I could walk up some stairs unaided I would be able to go home. You can be when we got to those stairs I made it up and dow. 

Coming home from hospital

I was discharged from hospital 7 days after being weaned off the ventilator.I hadn't looked in a mirror all the time I was in hospital,( I have a large mirror on the wall as you enter through the front door) As I walked in I looked behind to see who the old lady was following me in shock Horror when I realised it was me. I had aged and lost so much weight I coulldn't believe it. I broke down and cried.

The good news is I am still here to tell the tale. 


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      ann 2 years ago

      I will leave a comment when my husband wakes he was taken off sedation yesterday on his ventilator he has flu hes diabetic no brain injurys not brain dead just not come round yet. i am pretty confused at the minute he looks like hes trying to wake 7th march 2016

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      Dora 2 years ago

      my Mom was put on life support for pneumonia and she came off the vent in 2010 . But unfortunately we lost her March 2014 she was only on the life support for 5 days when my siblings decided that she should be removed from the support I wanted to have her put on a tracheotomy but my siblings didn't she lost her battle with life and on that day I lost respect for my siblings I haven't talked much to them sense she had been in and out of the hospital these last few years of her life I was right there at her bedside they were not they hadn't heard her telling me whatever it takes I WANT to live ! Now I live with that pain everyday I wasn't there when her life support wAs removed because that's not what I had wanted now I have to live with that fact everyday . Life is a one time shot go with your instinct override all if you need to Don't hold back I wished I had for her sake and my heart as well I still to this day hurt for her and myself . I wish all of you the very best , prayer is strong believe ,God help you all .

    • profile image

      KyungJin 2 years ago

      Kevin You have been a close friend to my son, Steven Kestel, for many years. I wanetd to thank you for being his friend because I know and have always known what a blessing your friendship has been for Steven. I haven't prayed in many years, but I am praying now every day for your healing and comfort. You obviously are loved by many and truly have many, many friends which to me defines a man's true character! I'm sorry this missed Thanksgiving, but really it's never too late to say, Thank You for fighting the fight and staying with us here in this realm. Your family and friends obviously love you very much and you them!Warmly,Donna Kestel (Steve's mom a blessing for me)

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      Johnb807 3 years ago

      I like this post, enjoyed this one regards for posting. He removes the greatest ornament of friendship, who takes away from it respect. by Cicero. gbkeeedgcbge

    • profile image

      Dee-Dee 3 years ago

      My kids grandmother had lung cancer. She was found unresponsive in her room at the nursing home she was staying in. She was rushed to the hospital. She was having a very difficult time breathing, and we found out she had pneumonia, and a collapsed lung. He blood pressure was really high also. The family was told she wasn't going to make it, and they took her off the ventilator. What I would like to know is, do you think she had a chance of recovering, if they had waited longer?

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      Janice 3 years ago

      My 81 year old mom had a heart attack 2 wks ago. Stent was put in her arteries clogged. Now in ICU for 2 weeks. Been on ventilator for 2 weeks. What is our options now

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      Ronie 4 years ago

      My sister is on life support right now for the 3rd time in her 40 year life. She had leukemia at age 2 and had several relapses. My only sister i love her so much and hurt so much to see how much she has suffered her entire life. She had a lot of rejection from people in this ugly world because she lost her hair and has the moon face. Kids were mean to her and adults would laugh at her. This world has been so cruel to my poor sister. In new years 2007 she suffered a massive stroke and ended up fully paralyzed she developed an aneurism in her left side the size of a tennis ball she had it removed and was at UCLA for 2 years then transferred to a different hospital after for another year. She was moved to a nursing home for 2 years and now here we are again she is fighting for her life. Her heart stopped and she was shocked to resuscitate her. She has sepsis, MRSA, blood sugar in the high 1000's that they are trying to bring down. high wbc count on today will will see if she can breath alone they can only have her on the ventilator for 14 day the dr's have told us. If not this will be the end for my sister's life. I need prayers and help only a miracle can help here. I would not want my sister to be a complete vegetable. She has eaten from a g-tube for the past 3 years. Please pray for her

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      Susan 5 years ago

      my 24 year old son has fatal melanoma brain cancer which has now caused him to be put on a ventilator. He does not want to die in a hospital and we need a ventilator in order to bring him home until it is time for him to go meet God. Where do we get one?

