Is there anyone who can share their recovery stor... - ICUsteps

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Is there anyone who can share their recovery story from multiple organ failure?I thought I would be back at work and much better by now.

garrymeister profile image
31 Replies

During my stay in the ICU I suffered multiple organ failure (MOF) and systematic inflammatory response syndrome (SIRS).That should tell you how close to death I was. Is there anyone out there who is well into their recovery from MOF?I am at eighteen months and weird things are happening to my body. I have recently been diagnosed with pancreatitis that seems to be related to the MOF. The doctors don't know what is happening but then they won't own up to many of the experiences we all seem to share so I was hoping one or more of you could share your experiences. I guess the biggest problem is the weird pains I get, cramping and totally running out of energy. I just slept for two days straight for no apparent reason. Like the rest of you I dont sleep well and have vivid dreams but this is getting better and I dont seem to be having nightmares anymore. Could this be a healing spurt, like a child’s growth spurt? Although I can walk five kilometres every day. I run out of steam very quickly and have been unable to return to work yet. I’ve kind of given up. The longest healing time my vascular surgeon mentioned was two years. But I met up with a friend who was in the ICU for three months (I was only eight days) and she said she was getting near the end of her recovery at five years. Surely I'm not up for that. Any help no matter how small will be greatly appreciated.

Garry

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garrymeister
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31 Replies
Luckyone profile image
Luckyone

Hi Garry,

I had double pneumonia, sepsis and multiple organ failure complicated with ARDS, that was almost two and half years ago, my wife was told I had a less than 10% chance of survival at the same time they put a DNR on me, which lucky for me was removed the next day as on the twelfth day of being in ICU I had respiratory arrest due to a mucus plug the size of a golf ball which caused me to have 2 cardiac arrests, I spent a total of 88 days in ICU followed by 12 days on a respiratory ward finally leaving hospital on 18th March 2011.

The first six months at home were the worst suffering badly with depression and possible PTSD I just felt my family would have been better off if I had not survived, fortunately I got the psychological help I needed thanks to my ICU consultant, my other problems were a frozen shoulder and very strangely trapped nerves in both my elbows causing muscle wastage, numbness and pain in my hands (I have since had 2 operations to decompress the ulnar nerves in my elbows with limited success).

After two and a half years I still find fatigue can can come on very suddenly and after walking the dog about a mile I need about 20mins to recover, my main problem is I get a lot of pain in my knees first thing in the morning and swelling in my calf muscles during the day. I have been unable to return to running my business due to the fatigue and pulmonary fibrosis I now have, having to avoid dust and pollutants associated with my job which was carpentry & joinery, something I miss so much, but I have now put my near death experience in ICU to good use by becoming a founder member of our local ICU support group helping others understand what they have been through and that they are not alone.

I now think we're the lucky ones to survive this massive trauma we've all been through and although we might still have problems it's great to know we are still alive.

Best wishes and good luck with your continued recovery,

Bill

garrymeister profile image
garrymeister in reply to Luckyone

Thanks Bill

You have been through the wars havent you? How many times did you hear that while you were in hospital?I only spent eight days in ICU six in an induced coma. I tried to extubate myself and so they tied me to the bed. that didnt help my relationship with them. I didnt know why I was in there. They made a mistake during a routine operation that should have caused my death. They gave me less 1% chance on the first night. I can relate to the fatigue and swelling. I get some joint pain but I had never associated this with my time in the ICU. I dont feel lucky. Blessed would be a better way to describe it. That may relate to the near death experiences I had during and coming out of the coma.

Thanks for sharing . Talking about it always seems to help. Sadly your post makes me realise there are others who doing tougher than me. I hope that the future continues to improve for you. I met a friend the other day who had problems similar to you. She is at five years recovery and she tells me that what she has now is pretty much it. She says there will be not much more improvement from now on. I guess i'm just not looking foward to that point when I have to face up the disabilities I will have to live with. But dont worry like you I am turing a lemon into lemonade.

