Aortic Dissection Survivor Story

Thank you very much. I'm Stefan and I had an aortic dissection back in November last year and life-saving open heart surgery was carried out here at Liverpool by Mr. Mark Field and his team. so this is a brief timeline of the events what happened to me so it took some time between when it first occurred to to surgery eight days in fact but this is my story exactly ten months ago today I had never heard of aortic section. Exactly 10 months ago today I was lying on a stretcher in A&E at Wrexham Milo Hospital. So what had happened? Well two days earlier I'd done some work in our loft and I'd been climbing up and down the loft ladder for several hours when all of a sudden I had a strong burning sensation at the back of my throat and breathing had become really painful. I was unable to inhale deeply and I took a half-hour break from the work I was doing. After the break I continued wiring up some sockets so I could turn the electric back on. I then had a shower and then I went to a dentist appointment despite feeling really unwell. I thought I'd inhaled some fiberglass dust and cursed myself for not wearing a dust mask. Or maybe I'd pulled a muscle in my chest from squeezing through a tiny loft hatch and crawling through really tight spaces between roof beams. That evening Sophie, my wife over there, offered to take me to A&E but I declined. I had a lot to do and work the next day so I went to bed early, didn't sleep very well, still felt awful in the morning but I went to work and struggled through the day there. When I came home on this Friday afternoon I went straight to bed because I was exhausted. I slept for four hours, got up at 9 p.m., spent the rest of the evening watching TV. I'd repeatedly declined Sophie's offer to take me to A&E. I went to bed late, didn't sleep very well and woke up at 4am tossing and turning but every movement hurt. At 6am Sophie woke up and heard my laboured breathing and suggested again I should go to A&E. I was still reluctant but I phoned up NHS Wales Direct and after 20 minutes of questions and answers I was told to let my wife take me to A&E and not to drive myself. So arriving in A&E I spent some time with the triage nurse very quickly and she told me that my blood oxygen saturation was at 84 I said well what should it be so she told me 95 to 100 and 84 was pretty critical. Sophie was with me at that time but she had to leave shortly after because we had well I should have been celebrating her month's 70th birthday with her but I couldn't go. I did a piece of work on my phone because of the work I do I work in digital and sometimes I can do bits of work switch something on digitally over the phone so I did that piece and I texted my boss saying tell the guy who we did this piece of work for that I might have been doing this on my deathbed. I thought I was joking. And luckily I was but yeah bit close to the bone really that evening so we're talking the Saturday evening the 19th of November I was moved to intensive care and in an isolation room because they just didn't know what was wrong with me an oxygen mask was given the maximum amount of oxygen they could give me but my oxygen saturation only recovered to about 90, so still quite poor. They were testing me for all sorts, bird flu, swine flu, maybe man flu, who knows, and I had about three or four drips in my arm and different antibiotics, three or four different antibiotics, but nothing was really working. So I've been asked questions like, have you been abroad in the last 30 days? Never been. Have you been to Africa I've never been to Africa in my life so there we are I was there and they didn't really know and it took a little while for them to find out but I had a positive attitude I kept my spirits high because I thought well maybe I am seriously ill and I don't want to spend the last couple of days of my life being miserable so the nurses kept saying to me you don't know how ill you are and I I suppose I didn't, but neither did they, really, because they didn't know what was wrong with me, still. And I still had my phone. And I continued. I mean, this picture on the left that you brought up earlier, that was me on the stretcher in A&E, having a bad hair day. And then in the center, that was me in the isolation room at the Rex and Milo in intensive care, and silly of me. But I was bald, so I took a few selfies and posted them on Facebook, as you do. Yeah, so they probably should have taken the phone off me. But Sophie and my friend Mike came to visit, and they had to wear these wonderful gowns and masks. Mike was with me on the day it happened. He was helping me with my DIY work in the house. Our girls, they sent me a lovely, or brought in a lovely Get Well Soon card. So unfortunately I spilled some water over it after and spoiled it, but at least I took photos of it. And I love this, Jessica, my daughters are Catherine and Jessica, and Jessica wrote this card saying, I hope you feel better soon, and I'm glad it's not too serious. Only little did we know. And I said, well, what did you put in my mouth? Well, I don't smoke. Well, what are you doing? Oh, no, no, it's a thermometer. all right okay yeah so I'll keep this up as I talk further because I haven't got photos for what comes next really yes on the Monday morning a cardiologist looked at me again and said there was a problem with the heart and I went for a Doppler scan then and then I was sent for a CT scan but that was still not conclusive and they said they would have to put a camera down me I would have to swallow a camera but that would happen the next morning so on the Tuesday morning I swallowed the camera and very soon they correctly diagnosed the type A aortic dissection so and then I was told you have to