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      sonia 5 years ago

      My niece went into the hospital due to to much blood uria then they found she have pneumonia, couldn,t breath they put her on ventilartor, her kidneys are getting worse they purr her on dialysis everyday she is unconcious day 15 today. Her b/p drops occasionally or too high. Entire family stressed out will she survive please pray for her she is 18 years old. We all love her so much will do anything to save her help!

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      Ashley 6 years ago

      My grandma is on life support with liver failure and if she is still unresponsive by tomorrow they will be unplugging the life support do y'all think there's any chance she might make it?

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      Eric 6 years ago

      My Dad is eighty five and this is about the seventh time this year he has been in the hospital. He was admitted last thursday morning. He has pneumonia in both his lungs and suffered heart failure yesterday. They put him on a ventilator yesterday. I will be going to see him today and I am trying to prepare myself for it. He also had only thirty percent renal function before all of this and is a diabetic. I can only wonder if this is it for him or if there may be a chance he could pull through this.

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      Lisa 6 years ago

      My dad is in ICU with pneumonia, he has been there on the vent for 10 days now. We were told on the 1st night that he would be lucky to make it, thankfully he did.

      His infection is clearing and he is also now of dyalsis machine too. He is sedated, abd on the vent. When they let sedation ware off he becomes very agitated. They do say he is doing most of the breathing himself and the vent is on very low. I asked today if 10 days was a long time, they said it wasn't.

      I send best wishes to all of the above families and loved ones. Hope everyone is ok

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      s collins 6 years ago

      my friend is on life Support and she sometimes opens her eyes when i talk to her Do you think she is going to wake up

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      Eleanor Washingto 6 years ago

      What a fantastic story thank you for sharing it x

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      Lorraine 6 years ago

      1-28-07 I found my son in a diabetic coma. We did not know he was diabetic. The Dr. thinks a virus he had several months earlier caused this. He was life flighted to a teaching hospital downtown Houston. Never - Never go to a teaching hospital - they practice on you. He was on life support for a month. He was weaned off of life support for one day. His father was feeding him his first meal and he aspirated and had to be put back on life support. His lungs collapsed - they had to put in chest tubes. Then his heart stopped for 23 minutes. The Dr. told us he would probably be brain dead. His kidney's failed and he was put on dialysis. We brought a reflexologist in to work on him. He was taken off dialysis after two weeks.

      He was moved to a L.T.E.C Hospital still on life support. After 3 1/2 months on life support he was finally weaned off. He could only eat soft foods, could not drink water or he would aspirate. He had a tube feed in for that. After five months in the hospitals, we finally got to take our baby boy home at the age of 20. He had to learn to walk again, talk again. Then he went blind. After three major eye surgeries, they implanted a lens in his right eye. He is still blind in his left eye.

      Today he has diabetes and is legally blind. He graduated a Major university in August and is now in the Masters Program.


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      paulettediann 6 years ago

      They keep telling my friend he won't get weened off. Medicare pays for 100 days then they zap everything you own til you die. I finally met up with this friend after 51 years & now, after 10 months he'll be taken away? He's been on ventilator since Feb 3rd. Are there alternatives to these places they stick you for pallative care? What can I do to help. Do most people just succum & what should they be doing to help him?

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      Eleanor Washingto 6 years ago

      That happened to me and also I thought the doctors were trying to kill me. After several attempts they succeeded to wean me off. My thoughts are with you x

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      Chel77 6 years ago

      My dad has been on ventilation for 2 weeks now. His aorta in his heart tore and the bleed went into his lungs. They thought it was pneomonia at first til he had a scan and they rushed him in for surgery. It's been awful. They're having trouble weaning him off ventilation and sedation. He now has a trachy and the breathing machine is attached to that rather than the tube in his mouth but when they take him off sedation he gets very agitated and starts thrashing his limbs around. I'm worried he has neurological problems? Trouble is docs can't assess him fully until his off sedation! Keep him in your thoughts plse and my thoughts are with anyone whose having a rough time right now :(

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      Eleanor Washingto 6 years ago

      Sarah I am so sorry I am not medically qualified to be able to help you. I can only say the doctors told my family that I wouldn't wake but I did and I don't know how. My thoughts are with you

      To Peter who e-mailed me I hope your situation with you nephew has improved. Just being with the family will help them

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      Sarah 6 years ago

      My dad is 62 years old and is in icu after having a stroke 4 weeks ago, then causing siezures. The docs was unable to control them and is now unconscious on a ventilator. They are telling us that he may not wake up and they will have no choice but to not medicate him I.e no dialysis ( as he also has kidney damage) so he will eventually die of kidney failure.

