First post here after looking on as a guest here for years.
So I am writing something of an autobiography. I think it belongs here because this is the narrative of my sister and I being joined for about 4 years so far after a terrible situation left her and I with some non-functioning vital internals physically.
It wasn't like a Hollywood "cut 'em in half and join them together with stitches" operation. I'm not sure that is actually even possible for various reasons. But we do have some elastic tubing going to and from each others bodies. If we pull away from each other a little, we can stick our fingers in the gap between our chests and feel the tube coverings--Like, we did it like twice. It is so freaky. The openings were cauterized and the skin was covered with gauze for like 6 months. I was told our skin would 100% reject the other person's and not 'fuse' for some reason, but we still have to be that close to keep infection low. Something about the immune system is why we won't like actually join, like our skin...I think the doctors said.
Anyway, we've been 4 years and 1 month (and 15 days on 2nd February 2018) tethered to each other chest to chest, with less than 2 inches from her face to mine. I am 27, she is 24. She will undoubtedly chime in from time to time. She's not big into writing like I am, but because of our configuration, I find myself dictation to Siri on my mac often because typing around her waist gets tiring quick! Since she hears what I am saying, she often wears headphones, but can't help but "correct the parts I got wrong" as if we had a different experience through this whole ordeal... I guess we at least had to perspectives on things...
SO...We both have AB- blood type and after some various tests were found to be in the .001 percentile of the complete compatibility that it would take for such a miracle operation to take place. I am living off the oxygen she absorbs into the blood that my heart is pumping for us. So her heart is pumping at like 15% capacity (Still!) and my lungs were collapsed, punctured and ended up being 1-1/3 removed. My liver and spleen are both healed now, but badly mangled at first, and her large intestine was pretty mashed. All good now, 4 years later. Her heart and my lungs are still hugely disabled. I still can't remotely take a good deep breath.
We have had complications, but in summary, we have had to do things this way because both her and my bodies keep rejecting transplants, organs, blood transfusions... We've tried over a dozen surgeries with various donor parts and machines. We both keep rejecting pretty much anything...but from each other. Some, let's just say, 'unconventional' doctors had an idea that we all thought was worth a shot over death. It was fully paid for if we agreed to let them try. The rest is history! Well, I guess it's also the present...
Thanks to the doctors we found in California of the USA, we are the first case in the western hemisphere to have anything like this performed on humans.
This book is a goal of mine for 2018, but I wonder what sort of things people want to know? Like what was the accident? (It was an act of terrorism near home in London, England) Like what do we wear so we don't accidentally pull apart? or like do we work out? How long will we remain like this? Or how do we drive a car? (We don't. We Uber everywhere :P ) Or the burning question on everyone's mind when conjoined anything comes up... Sexual pleasures? Especially Being Opposite Gender?
Let me know. I know this forum is not super-hopping, but I will check here a few times a week.
-Samuel and Samantha Keep
P.S. Just call us Sam. Sam Keep
So here is one things that totally escaped my attention. Being in this situation makes it easy to overlook or assume things that wouldn’t be known for someone who’s never seen us.
Samantha and I are connected chest to chest. There is a “port” installed on each of us just under the sternum where there are 4 tubes running between us. It’s much more substantial than a port-a-cath that might be used for cancer or haemophilia (we have friends who has these).
Basically, starting from blood that is oxygen-poor on her side, it is pumped from her Superior and inferior vena cavae through tube 1 to my right atrium. Here is combined with the spent blood from my vena cavae. Once it is ready for oxygen, it is pumped from my my pulmonic artery to her lungs through tube 2. Then back to my pulmonic vein through tube 3. From here, it gets split 50/50 just before it reaches my aorta, where 50% goes to her body and 50% to mine, so through tube 4 is the half that goes to her aorta.
So the actual “port” is like a 3D printed plastic doughnut-looking, flanged disk thing that we each have one of. There is a bit of rubber casingthat goes from one to the other to seal it. The tubes are secured on each port so that if we pull away from each other, the tubes don’t just pull out and kill us. There is less than a quarter of an inch between us if we pull away just a little bit.
We have to sleep with a monitor, hooked up to a computer pad device so that if anything goes wrong in the night, we don’t wake up dead one day. ;)
The Port oozed for the first like 2 months, but now, it’s pretty sterile and sealed. We do have to cover it with plastic wrap to shower though. And use medical-grade soap around it that is anti-bacterial.
I don’t mean to bore anyone with unnecessary details. Let me know if I am long winded.
So, like I said. Not the Hollywood “Sew them together, they will be one” type conjoinment, but this really has affected every area of our lives. I don’t know what she’s thinking all the time, or fight for control over body parts, but we still have to make peace about things and agree on motions ahead of time and stuff. We are definitely one in the sense that we don’t really have individuality like before. It’s amazing how quickly that goes. I haven’t had a minute alone in over 4 years, and she hasn’t either (No duh...)
There are many things we had to really learn and be patient with... Like going to the bathroom. People ask about that often. Sleeping arrangement is actually still a huge issue for us. Samantha has a problem with space, and “feeling trapped,” or confined. She can’t sleep very well. Even after 4 years, she still wakes up every 45 minutes in a panic, trying to get away from me, “so she can breath.” I feel bad, because there is nothing I can do to help her.
We sleep on our sides, with body pillows behind each of us. The pillows are connected by a sheet between them, so they keep us from pulling apart in the night. We endearingly call it our “pontoon boat.” We also wear T-shirts cut down the neck to the port location because, when sleeping skin-to-skin, we get so hot and sweaty! It’s amazing how much heat we make together in the night. Shirts and sometimes towels cut down on this a ton!
Samantha says, “It’s not like I can’t stand you, it’s just that I feel like I just have to move when I am sleeping. Being forced into a position feels claustrophobic even if it’s comfortable. Just the fact that I can’t move when and where I want makes me panic.”
Yep. Her two cents. Somehow that’s supposed to make her look better than what I said...
She cares what people think. I couldn’t care less, but I don’t judge her. She is insecure about trying things that might draw attention, even if it’s totally fine or normal. Attention that could lead to embarrassment is not cool.
So we really, really don’t get out much. but I will say, since moving to the US for the operation, there are so many delivery services in the Bay Area of Southern California. We can get anything delivered in like an hour! It’s pretty great.
One time we did go to a park where a dog meet-n-greet was happening. It was a huge mistake. We asked the organisers if there was any way to accommodate, and they assured there way, but this was out of control. People asking us questions and we barely got to see any dogs. People in the park were flocking, and we basically had to leave after 30 minutes. It was overwhelmingly impossible.
I think next I will describe the accident and the operation (as briefly as I can, with what I was told for most of it.)