This is a transcript of an actual conversation with the vascular surgeon during a follow up appointment. More than a year later I realized I had only assumed what happened and never asked why I lost my leg; becoming a left leg above the knee amputee. This conversation was in May 2022 and included myself, my husband, and the the doctor. For obvious reason I will not use the name of the doctor, and will refer to my husband as only my husband. The conversation will be transcribed exactly as discussed, so I apologize for any repeated words or improper english and terms that may be used. Please keep in mind this may include graphic, disturbing, or sensitive information.
I became an amputee March 16, 2021 after complications from a blood clot in my right leg. After two cardiac arrests on March 11th, an ECMO machine was used as a form of life support on my left leg, resulting in lower limb loss. I was unaware of any of these happenings and woke about two weeks later as an amputee. I discuss that experience in my earlier blog Waking As An Amputee.
After examination, the question is posed:
ME: And then the only other question I had, I said, I've never asked, uh why my leg was amputated.
DR.: Oh, that's that's good. Well, you know as a, a life saving measure you had to receive ECMO.
ME: Umm, umm
DR.: And and ECMO, uh goes in through a big tube. The machine to uh, uh restore your blood flow. To basically maintain like a bypass machine, a heart lung machine, and it does have a large tube that was put in emergently by the; I do not know whether it was done here, or was it done in the other hospital.
ME: Well, Emory did it but at the
My Husband: Emory did it but
DR.: The other hospital
My Husband: At the other hospital. They came over cause
DR.: Yes
My Husband: The other hospital don't know how to do it.
DR.: Yes. So if, uh, at that time of course you were in extreme so they had to do this and it goes through a, you know, the arteries (doctor looking around), I don't have a diagram.
ME: Umm umm I know, it, uh, some of the rooms have it.
DR.: So lets (doctor starts drawing), in the belly, this is kind of how the arteries go down to the legs. And then it goes like this, and then branches down, and if you can imagine outside this the human; this is, how the human body is and these are the groins.
My Husband; Where's the legs?
DR.: Here
My Husband: OK there's the legs.
ME: OK
DR.: So this is how it is, so in order for them to do the ECMO, they have to kind of put the machine that will take your blood and bring it back and that machine has those big tubes (doctor still drawing). OK
ME: Mmm, umm
DR.: Two tubes. So these tubes, they had to put em here (drawing into the abdomen area and leg area). And by doing so, and that is the time, you did have a bunch of, eh, issues as a result of that. Including issues of bleeding, your, you don't know, you know (doctor pointing to me as not knowing and pointing to my husband as knowing), having to go inside the belly, and that's when I got to meet you. Um, as part of an emergency surgery to see if this has, this big tube has caused bleeding inside the belly. As a result of the blood thinners you were on and the other thing at that time when I met you, this tube was obstructing the blood flow going down, cause it was just carrying all the blood, and it's a big tube inside the small, inside a small tube. So basically preventing the blood from going down. It was just kind of taking it to the important parts of the body; the kidneys, the heart, the brain, and everything. So this was the organ that was deprived of blood during the, the, during this resuscitation events, and at that time you were on a lot of medicines that will were contracting your blood vessels. So even, whatever blood was leaking going down to the leg, that was also obstructed further because the medications that you were on to maintain your blood pressure. So, when I met you that first time of course the concern was to get you through that operation that was for bleeding and stuff what I did notice that there was limited amount of blood flow going through the leg. But there was no ability for us to give you blood thinners, additional blood thinners because of the situation of bleeding that you were in. And that's why we we understood that your leg may not survive this thing but we kind of find the balances (unintelligible). Thank you for asking that question.
ME: Yeah, I never asked and uh, somebody called me from here about and ECMO study and I'm like, but what does this happen often from ECMO and then I'm like well was it from ECMO, I really don't know. I've never asked.
DR.: It is from ECMO. It is one of the ECMO, known ECMO complications. The price for ECMO, yeah.
