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Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

My aortic dissection experience- living in China

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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Comment by Kimberlee Jones on October 29, 2010 at 18:58
I can't believe they waited so long. As Richard stated earlier I went to OR immediately, but that was for an emergency c-section(I was 34 weeks pregnant) they did not do my heart surgery until the next morning. I have told if I were to get pregnant again it would kill me(keep in mind I do have another aneurysm that has not dissected and has not been repaired, it's just being monitored) What I do know is when a woman is pregnant the walls of her arteries and blood vessels thin out, also pregnancy does a lot to the body, your heart and body are working harder. So with your history it's risky, I would defiantly ask many professionals before making that decision. I hope I didn't scare you, that is not my intention. Also FYI the thinning out of blood vessels and arteries also happens to women after they hit menopause. Also Welcome and glad to have you hear. *hugs*
Comment by Kate Hughes on August 4, 2010 at 3:01
Thanks for your comments Graeme. I didn't need my valve replaced. They said before the operation that they may need to but wouldnt know until they were operating. It turns out my heart structure and valves are all good, so it was just a repair on my aorta (dacron graft). The day before my op the chief surgeon actually operated on an older lady with exactly the same thing.

There is some comfort in knowing that I'm not the only one that this happened to out of the blue. I've tried not to think about the 'why' and so far this is working.

The children issue isnt top of the list right now, but it is something we need to think about. I know for sure that I wont be doing anything that could put me in hospital with the same thing.

Kate
Comment by Graeme on August 3, 2010 at 14:05
Hi Kate!

Firstly apologies for not personally welcoming you to the Forum back in January - you must have slipped through the haze of Xmas and NY leftover turkey and brandy snaps... Anyway, a belated welcome to the Aortic Dissection Group! Have just read your story and wow..you are a pretty lucky lady...as Richard said a Type 2 left for over 2 weeks.. I was bloody lucky to last till my operation 20 hours after collapsing. (I was incredibly lucky all round - here's my story..)

You did not mention if you also had a new aortic valve fitted.. I would be interested to know if you did and how the Chinese docs handled it? Your story is riveting as well given that it happend so far away in such - as we are led to believe - a country that is not as medically advanced as UK/USA. Looks like that was a bit of a misconception as well..

Children - agree with Richard. I do know that childbirth puts an immense strain on the aorta and heart (a few stories on AD on here during childbirth as it is a known cause of AD in young mothers) so that one is going to be a medical decision at the time you want to explore that option...Also - like you my AD was out of the blue - no history of high blood pressure or any aortic disease or aortic weakness - just boom! Seems a lot of us had our AD's the same way - out of the blue.. I must say however that the NHS was superb here in the UK once I was in the system - a bit (lot!) of luck with initial diagnosis but the operation and aftercare was superb.

I am not as organised as Richard with his cross trainer but I did give up the crisps (then!) early in my post op recovery and have really tried to eat healthily - with greens (!) and a regular diet (that includes alcohol!) but I always try and do as much physical activity as i can squeeze out of the day even with chores ie up and down stairs and I always walk at least 2 miles a day with our dog and push that so that I walk quite fast which gives me a good buzz/stretches my legs and and gets my cardio raised to a nice - but not silly level. Seems to work ok as have held my weight to same as pre op at around 164 lbs and absolutely nailed my annual cardio treadmill/ekg tests a few months ago. I would recommend that you get walking as soon as you can (either cross trainer or real walking) - but as there is a lot of smog in China (?) maybe best to do inside..if you are however walking outside also maybe carry some very light weights with you to help strengthen your upper body.

Like you, I gave up worrying about my scar years ago and now 7 years on its so faded that its virtually invisible.. I could not give a toss actually what people thought about it even the first summer wiht my shirt off... so your attitude is very healthy! Like you, I sometimes still however look in the mirror and even dream now and again about the events and think that it was all a dream - but I'm comfortable with that as it's your minds way of dealing with such a trauma...

My 'bete noir' however has been my mechanical heart valve..not only the noise but the 'banging and thumping'..the first year I really thought it was going to blow up..but..like everything else you learn to live with it and actually now I love its reassuring clicks ticks and thumps..!

Anyway enough of all that - you get better - !! It took me a year to get sorted after the op both physically and psychogically - and I would get walking or cross traing as soon as you can!

Stay well!

cheers

Graeme Archer
Comment by Kate Hughes on August 3, 2010 at 8:22
Hi Richard, I had Type II so fingers crossed its all fixed. From everything that I've read I too am suprised I was like that for 2 weeks. They did say that at any time if the situation got worse then they would operate immediately. I had a nurse with me 24 7 and Drs visiting every couple of hours.
I've got an exercise bike so I've been using that and doing a few fitness DVDs, I played field hockey before this and at some point would love to start playing again. I also need to lose weight as like you mentioned below I too have been doing lots of sitting on my arse. I guess I feel more pressure here as the chinese are so thin and so my Dr compares me to them, in which case I am an elephant.

Thanks for your help,
Kate
Comment by Richard Deal on August 3, 2010 at 8:04
Hey Kate,
Thank you for posting your story... I find it amazing that you were left with an ascending dissection for over 2 weeks, albeit medically treated to reduce the risks. That is something to be very in awe of. Kimberlee, another member on the site, said that she was told that a sneeze could have killed her! I, on the other hand, was diagnosed and in surgery within 3 hours of having the dissection. Amazing how different each story is with the same condition.
I am not sure about pregnancy, but I remember reading another story where the dissectee went on to have children. I wouldn't rule it out, but there is a higher chance of dissection for women during pregnancy.
Did you have a Type I, Type II or Type III dissection? Type I affects the entire aorta, Type II affects just the ascending aorta (basically the arch coming out of your heart), and Type III affects just the descending aorta (from just below the middle of your shoulder blades down to your legs). If it was Type I then you are likely to still be dissected in the descending aorta, and that may also play a role during pregnancy.
Your question about exercise is common one. When I came out of rehab after my dissection (Type I, so I am still a mess in the descending aorta) I was told I couldn't do anything that involved extremes of exertion. That meant things like sprinting, or weightlifting at the one end. At the other end it meant sitting on my arse all day eating crisps. During rehab I was doing 30 minutes of ergocycling per day and was normally walking (up and down hills, around forest trails) for an hour or so a day. So, after coming out of rehab, I decided to get myself a cross trainer. I do 45 minutes on it at least 4 times a week and the only thing I watch out for is that my heart rate stays around 50% to 75% of my supposed maximum (220 - age = for me 75% of 188 or ~140). If you are just starting off with exercise I would stay down the bottom end of the range until you are comfortable with it, also build up the time you do slowly (i started with 5 minutes a time and I got off after those 5 minutes more knackered than i do now after 45 minutes, despite the exercise at rehab).
congratulations on the wedding! take care,
r

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