      Can they do this? I feel helpless and want to know how we can

      help to wake them. I feel like they are giving up on him and I don't want them to.

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      roblinska 6 years ago

      Thanks for your comments, my husband is currently on the vent for 2 weeks and they can't wean him off. His vent setting are so high now that he shakes, it looks like he is really labored breathing. We are very worried. Any prayers will be grateful. All your comments helped me and gave me hope.

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      linda bodkin 6 years ago

      iam glad that my husband wasn,t the only one that was vented he had copd he had very bad lungs and dibetes kidney problems he had been vented 3 times in the last 2 years and in the hospitial 8 times but just recently the lord took him home i just don,t know how to meand a broken heart but don.t give up keep taiking to your loved one and be very brave i know its scary but it well be ok god bless

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      blanca martinez 6 years ago

      My mom is 88 and although she had a stroke several years ago overall was in good helth. However she got a uti and I took her to the hospital and they suggested I send her to long care facility to feed her antibiotics through an IV, which I agreed to. However, several weeks later they put a roommate in her room with c.diff. an infection of sorts in the colon and can be very deadly and soon thereafter she also got the discease. We're not sure how she got it but it's pretty obvious. The same day they discharged her from the long care facility (they did not know she had gotten the discease)she was re-admitted to the hospital and they had to vent her. This was about 3 months ago and she's still on the vent. They have tried unsuccessfully to wean her. She also got brain damage due to low blood pressure when she was admitted. However, she does have some responses, tracking, foot movements, recognition. Currently they started weaning her again about 4 days ago and so far she's tolerating it well. We put her in the Lord's hands and we do beleive in healing and God's supernatural workings. They allow me to feed her fresh vegetable juices which I feel have helped her greatly particularly with her kidneys. They told me that they were going to discharge her to a facility where they would accept patients on vents but it was mopre than an hour away and we really want her to come home. I did some research and found she still had days on her medicare and convinced doctors to keep her at hospital and try to wean her. I also found a hospice that would accept her on the vent if necessary and approved by her doctor. Basically you have to have a plan in place to remove vent within a period of time if there is no progress. The hospice at hospital told me there was no way she could be on vent in hopsice and they knew very little about palliative care. I hope this helps someone, if they try to tell you something that just don't feel right follow your instinct and keep looking and asking God will lead you and guide you as you keep looking praying and walking in love. There's a reason why you're going through what you are going through and God will give you the strength and grace to walk through and help others along the way. Please let me know if anyone knows of anything else we can do naturally or otherwise to help my mom be weaned off vent. God bless

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      christina 6 years ago

      My boyfriend was hospitalized on Oct.10, 2011 with pneumonia didn't think much of it until i received a called from the hospital that things has taken a turn for the worst ! tubes down his nose & mouth & machines everywhere they didn't know what was wrong after the 2nd wk the finally found his diagnois LEGIONALE DISEASE batceria inside his lungs along with pneumonia 3 wks in the hospital he still hasn't waken up he was off all sedation medication but wouldn't wake finally within that same wk he started to come around but was in & out and was trying to speak with him doing all of this they finally decided it was time for him to go to a rehab facility he still remains tired tries to talk opens his eyes when name is called or if he hears noise his skin is dry and muscle are sore I AM PRAYING EVERYDAY THAT THE LORD HEALS HIM &MAKES HIM STRONG & RETURNS HIM HOME IN THE BEST OF HEALTH