Regards Garry

EveBarrett profile image
EveBarrett in reply to Luckyone

Hello. My name is Eve I live in Las Vegas, Nevada. I have a 55 yr old brother (Iam 51). He is at EDRD5 (end stage renal disease= no kidney function whatsoever) . He is also polytrauma and I believe has suffered brain damage for some many intubations. My story is too long to describe here and I as his only caretaker (except hospital "care" )

I was wondering if I could contact you (or vice a versa)?? If you use Facebook, you can locate me by searching for Eve Barrett-Drew Las Vegas, Nevada.

Jaz11s profile image
Jaz11s in reply to EveBarrett

Hi Eve . My dad is also undergoing the same thing . He has brain damage and is a dialysis patient . He currently unconscious. Can u help me out pls

Kulta profile image
Kulta

Hi Gary,

I'm a 39 year old woman nearly two years on from MOF and ICU and also had suspected pancreatitis a few months after discharge as the physical symptoms were lessening. Anyway, the worst thing I found was being given timescales and deadlines and as I passed them and still no better, made me feel like I would never get my former routine and energy back. I'm still not quite there and wonder if I will ever feel the same but I'm glad to be here and stand outside come rain or shine! We are all different models whilst our makes are similar and recover, as children develop, at different rates. Us patients need to be patient and not be given unrealistic targets whilst many of us demand them understandably. Time is the best healer and hey, my happy pills are helping me along the way too ;0). Naturally we compare but everyone's story is different. Yep, I listen to former patients who are years on but they are my best support when friends and family may have pushed their ordeal of my illness to another place not necessarily knowing that for me, that's some way off yet. All the best in your journey Gary - I hope you have a speedy, comfortable and safe means of transport to get you there x

garrymeister profile image
garrymeister

Hi Kulta

Sadly I had to sell my comfortable and safe means of transport because I can't afford it anymore (lol) You're right patience is important. I feel lucky to be here and humbled to be given another chance at life. I guess after listening to you both I would reframe my question. Is there a point where you accept your disabilities and symptoms as permantent or can you continue to improve for the rest of your life? If you read my reply to Bill you will see that one of my friends that has been through something similar suggests that after five years there will be very little improvement. Going back to work would be a great milestone. I havent reached that point yet but I am very hopeful for the future.

Thanks for your support Gary

Offcut profile image
Offcut

I was in ICU 32 days with lung failure 5 years ago. My wife was told I was in MOF and would not survive the night a few times. I now suffer fatigue and pulmonary fibrosis, pleuresy, hiatus henia,paralyzed diaphram, asthma,atrial fribulation(1992), and arthritis in my feet, knees, neck, shoulder and spine. I still have sleep issues. But I try to smile as much as I can.

garrymeister profile image
garrymeister in reply to Offcut

Thanks Offcut

You make me feel very lucky. It looks as if I may have a mild form of Pancreatitus. When I went to see the specialist he confirmed that there was unlikely to be much improvement after five years. You are right about smiling it is the best medicine I know closely followed by sharing experiences with other survivours on this web site. Do you feel that the fatigue is related to your oxygen levels or healing? Thanks for sharing

Garry

Satish123 profile image
Satish123 in reply to Offcut

hi,

Please advise how did you survived, my mom is now at a critical stage of MOF, She was also suffering with Polymiositis, an auto immune disease.

please help which doctor, mobile number.

Please i need your support..

Satish Mehta

+91 9833230273

Mumbai, India

Simranmago profile image
Simranmago in reply to Satish123

Satish, if you're reading this, please tell me if she recovered. My grandmother had absolutely no health problems and then one day we find out she needs an aortic valve replacement. She came out of iit with flying colours. Its been 2 months and last week she had a cardiac arrest in the house. No medical problems could account for it. She gained consciousness with no damage anywhere the next day. She was scheduled for a pacemaker but that couldn't happen because of thinning of her blood. Then she had another cardiac arrest in the cicu. She regained conciousness again but damaged her kidneys and there is blood in her lungs. She had regular fits for a day but now they've stopped and she does not have brain damage. We will be devastated if she dies. She has been on dialysis twice now and the kidneys don't seem to be fuctioning well. They are trying to reduceswelling by getting the collected fluid out. She is only 67 years old. Her oxygen levels fell last night while she was on the ventilator. We are very scared. Is there any hope?

