Aortic dissection & aortic aneurysm information support group

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

On May 5, 2011 I was (literally) running to catch a plane with my husband en route to a dream cruise to the UK (transatlantic).  Halfway to the departure gate (of course it was the last gate) I had a sudden, unbelievable, ripping pain down my back that dropped me to my knees. I insisted my husband continue to the gate and hold the door for me - wasn't going to miss my trip.  I sat in the concourse holding my chest and trying to breathe - no idea what was wrong.  Apparently I was making noise too and one (of the many) person stopped to ask if I was alright.  After ten minutes I got up and walked the remaining 10 gates and boarded my plane.  Long story short was that paramedics were called when the plane landed but I persevered and boarded the transatlantic cruise.  Got great medical care on board for what I believed was an injured disk.  When we arrived in the UK I walked endlessly seeing the sights.  Flew home after the trip and resumed my active schedule.  

For several years (20?) I had been having PAT episodes which had steadily worsened with age.  After the trip that summer they were especially bad and I saw a new emergency room dr. who immediately diagnosed them and sent me to a cardiologist.  After wrangling with the insurance company I had a repair of the diagnosed electrical problem - easy peasy and no more PAT.  Two weeks later in a follow-up CT scan my dissection and aneurysm were found.  Scared everybody.  I had endoscopic repair and an "extra long" graft installed 9/29/11.  I survived the surgery  pretty well but have not recovered to date.

There were difficulties controlling my blood pressure after surgery and a number of the drugs proved to be intolerable and ineffective.  My surgeon abruptly left his practice a month after my surgery and I have been floundering.  A kind nurse practitioner set me up with a new internist and he immediately got my blood pressure under control.  Subsequent CTs show that my repairs are intact but I have yet to regain strength, stamina or energy.  I've been told by surgical staff that I will "just have to get used to it".  

Before the surgery one of my great pleasures in life were my extensive gardens (5!).  Between my inability to properly garden and our horrible drought this year, my gardens have languished.  Last week I agreed to have my largest garden mowed to the ground. Devastating.   And that prompted my internet search for answers about my condition - and I found this group!  Hoping to learn from everyone's experience and find a new normal.

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Comment by Catherine Withrow on August 28, 2012 at 12:08

Thanks for your encouraging words Nicola.  I hope to increase my walking as the weather cools off here in the Midwest - my husband says I need to wear a neon safety vest because I am "a slow moving vehicle".  Swimming sounds like a great plan too - I hope you're able to do so.  My gardens will have to wait until next year I'm afraid.

Comment by Nicola McMeekin on August 27, 2012 at 9:55

Hi Catherine,  Welcome to the website.  I discovered it 2 months ago and it really helps to know that there are people 'out there' who understand, wish I'd found it earlier.  I am one year post AD and doing well but it has been a struggle sometimes.  I hope that you can get some help with your gardens, can you grow wild flowers where you are and have a meadow?  I have had to give up playing trombone in a couple of bands and I miss that, it was something that defined me. Now I help out (oops, italics on!) at the local hospital once a week and also work from home. I am very lucky to be here and to be able to bring my 2 teenage boys up and that's my focus at the moment.  Phyiscally I am improving, I have walked a lot (slowly!) and that has got me out of the house and fitter.  I see my doctor next week to check that I can swim and the plan is then to swim too a couple of times a week, something I couldn't have dreamt of 6 months ago.  I am thinking of you and hope that things improve and that you in time find your new normal, it's out there somewhere.x

Comment by Cheryl Kerber on August 20, 2012 at 20:40

Thanks - and yes - each day is a new chance.  The mental toll is going to be there - but each day you don't let it win, just makes you stronger.  I had my 2nd surgery 7/7/11 and a hernia surgery (due to the incision from that surgery) this past 7/17/12.  Wthout this site, not sure if I would have found the mental strength to face it head on.  The physical part we know we have to work on - the mental part doesn't come as easy.  Some days it won't bother you (it won't ever leave your mind) but other days, you can feel so alone, isolated, and like a failure - but it is out of our control and that is hard for us to grasp.

