Aortic dissection & aortic aneurysm information support group

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

Almost 3 weeks post surgery at what price?

In a few days I will be three weeks post opp  number two.

 

The things I am finding hardest are the various levels of discomfort & lack of sleep. Next week they want me to reduce my meds to just use paracetamol – are they mad?  I can just about manage the pain levels now.

 

My shoulder, where they opened me up, has just about healed, but it’s a constant source of discomfort & I can’t sit up for long, nor can I twist. The worst is my left lung, which they collapsed, & now I can’t stop clearing my throat. And when cough its like someone has stuck a knife in.

 

So that’s my whinge!

 

I needed to tell someone, anyone, but my poor wife & family have been through enough; they don’t deserve to hear my complaints.

 

Yesterday was my 49th birthday, the family gathered & sung happy birthday around the cake & the kids were really happy to see me. I suppose life has to go on & I have to believe this is for the best & it will give me another 10-20 years! But what they don’t tell you is that there is a price to pay for those extra years…………

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Comment by Cheryl Kerber on September 5, 2011 at 13:29

Harry are we like living the same life?  Granted I don't have the voice issue, but I have other issues since the surgery.  I'm farther down by a couple weeks - so it will still improve in ways but feel like other ways are progressing as fast as we would like them too.

I feel for you totally! Keep us updated as to your post opp review and even though it's really hard, try to keep thinking positive --- it's ok to feel sorry for yourself as you have been through alot - but keep thinking of why you still want to be here as your incentive to get better.

all my best,

Cher

Comment by Harry on September 5, 2011 at 1:59

Hi All,

 

Just to say thanks for all the support & feedback.

 

I have been feeling more than a little sorry for myself lately & will try & remain positive & focused. Each day, with a few exceptions, I do feel better & I stupidly thought I would be stronger emotionally & physically the second time around!

 

Seeing the surgeon for a post opp review on Thursday, given I can’t sit up for more than 30 minutes, it will be interesting to see how I get through the tests & review.

 

Apart from the shoulder pain the worst is losing my voice. I have been told it’s a visit to ENT Specialist & an injection of Teflon into the vocal cords will sort this out, but having looked on the internet I have many reservations – has anyone had a similar experience?

 

I know it’s a matter of time now & probably recognising a need a lifestyle change. Whilst still relatively young I know I can’t do as much as before & I certainly don’t want to risk any further procedures. Any help here or advice is always appreciated!

 

Will update you after Thursday’s review.

 

Take care …

Harry

Comment by Julia Holley on September 2, 2011 at 14:14
Hi Harry, I can totally sympathise with you.  I felt the same but made a pact with myself that however I felt at any given moment it would always be the bottom line and the only place to go is up.  It worked for me.  All our circumstances are slightly different but positive thinking with sheer optimism will always get you through what feels like the bottom of the pit.   The pain does get better albeit slowly and movement too.  I also sympathise about the family bit.  My partner was totally exhausted by the time I was discharged from hospital just with the sheer worry of all of it.  I shared many of my darkest moments with my dogs who I have to say were most attentive, the absolute best listeners and giving unconditionally always.  I so wanted her to have time to recover too so I really understand your need for this forum.  I didnt find it till recently but I was unable to sit and use the PC for a long time.  I am here now though!!   Stay positive and be kind to yourself.  You have made it through the thick now its only the thin, much easier.  We are all with you,  Julia x
Comment by Kimberlee Jones on August 29, 2011 at 18:11

This is the place to vent! We all here can understand and sympathize with so much of the pain you are in right now. I understand not wanting to burden your family but remember they love you and probably want to help you through this.  Please feel free to vent all you want and just know it does get better..it's a slow process but one day you will feel like yourself again.

 

*hugs*

KImberlee

Comment by Cheryl Kerber on August 28, 2011 at 2:26

I don't know if the rest of my comment ended up going through as it looks like it got cut off below --- letting me know I write way too much.

But just in case -- one more thing --- hug yourself for everything you have been through.  Just visualize yourself hugging yourself for everything from congratulations for surviving twice and for all the hang ups you faced just getting to this final surgery, hug yourself with compassion, love, caring, understanding and empathy.  You deserver it!

