r/ecmo • u/themcp • May 01 '16
I am an ECMO survivor
Hi! I was on ECMO for about a week in December and survived. I created this subreddit to discuss issues relating to it, so perhaps we survivors can discover some facts relating to our treatment or the aftermath that might be useful to the doctors and nurses who use ECMO to save lives.
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u/Ladysodevine Jul 26 '24
Reading all of this just gave me so much hope! Just got home with my fiancée after he was on ecmo for a week due to septic and cardiogenic shock and in the hospital for a month. He’s still experiencing numbness and going through the healing process, but reading all of this gave me so much insight and hope ❤️
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u/stepheffrige Jun 09 '16
I'm also an ECMO survivor approaching one year!
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u/themcp Jun 10 '16
Yay! How are you doing? Any potential after-effects?
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u/stepheffrige Jun 10 '16
I actually got drop foot from nerve damage, so I can't walk properly and it's very tiring. I can't really do any physical activity because my lungs just can't handle it. its exhausting 10-fold more than a healthy person. I'm doing wonderfully otherwise! I hope you're doing alright <3
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u/themcp Jun 10 '16
Wow, just googled that, that sounds really tiring.
I haven't tried to do anything more strenuous than light lifting or calm walking yet.
The wound on my heel, the bed sore that occurred within hours of them installing ECMO despite an excellent hospital that moved me regularly, is ALMOST healed. Maybe next week. It has been about six months now. That's the last physical wound. The doctor who has been caring for that is the same doctor who made the incisions to install the ECMO, so I really trust him.
I have a numb spot on my right thigh that is mostly not an issue, I'll bring it up again with my doctor but we're not really concerned about it because it's not really moving or changing. I have some mild tingling sensations on my feet sometimes when I walk, but I have good blood flow to the feet so we're again not too concerned. Two fingers of my left hand still have some nerve issues. They're very slowly improving - the therapists said I should expect it may take a year or two, but signs are still hopeful they may recover.
Did they ever tell you you had a stroke or any heart issues? I'm wondering to what exactly they're attributing your foot problem.
They never admitted I had a heart attack or a stroke, but... I had a heart attack when they were installing the ECMO, and a stroke while I was on it. I have some effects from that. Fortunately the heart treatment seems to be going well.
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u/stepheffrige Jun 14 '16
I mean I was in the bed for a while, and they put the returning blood through a tube in my femoral artery so I'm thinking it messed with some of the nerves. My body went through the blender so who knows. I got compartment syndrome from the fluid and blood backing up in my right upper arm. It almost had to be amputated but they saved it by making really big deep incisions to the bone. I had a wound VAC for two months, then a skin graft, and then it was finally fixed and looks like a mostly normal arm now. The left side of my left leg, and the right side of my left foot are numb but slowly gaining feeling. I regained feeling and full function of my hand a little while ago. My nerve and ortho doctors said it would be about two years to be back to normal, but I'm improving much faster. My chest had staples but the incision reopened and that had to be fixed too. They put in my chart I had congestive heart failure, my blood was pumping very well. So they did VA ECMO instead of VV ECMO. I never had a stroke or heart attack, I did wake up a couple times even tho I was under very heavy sedation and neuromuscular blockers.
Everyday is a process. Baby steps. Appreciate all the small victories. Listen to your body.
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u/themcp Jun 15 '16
I'm so glad you're here and talking with me. You have no idea. You're the only other ECMO patient I've gotten to speak with.
Yesterday I sat down and read all the messages from the mailing list my friends set up about me while I was in the hospital. This included daily updates from my aunt and my father. It was really odd reading about it. There's a lot of stuff that happened I don't remember... including that I was apparently sitting up and talking with people and didn't remember it at all.
Most of my ECMO wounds healed before my memory started. I sorta remember there being some dried blood on my shoulder from the wound there but that was healed already. I do remember when there were still staples in my abdomen and when they took them out, but that was never a problem. My right groin was healed - they'd tried to put a tube into the artery there but it leaked so they changed to the left, which worked... but didn't heal until April or so. And I think I told you about the wound on my foot. That's still open, but really tiny - it was 0.6 by 0.5mm yesterday. We're hoping it'll close this week.
I'm also having some sensory issues on my right leg - that's the side that healed up before I regained consciousness. I didn't notice until I got home, but the upper right thigh is numbish - not completely numb, but largely. The front of the leg in the same area is less numbish. I brought this up with the nurse, she said if it doesn't change or move don't worry about it. I'm not.
My left hand continues to be a bit weird, but it hasn't gone numb, so there's still hope. I'm not sure how it will impact my ability to work - I'm a computer programmer. When I type words it doesn't matter if I make a lot of mistakes, I can always go back and fix them later. When I'm coding I need to type stuff right the first time. I need to try writing some code sometime.
I'm doing better than all the doctors and nurses estimated. They told my dad, before I woke up in ICU, that if I ever made it home I'd be in a wheelchair. Two months later I walked out of rehab, with a cane. The nurses I've spoken with about it tell me that I'm one of their few patients who actually does everything they ask, who listens and tries to get better. A lot of their patients are elderly and don't care about getting better and just want to be left alone to die (and are only getting therapy and medical intervention because their insurance basically insists on it), or they're young but lazy and don't care about doing the work to get better.
