Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection
Well this is the second time to start writing this. The first was 2 months after my operation and that was just way too soon. I'm a 29 year old female who in July 2009 moved from the UK to China with my boyfriend. I never realised that moving to China would probably save my life. On November 15th in the early hours I woke from my sleep with pain in my chest that was most painful when I was breathing. This lasted for 15 minutes; I then rolled over and went to sleep. The next day (Sunday) I didn’t really think about it until the evening when I was telling my dad over the phone, we joked about it and that was it. This did starting me thinking and was concerned about having an emergency and not being able to get an ambulance (it’s not like the UK here where the cars move to let the ambulance through, they sit in traffic just like everybody else). On the Monday morning I thought about going to the drs then decided against it, but something inside was saying I should go. I was lucky enough to get an appointment that day and off I went. I saw an American Dr who really didn’t think it was anything more than indigestion; she gave me an ECG which was fine, but said she would do a blood test to rule out a blood clot. Thank god she did this. The next day in the afternoon I get a call from her saying that I needed a CT scan as the results were abnormal but that this is quite normal so nothing to worry about. I go for the CT scan the next morning, she looked at the scans immediately and said there was no blood clot and off I went. It was over and I worried about nothing. As I walked in my door however, I get a phone call saying that blood is going to places it shouldn’t on my scan and I need another study. Off I go still thinking that everything is ok. My boyfriend wanted to come but I was telling him I was fine and no need to worry. For the echocardiogram I had Chinese drs now, so for the next 30 mins there was lots of ums and arghs and looking at me very strangely. I still wasn’t worried, that was until they finished and I stood up and was told in broken English that I had a life threatening condition and needed urgent treatment. At this point I still thought it was the Chinese not knowing what they were talking about. I went back downstairs and saw my Dr who confirmed the situation. It was such a shock, I didn’t know what to do with myself. I called my boyfriend and obviously by now it was rush hour so it took over an hour for him to get to me. The Dr also advised me to call my parents, this was the one call that I didn’t want to make. Instead I called my sister in USA, it was the middle of the night there and told her, and asked her to call my parents. My main concern through all this was whether I would be going home for Christmas. We had flights booked and I remember asking the Dr whether I would be fixed in time to go home. Looking back now, she must have been thinking I was crazy, I would be lucky to be alive at Christmas let alone going back to the UK!
As I was in an expat hospital they don’t deal with such serious situations and so they tried to prepare me for the local hospital as there was no time for me to travel to HK or Singapore, I had to put my trust in the Chinese drs. I was told that it would be dirty and nothing like hospitals at home, but to their credit the hospital I was admitted to was very good. As I arrived at the other hospital I was whisked away into ICU and put on oxygen and hooked up to machines. I still didn’t understand what was happening as I felt fine and could breathe, why were they giving me oxygen, and why was I in a ward with people that were having blood transfusions, on breathing machines and unconscious? Both my boyfriend and I were expecting me to be operated on that night but with it being China things aren’t that straight forward. We first had issues in signing consent forms. I was not allowed to know what was going on from this point, so as to keep my BP low, my boyfriend and I weren’t married, and my parents were in the UK. In the end my dad had to fax over consent for my boyfriend to sign the forms. That night they hooked me up to many drugs and kept me stable, by now I was starting to feel ill. The next morning the chief surgeon came to see me and said that they would not operate until I had seen my parents, so my operation was scheduled for the following Tuesday (by now it was Thursday).I was devastated and just wanted it over, but in China they value the family and told me they need to be there at a time like this. My dad and sister were planning on coming over anyway, but to come to china you need a visa, and all these things take time. In the end my sister arrived on the Saturday and my dad on the Sunday. So we were all set for the operation for the Tuesday. On the Monday however my period started. The surgeon then postponed my operation for another week, I couldn’t believe it. That started the longest week of my life, I was extremely drugged up, confined to my bed and had a whole week to think about whether I would survive the operation. I've since seen a consultant in the UK and they said they would not have postponed for this. Throughout the whole experience I was something of a novelty. I was given a private room on ICU, and had visitors from other depts of the hospital and from other hospitals coming to review my case. I think because of this they were extra cautious in everything that they did. So fast forward to the operation. Everything went well, I had a few breathing problems in the days following the operation and struggled eating. Eating was the hardest thing I have ever had to do. I had my dad and boyfriend willing me on, and they thought I had given up, but I really hadn’t it was just really difficult. I was discharged from hospital just over two weeks after the surgery, and 4 weeks after being admitted. By now it was nearly Christmas and all my family were back at my home town in Wales, while I was here in China. My boyfriend made it special and we got a Christmas tree and had a DIY Christmas dinner. On NYE we stayed in and my boyfriend proposed. He was so amazing through the whole thing, keeping my family and friends up to date on my progress and cheering me up in hospital. I really don’t know how I would have got through it without him. The other thing I was desperate to do was to see my mum. I was told I could fly 3 months after the operation so on March 1st I was on the airplane back home. It was so good seeing my mum and nan, and other friends and family. I also got the opportunity to see a cardiologist who had no idea why this happened to me, and said it’s just one of those things. He did say however that he doesn’t know whether having children in the future is a good idea, and it’s something that needs to be explored with an obstetrician. Does anybody have any experience of this? I've always wanted children but it’s not something we will risk if it puts me in danger.
On the emotional side of things I think I've handled things quite well (even dealing with maybe not being able to have children), but this in itself is worrying me. I've only ever got upset about it once and that was when I started writing this the first time. There are a few things that I won’t do like sleep on the side of the bed that I was on when I had the initial chest pain, and for a few months every night when I went to sleep I would replay what happened in my head from when I had the pain to being admitted to ICU, but that has passed. I have been lucky in that I've had a wedding to organise and so at night when my mind is drifting I focus on that. I guess what’s hard for me is that there was no big incident where I was in lots of pain, it could have been very easy for me to have ignored the pain and not gone to the Drs. I certainly know that my partner would have done that. I think because of this, from November- February just feels like a bad dream, and not real at all. When I talk about it, it’s like its happened to someone else and not me, but obviously the scars say otherwise. Initially I tried to cover them up but these days I don’t care. I do have a particularly unsightly one under my arm where they made a bit of a mess, but the one on my chest even though it’s very bright I'm not bothered about. It is funny when people do a double take but I'm use to that now.
I’ve started doing a little more exercise but the Drs here although have been fantastic they don’t really have any sort of rehabilitation programme or advice, and they think so differently about things that it’s often difficult to get information like you would at home. I am 8 months after my operation now is it OK to push my exercise? They have said that I can do everything that I could do before the operation but I am still a little hesitant.
I am thankful that this happened here in China and that I had medical insurance so the Drs weren't hesitant in doing tests. I fear that had this happened in the UK, a 28 year old female, with no history of high BP would have been turned away and told it was indigestion.
Thanks for reading, sorry its so long.
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