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      Sandra 6 years ago

      April 2010 I transport my husdand to a hospital here in South Carolina to get some fliuds because he was having trouble with using his hands. His doctor told him to go to the hospital and get fliuds because his urine was dark. We had made plans to go to john hopkins to find out what was going on with his hands. On April 2011 We went into the ER the staff gave him the fliuds we was on our way out the door when the nurse stated that "wait I'm going to give him something to bring his blood pressure down" "I stated that he don't need anything to bring his blood pressure down he has taken his blood pressure meds. That nurse did not heard a word I said she give my husdand a shot and the shot stopped his heart they got him back to breathing put him on life support for a week tried to get me to sign papers to take him off. I refused to let them take him off. They threated me like i did not have any rights. After they could not convince me to let them take his life. They put him on a venlilator and want to put him in a nursing home I stated that he had a home to go to I took him home, now he has been on the vent for over a year and am working to get them to wean him off. The medical field is not what it is cut out to be, once they has got 200-300 hundred thousand out the patient they are ready to put you out the hospital so some one else can get that bed and make more money. They so quick to put people on those machines and quick to take your life and take you off. They put a feeding tube in make husband and the tube turned black I had to beg them to please change that tube. Do not listen to the lies that they feed yo about yor love one when they are in these hospital do your own research. Always do a check on the doctors because a lot time the student be taking care of your love one and they had very bad training. When you get a doctor that will not listen to you, you need to find another doctor that will listen. So many people are just being killed i them hosital everyboy in the medical field is not in there to help people they looking at their checks I know what I'm talking about because I work in the hospital every day. Someone always should be there with their love one because the hospital got the license to kill you.

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      brittany lanzo 6 years ago

      my mom came to the er yesterday and they had diagnosed her with pneumonia .. they freaking sent her home w antibiotics and vicodin .. this morning she woke up puking green & couldn't breathe at all . we called an ambulance and went back to the hospital . they finallly did a bunchhhhh of tests and admitted her into the ICU . shes been on oxygen all day but its not getting any better . they said if she doesn't startt breathing better soon that they're going to put her on life support .. what's it like ? will they put her to sleep ? ahhh im so scared .

    • profile image

      Eleanor Washingto 6 years ago

      I do appreciate all your comments and am sure they are helping other people. I am not qualified to give medical answers I can only talk about my experiences. I know that my family went through a traumatic time and we are still not completely over it we all still get emotional when discussing what happened. I am now a firm believer that it was not my time to go hence the reason I am still here. I have just recently lost my husband to cancer and am still in the grieving stage, It seems strange that I was spared only to loose him. I hope this Hub is of some comfort to those in need and that you all continue to add your experiences. Regards Eleanor

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      Concerned Girlfriend 6 years ago

      My BF's grandmother has been in the hospital for only about 3 weeks now and her conditon has deteriorated rather quickly. The first week we were hopeful and she had even been sent to rehab. While in rehab, she relapsed and found out she had CHF and severe lung troubles. While in ICU, her lungs collapsed, she coded and is now in CCU unresponsive and on a ventilator. I'm so afraid for my BF, his grandmother is his rock. I'm just really afraid for him.

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      robert 7 years ago

      Hi,my mom has been in the ICU unit for 11 weeks she cought H1n1 and 2 strains of Pneumonia the doctors are saying there is no hope for her anxiety or venting off the machine,please help if you can.

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      Kim 7 years ago

      My husband and the love of my life was just weaned off of a vent. He is 48 years old!! He has an ear infection which travelled into his lungs and developed into severe vial pheumonia. He could not breathe and the doctors put him on a vent. I am 45 years old and have 4 children with this man and was told that he may not survive the next 72 hours. Miraculously, he did. He too had a hard time weaning from the vent. He spent 19 days in the hospital and is now home receiving physical therpay to relearn how to use his limbs. We were told that what happened to him was a 1 in 10 million chance. We feel blessed that we still have him with us. Goodluck!!

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      Shannon 7 years ago

      My dad is a hard head.... never wants to ask for help. With this said, he had been sick off & on with some colds, treated with antibiotics. He is diabetic, problems with blood pressure, takes meds for high bp, morbidly obese and has issues with tachycardia (racing heart) but only a few times. He was diagnosed with severe pneumonia & has been on a vent for 6 days (since Feb. 11, 2011). The docs & resp. have tried to wean him a few times now, with no success. He is 66 years old. He is now tolerating liquid nurishment, at first he was not. I am the one who took my father to the hospital when I checked on him and realized how sick he was. He never wanted tubes and such down his throat. I did what I had to do to help him. Never in a million years did I think he would be vented, I thought I was taking him to the hospital with some diabetes complications (his feet were swollen terribly, I figured he was having some problems retaining fluids, as he also wasn't urinating enough) and to address his overall lousy feeling. He had also fallen a few times and ripped the toenail off of his great toe, so I wanted to make sure to have that taken care of as well. For what I 'thought' I was bringing him in for turned into much more. NEVER did I think he'd be in ICU. I am just distraught.