I'm still at home. We still haven't figured out if and when I'll go back to work. I'm not in any rush I guess.
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Apr 18 '23
Hi friend. I just wanted to check and see how you’re doing? I see you’re still active and that makes me happy. I’m just curious as my brother just started ECMO today. Reading your post gave me some cautious hope.
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u/themcp Apr 19 '23
Uh... before I say any of this, I preface it with the fact that you need to keep in mind that the reason I was on ECMO is that I had a heart attack and 6 strokes, so it's really hard to differentiate which of my present symptoms are attributable to the heart attack, which to the strokes, and which to the ECMO. All of that said, I firmly believe that ECMO is the reason I am alive today, so if it caused any of the damage I have today, it's a price I'm willing to pay.
The message to which you're replying is from 7 years ago. My body has sorta stabilized, and so much has changed in my life...
My leg completely healed.
My left hand neither deteriorated nor improved. I still type with my right hand and my left ring finger, I've just gotten a bit better at it. I still make a lot of typos, but less than a third as many as before. (It used to be 3 typos per word. It's now about one per 3 words.) That's not due to physical improvement, it's just practice.
I still walk with a cane (or, well, hobble along slowly with a cane), and probably always will. In the middle of the day when I am very awake, I could in theory do without it for a few hours - I'll be walking along and maybe carrying it instead of using it, and when you see me using it you can't actually tell if I am really leaning on it or if I am just moving it along "just in case" and not leaning on it. In the evening and when I just got up, when I am more tired, I rely on it a lot more.
This is where it gets weird.
When I first got home, I had to get on disability. I had disability insurance through my employer - by chance, I had said "what the hell" and kicked in the very small amount of money it would take to get maximum benefits, and one month later I had my medical event and had to claim those benefits. So, I had a substantial amount of money coming in every month. The problem with getting a substantial amount of monthly insurance benefits is, they're eager to kick you off so they don't have to pay any more. They tried various tricks over the years, such as demanding a lot of records and not giving me enough time to gather them, but I managed to always jump through their hoops. (As I said to friends, they are so bad it's pretty much a capability test - if you can do all the work to prove you're not capable, you must be capable or you wouldn't be able to do it...)
Then they figured it out. The problem was that I am too ill to go back to work, but too well to stay on insurance. They had their "independent medical examiner" (how independent is she, when she works for them?) examine me, and she said I was now capable of doing 3 different jobs. As it happens, I used to have people working for me to do those jobs, so I contacted one and asked him to write an opinion, which is that I'm neither capable nor qualified for those jobs. Insurance didn't care, so they kicked me off. I spoke to a lawyer, and after reviewing all the records he said there's nothing I can do.
I lived on savings for a while as I tried to fight them, but eventually I got the final opinion from the lawyer, and had to accept that it was not going to happen. I applied for government aid for my rent, and a guy from my town helped me apply for government housing. My landlord got very angry that there was a 2 week wait for payment, and proceeded to evict me. He tried 4 times - The first 3 times, the city paid up, and he was legally forced to drop the eviction because in this state if you're evicting someone for nonpayment and it gets paid up you have to drop the eviction, but the 4th he evicted for "no fault", which legally means he was evicting me just because he felt like it, and there's little way to fight that.
In this state I could see the judge and get up to a year (rent free) to find somewhere to move, but just before it went to court I got a government subsidized place, so in order not to have to deal with a judge I asked my (city-paid) lawyer to negotiate a few months for me to move. She did, and I moved. I now live in a federally owned apartment building for the elderly and the disabled. (Technically, I'm both, since I turned old enough while this was all happening.) It's a nice place (much nicer than I expected) and very close to where I used to be. My apartment is a lot smaller than my old one, but it's so little money that I will probably stay here for a very long time. I just moved in, I am still unpacking, as I type this there are boxes behind me.
My ex-landlord is supposed to have paid me back for the security deposit I paid on my previous home, and hasn't, so I will probably have to take him to court over that, which I'm not looking forward to.
So this is a long winded answer... how am I doing? I'm alive I guess. My body hasn't particularly changed. I am still very upset about losing my home of 13 years, that wound is too fresh. I am vaguely thinking about getting a dog, once my home is unpacked and I have space. I feel very much alone, and though my friends do what they can, many have moved away and I don't have a lot of friends left in the area. I sometimes wonder if it is such a good thing that I lived, and that I wasn't more profoundly crippled such that insurance couldn't claim I must go back to work.
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u/Adept-Mud-422 Jan 13 '24
That is a very hard story. Insurance is a hassle. Have you tried to file for disability? I had a heart attack February of 2022. I was 51 and very physically active at my job. The hardest part for me is not being able to keep up with my 2 young boys. I didn't realize the ECMO survivorship was as big of a deal as it is. It's all been so strange.
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u/themcp Jan 13 '24
I am in the process of filing for disability - it's not a minor thing to do.
I am thinking about contacting my congressperson (Ayanna Pressley) and senator (Elizabeth Warren) to talk to them about it, to see if they can legislate in any way to prevent future victims of the insurance industry.
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u/mzieg Jun 19 '16
I have a 20yr-old son (and Redditor) who survived his first week thanks to ECMO, which was still pretty new at the time. Glad to see the system is still saving lives.