ME: OK, OK
DR.: You know, we're knowing more about it over the last 10 years, of course you know, the ECMO complications, how many people get, survive ECMO. That's not, the majority of people do not survive it.
ME: WOW
DR.: And, uh, the, you know, group of who survive it do have issues with their arms and legs as a result of that.
ME: OK cause I would assume even, it's doing the job of the heart and lungs, so those things stop working that I wondered if that's what caused even the issue with my hand and foot like, because I know, you know, the lower extremities these things are further apart trying to get the normal work...
DR.: Yes, true, so they're not getting enough blood flow, eh, cause the body itself is concentrating on the blood flow in other organs. You're also, other, the patients is usually getting medications to increase the blood pressure by squeezing the blood vessels making them contract, so that gets why the organs the farthest from the heart and the least important organs, uh, become deprived of oxygen. And, third thing is that those devices are, that get put in are, uh, you know, they are put inside the blood vessels and cause damage to the blood vessels.
ME: OK, at least I know. Wow, I didn't know the majority of people don't even survive ECMO so that's pretty, that's pretty (nervous laugh), pretty intense. I tell, I told her the more I learn about it, it's kind of shocking. Just looking up, when I look up ECMO and it's like, you know, of course I don't know what happened right, and so I can only go by what they tell me. But when you read the first thing you see is like, you know, a form of life support, it's just, it's shocking.
DR. It is, you know the idea of ECMO is made as a temporary life support for people during surgery, you know when we stop the heart to operate on the heart. And then, you know, we said well can we sustain people on it for a longer time when they are in a catastrophic problem, when we cannot do it. So, and it is a, it is a hard thing on, you know, patients, families, and our staff because we cannot see this, and you know, but we're doing this and it's not helping people. People are, you know, we do this and people still don't survive it and why are we doing it? And then, but it is, it is one of the most rewarding thing is when we see the people who do survive it (laughs and smiles).
ME: Right (laughs and smiles)
DR.: And, uh, and uh that kind of makes the number of that undergo it, uh, more justified for us.
ME: OK. What are the other options? Like if you didn't have, if there was no ECMO I guess, does that lessen the chance of survival, or...
DR.: Zero chance.
ME: OK, ok (nervous laugh), that's pretty...
DR.: Yeah, zero chance. So that's why for us, you know, take the zero chance or take that, you know, 20% chance. With all the investment of the, you know, the number of people involved in your care, and in the care of other ECMO patients is massive. Uh, so is it, the question always, is it, uh uh um, is it, is it a, an and, how much of of that is putting patients through this for a low chance of getting through it. Is it, is it something that, and at that time, you know, patients are not there for us to have the conversation with them right?
ME: Right, right (nervous laugh)
DR.: To tell them, and this the family are usually in severe shock and are in a, in a horrible uh psychological condition for us to kind of have a sit down like this to talk about it.
ME: Right, yeah, yeah, that's, that's yeah (thinking). So its not, I guess its not, its really a decision just made by medical staff, its not made with the, like he (my husband) didn't have to make that decision right?
DR.: You know we, I, I'm sure the doctors with the other hospital did talk to you (my husband) about the situation that we have to do things right?
My Husband: Yeah, yeah, I remember, you know, like you said, uh, you know, saying this needs to happen, you know, cause of the heart, lungs, you know, but at the same time remembering verbatim every word back then going through, like you said, a traumatic situation could be a little bit difficult. But I remember, um, when I was, they were at Northside in Cumming, and uh they called me and said hey, um, A. originally they were going to airlift her from there to here, um, cause they didn't how much, you know, time they had cause obviously the clock had moved. Um, and then they said someone's actually gone come from Emory and then there was a young lady, somebody else that brought us (my husband and my mom) in the room saying this is what they needed to do and tried to, you know, explain what it was right. And, and then said ok (laughs), is that what you want to do? I'm like uh, do I have a choice, they were like no.