Offcut profile image
Offcut

At my last visit I showed 92% O2 at rest but once I start doing anything it will drop to 80% If I go up and down stairs twice I am struggling for breath, once and I am breathing heavily. I do suffer sudden fatigue. I was told that I have past the healing stage now which has left nerves exposed because of the infection and the fibrosis together, making deep breathing painful

garrymeister profile image
garrymeister

I'm really sorry to hear that Offcut. I remember them putting oxygen on me hospital when I dropped to 92% I hated it and kept taking it off. I wish you all the best and once again thank you for sharing.

Regards Garry

Offcut profile image
Offcut

I had a traci to get the O2 into me. When they put the first drain in they got 3.5 litres of fluid out of my lungs and then added another they were getting around a litre a day minimum. I had one needle drain that only had 10 mil of fluid but a 1 cm blood clot. I was on an ocillator for 10 days as I was unable to breath for myself it was not until I ended up on the gen ward. They were not going to let me out unless I was 94% but I found how to get a higher reading than the 92% by cheating. I was so desparate to go home.

garrymeister profile image
garrymeister

My biggest fear was that I would have to spend Christmas in hospital. I got a day pass one week before I was discharged. I felt like a little kid at Christmas it was so good to be free. I have a monthly kidney function blood test that I have also learned how to cheat on. I told my doctor and he said it was impossible to cheat on it. I was surprised how naïve he was. In some ways I think we know better than the doctors what is going on. I am lucky I now walk five kilometres a day and my lungs appear to be fluid free. I was in a coma (induced) for six days and intubated for seven. My most horrific experience was waking up intubated. I tried to pull it out so they tied me to the bed. Unlike a traci I couldn’t communicate with them and tell them how angry I was. I fixed that as soon as they extubated me again.

rrahman profile image
rrahman

Hi...it is definitely an idea to share experiences. I was in the icu for about a month and then hdu for just under another month. I had multiple organ failure through what I have been now diagnosed with as granuloma vasculitis.It attacks my own immune system.for some unknown reason and it hit my lungs kidneys liver. And because it is a systemic disease the symptoms come with nose bleeds wake aches trouble breathing heart racing bloodshotebloodshot. Eyes. I had to have 3chest drains in because of a reoccuring pneumothorax.

I have been out 5 months now and am still off work. Although my consultants who I see every month now (was fortnightly) says I should go back now. .Llaughed when he said this. I can stand on my feet just about 10min before my heels hurt and get really tired n breathless. I still get really sharp chest pains that come on whenever it feels like it. So I'm not returning to work uuntil I feel I can. There's no way I can travel London u underground peak periods and stand around....nobody will offer me a seats and my kknees give me serious issues. (swelling and bone weakness side affect from all drugs plus steroids I'm on)

I am trying to walk now and probably now on 20 min with manageable ease....but I still feel like how I first felt when in Hdu and tried to stand which was like lead.....although I put on a lot of weight since the hospital because of drugs and staying in bed because I weren't able round move. I have tried to accept that it will take time and really wish I could feel better faster. I think we have to try n be positive maybe That will speed up our healing process....? Problem is with vasculitis because u look okay on the outside people think your fine....but I have to battle with everything....carrying weight....bending on my knees....standing for long....even undressing and cooking is a problem for me. As my hands tremble whenever it wants to.

Consultants said everything will be fine once my dosages are reduced....not happened. Still Got same issues. But I do want to return to work so I said maybe October I'll see to go back part time perhaps.

Wishing you positive thoughts on your recovery.

garrymeister profile image
garrymeister in reply to rrahman

Hi rrahman

Sorry for the delay I missed your reply. You are right about sharing I have received so much encouragement from the members of this site. I also realise that compared to most of you I have had a relatively easy experience. It is now two years since my ICU stay, although I now walk six kilometres a day the fatigue that we seem to experience is not leaving me and it appears that my recovery has plateaued. I think my biggest enemy is stress and if I do to much my body shuts down and sends me to bed. I have learned that if I am to have any quality of life my bodies requirements are paramount and take precedence over every thing and one else. It seems rude when I have no obvious disabilities. But the rule is me first and if I don't obey it I just end up in bed unable to do anything. Thanks for your thoughts I notice many similarities between our respective conditions and I suspect these all come from the way we were treated and the things that happened to us in the ICU rather than the illnesses and injuries that put us there.