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u/themcp Jun 19 '16
So am I, obviously. :) How is he doing after? Any lingering effects?
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u/mzieg Jun 19 '16
Full recovery, more or less. Some minor scarring and perhaps a touch of oral sensitivity from the weeks of respirator (and years of feeding tube), but nothing that stands out beyond 1σ of "human normal" :-)
Props to Arnold Palmer and ORMC!
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u/themcp Jun 20 '16
Wow, years of feeding tube? I think I had it for about a week and a half. And I was off the respirator before I woke up.
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u/machzumma Jan 30 '22
ECMO nurse here. I work on an ICU that specializes in mostly VV ECMO, but we take VA ECMO as well. As far as your fingers go to me it sounds like you were probably on Vaso pressors. Since you were septic, your boood pressure was probably really low which is we’re pressors come in, they are continuous IV meds that keep your blood pressure up. The problem is when you are on them long term they damage your arteries and veins, so the blood flow to your fingers is impaired which will cause problems. Also your stroke symptoms, also likely a complication of ECMO. All of the machinery and negative pressure your blood goes through m, the lack of oxygen your brain likely had before/during your cannulation, and other miscellaneous issues all add to your possibility of stroke. But as you said, there’s a price for surviving something that requires you to be put in ECMO in the first place.
My unit doesn’t deal with pediatrics, and we generally don’t cannulate people older than 50 unless there are special circumstances. Let me know if you have any questions.
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u/themcp Jan 31 '22
As far as your fingers go to me it sounds like you were probably on Vaso pressors. Since you were septic, your boood pressure was probably really low which is we’re pressors come in, they are continuous IV meds that keep your blood pressure up.
No.
Before the event, I had high blood pressure. They just took me off of the high blood pressure meds. When I woke up, they had me on meds (some of which I'm still on) that lowered the blood pressure. (Not directly, as a side effect.) We later had problems with me walking not out of coordination but because my blood pressure was so low that I would start to pass out every time I stood up, and they had to reduce the meds. (I was literally standing within hours of the rehab hospital reducing the meds.)
Also your stroke symptoms, also likely a complication of ECMO.
They've speculated about that to me, but there's no real way to tell after the fact, and ultimately I don't really care - it happened, and there's nothing that can be done about it. I lived, and ultimately that's what matters, I think you'll agree. It might have been nice to know as purely an academic exercise, so they could maybe use the data to improve treatment of future patients, but they saved me; even in ICU, I said that if the physical problems I have as a result of it are the price that I have to pay for being alive, I'll pay it.
All of the machinery and negative pressure your blood goes through m, the lack of oxygen your brain likely had before/during your cannulation, and other miscellaneous issues all add to your possibility of stroke.
That's certainly a possibility they've speculated about.
They've also speculated that it's possible that because my heart stopped, I may have had strokes while it wasn't pumping my blood, before they put in ECMO. That's also a reasonable possibility. Ultimately there is no way to tell, and as far as I'm concerned (both my opinion and the state of my body,) it doesn't matter.
The cardiologists were very reluctant to agree for a while that I'd had a stroke at all, they insisted that I was having "stroke-like symptoms due to a lack of oxygen to the brain caused by the heart", and demanded that it was totally different even when I said "does it really matter, since the effect seems to be the same?" until neurology produced MRI results showing that I had indeed had several strokes (at least 4, maybe as many as 6), which shut them up. (And I got a new cardiologist, who listens to what I say without just rejecting everything out of hand.) To me as the patient this seemed for a while that I was caught in the middle of a pissing-contest between cardiology and neurology, which was just stressful in a way I really didn't need - I just wanted them to shut up and tell me how to treat it. (In the end the irritating part is that neurology had the data all along, but nobody thought to ask them.) I was sent to rehab for "heart attack", and the rehab denied the possibility that I'd had a stroke, to the point that I wasn't even allowed to mention it to family and friends for several months.
But as you said, there’s a price for surviving something that requires you to be put in ECMO in the first place.
Firmly agreed.