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      Worried Texan 7 years ago

      My 50 year old brother went on the vent as soon as they got him to the Hospital 7 WEEKS AGO. He is off the vent for last 5 days ,today they say his infection has returned. I'm told he is still off vent. It would make my day (year) if anyone knows of someone on the vent over 8 weeks and survived. He has been off sedation a week. He appear awake (eyes open and tracking) and some quite crying. The family worries he may have brain damage. We think it is possible he laid on his floor days before being discovered and taken to hospital via ambulance. We believe drug/alcohol abuse caused this. I have no idea what questions to ask...just needed to tell someone Thanks.....Worried Texan

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      Gail 7 years ago

      My sister has been on a vent for three weeks. She had a lung removed two months ago & the cancer has spread & she is terminal. They cannot get her off the vent. Her husband finally decided to take her off life support but now she is being responsive because he had them take her off morphine to get her to be awake more. She is still getting some pain meds. Now he & his daughters can only think about getting her off the vent so she can go home. The lung doctor says she is not going to go home on a vent. They will have to put her into a special home for vent patients, two hours away. The hospital said they can no longer keep her there.This has been a terrible time for our whole family.

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      Eleanor Washingto 8 years ago

      Hi When I was on the ventilator I was unconscious. They weaned me off gradually then I became conscious. I am told bby my family that the doctors tried several times to wean me off the machine, I hope your dad is ok please let us all know. My thoughts are with you. eleanor xxxx

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      Siobhan 8 years ago

      My Dad is on the vent right now. They are having a hard time weaning him off. He has emphazyma. And about 4 weeks ago, he had the flu, sparked a heart attacked which of course didn't help his emphazyma. He was pretty bad the first week, as you can imagine. But he's over the flu now and wide awake. but when they turn off the vent, he gets nervous and they turn on the machine again. Has anyone ever been scared about not being on the vent but then got over it?

    • profile image

      Eleanor Washingto 8 years ago

      Vikasmarwah That is fantastic news, so glad you survived Have a good life

    • profile image

      Vikasmarwah 8 years ago

      Hey Eleanor

      That's so strikingly similar to what I have just gone through..On 7th Oct;2009 , I came down with supposedly viral cough and fever.When my local GP couldn't handle it further,I admitted into Balaji hospital nearby my house at New Delhi,India on 12th Oct'09.We were 5 days away from biggest Hindu festival - Diwali and 7 days from my 42nd birthday on 19th Oct..My condition worsened by 15th Oct.09 and I had been diagnosed with Pneumonia and ARDS by that time. .Same evening , my oxygen fell to 56 and my dad, with tears in his eyes , signed acceptance for me to be put on ventilator.. Next 8 days at the hospital was trauma for my wife,son and entire family as till 22nd Oct , the hospital dithered to take me off ventilator. I was also tested for dreaded HINI Swine flu virus but tested negative .They would promise each day that today the ventilator would be off but nothing happened.I was of course heavily sedated,paralyzed,critical but stable in hospital bulletin that came out each day.By this time , my family had completely panicked and moved all New Delhi hospitals for second opinion.

      On 22nd Oct'2009 , family decided to take a final stand.I was shifted on ventilator in 45 minutes flat to Apollo Hospital,some 35 kms away but arguably India's best and probably one of Asia's best equipped and reputed hospital..While in the speeding ambulance, I briefly woke up but was delirious.Upon reaching the hospital, I struggled not to be put on ventilator and remember having woken up after almost 9 days and thought saw my wife..Immediately,I was unconscious again.

      Wonderously , I was gently brought back into consciousness 12 hours later and I showed a thumbs up sign to my wife.. She cried with delight..I was taken off ventilator after exactly 28 hours after I became conscious.Ultimately , I was dicharged some two weeks after being taken off ventilator as my fever was not settling and I was on injectible intravenous antibiotics that required hospitalization. I came back home on 6th Nov'2009 after almost 4 weeks of hospitalization.. Am now recuperating under wife's expert care and son's joyful company..Am glad to be alive and think I have been granted second life.

    • maggs224 profile image

      maggs224 9 years ago from Sunny Spain

      A facinating insight into life on a ventilator, my mum who was in intensive care after a road accident was put on a life support machine for a time and they had trouble weaning her off it. I am glad the you are still here to tell the tale and hopefully many more tales to come.


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