Aortic dissection & aortic aneurysm information support group

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

I thought it might be good to write an update on how things are three months after having my ascending aorta and arch replaced with with Dacron.

  • Had my first check-up with a cardiologist a month ago. He was impressed, but revealed that the angle of the valve where it meets the repair means I have some aortic regurgitation. He's treating it with medication for now, but warned it will need to be watched; but he also pointed out that it was emergency unplanned surgery, and that I'm just fortunate to be alive. 
  • Not allowed to drive yet, and told not to push my activity too hard. But I do walk the perimeter of the park opposite my home (20 mins), shopping malls etc.  Still can't lift stuff...but maybe I should start to do more?
  • BP averages around 106/64 and seems very stable (but taking beta blockers, ACE inhibitor and a diuretic.  My resting pulse is coming down - used to be around 100, now in the 80s.
  • Anemia clearly much better, and I'm feeling much better. But I still tire easily.  Need to rest on the bed for about 30 mins once a day at least. Energy levels fluctuate.
  • The feeling that I'm breathing someone else's lungs has pretty much gone (it felt like that when I first left hospital), but I'm still a bit short of breath some of the time. Coughing is still a bit weird, and clearing phlegm isn't like it used to be.
  • No painkillers for over a month, but there are still twinges and occasional pulling around my chest scar, half of which has now virtually vanished. I can bend down much more easily if I drop something, and move across the bed without wincing.
  • Appetite back to normal, but am still managing to lose weight - 20lbs now since surgery - about the same to go to get where I want to be. And I seem to be sleeping normally.
  • The nerve damage to my right hand during surgery seems to be healing...slowly...but it is healing. My little finger isn't screaming all the time any more!
  • In my head I'm fine, and now feeling frustrated that the same isn't entirely true for the rest of me, which is probably a good sign!

Comments and comparisons with your experience welcome!

Views: 192

Add a Comment

You need to be a member of Aortic dissection & aortic aneurysm information support group to add comments!

Join Aortic dissection & aortic aneurysm information support group

Comment by Julia Holley on July 11, 2011 at 14:07

You are doing so well and with so little pain, especially at night.  I have to remain in the same position all night as I find it very painful to move when sitting or lying down.  I had a fall in a dusty old unmade spanish car park (I bet you know the type I mean) and I was totally unable to get up unaided.  As luck would have two strapping young men were kind enough to pick me up and dust me down.  I am now 13 months on and I am sure that most of my problems arise from the 25 day stay on ICU with total loss of muscle tone and total colapse of my core muscles, of course not helped by my age 59 this year.  

Today I have won another battle.  You mention losing 20 lbs well done.  I lost 20 lbs before my dissection in May last year and have studiously stuck to that diet and put 25 back on.    I have been battling with my GP who insists I eat too much and keeps blathering on about salad and no chorrizo for 2 months. I have even tried the diet without eating any gluten just to prove a pòint. Today I went back fatter and furious.  He thinks of me as one of those silly women who has him on a pedestal and dosent know the meaning of diet, spanish men refer to them as ´sardines in the kitchen`.   Anyway to cut a long story short I have come away triumphant (without using any rude words, wanted to but didnt!!!!) with an appointment in early September with an Endocrine Specialist.  I am so pleased with myself as although I have lived in Spain over 20 years I am an artist and visual things are my strength.  Languages have always been hard but today I excelled myself.     Nothing like a pat on the back.      Actually my spanish experience with the AD issues have all been very positive.  I think I may have had a bit of a stroke during my stay in ICU which may account for the length of it. Beside a weakness on one side (especially when I am tired) also I have lost a portion of vision in one eye and my hearing has been affected too.

I have my 6month appointment at the Clinico on October 7th and I am wanting to know if my still disected aorta has repaired itself.  I do hope so. Take care and keep on improving.

Comment by Kimberlee Jones on May 31, 2011 at 16:56

My surgery was about 5yrs ago...well almost 6 and your post brought back a lot of memories.  Hang in there Tim...things will improve, slowly for some, faster for others but they will improve. I also understand the feeling you get when you discover that it really isn't over...shortly after my surgery they discovered an aneurysm developed right where my dissection was repaired, my aortic root had become enlarged which caused my aortic valve to leak with moderate regurgitation. The leaky valve/regurgitation does make it so I tire easily but after time I learned to work with it instead of getting frustrated by it.

 

*hugs*

I am happy to hear you are doing so well just 3m out.