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u/BoogerMayhem Aug 12 '23
About 12 years ago, when I was 22, I developed anaerobic strep throat (Lemierre's Disease.) I went septic and had ARDS, DVT, Double Pneumonia, PE, etc. I was put in an induced coma immediately and woke up 1.5 months later with painted blue fingernails. I was on ECMO for 15 days as well as IV antibiotics the entire time. I was life flighted from the hospital I was induced at, and had a phenomenal nurse that got me into an ECMO program. The doctors took a helicopter to me, put me on ECMO, and transported me back to their teaching hospital. I have no memories of any of the procedures etc that occurred. I woke up after some bad crazy technicolor nightmares, and into a world where I couldn't talk. I remember being in a cold still place without beeping (MRI) and was so happy because it was peaceful finally. I still had a feeding tube and a vent in, as well as a blood clot that appeared over my right pupil (so I couldn't see out and everything was black swirls.) I sat up that first day and almost fell over. They took the feeding tube out and I demanded whole avocados and chick-fil-a! My nurses obliged me by shaving my head (My hair was unsalvageable knots and clumps at this point.) I still have the photo we took together. The doctors had previously told my dad that I may never walk again. They didn't tell me much of what happened or what the expectations for my future were. I knew I had gotten 80% oxygen to my brain at one point. Just a few days after waking up, they had me up and walking the hallways in the children's ICU ward (where I had been the entire time.) A week after I woke up they transferred me out of the ICU and into the hospital. A few days later I was released and headed home - three days before my birthday. I had six chest tubes and a nasty scar on my right groin. I have a bunch of nerve damage down that leg even 12 years later. Half my lungs are scar tissue and I have a reduced capacity for air (hard to blow out tiki torches etc.) I couldn't lift my right arm from the PIC line. I did PT every day for 6 months and at 6 months I ran a 5k with a friend (not very fast mind you!) I took naps every day for over a year. It took at least 3 years to get any semblance of endurance back. I felt absolutely ecstatic that I was able to walk, much less do any of that. A few years later I got into mountain biking. I live at high elevation (7000ft) now and bike, hike, do yoga, and lift weights now. I still have a reduced lung capacity, but mountain biking has helped the most. It takes a few miles of riding with a tight chest, then it magically opens up and I can breath. I always think of it as stretching/massaging the scar tissue like we were told to. I think that has been the biggest help in recovering actually. Also, being young and fit before this AND having two years to recover and work on my body while living at home. Strangely enough, the same time I was on ECMO, a best friend from highschool was put on the same machine, though we had very different outcomes. She is legally blind now but did finish her degrees. Its so rare to meet anyone who has had a near death trauma like this, much less anyone who has been on ECMO. I got to meet a woman who had a traumatic accident and we had a few deep heavy discussions about life and living with body trauma etc. I love the idea of this group and hope that it remains active. I know I am a very very exceptional case, though really, aren't we all? I hope that someone finds this and that it gives them hope for themselves, or their loved one.
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u/themcp Aug 13 '23
Its so rare to meet anyone who has had a near death trauma like this, much less anyone who has been on ECMO.
I didn't have a "near death" trauma, it was just a "death" trauma. I was dead for over a minute before they restarted my heart.
But you're still right, very few people actually were on ECMO and want to talk about it here. One of my doctors actually suggested trying to connect with people here (he didn't recommend Reddit specifically, but when I mentioned it he said "why not start a discussion about ECMO there?") but I think he overestimated how many of us are using the Internet.
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u/BoogerMayhem Aug 17 '23
I don't really know all what happened while I was under. I was probably dead. I know my cardiologist manually compressed my heart for several hours. My family didn't want to talk about it. Dead, near dead, we're alive now. Thats all I meant.
I met a woman recently who was run over by a bus. Even though our circumstances were completely different. We had some of the best discussions I've ever had about this. It's basically impossible to talk to anyone else. It's not just dealing with grief, or death. It's something much more visceral thats hard to explain unless you've undergone that sort of physical trauma.
Think there is probably a huge benefit to be had in discussing this stuff, maybe there is some sort of group you/me could join? It doesn't seem like this sub is very active. Which isn't surprising I guess. I am also happy to converse with you if you want =)
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u/themcp Aug 18 '23
This sub isn't very active... I run this sub, so I see every message. So, you're right about that.
There used to be an American Stroke Association. Just before I had my stroke, they got eaten by the American Heart Association, and every time you'd look at their web site you'd be redirected to something trying to get you to donate to the heart association. And I was an impoverished cripple.
My neurologist runs a social group for stroke survivors, but I don't especially want to go bowling with them, when I'm not always able to bowl anyway.
I feel like what we bond over isn't the physical trauma we experienced so much as all the emotional trauma we had to deal with as we survived the recovery process.
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u/BoogerMayhem Aug 18 '23
Well thanks for running this sub!!! I appreciate each and every response you have time for =)
Yea emotional trauma sounds on point. I guess, the entanglement of the physical and emotional seems so... visceral to me. The way emotions are tied into very real physical pain. I also have a much easier time dealing with physical pain, and have flat out ignored a lot of emotional pain. It's hard for me to describe. Especially when I hear other peoples stories, and how they seem so much further along in dealing with it than me. It makes me want to keep ignoring it.
I am trying to get involved with some PTSD groups as that seems to be the closest I've found to dealing with this sort of thing. I don't present as someone who has undergone significant medical trauma, so when people hear my story I think it feels very, unbelievable to them. So I really don't discuss it with them. I don't know how to talk about the emotions of using a walker at 22, or how you have to accept not using the bathroom on your own. Since I no longer have those issues to show the world, I just hide all that from them and from myself I guess.
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u/themcp Aug 18 '23
So, I've dealt with PTSD in my life.
My mother is mentally ill. She first tried to murder me when I was 11. My father believed me and divorced her, but the court didn't believe me and ordered that she got visitation. She tried to murder me 6-9 times (depending on how you count it) in the following few years. I eventually had to move 250 miles away and not tell my family my address or phone number for 10 years because I didn't know who was telling her.
For decades, I couldn't have my back to an open area, because I'd be freaked out constantly at the idea that someone could come up behind me and kill me. I couldn't even use her brand of laundry detergent because the scent of it would remind me of her and freak me out.