I'm there with you in spirit,

Cher

Comment by Cheryl Kerber on August 28, 2011 at 2:16

Harry I can soooooo understand what you are saying.  I'm impressed how well you type just being 3 weeks post op --- the drugs just made it really hard for me to focus and that is why my sister did updates for me.

My first surgery they went in under my left breast continued under my left arm around my left side and up my left side upper shoulder blade.  They also remove 2 ribs - the one right under my left breast (ergo tie swimsuits and no bras) skipped one and removed the next one down to get to my descending thoracic aorta.  It was extremely painful when I moved, yawned, coughed, sneezed and laughed. It hurt just lying there.  I had frozen shoulder for a long time -- I did finally get help 6 months post by going to physical therapy where they helped me get my range of motion back in my shoulder.

It took a long time with all these little movement exercises and building up to more resistance exercises to gain more actual lifting strength.

Well worth checking into as you don't even realize how quickly it happens - especially since you are healing from the major surgery you just had!!!!!

I don't understand why they want to cut back your meds already either.  I know for me, they are concerned about how much acetamenophen(sorry about the spelling) as it is hard on the liver.  I know our kidneys also take a toll with all the drugs. 

If you can, ask them why they are pressing the issue.

As for the collapsed left lung -- are you doing that breathing apparatus thing where you blow into it and see how far you can raise the platform?  Mine has Airlife written on it.  It's supposed to help you expand your lungs as they can shrivle a bit after surgery ---- plus it helps with the coughing (which of course is a response to your lung issue).  But I know it feels like you are being stabbed!!!!!!!!!!!  I cried a lot which didn't ever help because that just made it hurt --- it was a vicious cycle.

I agree with everyone below - time will improve even though it doesn't feel like it now.  I'm at 6 weeks out and am amazed at how far I've come except it's not as far as I think I should be or expected to be.  I still have pain - still take my pain meds - have some good days which lift my spirits only to be kicked off my feet for a couple days and it seems like I cry at just about anything.  Today, it hurts to take a deep breath on my left side lower lung/rib cage area.

Of course then I go on the internet and freak myself out from anything from pneumonia, collapsed lung, blood clot in lung(as I have a clotting issue with this surgery that they are trying to handle) to a pulled muscle anywhere from my spinal chord, sciatica, or rib cage.

I get frustrated with being scared.  I get scared because I didn't have the pain there before, but who knows if I over did it yesterday or the day before (hmmmmm even though I'm not doing much of anything) or was it due to sleeping wrong ---- it is all frustrating.

So then I just want to go to bed and sleep(2 hours at a time) and hope to God I wake up and that pain is gone.

I understand where you don't want to tell your family, but they are there for you, and as a wife - I would want to know if my husband was in any discomfort or had fears or concerns I would want to know --- so tell her, but also, continue to tell us as we do understand.

Happy Bday by the way -- my 46th is coming up in October.  I appreciate bdays now.  And yes, at the price we pay for the extra year I expect to have many more years added on as I plan to see my kids grow well into their 20's and 30's and so on.

And I pray to God, it will be with less fear than the last 6 and 1/2 years with having the dissected aneurysm still within me.

If like me, you can remember how long it took the first time you had surgery --- I just know it's months.  I am bummed that driving looks like Christmas time for me.  I don't even want to go to friends' houses as just m

Comment by Sharon Masterman on August 26, 2011 at 13:15

Dear Harry,

I'm new to this site, my husband had been home from the hospital two days only, after suffering a Type B AD. Please keep your chin up and whinge all you want!!! Your wife and family will be so grateful just to have you around, no matter what xx

Comment by Tim Manning on August 26, 2011 at 12:12

Harry,

Week by week things can change a lot, and I wouldn't worry too much about reducing pain meds. Paracetamol worked well for me on its own at around four weeks.  If you look through my blog posts, you'll see I had also had a bad time breathing (maybe didn't mention that I also had a collapsed lung in intensive care), and things are still not quite right; but they are a lot better, so hang in there. 

Everything's new, painful and raw at the moment, and it's not surprising you feel frustrated and crap. Things should start to improve, but time really makes a difference, and there's nothing you can do to speed that up. Hang in there, because if you're anything like most of us here, you really will notice change week by week (and don't be discouraged if you have the odd bad day).

 

Tim

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