 

Kimberlee

Comment by Tim Manning on May 31, 2011 at 14:56

Greg,

I don't think there is a rehabilitation programme I could join here (although my life is complicated by the fact that I'm excluded from the NHS in Spain as someone who is early-retired - at 56 - but not receiving a UK state pension), but the Gran Canaria climate means you can be outside whenever you feel like it, and I live opposite a park.  And it seems that gentle exercise is doing the trick. 11 days on from my last update and my breathing still seems to be improving (I can cough again as well), and I feel more "whole". But I'm definitely not a Duracell bunny, as my energy quickly runs out. My BP is still elegantly low, averaging 105/65 last month.

Later today I'll drive the car round the block and see how I feel about that (automatic, so shouldn't be too much of a strain).

Comment by Gregory Smith on May 22, 2011 at 16:43

Tim,

My own Ascending Aortic Dissection and repair was almost a year ago, and I have been posting updates at irregular intervals on here - see my blog. One thing I will say is that I never expected recovery to take so long but at least progress is being made and in all the right directions. It's also very important to get on some kind of rehabilitation programme (I don't know if they have them in Spain) but they are available here in the UK.

Comment by Tim Manning on May 21, 2011 at 9:34

Cher,

Thanks for your thoughtful and helpful comments! And - it goes without saying - all the very best for your planned surgery.  I can relate to how you must be feeling about going through things again.

I know we're all different, in terms of the level of intervention, and what we might or might not be capable of long-term; but I posted this partly because there's very little anecdotal stuff online anywhere from people about how they've felt at different points on the recovery timeline. What you can find is often immediately after surgery....or after the first marathon; there's not much which covers the grey period in between.

It's difficult to gauge whether you are doing ok (even if you think you might be), and whether one's own experience is broadly in line with that of others.

 

But thank you again for giving me some of the answers/pointers I really need. It's much appreciated!

Comment by Cheryl Kerber on May 21, 2011 at 0:21

Totally there with you.  Even though my surgery was 6 years ago and it was my descending thoracic replaced, all the memories come flooding back by what you are saying.  I am scheduled for July 7th to replace the original dissected aneurysm which runs from my sternum down --- it's hard to think of having to go through the whole process again as your words totally describe it.

You are at the 3 month mark and that is huge --- you will continue to improve and at 6 months you will be even that much more active and "feeling" more normal.

With it having been an emergency, that only contributes the whole process as you weren't going into it eyes wide open and knowledgeable with what you would be facing.

If you can get physical therapy or some type of healing therapy - I would go for that --- I know you can't drive yourself there, but it does help with scar tissue and the sooner the better --- even tiny little movements help amazingly -- even with your chest scar.  My scar runs under my left arm and up around my left back shoulder blade and it took physical therapy for me to get use of my left arm back.

As for doing more -- check with your surgeon even though they aren't always much help --- you just don't want to over due and set yourself back.  I did Tai Chi Cha and pretty much just walked and then whatever physical therapy tiny moves they assigned me.

Also, if you weren't on meds before for your blood pressure -- they will contribute to your energy fluctuation.  I am on Metoprolol ER (extended release) and there are times even now when I do the treadmill or go for a walk, that I feel that it makes my body fight against me as my heart rate is trying to increase, but the beta blocker is doing it's job and fights to keep it down.  UGH!

You will have to let me know whether after your body gets to a point where you feel fine - if your mind will take it's turn then and play games with you.  The physical I knew how to tackle in a sense - the mental was a different story - and still is today at times.

The fact you are off painkillers is great -- it will give your body time to recoop --- as you can only imagine everything your body has had to do the last 3 months.  Lung capacity should improve - but again - if the drs have any suggestions for you to help with that - then go for it.

I tend to feel more asthmatic since my surgery - but don't know if it is from the meds.  I also became more hyper sensitive to smells, pain, and so forth.

Thrilled to read you are doing so well --- and based off of what you have written -- sounds good.  Just keep taking care of yourself and don't push it.  The surgeon that will do my surgery said it's a good 3 months recovery to start getting your energy back - 6 month mark you'll feel more capable - more energy -- and at a year you will be amazed at how far you have come.

Congrats and all my best,

Cher 

LIFELONG MEMBERS

Our AD Facebook Page!

Visit Our Facebook Page/

OR - Post our Website Link to your Facebook Wall Profile
If you have the QR decode app in your smart camera phone - hold your camera phone over this QR CODE and it will automatically take your smart phone (*if you have the internet enabled on your phone) to our Facebook Page!

 OR - Use the QR Code above

What's a QR Code??
Download QR Reader App.

Our Twitter Feed!

Events

© 2019   Created by Graeme.   Powered by

Badges  |  Report an Issue  |  Terms of Service