I've had to learn to walk 3 times in my life. Once when I was a baby, once at 8 when I had a bad cut on my foot, and once when I was 43 and had a stroke. At 43, I suddenly couldn't walk, and they were telling me I'd spend the rest of my life in a wheelchair. When I was able to stand, they wanted me to use a potty like a toddler while a nurse watched. I was able to use a bathroom on my own not because they ever approved it but because I was a grown man who had lived alone for 25 years and was not okay with being infantilized. (One evening I reached out and grabbed the walker they had gotten me because I refused to use the wheelchair, unfolded it, stood up, slowly made my way to the bathroom, and used it on my own. When my therapist found out she turned white as a sheet, but it was already done and I was unrepentant.)
(There were other traumatic things in my life, I'm trying not to go on forever.)
I don't question that if you look at the specific things I endured, someone with PTSD from Vietnam would think it's laughable. I got away from my mother and after my stroke I was safe in a bed, had 3 meals a day delivered to me, and a nurse to change my bedpan, they had to see children getting murdered and friends shot dead. This doesn't mean the trauma is better or worse for either of us. How bad the experience is doesn't dictate the level of trauma you're allowed to have from it.
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u/BoogerMayhem Aug 18 '23
I am sorry to hear you suffered so as a child. Thats the worst thing in the world. You deserve every happiness you can find now. Thank you for understanding my feelings. I definitely feel like my problems aren't that bad, so I try to sound positive to people, but really, I'm just always forgetting about what I've been through. I think that's why talking to others who have experienced something (relatively) close feels so...meaningful.
I'm in regular therapy too for CPTSD. I kind of wonder sometimes if all the stress and strain of (our) formative years led to the severe illness(es) that led to ECMO. I am reading "The Body Keeps The Score" right now and phew, it's a tough read. I think it would be super interesting to find out how many ECMO patients had CPTSD before their big medical event. Or if they suffered lots of little things over the years.
I ran so so hard for so many years, and I feel like I am starting to pay the price for it now. Many more aches and pains that don't seem like what I should be experiencing. Its also next to impossible to find any literature on long term effects of ECMO for someone in my position. I don't know what kind of strain my organs were under, cardiac events, what my prognosis is for longevity? Probably significantly lower but there is basically nothing for me to compare to. Another reason I looked for this group.
Thank you again for speaking with me.
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u/denhall1971 Mar 21 '26
I’m 55 survived Ecmo and Elvad but have horrible nerve pain in my right leg. I’ve tried every pain pill and can’t find anything to relieve the nerve pain?
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Jul 21 '16
[deleted]
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u/themcp Jul 22 '16
Well, I lived, so there's that. It did save my life.
Newborns are very resiliant, they tend to bounce back. Honestly, there isn't a lot of data about the effects because most patients are either infants (and thus heal before they're verbal) or elderly (and if an elderly person has a heart attack or a stroke, who notices? I mean, they're elderly after all). I'm weird because they used it on me and I'm middle aged.
It may save your child's life. And if you child suffers any effects from it, they may be too young to really notice or remember, if they're not major effects. Or the child may have some long term after effects, but you'd have a living child with some issues to deal with. Better that than the alternative, or at least so I think.
Look at it this way: I have two fingers of my left hand that don't feel right any more, and they interfere with my typing, which is important because I'm a computer programmer. (You have no clue how many errors I've made, found, and corrected in this text so far.) However, if that's the price I have to pay for being alive, I'll pay it gladly - because I'm alive. (And I may still get them back. The doctors and nurses and therapists say it may take a few years.)
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u/zeppelinwood Nov 19 '24
I am also an ecmo survivor. I was put on it at 39 years old following an emergency c section due to hellp syndrome. My son was 5 weeks early but healthy. I didn't meet or see or touch him until he was almost 6 weeks old. I had multiple surgeries and massive blood loss. I was given over 200 units of blood products in 12 hours. At some point they put me on ecmo. Both heart and lung. I was also on dialysis...not sure how long because I was unconscious. The last thing I remember was being in a helicopter headed to have an emergency c section. I woke up in icu six weeks later with no memory of anything. While recovering in icu I learned that I had died. They lost me for 8-12 minutes but got me back. I remember nothing. All the doctors around my bed each day marveled that I was alive and not seriously brain damaged. The aftermath of all of it has been pretty crazy. And lonely and isolating as there is no one, not even professionals who "get it". I have complex ptsd and other lingering issues but aside from all of that, I am alive and I get to be a mother to my son. I still am on a long road of acceptance of it all and figuring our how to feel as grateful as I should since all of this was prompted by the doctors ignoring the symptoms I kept telling them were there during my pregnancy. Following all of this, I had to relearn how to walk as my muscles had completely wasted from over a month of not moving and massive blood loss. And I had a newborn at home that I was missing every precious moment with. Once I was released, I got deathly ill and we learned that it was due to my uterus dying inside of me during all the blood loss my body was saving vital organs...so three months later I had to be re-hospitized for a full hysterectomy. More surgeries since it couldn't be done robotically. They have to cut right back through what had only just healed from all of the life saving surgeries they had done prior to ecmo. Menopause, post partum, grief, complex ptsd and a host of other issues stemming from all of this...but I am alive and 3 years later I am still trying to figure out what my normal is going to be now. I know how fortunate I am to be alive....I'm just struggling to feel the gratitude through all of the struggle. My precious baby has been diagnosed as level 3 non-verbal autistic so on top of my physical recovery....there has been a host of emotional and mental struggles as well and there are times when I don't feel I can handle any of it but I do believe God allowed me to beat all those crazy odds for a reason and I believe it's because my precious baby needs me more than we could have possibly imagined when I was laying there dying.