go to Liverpool you have to have a heart operation in the meantime and even the night before when the heart was already being mentioned and heart operation had already been mentioned to me, I phoned my mom in Germany to tell her I wouldn't be phoning for a little while due to having to have a heart operation and I also I went on my phone and transferred some money to Sophie's account to just cover Christmas expenses. But to be honest I never thought that I wouldn't come out of it alive at the other end, so for some reason, I never questioned that. But then, so when they told me you need to go to Liverpool, I suggested apparently, I can't remember this, I could drive myself, and they told me no, in fact it's too risky to take you whilst you're awake, we should sedate you and ventilate you before we can take you, and then the lights went out. So this next section I call the dark pre-op days because I don't know, not much of it is my own experience, it's from what I was told afterwards. So I got here live on Tuesday evening and Mark phoned Sophie to give her predominantly bad news and not much hope. I had a suspected chest infection so I couldn't be operated on immediately. I do in those days, well I do remember two things. One was I was woken up by a consultant, maybe the sedation knob was being turned on, I don't know what, but he was saying hi Stefan and introduced himself, can't remember the name, but what I'm going to do to you is really horrible and I'm really really sorry having to do this to you but I need to put this tube up your nose and into your stomach so we can feed you and I thought great. Well I probably didn't say anything but I was thinking that but But yeah, so I just went along with everything really. The other memory, well, on the Wednesday, Sophie came to visit me with her mum and Jessica. And I have no memory of this because I was just sedated and out of it. On the Thursday, my work colleague and good friend, Paul, came to see me and weirdly enough, I remember his voice saying, he had a message from Sophie. Sophie says she loves you very much. and when you get out of here, we're going for a curry and a beer. So I do remember his voice. So it's really strange, but I suppose afterwards I'm thinking, yes, where somebody lies their comatose, it's always worth talking to them, definitely. On Friday, I underwent the operation, 10 to 12 hours, somewhere there. And as Mark told me afterwards, I improved dramatically straight away after that. And then I went into, I'll put the next picture up, I'm just showing you photos, no graphs or infographs really, so I spent several days in the post-operative critical care unit and on the Saturday I was still out of it and I do not remember the visitors I had. Sophie came with Catherine and Jessica and my mum who'd flown over from Germany on the day of the operation. On Sunday Sophie, my mum and Jessica visited again. I remember, but I couldn't communicate. I thought I had communicated, I had my eyes open, I remember them being there, I remember them holding my hand and talking to me and I thought I would say things like okay or not or squeeze her hand but no apparently I didn't do anything like that. I do remember the conversation that Sophie had with the nurse asking her to hang up card that she brought with a photo of her and me and and our two girls and she would hang it up on the wall between the windows and I remember all this and I remember Sophie saying we're coming again on Thursday. She had to work. She had taken her previous week off but she had to work so I knew that. So the Monday and the Tuesday this is like Friday was the operation we're now Monday Tuesday on the Monday Sophie phoned the room and the nurse put her on speakerphone and she says hi Stefan how are you and I went okay or hello or something like this from under the mask and all she could hear muffled groan so but at least she had a reaction from me. And I was so thirsty all the time, but not allowed any water, then they came with their little sponges with them, and it was so thirsty. Can I have that sponge again, please? But, yeah. And I was waking up and falling asleep multiple times a day, and every time I thought it was a new day. And every time I woke up, I thought I was in a different room. And I thought, this hospital is really strange. Why are all the rooms called room 10, because I could see the number on the room door that was open, but I just, I was absolutely convinced, I didn't doubt my own perception that I was in a different room, no, I thought why have they all got room 10, this is crazy, but I was crazy. So it went on like this, and it got worse, I didn't even know was I dead or alive, I thought I had to do something special to survive, and I went through these cycles, something was winding up some sort of noise maybe it was a machinery maybe it was just a noise in my head I don't know but it went up and up and up and when it climaxed I would have to do something special to survive and that didn't happen like that of course but at some point I got really upset about that that it wouldn't happen because I was somewhere in between and I started crying and the nurse who came she she came up to me put her arm around my And she said, what's wrong? And I said, well, I'm trying to survive, but it's just not working. You just turn off the machine and let me die. And she said, no, don't say that. You're doing fine. You're getting better every day. You're getting better every hour. You've got a family to look after. You will live. I'm like, oh, really? OK, forget that. And it was a reality check. This was a pivotal moment for me, because it was a reality check that I needed to know that, yeah, I'm going to get through this. From then on, I was convinced. And