Garry

LucyT profile image
LucyT

Hi Gary,

I was in ICU for just under a month over 5 years ago. I had sepsis which caused MOF. I was on a ventilator for about 11days before they decided to give me a trachy as they couldn't get me off the ventilator as I wasn't coping with the tubes in my mouth when they took me off sedation. My right lung collapsed when they put a chest drain in, thankfully they re-inflated it very quickly! Since leaving ICU I've had numerous tests on my stomach as it doesn't work as well as it should and I have trouble keeping food down especially when I'm fatigued, I get pains in my knees and back and headaches when fatigue is worse than normal. The last 5.5 yrs have had ups and downs.

On the work front:

I went back to work 3 months after being discharged from ICU. I was an officer in the Army and I had a busy desk job as a career manager. I lasted 9 months before I was signed off work with PTSD and Chronic Fatigue Syndrome. I would get up go to work do a full days work then go home and crash on my sofa (I had difficulty getting off the sofa to go to the toilet I was so fatigued). I was off work for a further 3 months and then went back part-time (3hrs, 3days a week). I found that if I worked I couldn't do anything else as I was too fatigued. I was eventually Medically Discharged from the Army 3.5 years after being in ICU. I then decided to do a few courses (Pilates Instructor course and then an accountancy course) 4.5 years on and I was able to complete a half marathon, I was so pleased that I had achieved my goal but during the 6 months prior to the event I was not working so was able to train and pace myself throughout the day. I felt fantastic - not back to how I was before my stay in ICU but about 75%.

It was time for me to try working again. I got a part-time job working 20 hours a week. I worked Mon, Wed & Thu and by Fri I found myself crashing on the sofa again with fatigue. Everything else stopped including my exercise, socialising with friends and generally enjoying life! I lasted 8 months and then resigned due to fatigue.

I still find it difficult to come to terms with the fact I will never be back to full time work and get frustrated with my fatigue but on the positive side I'm alive and as long as I pace myself I can do most things (as long as I'm not working!). I am desperate to go back to work but I need to find the right job which will enable me to do all the other things in life I love.

It all sounds bleak, the most difficult thing I have found is coming to terms with where I'm at and knowing I'm not likely to improve any further. Pacing is definitely the way forward and keep motivated, you can achieve anything if you pace properly, it may take longer than it use to but you can get there in the end if you keep going.

Everyone is different though and people are affected in different ways from MOF.

I wish you lots of luck and hope my response is helpful for you.

Best wishes

Lucy

garrymeister profile image
garrymeister in reply to LucyT

Sorry Lucy I missed your reply also. By way of an update the OT (occupational therapist) has decided that it is highly unlikely that I will work again even part time. One of my disabilities makes it difficult to be in public. Thankfully the government has put me on a pension that is helping to make ends meet. It has been very hard to accept the fact that I am on a disability pension especially since my disabilities are not obvious, especially if you are upwind of me LOL (ICU survivor humour) As I progress with my legal and financial issues, each resolution removes more stress and while it does not remove the disabilities the lack of stress adds to the quality of my life. I am encouraged by everyone's stories and I have resolved that concentrating on a cure or full recovery is a pointless exercise. Rather I have resolved to respect my injured body and ensure that I make what ever time it has left as comfortable as possible. My Doctor is aware of my thoughts and is treating me accordingly. I don't put up with pain unnecessarily. I sleep when I am tired no matter what time of day it is and I have a large number of choices to help me sleep and stop the dreams/nightmares. I am of the opinion that the things that are happening to us are more the result of treatment we received in the ICU (or not dying when we were supposed to) rather than our original illnesses or injuries. While I could be wrong the thought makes my symptoms easier to deal with. As did your response. Thanks for sharing