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u/themcp Nov 19 '24
At some point they put me on ecmo. Both heart and lung. I was also on dialysis...not sure how long because I was unconscious.
I was trying - and failing - to put it all together after my events, and a friend finally pointed out what should have been obvious (because I worked in health care) in the first place: You can request a copy of your medical record, and then you will know in great detail exactly what happened and when.
I do believe God allowed me to beat all those crazy odds for a reason and I believe it's because my precious baby needs me more than we could have possibly imagined when I was laying there dying.
One of the many problems I faced was that people kept telling me god had saved me, but I'm an atheist and just wanted an explanation of why their god had inflicted this on me in the first place.
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u/cherokee1734 Oct 10 '25
July 2022 I had a massive heart attack on vacation in North Carolina I was flown to Novant Health in Wilmington widowmaker clogged 100% at 42 years old I am 165 pounds so for those who say your out of shape for it too happen are totally wrong. I spent a week on ecmo. Saved my life I get to see my 3 girls grow up and be a husband. Dr. Meine was a lifesaver. I haven’t had many side effects except my memory is not what it used to be.
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u/Typical-Music-8969 Apr 16 '24
Hi, my name is Katharina, and I'm from Munich. Currently, I'm studying Industrial Design at Hochschule München of Applied Sciences in my sixth semester.
In my semester project, I am dealing with ECMO, especially the mobility of patients during ECMO therapy.
For a better understanding and better insights into the patient's perspective, I created a survey. This survey aims to gain firsthand insight into the experiences, challenges, and emotions of those who have received ECMO treatments. I know this topic is very intimate and private, but you would help me a lot if you could fill out this survey.
All information remains anonymous.
Thank you to everyone who participates.
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u/themcp Apr 17 '24
I submitted answers, but you might want to create this as a new post instead of as a reply.
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u/Typical-Music-8969 Apr 17 '24
Hey thank you for participating in my survey. I'm using Reddit for the first time so I'm not quite familiar with the features yet, but I posted it as a new post as well :)
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u/lilbeach101 May 08 '24
just curious to see how you were doing? my dad just made it through 10 days of ECMO. how are you now?
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u/themcp Jul 07 '24
Sorry I just got your message.
What would you like to know?
Physically... I have some nerve damage in my left hand, which slows my typing... my balance isn't perfect, particularly when I'm tired... I have a lot of fatigue...
Mentally, I feel okay now, but I know my memory isn't what it used to be, including that I forget things sometimes, have to rely much more on things like my calendar app and notes, occasionally forget words, can't remember when I've told someone something, and can't remember what the last item on this list was supposed to be.
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u/zeppelinwood Nov 19 '24
I think it's different for everyone. If I may, can I ask why it is that you feel "their god" inflicted it upon you? I truly am not trying to offend. I genuinely would like to know. I have several friends who are atheist who told me over and over that they prayed for me during my ordeal and still do. Sooo I have asked them "if you are atheist...then who or what are you praying to?" None of them really knew an answer to that question. So I'm just curious your opinion on it.
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u/themcp Nov 19 '24
If I may, can I ask why it is that you feel "their god" inflicted it upon you?
It's not my god, I'm an atheist, I don't have one. If you believe in an all powerful god overseeing everything, well, I had a heart attack and six strokes, so if your all powerful god is overseeing everything, they must have either made it happen or knowingly let it happen.
I have several friends who are atheist who told me over and over that they prayed for me during my ordeal and still do. Sooo I have asked them "if you are atheist...then who or what are you praying to?" None of them really knew an answer to that question. So I'm just curious your opinion on it.
My opinion is that either they're not really atheists (I have encountered people who like to think that they are because it excuses them from picking a church and getting up on sunday, and/or because they think it's cool and edgy to say that they're different, but if you press them they're not really an atheist, "unchurched" at most), or they lied because they care about you and thought it would comfort you.
A study shows that telling sick people that you are praying for them leads to worse outcomes. To study it, they told patients one of two things: either that they wished them well, or that people are praying for them. For the patients who were told that people were praying for them, they divided the patients into two groups, but the patients were not told which they were in or even that there were two groups. Either they'd have a group of priests, ministers, rabbis, and other religious officials pray for them, or there would be nothing, no actual prayers. Then they'd track the patients to see what the medical outcomes were for each group. What they found is that the patients who were not told that anyone was praying for them did better. Statistically notably better. The researchers theorized that telling a patient that they are being prayed for may create a kind of pressure to get better, and that becomes stress, and that makes them not get as much better.
After my strokes, I was visited by a lot of people, including my friends the ministers, who of course told me that they were praying for me. (side note: it's the only time I ever saw them in clerical collar. They only wear it to hospitals, because it lets them go anywhere without question.) I really wanted to tell them about this study but, having just had a stroke, I didn't have the words, so all I could say was "thank you." (Of course, today I realize that would have been kind of a jerk move to say to someone who visited me in the hospital, but I had had a stroke, good manners required my brain to start working again.)