yeah, I just couldn't tell the time or anything like this. And this has come off, but I'll put it back on after. So and then all the time, I was asking, is it Thursday yet? No, it's not Thursday yet. Because I thought, oh, man, I thought maybe somebody said a week on Thursday. Because surely it's been weeks since I've been here. But yeah, no, it wasn't. And everything was fake. I thought the whole machinery, the whole building was fake. I thought the whole building was a giant inflatable and the walls were contracting and extracting all the time. And the computers and everything, surely, they were just fake. They were just mock computers and a mock phone on the wall. But bit by bit, all these bubbles got burst and now these things are real. I even thought my visitors weren't really there. Surely they're not letting anybody in here. They were pre-recorded video recordings that they would, there was a holographic projection into the room that looked like they were there. Yeah, my brain wasn't working right, was it? But yeah, so finally, we got to Thursday. That day that I had been waiting for, longing for. And Sophie and my mom came, and that was brilliant. I had my first coffee that day. Oh, the day before, I went for my first walk as well, with a Zimmer frame and four people around me, very, very slowly, but I did it. And then on the Thursday, they came, had my first coffee, had my first solid food, and it was brilliant. I was over-enthusiastic. When my mum and Sophie came, I had another cup of coffee with them, and I was like, yeah, this is great. I was very, very happy about it at the time. Before that, I'd actually asked the nurse who was looking after me that day, said, I want to see if I can write something. you know have I forgotten how to write something down so I actually wrote something down I've lost a piece of paper but I remember it said today is December the 1st 2016 and I feel like I've been reborn because I did feel like that that day I was transferred to the CEDA ward and I was still confused no concept of time no idea really got up in the middle of the night unaided when just a few hours before I've just been on my first walk without a zimmer frame but still four people around me I just went for a walk on my own in the middle of the night thinking it was the middle of the next day completely confused but there you go it was great I had loads of cards as you can see from that second picture the first picture was still in the poco unit and then the second picture was me on the ward finally shaven and showered with my cards in the background. We had some fun on the ward. It was great to see other people and be able to talk with other people about what they've gone through and what I've gone through etc etc. There was also a little bit of an excuse of a Christmas tree that was put up and didn't even work but it caused some amusement in the room which was great. Visitors came, quite a lot of them. I had a number of setbacks. I fell over twice because of my blood pressure slumped down and yeah I just collapsed then on the routine scan CT scan before I could be sent home they found a PE pulmonary embolism so I needed to go on Warfarin had to spend another few nights in hospital couldn't get home I'd hoped to be home for Sophie's birthday on the 6th but I didn't make that so on the Friday I wanted to go home again was ready to go home but I collapsed again so I I needed to stay in overnight again to be observed and despite all this my fighting spirit saw me through and on Saturday the 10th of December I finally got to go home and that was me in the back of the taxi going home. Bad picture but yeah. And within a few days of being at home still feeling quite weak I started walking and I even I was home for Christmas this was great I was actually home two weeks before Christmas at some point we couldn't expect this and I even managed to get into town and do last-minute Christmas shopping I was very happy with that and so we we were glad to stick to our original social arrangements over Christmas and New Year that was brilliant to be able to go through with everything and in January we held a little party a buffet where we invited everyone who'd come to see me once I was in hospital either in Wrexham or here and that was a brilliant do because we put on a big buffet and everyone was was there and just everyone came to my invite nobody couldn't make it and that was brilliant and so we had a really good time and just to say thank you to everybody and I then went on in February I started cardiac rehab I started playing walking football with the old gentleman in the village which was great. By mid-March I went back to work just on two hours a day, gradually returned to work. In April I went on a golfing tour with my work colleagues and by the end of May I was back in full-time work and playing football on a Friday lunchtime again, not walking football, proper football, but yeah I'm I'm just very very glad not to consider myself very lucky not just to have survived but to also have recovered so well to be doing these things. Last month we went on a fabulous holiday to Italy where we did an awful lot of walking we walked over 100 miles in two weeks in the heat wave so the waterfall was really good and I even walked up Mount Vesuvius once we were there So that is my story. This whole experience has taught me that life can be incredibly fragile at times and must never be taken for granted. If you have any questions please do catch me over lunch. If you'd like to read my full story I'm happy to email it to you. This was the abridged version out of about 20 pages that I wrote up. So yes, thank you all for listening. I'm glad to have found this group, by the way. That's brilliant. Thank you. Thank you.