Wonder if that accident had anything to do with your AD? -- They talk about how severe jarring( even if using a seat belt) can bring on an AD --- for all you know it could have weakened your aorta and well, physical life then wears away til it weakens and opens.

You too were a bright spot for me today - that and the butterfly :)  -- sometimes it helps to just vent - to voice your fears, worries, anger, sadness, frustration --- the list goes on.  We can't physically be there for you - but we all are here to listen -- so keep in touch and just know - you aren't alone.

Cher

Comment by Catherine Withrow on August 20, 2012 at 20:29

Cher -

your comments mean a lot to me.  And the yellow  butterfly surely is a sign of something.  I think this group will help with my feelings of helplessness and low hope.  I battled back in 2001 from a very bad car accident (hit from behind by a semi doing 70mph) so I felt like I could handle the AD.  Hasn't happened.  And my life was fairly physical with farm animals and gardens and chores plus my f/t job.  I've cut back on the paying job and have hired occasional day help but I still can't keep up.  I cannot quit the paying job.  period. But each day is a new chance to start again, right?  And today you are my bright spot.  Thanks much.

Catherine

Comment by Cheryl Kerber on August 20, 2012 at 20:20

You hit the nail on the head --- "new normal".  That pretty much sums up what an AD leads you to.  I had to close my business after my first surgery which was very difficult as it was part of what "defined" who I was.

Welcome to the group by the way - it's been a life saver for me - to know there are others out there who understand as my first surgeon retired after my emergency surgery - but then again - it wasn't like he had alot of general advice for how to cope and redefine life.  He saved my life with the gift of his hands and I am very thankful for that.  But there was no guidance after that -- I just kept getting "most people don't survive what you have" - so there was no "group" or support out there.

I too had my dissection while on vacation - didn't know that that was what it was - I just sat there for 15 - 20 minutes, until I could breath and move (I was already sitting so I didn't have the knock to the floor situation) - but when it felt like it passed - off we went - horseback riding and so forth.  They found mine a year later when I had a xray for possible pneumonia -- and there it was - 6 weeks later I had emergency surgery for a possible leak.  Life hasn't been the same since.

I do appreciate life more - wish I had the physical ability and the stamina to do ALOT of things I can't anymore, but am thankful I get to see my kids each day and little things stand out more --- like this yellow butterfly that flew into the hair salon while I was getting my hair cut today.  I thought it would find its way back outside, but it ended up landing on their walls (kind of a golden yellow color) and it looked like they put a sticker there - like on a greeting card.  It was there the whole time I was there - and I can't explain why it stood out - but I don't think I would have even noticed back prior to my AD.

You will get stronger as time goes on -- will you be back to what you were prior - probably not - you just learn you have to really listen to your body and take care of yourself.  The meds we get put on, don't help with the stamina and energy - it feels like it works the opposite.

Since the blood pressure meds keep our blood pressure lower, physical exertion is more difficult/more work because that's what it's supposed to do.  The bummer part is, trying to exercise or do anything physical which is supposed to help keep you healthy in the first place, is that much more straining on us.

I wouldn't go off of their "just have to get used to it" - I would tweek that a bit to finding other ways to be active that don't take as much physical toll on you - will you have days where you feel like you are treading water - probably, but hopefully they will become farther and further in between.

Patience is definetly a virtue --- I don't have it yet --- you would think it would come naturally with our AD experiences --- but for me - I find I'm more impatient as I know how quickly life can change.  But my body knows, and it lets me know very quickly if I've over done - and then I have to step back and sit.  I guess that's a good thing in a way -- otherwise - that yellow butterfly would have fluttered on by, and it wouldn't have had the "affect" it did on me today.

You will feel stronger by your year mark.  And it will continue - just eat right, get sleep, exercise appropriate to your specific situation, and just enjoy life that much more than you did before.  You can have your garden(s), you just might need to hire someone to help you tend it instead - and just do little putzing here and there.  Don't give up - just redefine.

all my best,

Cher

 

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