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Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection
Type B surprise!
November 10th 2011 . It was an average Thursday for me. Nothing out of the ordinary that morning until I decided to step outside for a quick cigarette (I know, it's a terrible habit! But this was one hell of a way to stop!!). As I went to light said cigarette I had a sharp pain in my lower back. For a moment, I thought that I'd pulled a muscle in my back, then, very quickly, I realised that it was something more serious as the pain spread rapidly up my spine to my chest. I have never experienced pain like it before, and I'm not in a hurry to experience it again either! Cue a phone call to the local Ambulance Service and a trip to the local A&E. Once in hospital it took a short while fo the docs to suspect that I was suffering from an Aortic Dissection of some sort. I was packed off for a CT scan which confirmed a Type B Dissection. Thankfully, it would seem that it was not serious enough to warrant surgery. The doctors decided to treat my dissection by controlling my runaway blood pressure and by slowing down my racing heartbeat. When I was transferred to the Cardiology Department, my blood pressure was roughly 300/150. Apparently, the highest that the nurses had seen for a while. I was duly hooked up to umpteen drips and sensors to try and get my condition under control. This was further complicated by a lung infection which made me look and feel even worse that I already was. It took a few days to sort out the infection, then everyone could concentrate on getting my BP and pulse down to a safe and sensible level. Two weeks after my arrival, I was released into my brothers custody unde strict instructions to do a little as humanly possible.
I have to say that doing nothing came quite easily to me because I found myself to be as weakas a tiny kitten as a result of my ordeal. This was a real shock to me. Although I was already disabled, I'd always been fiercely independent. To suddenly be relying on others for most of your day to day chores was shocking. To make matters worse, it would seem that when I was dispatched from hospital, I was given way too many tablets for my condition. As a result, two weeks after my discharge, I was feeling totally run down. Worse, almost, than at just about any stage of my illness. My GP decided to do a blood test and 24 hours later I was back in hospital with acute renal failure. It would seem that all the drugs that I'd been given were overwhelming my kidneys. So another few days ensued, as the doctors flushed out my kidneys and attempted to adjust my pill dosage so that they could control my blood pressure without trashing my kidneys. Finally, a week or so before Christmas, I was sent home again to restart my recovery.
And that's about as far as I've got. I've found myself sat at home (after a good few weeks being waited on hand and foot by my brother and his family, I finally felt strong enough to go home and try to survive on my own), trying to recuperate and regain my strength. It's in my recovery that I am having issues. From the moment I left hospital, I've had no proper advice on how my recuperation should go, no information on how long I'd be off work or anything. I have to say that my GP has been excellent, however, she is no expert on AD's, and as such, can only offer me limited help and advice. She, like me, is reliant on the cardiologist for guidance for my tratment. The problem being that my cardiologist seems to have put my case to the bottom of his list. I'm still to have a follow up from him, so I have no idea how my AD is progressing. I know that I feel better, although I still tire quite easily.
I have to say that the hardest part of my recovery is finding information about what I should expect to be going through. As far as I can tell, not having to go through surgery following an AD is quite rare. Also suffering an AD at the age of 43 is also rare. I have trawled the internet for weeks now and found little to help me until, that is, I found this website. It's been good to read the experiences of fellow sufferers. Any little gems of advice that any of you guys and girls can impart my way will be gratefully received.
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Comment by Elaine Howlin on January 20, 2012 at 4:58pm -
Hi Robert
I had a Type A dissection with emergency surgery last May but prior to that I was being 'watched' for a small Type B dissection. I too had incredible pain but mine went down my legs rather than upwards. I did not need surgery for that but was told to keep my BP in check. Following the dissection last year the whole of the descending aorta has dissected and the ascending aorta was repaired and grafted. I am surprised you are only being followed up by a Cardiologist and not a vascular surgeon who would be the one doing any surgery if required in the future. I see a Cardiothoracic Surgeon for the ascending/descending aorta and a Vascular Surgeon for the Type B dissection also a cardiologist for blood pressure etc. Your GP is great but not a specialist in this field. I would be inclined to ask for a referral to a Vascular Surgeon if I were you and don't be fobbed off.Which area do you live in?
Regards
Elaine
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Comment by Kimberlee Jones on January 20, 2012 at 2:38pm -
Hey Robert,
Thank you for sharing your story. There are actually quite a few people living with a dissection. A few members here have dissected through almost the entire aorta, some have had parts of the dissection repaired while docs are just watching the rest. Mine was repaired(dissected from aortic valve to about mid arch) unfortunately I developed an aneurysm in the same location just a little over a month later(this they are watching) I was 31y/o when I had my dissection. You will be surprised, just by reading through this site, how many of us, don't fit the "norm" when it comes to dissections.
How often do you visit your cardiologist?
I also still tire easily and have not gotten back to my old self..probably never will. I've found the best way to handle this is focus on the positive...I survived a dissection! It reminds me life is short, so I live each day with this in mind and I try to push the negative to the back of my mind and focus on the positive. Almost 6yrs later...it has become a 2nd nature.
*hugs*
Take care,
Kimberlee
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Comment by Harry on January 19, 2012 at 7:18pm
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Hi Robert,
Very sorry to hear about your condition & hope you’re improving.
You’re very lucky to be here & even luckier not to have had an operation. I was 46 when I had my AD & four years later have had to have a second.
I would suggest your tiredness is down to a number of reasons. You have just had a major event in your life & given the number of complications your body hasn’t had time to adjust. Having a lung infection & renal failure is no small thing, combine this with your attack & I can understand why you feel as you do.
I would further suggest that the medication your now on has a major contribution to your energy levels. Since my attack, & resulting BP medication, nothing has been the same, sad to say its unlikely it ever will be!
However don’t be disheartened, your life will improve as your body recovers & adjusts to your new condition. It took me several months to gain some form of fitness & life is still improving - two steps forward & one step back so to say!
Not sure what your disability is but I would try & do some form of exercise every day. I walk for an hour or so, & if you able start off small & build up.
My final observation is NOT to let your Cardiologist ignore your condition. Its imperative you/he is fully aware on the type of dissection, its current location & length, & you have regular check ups (6 – 12 months) to ensure its not extending. If you’re on the NHS see if you’re GP can get you higher up the list to see your Cardiologist or go private if you can.
Finally I just uploaded a guide to managing your BP, worth a look as it may help
Hope your health improves!
Rgds
Harry
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