Garry

Caser90 profile image
Caser90

Im not sure he active this thread is but I was in coma for almost a month and in hospital two months with MOF. Heart, lungs, liver, kidneys. Had dialysis a lot and also had a trach put in 3 days before I came out of coma. Had to learn how to walk again. I remember the guys doing the heart tests complaining about having to move me from bed to table and asking me, "Can't you move yourself?". I thought no, I am in the hospital. One of the worse parts was having the chemical injected in me for the stress test, since I couldn't walk the treadmill. Now I've been home a bit over a year and I have noticed my voice isn't the same anymore after having the trach, I get fatigued easily, I am sick more often than at any other time in my life, I still walk like a zombie, my memory isn't what it used to be, I get confused, I didn't qualify for any disability since some pencil pusher determined I wouldn't be unable to work for longer than a year. The heart meds and the blood pressure meds I am on also cause drowsiness and dizziness. My heart function has improved, my ejection fraction has improved from 15% all the way back up to 60%. My kidney function is still not back to normal range. My creatinine level had gone down to within a tenth or so of normal range, then after two successive urinary tract infections in a 4 week time frame my creatinine was back up to 1.9. I have a ultrasound scheduled to determine if I have a kidney stone. In the hospital I had lost almost 70 pounds and then after gained back 30, then lost 30, gained it back, etc.

garrymeister profile image
garrymeister in reply to Caser90

Hi Caser90

We do have a lot in common. My voice is still weak. The ENT says that my vocal cords are not damaged but the weakness is caused by stress. As I reduce the stress associated with my disabilities my voice will come back (YAE). The fatigue has stayed with me and I experience the same problems with illness that you do. We treat it with regular flu shots, more antibiotics in the past two years than I have taken in my whole life (I am in my late fifties) and I avoid sick people and doctor surgeries like the plague. With regards to the pension, when I had to go and see the same pencil pusher as you, I took a report from a professional OT (occupational therapist). It cost a lot of money but pencil pushers, lawyers and magistrates take their word as fact. You need all the help you can get, rest and recovery have to be your main priorities, but you will need support to get past the pen pushers and other gate keepers. I am lucky that because my condition is the result of poor performance of a surgeon I have a great Lawyer who leaves no stone unturned in getting me the support I need. May I suggest that you do not accept the first refusal and move your request for help up the line. Also get as many supporting reports from specialists that you can. this web site is a testimony to the difficulty and slim chances of a full recovery after illness or injury that is bad enough to land you in the ICU. But if you read the threads you will also discover that in the end it is the patient themselves that takes their battered body and coaxes it into recovery or a position so that you can have a reasonable life style, The clinicians and other support staff are just props to what is a deeply personal and challenging battle that only you can undertake. I think my body and its state of wellness will occupy most of my thoughts and actions for the rest of my life. But like any job or calling I will have to make sure it does not control me and I am still able to make room for life's joys. Smell the flowers. Tolerate the idiots and get on with winning the battle. Thanks for sharing.

Garry

rrahman profile image
rrahman

Thanks for responding Garry.

Inaudible regards to the voice returning to normal I'd suggest not stressing to much over it..when I first noticed my non existent voice I was really worried I'd never get my voice back....after about 4 half months I'd say it came back. Slowly on some days I'd be able to say one sentence in my own voice and than it'd go to a husky softer voice again. I realised when I stopped worrying about it as after a while I got used to it and actually liked it ...my voice came back.

Wish u well.

Everything takes time, and it's true I have now accepted that my body and it's functions will never return to pre-icu but I've learnt to make do with the here and now and slowly do things I used to. It helps to feel normal.

Satish123 profile image
Satish123

hi,

Please advise how did you guys survived, my mom is now at a critical stage of MOF, She was also suffering with Polymiositis, an auto immune disease.

please help which doctor, mobile number.

Please i need your support..

Satish Mehta

+91 9833230273

Mumbai, India

jewellianne profile image
jewellianne

Just found your post and was glad I did, I don't feel so alone. I was sick for some time and finally decided to give up on doctors since they just kept saying you look healthy and sent me home. So I stayed home and 2 months later I was in the ICU with MOF and toxic metabolic encephalopathy from the liver and kidney failure and in a delirium that I still remember living through hallucinations completely out of touch with reality. I suffered multiple cardiac arrests as well. The hospital ICU put me on death watch and allowed my family 24/7 access to me and let them sleep in the other bed in the room fearing I had hours to live. My intestines as well had stopped functioning so even trying to put water trickling in my stomach made me very sick.