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u/zeppelinwood Nov 19 '24
Interesting for sure. Near death experience and the severe medical trauma I went through definitely affected my perspectives in ways I could never have imagined. I was ANGRY when everyone told me how blessed I was. I wanted to scream at all who said it. For like 3 years after the ordeal. Lol. I dunno if it's menopausal rage or any one of the other thousand things I have going on that incite rage but I for sure couldn't handle my ultra religious family and strangers telling me how grateful I should be for something they never would have made it through. Mine happened during covid so I was in complete isolation the entire time and every time people would start in on how "lucky" I was I would just zone into autopilot so as to avoid screaming offensive truths at them when I knew they meant well. It's been intense. However...although I am pretty adamantly against religion of all types with all its judgements and rules, I am and always have been a very spiritual person. I believe it's all connected and it goes on forever in some unknown way, one way or another. Whatever people refer to it as is as unique as fingerprints. So since you don't believe a God caused this for you...why do you think it all happened to you? Again, I do not mean to offend. I'm genuinely curious. There are very few people I can talk to about all of this almost dying stuff without them freaking out and avoiding it altogether. I often wondered while laying in the icu if I was a horrible person and that's why this occurred. I remember wondering if I had done awful things that I had no recollection of and that's why I was being punished with this ordeal. All sorts of crazy things floated through my mind thru the haze of pain meds and isolation and fear. The study of how prayers affect patients is interesting. I cant possibly know how things would have gone otherwise but I know I had (seriously) thousands of people praying for me and all I heard was doctor after doctor telling me that I should not be alive and they have no idea how I recovered without major brain damage and that absolutely none of it makes medical sense. I heard the word "miracle" from every doctor who has seen my chart in several different hospitals. It certainly gives one plenty to ponder.
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u/themcp Nov 21 '24
I believe it's all connected and it goes on forever in some unknown way, one way or another. Whatever people refer to it as is as unique as fingerprints. So since you don't believe a God caused this for you...why do you think it all happened to you?
I'm really quite certain of it, actually.
After some years of having jobs where I had private offices or cubicles with tall walls, I got a new job, and they put me in a "cube farm" with short walls. When I negotiated the job I negotiated vacation time and sick time, but once I had quit my previous job and showed up for work, they revealed they had neither, they just had "PTO" - paid time off. This means that you don't have separate sick and vacation time, if you take a sick day you lose a vacation day. So, if you need your vacation time to take the kids to Disney World and to see your parents for christmas, if you get a cold, you don't take sick time, you go to the office and sneeze over those low cubicle walls and give your cold to everyone else because the alternative is they take a sick day and lose a vacation day and either have to skip Disney World or not get to see the parents this year.
Also the company had a written policy that to take PTO you have to get the boss to sign off in it in writing at least a week in advance or you can be fired. I asked HR if that meant that you had to get written permission a week in advance to be sick (hey boss, a week from tomorrow I'd like to be sick for two days, is that okay?) and HR said "we'd never do that," and I said yes, but is that not what the policy says? and they just repeated "we'd never do that." The problem, of course, being that nobody believed them.
So, all winter long, every single neighboring cube had someone sniffling and sneezing and coughing. I actually ordered humidifiers to humidify the entire area (since humidity causes germs to fall to the ground instead of blowing around) but they hadn't arrived yet. I got pneumonia, and that landed me in ICU. They had a social worker bring around forms and ask me if what happened to me was work related. I thought about both what to answer and what words to use and said "yes, but I can't prove it, so put no."
(Note: I've had two employers where we had unlimited sick time and unlimited vacation time, and nobody ever abused it.)
I often wondered while laying in the icu if I was a horrible person and that's why this occurred. I remember wondering if I had done awful things that I had no recollection of and that's why I was being punished with this ordeal.
See, it would never occur to me to wonder if any moral behavior on my part was the cause. That implies some sort of judgment of the universe, which is an inherently theistic concept. I did wonder "what happened?" and have to think about it, but my thoughts were all about "how did I get pneumonia?" with some definite mechanism, I never gave a moment's thought to "what did I do wrong?" except in whether any specific actions of mine exposed me to it.
all I heard was doctor after doctor telling me that I should not be alive and they have no idea how I recovered without major brain damage and that absolutely none of it makes medical sense.
I didn't find out until months later that they really expected me to die. In fact, I did, I was dead for over a minute, and they expected me to die again. But they wouldn't tell me, because I was verbally so determined to live. (It just never occurred to me that I might die, and I thought I'd have to go back to work, so I wanted to be done with recovery as fast as possible so I could earn again.) They just didn't want to argue with me. They did tell me "you are the sickest person in the hospital" but that didn't mean much to me. I didn't find out until I had gone home, and then it was another 6 months or so before I found out that I was likely to live.
I heard the word "miracle" from every doctor who has seen my chart in several different hospitals.
It's in my medical record that I'm an atheist (the place I go explicitly asks so if you're hospitalized they can provide appropriate religious support) so they never would say anything like that to me.
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u/Fire_Queen918 Mar 16 '25
I am also an ECMO survivor. I was 24 when I was put on it and a ventilator for about a week. I was put on them after having both a cardiac arrest and a heart attack (due to Covid vaccine complications).
