Jeni's aortic dissection patient story

Jeni tells her story, “After getting to hospital, it transpired I had suffered a large dissection in my descending aorta. I was asked which hospital I would like to go to as they couldn’t deal with me there, so I chose Bristol as my husband works there. Cue a blue light trip down the M4, trying to get hold of my husband to tell him to meet me at the Bristol Royal Infirmary. 

After some initial problems of finding a bed in ICU, and then trying to stabilise my blood pressure enough to be able to stent me, I got MRSA. So, they had to postpone the stent operation whilst they cleared me of the bug. After 3 weeks in hospital, I finally had the op where a double stent was inserted into my descending aorta through the left femoral artery, and I was finally home a week later.

I was having yearly appointments at the Marfan clinic in Oxford, where they kept an eye on the diameter of my ascending aorta/aortic root as well as my stented descending aorta. I was told when my ascending aorta measured 4.5 cm in diameter an operation will be needed due to my previous dissection. In most people they would wait until it reaches 5cm. 

It was after a scan at Bristol in December 2010 that the Doctors decided I needed an operation on my ascending aorta. They wanted to do the traditional Bentall op on me but, I had heard of Tal Goleworthy's PEARS ExoVasc device and that it was a quicker op, with a better recovery and, no long-term warfarin etc so I asked if I could be referred to the Royal Brompton Hospital.

Eventually my appointment came through in June 2011. “Great, I am going to get fixed this year,” I thought.

So, I trot off to London to see Mr Petrou and he says: “Yes, no problem. You are a good candidate for this operation, but I have a job offer in Oxford. Would you like to have the op there or in London?”

Thinking of my family and visiting, plus the travel time for getting back home after the op and the potential pain / discomfort I might be in, I chose Oxford, not knowing that it would be another year before the operation went ahead. 

So, after a lot of chasing the hospital I got a date in July….“yippee,” I thought. Finally, at about 5 pm, I was told to come in as early as possible and they would do everything in the morning.

I arrived and started completing the form filling and pre op admin tests, none of which I had had previously at Oxford though I had done some when I went to London.

I even got to see one of the assisting surgeons who talked me through it all and I signed the consent forms. Then I got told: “It’s not going ahead today”. I was annoyed and rather fed up but what can you do?

A new date was scheduled in August and this time with no hitches. I was in and had a bed. I went down for the op on Friday morning at 9 am and after trying the 95% stent and my body not liking it, they went with the 100% one and it all went well. 

Just a few days later I was sent home – amazing.

By Friday I was suffering from some pain by my right rib cage so, to be on the safe side, when I was at the Doctors surgery for the stitches to be taken out of the drain sites, I asked about the pain. I was told it was most likely a bit of fluid left and that the more I could walk and breathe normally the quicker it would go, but to be safe they sent me for an X-ray. The nurse who did the X-ray showed me the result, so I got to see what my descending aortic stent looks like and my insides that look like they have a layer of chicken wire in them. By Monday I was feeling a lot better as we had gone for a long walk over the weekend – long by post op standards. 

Since then, recovery has been great, I started off doing not much in the first few days at home but at the weekend, managed a walk to the end of the street and back (not as far as it sounds). Sunday, we went a little further, and by the end of the first full week home I was doing the whole length of my street. The week after I was very slowly walking up the hill at the end of the road. The week after that I was walking for about 30-40 mins to go and see my mum (my lovely brother giving me a lift back). 

The next week we had a trip to Wales planned as a holiday and I even managed a 6-mile cliff walk. After about 7/8 weeks I returned to exercise classes, taking things very easy at first, and in November we went on a long-haul flight for a well-deserved holiday.

To anyone out there thinking about having ExoVasc surgery, GO FOR IT!!

Many thanks to Tal, Mr Petrou and the staff at the John Radcliffe CTW.”

 

Notes: I was 44 when I had the ExoVasc and 37 when I had my first dissection.

I now take only 75mg soluble aspirin as opposed to the bucket load of Beta Blockers I was taking prior to the operation.

Year of operation: 2012