My living will did not allow for dyalisis so treatment was slow. I was in a delirium/comatose state for 24 days after finally coming to I found that there was damage to my liver (necrosis) and to my kidneys and I am on medications. I had pancreatitis which is now chronic that I suffer from constantly and now must take Creon (pancreatic enzymes) @ 36,000 lipase units 3x's daily,

I also suffer from permanent brain damage, I was having problems with several areas but the worst was I thought I was suffering from Hallucinations all the time but after a spect scan and comprehension test that took 8 hours it was discovered that I suffered global brain ischemia and have a lot of damaged areas in the brain and watershed areas which have now caused me to suffer from Visual Agnosia (visual perception disorder) I can look at a familiar object and not recognize it or it can appear as something completely different. Also, after many brain scan and seeing brain surgeon it was discovered that there is damage to my pons, I have a central pontine myelinolysis which the doctors believe was caused from the hospital trying to recover my fluids due to my severe dehydration and certain salts entered the brain to quickly damaging the pons which have caused a terrible jerking and twitching in my arms, breathing and legs that is unpredictable. After leaving the hospital all of my hair fell out, the doctors said it was due to my body being in shock and when it grew back it was a different color, texture, and instead of being very straight it had curls. It is 2 years to the month exactly and I just suffered another bout of pancreatitis, my hair has not straightened or gone back to my original color, my brain damage has not improved, my heart is damaged now and I am on heart medication, I take 32 prescription pills daily and I am only 44. I suffer from constant fatigue, sometimes insomnia, PTSD from the experience, I am a changed person, I no longer live a life, I am currently existing to sleep, take my meds and try to function so I can get some more sleep. I no longer leave my house, walk my dog, go places I used to, I no longer (due to the brain damage) have the ability to even read a book with any sort of clarity, this is on top of the already established health conditions that I had prior to January 2014. I wonder why they fight so hard to keep people alive sometimes because they don't care what their lives are going to be like after that, it is just the challenge of whether or not they can keep your body from dying. Mine certainly wanted to die and fought very hard to die but the medical people wouldn't let it and now I am a living corpse. There's more to it but that's it in a nut shell!

Christaclifford profile image
Christaclifford in reply to jewellianne

Wow sounds just like what I've been through sent away dying then revived after severe damage just to exsist but never living again

Skyehammer profile image
Skyehammer

Hi Garry ,

I contracted sepsis in December 2012 , was flown to Paisley which was a 6 hour journey one way for my wife - I was on a Life Support Machine and hooked up to a Dialysis Machine for 3 weeks and spent a total of 3 months in hospital after contracting pneumonia upon returning home . I suffered multiple organ failure including several cardiac arrests - the Doctors told my wife to prepare for my death and told that should I live I would most certainly be left suffering from brain damage . Well , I survived and recovered partly due to my wife - my body was swollen like a rubber glove filled with water and the Doctors were at a loss as to how to help me , they'd tried several drugs to no avail until my wife told them I sometimes took colchicine for swollen joints , thankfully they agreed to try it and within two days I was passing fluids .

The worst aspect of sepsis for me , apart from coming the closest to dying I've ever come were the nightmarish fever dreams - they seemed so real I told mt Consultant that I'd been raped and could that have caused the sepsis !

Upon coming home it took me 8 months to get over the physical side effects , I had to learn to walk again as I'd been operated in 2011 on 3 discs of my spine . It was the mental side of the experience I found difficult to deal with , flashbacks from the dreams , reminders from a variety of films . I did agree to see a therapist eventually but by then I was beginning to cope on my own so cancelled after 2 visits .

It's been 5 years + now since I was discharged , I missed Christmas , New Year and my birthday in March . In 2016 I suffered from a bout of pancreatitis and was treated for sepsis once more but didn't go into septic shock . I suffer from low blood sugar levels on occasion but nothing major has happened since I had my gallbladder removed in 2017 .