DR.: That's the hard thing and then you're asking a family member do you want to do this or not, but we have to do it because if we don't do it, your loved one will not survive (laughs).
My Husband: Right, right, right
DR.: It's, it's a tough situation right? And it's, it's great that you don't remember the details (I laugh) because I'm sure its uh, its a hard, uh traumatic, uh situation you were put in.
My Husband: Yeah, yeah
DR.: So, you know, one thing is, you know, we may uh require your uh your help eventually, you know, eventually after you start walking and things to go talk to our staff. Go talk to the nurses and have them see you, and uh, you know, them seeing you in a not so good condition and wondering if, if you were going to make it through this and if its, you know, all of what they're putting you through is worth it, you know, it's hard on the staff, on the nurses, on the doctors, to see patients going through all this. So it's a very satisfying situation when we see people kind of doing as well as you are doing.
ME: Oh, that's. that's good. How many, how many, or do you even know, like how many surgeries you performed on me? Like, the was this...
DR.: I don't remember, it's of course in record. I, I met you and, you know, they they called me and said, you know, somebody is bleeding massively and we're going to the operating room right now and I did rush and you were in the operating room when I did come in to meet you. At that time, you know, there was that surgery, and uh (sighs), and I do remember putting the filter in you (laughs), that was in the middle of the night too. And, I do remember also having to uh correct the bleeding situation in your, in your groin after this big tube was removed.
ME: Ok
DR.: Cause, you know, it's removed the arteries has a big hole in it. So, and then you know, doing the amputation (laughs), and then removing the filter. So, many, many surgeries for me and other people did other, you know, similarly a large number of uh, of surgeries, so, you had many surgeries.
ME: Yeah
DR.: You're doing super. We're very proud of you. We're very happy. I know it's hard. I know what you go, what you went through is very hard. And, you know, what you're going through now is very hard now as you try to resume your life, and...
My Husband: Yeah I think it's real tough because um, I'm not gone say one thing but, have, being an above the knee amputee versus below the knee is dramatically different when it comes to gaining her mobility.
DR: Yeah
ME: Um hmm, um hmm
My Husband: Uh and and that's, you know, a big big, you know, thing for us is, you know, hindsight 20/20 is, you know uh, I just wish it could've been a below the knee.
DR: Yeah we also you know, that would have been much better. I was more concerned, you know, I was....concerned that this was not gonna even heal because the muscle at the time we did it did not look good even at the above knee amputation, so sometimes we do have to even go to a higher level at the hip, so so yes absolutely a below knee is much better. Well, you know, saving the leg is better than not saving the leg.
My Husband: Yeah, yeah
DR: Below knee is much better than above knee and then above knee is better than a hip, a hip uh amputation, but you know, this is a...
My Husband: Where we're at, right.
DR: the complication of the uh life saving measure you had.
ME: Absolutely. I mean I do understand that, believe me. I, I'm (nervous laugh), I definitely do understand that point, so I, you know I'm, I, I'd much rather that than the other.
DR: Of course. I think, you know, I was very concerned about your hand too (laughs). Your hand is normal, I mean I, I just, so your uh, yeah, uh no I know you do and that's why I went through those details and um and uh about, you know, I'm happy you asked.
ME: Yeah, I just never asked.
DR: Rather picking inside your brain and not know about it.
ME: It didn't dawn on me until she was asking me the questions and I'm like, you know I've never asked why I had to have a amputation. I just just assumed it was because of ECMO and I knew I had to be on it so long, and then I knew the complications of trying to close me and then that couldn't happen because (sensitive medical information).
DR: Yeah, you were, you were a tough one, but uh you know, so again just consider later one when you're psychologically ready if you, if you want to come and meet people. Give em kinda a little, uh uh support and uh, and encouragement about you know, that what they do is meaningful. They would love to, they would love to hear that from a patient who's very articulate like you.
This conversation was very eye opening and scary to say the least, but I am glad to now have the understanding of how and why I became an amputee.
Comments