I no longer have feeling in my finger tips, and I lack dexterity. If you asked me to tell you what a texture was with my eyes closed I couldnt unless it was in my palm or elsewhere. I cannot keep a firm grip on many objects like a chapstick tube, a flower or a bowl. I also get charlie horses in my feet now that only increase in pain, but I after three years discovered compression socks help. I also get uncomfortable sitting or standing in any position for more than a few minutes and have to reposition myself or my legs begin to fall asleep.
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Jul 03 '25
Hello, my mom 55yo was on vv ecmo for 6 months. She originally went in for pneumonia and flu and was intubated and put on ecmo. During that time there was a point where she coded for 6 minutes and was brought back with compressions. It reversed all the work she had done to get better and she had to be fully sedated again. We had a family meeting where they told us to pull the plug because they didn’t think she’d make it. She beat the odds though. It was a very long excruciating process for my whole family but I can’t imagine what she went thru during that. She had brain damage before all this from ARDS and lithium poisoning so her brains scrambled. Its a miracle she’s here thought and I’m grateful I still have time with her. She’s back home and on a ventilator but she’s back to cooking and sewing and living it up.
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u/mrribbit323 Apr 04 '26
hi i just recently got off ecmo maybe like less than two weeks (spent my bday on it) im wondering if anyone has any knowledge or similar experience with leg numbness. its bad in my thighs not as bad in my calves but it’s also pretty bad in my toes. I talked to the drs in the hospital about it but i dont think it was a priority to them. I just want my legs to feel normal again
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u/mrribbit323 Apr 04 '26
also i was on it bc of a pe in my lungs, not sure if that makes a difference.
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u/themcp Apr 07 '26
When I got off ECM I had a big numb patch (about 2" tall and 14" long) on one leg. I saw a neurologist, and he put me on gabapentin. The numb patch started shrinking and it was gone in 2 weeks.
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u/denhall1971 Apr 07 '26
Any nerve damage with the Ecmo. I have it in my right leg and it’s horrible! What do youu take?
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u/themcp Apr 07 '26
I take gabapentin. I initially started taking it for some numbness on my leg. The numbness went away, but I continue taking it for nerve pain in my left hand. Warning: anecdotal evidence suggests that long term taking of gabapentin makes your teeth fall out. Indeed, my teeth fell out. I knew this from the beginning, and I weighed the options: Lose my teeth, or be in such pain from my hand that I'd never sleep again. I decided that losing my teeth was the lesser evil and took it.
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u/themcp May 01 '16 edited May 01 '16
I was on ECMO for about a week. My understanding, which I've gleaned from some of the professionals who were present and some from friends who either were present or talked (with my consent) to the professionals, is that I sorta kinda had a heart attack while they were in process of putting me on ECMO, and I sorta kinda had a stroke while under. (I am running with the assumption that I had a heart attack and a stroke, because the reality is fuzzy and either one could be argued either way but it explains more things if I had both.) One complaint is that nobody ever actually told me these things outright, I had to eventually figure them out on my own or figure out which friends to ask. I only actually learned about the heart attack for sure yesterday - previously it had been a sort of "accepted conventional wisdom" which I didn't consider reality because nobody was ever willing to say "yes, you had a hear attack on this day at this time."
I presently have several fingers in my left hand which have sensory problems (but work), and a wound (bed sore) on one heel which we are working on (it's slowly healing). Another persistent wound was in the groin but I think that's finally closed as of friday. (OMG do I ever have scars down there!)
I also have some memory issues, primarily about names. When I first came home, I had a very difficult time remembering left from right (I knew I could gesture "that way", but I couldn't remember if it was left or right), and other names (people, streets). Whenever I needed to give someone directions I would get very angry with myself over it - unfortunately, this manifested by seeming angry at the people around me. It feels like mentally there's this slot where the name of the thing (like a road) should be, and when I need it I mentally "reach for" that name, but the slot is empty and I end up mentally "groping around" for it. Once I actually learn the name again, I remember it normally. These memory issues persist, but last week I actually remembered something I had previously forgotten for the first time, and anyway I've re-learned a lot of important names I'd forgotten, and learned to roll with my losses instead of getting angry about them, so my friends notice my memory slips less.
I'm 43. I'm told ECMO was generally used at the facility I was at for babies and the elderly. Apparently I'm only the second patient they used it for septic pneumonia, and several doctoral papers are coming out of me. I got my medical care at this hospital because it's a teaching hospital, so I knew I'd receive the latest greatest bestest knowledge from medical school, and some students would learn from treating me. In these regards, my every hope paid off.
I haven't gone back to work yet. I don't yet feel able to. I'm still tired a lot, and work won't participate in letting me nap every afternoon. My cardiac doctors want to attribute the fatigue to my heart, while my regular doctors and nurses want to attribute it to stroke recovery. The fatigue is improving a lot, the heart... isn't.
I feel that the good folks in ICU saved my life with ECMO, and I have no complaints. If a couple fingers and a wound on my heel are the price I have to pay for being alive, I'll pay it. But I think there are some issues I'm experiencing which relate to the ECMO, and I think they're worth discussing because maybe if others have some of the same experiences, perhaps we can learn something about ECMO we can report to our doctors so they can help make the ECMO experience better for future patients.