Ericeast profile image
Ericeast

I was in the icu in an induced coma with multiple organ failure,pancreatitis,,among other things due to severe alcoholism...I know, I did it to myself. I had a trach to wake up,coma lasted a month and hospital 2-3 months more.its been over a year since it happened. My biggest problem I have left is alcohol induced neuropathy in my feet. I still get tired and feel woozy every once in awhile,but exercise is key. You have to rebuild your body,I do 5 miles on an exercise bike daily and lift weights. I’m in decent shape now and can walk for miles. Fatigue is always there but like I said the exercise helps immensely. Every doctor and nurse still gives me that “how the hell are you still alive and in this good of shape” look. I wish we all could fare as well as me. It breaks my heart. If anyone needs a chat feel free to message me anytime. It definitely helps to talk about it

Sis2020 profile image
Sis2020 in reply to Ericeast

Your story gives me hope. My sister has aspiration pneumonia and is currently in ICU for 4 weeks now. She also suffered from sepsis. She cannot breathe on her own. Doctors put her on heavy sedation propofol because of setbacks from the trache placed on her neck and a broncoscopy done the same day. She woke up puffy all over and with fluid in her lungs. They tried to wean her off propofol but she did not wake up. Her eyes rolled and she is not responsive. I’m scared for my sister. We were told yesterday she has multiple organ failure and to prepare for death.

StaceyN profile image
StaceyN

Hi Garry

First off congratulations for getting out alive!

2 years ago on June 29 I was found by a friend essentially near death.

My friend a nurse happened to stop by as I was in weak health after losing my son the year earlier and a vicious divorce raging at the same time ( my ex was a lawyer).

I had stopped eating during the period of mourning and had dropped down to 104 lbs at 5’8 I was drinking too much.

I started throwing up massive amounts of blood and went into shock and that’s how she found me. They didn’t think I could make it alive to the hospital and I required a backup team to stabilize me for the 10 minute drive. I was in complete organ shutdown with massive blood lose.

I was put into an induced coma for 72 hours and while I had a couple of odd halucitions ( people I knew visiting me ) I retained a fairly logical scetiscim.

I woke up slowly and realized I was on a respirator, dialysis, transfusions pretty much everything. It was 22 days before I could have fluids through a straw and another six weeks moving out in and out of ICU and acute care.

I was tremendously weak on discharge and blood work and gastrointestinal scoping and banding were monthly.

Medications were slowly weaned off and I am on a minimum of diertics. At 3 months post discharge my hair started falling out and another full panel blood test revealed very low iron levels so I started on Pharmaceutical iron supplements. The fatigue, chills and the hair loss stopped almost immediately.

At about 6 months would get out of bed and everything aches, I mean really aches but I got massages and soaked in Epson salt baths every night.

I must maintain 3 healthy meals a day, 8 hours sleep, obviously no alcohol and I don’t take any supliments unless Dr ordered. The big peace of healing for me tho is the mediation, therapy (grief and trauma) and giving back and faith ( something I never thought I would say).

All my organs are functioning and my liver was at actual end stage and my kidneys were touch and go. I have bizarrely a clean bill of health that my team just shakes their head at but with so many advancements in health care, mental health and spiritual integration I am living proof.

I just started building muscle and weight gain in the last few months so it definitely takes time and if I go too hard I definitely remember I am still healing. I do believe the therapy really helped around the PTSD of the whole experience.

I hope this helps.

Stacey

sheila21 profile image
sheila21

Hi. Be patient! You can't rush recovery! It's very impressive that you can walk so far. Do you manage any other exercise to help strengthen other muscles?

I am coming up to 2 years since multiple organ failure after sepsis from multiple organ failure. I feel quite fit and strong but some days I have a moment of a muddled head!! My husband calls it my coma moment! I have worked on fitness and taking care of myself far better than I used to!

I suppose age and the level of fitness you were before you were ill must affect recovery.

Good luck with continuing your recovery. We made it!!

Zhanna1963 profile image
Zhanna1963

Hello, Gary! My son is now 3 days in CCU with MOF after acute pancreatitis/ Can you tell how old are you and how long did you styed in hospital/ My son is just 25 YO

Sleepgbty1 profile image
Sleepgbty1

I survived a Coma & Multiple Organ Failure of my Liver & Kidneys in 2012 and refused a double otgan transplant because I do not believe in spare parts.

I used Chakra Healing Chants, herbs and vitamins. Today I am disabled only with Rheumatoid Arthritis and take NO PHARMACITICAL Medications.

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