Aortic dissection & aortic aneurysm information support group

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

Thanks to you for your comments and support.  Its good to know you are out there.   I still feel quite detatched from all this but it's going to hit me soon.  My wife and family are the ones suffering most right now.  This is the second time in two years that they have had to watch me go through a major life threatening event.  First my stroke. now this.  They are the ones who most need support at times like this.

My angiogram is scheduled for early afternoon and hopefully that will give the surgeons a bit more useful info.

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Comment by Graeme on January 26, 2011 at 9:18

David,

 

Cheryl has suggested we give you a  quick 'heads up' on our recovery experiences... like Kimberlee i'm kinda blanking out here too as the mind tends to bury these memories as they were/are not that pleasant.. obviously.. Firstly don't be a hero! Do as you are told by the doctors - and most importantly listen to your body! It takes a LONG time to get over the op and the mental issues took me over a year - but some of us on the site say they had no mental issues.... so its not a 'given' you will go through the 'why me' fits of 'black dog' depression & self pity... as i call what happened to me !

 

Practical tips... there are many..use a cushion between you and the seatbelt in a car for the first couple of months... don't cough, don't laugh and as Cheryl said get all your hugs in BEFORE the op as after it hurts way too much for hugs..! Frankly - it hurts like hell..i had a LOT of coedin for a few weeks then kicked it and gradually the pain recedes and after 6 weeks i was pretty tender but painless - unless i jerked my chest or rolled over in bed or any of the thousand ways you forget about it and then are painfully reminded of it when you move in a certain way!

I also wore loose fitting clothes (no bras!! :-) and as it took nearly 6 weeks or more for the anesthetic to be purged from your/my body i kept a stock of t-shirts by my bed to change every time i woke up drenched in sweat - more or less 4-6 times a night.. and sleeping is going to be a big issue for at least 4 weeks or so - it took me around 6 weeks plus to get more than 2 hours a night without waking up either from the pain of the chest incision or the sweating...

And a - big tip - get a foam memory mattress topper - at least 2 inches thick - it moulds to your body and allows you a much better slep and also cradles your hip/body as with a mechanical valve i have to sleep on my side as sleeping on my back is just too noisy - for me and my wife  - tick click thump! The mattress topper also blocks out a lot of the noise as well and allows your partner a good nights sleep without listening to your tick tocking! 

 

There are heaps more things but frankly - you will get to deal with them in your own way... but remember - it WILL PASS... and you will recover and sneeze and laugh and hug and run and and smell the roses... and marvel at a perfect summers day and feel  - oh so good to be alive...!  

 cheers

 

Graeme     

Comment by Carol Pont on January 25, 2011 at 23:43
Hi David. I am thinking about you. Everything cheryl and kimberlee said is right. Its all still so fresh for me. You will not feel like walking after the operation you must. I am still feeling very tired. Sleep when you want too. Going too bed hurts so much. As for bending down it still hurts. I am very aware of my heartbeat. Also the WHY ME was very hard for me as mine is genetic. Carol :)
Comment by Kimberlee Jones on January 25, 2011 at 20:51
What to expect after surgery, I can do my best to recall, but keep in mind I also had a c-section 24hrs before. I think the scariest part at first was the tubes, wires and etc. You will wake up with a chest tube(ouch!!!!) and external pacemaker wires, inserted right below your ribcage. Walking!!! Yes ouch ouch ouch, but it does get better and easier once the chest tube is removed. Laughing hurts, sneezing and oh for me that evil little hiccup! I also had to sleep in my lazy boy for almost a year, laying down was a miserable experience for the first six or so months and getting up from the chair was a much easier task(especially with having to get up to feed a newborn)  I had very little trouble with getting dressed, except what not to wear: bras(don't think that applies here for you David), jean(c-section). Very loose fitted clothing always the best. Oh and also you will feel exhausted just walking for a few months or more. I still tire easily. Yes you will feel changes with heart rate, bp etc so much more easily than every before. You will be a much more sensitive person, to sounds, touch etc.  Wow I am blanking of the physical recovery here, sorry. I shall update if I think of more. Mentally well that is a whole other recovery issue and it's the hardest to work through. The constant fear that your aorta will pop(even after surgery), feeling alone, feeling helpless, I really can't explain, I can say for me at least you kind of lose your mind for a min. But don't worry after you get past that you gain a whole new appreciation for life, for the small things, you eyes see everything, your ears hear everything, you see beauty that you never noticed before. You have this extra appreciation for life that the average person doesn't have. It becomes so much easier to find the positive in life instead of focusing on the negative like many people do. In a way my AD became a blessing, somehow I don't think that I'll look back when my children are grown and realize I didn't do enough etc, I know I will look back with tons and tons of fond memories. So in light of everything you are going through, know that the outcome in the end is a blessing.
Comment by Cheryl Kerber on January 25, 2011 at 17:10

Kimberlee and Graeme -- since you both have had the upper aorta issues - do you recall any helpful suggestions for David for after the surgery?  What I mean by that is - for me, with the ribs removed, I couldn't lift my arms to even put a t-shirt on.  My family ended up getting me a few button shirts and zip-up front sweatshirts as I could slide my arms in easier than pulling anything over my head.  I also needed sweatpant kind of pants as pulling jeans up and zipping and buttoning was very difficult. 

Showering was painful overall - it was like getting pelted with hail!  So the "showerless" soaps help to tide you over til you have the strength to actually wash.

If people offer to make you meals - take them up on it!!!  Tell your family to be open to it too!!  My husband had enough to handle with our 4 kids and me and work to even think of cooking! 

When the hospital staff wants you to get up and move just know that even though you will think they are nuts and it is very difficult as you will feel like you have lost all muscle strength in your body - it is the one thing that will put you on the road to getting back to being yourself!

I couldn't sleep in my bed for 9 months -- I slept in a chair (not a dining room chair mind you).  Easier to get up from than from the bed.

Get a ton of hugs in before your surgery!!!  For me, it hurt to be hugged even though it was something I really missed while I was recooping, so let your family know now, that it is a possibility that you might not be able to be touched and that it isn't their fault, that you love them, and know they love you.  It was extremely hard for my kids to grasp as they would come running into see me (aged 4, 8, 10, and 12 at the time) after they got home from school and my arms would automatically block my chest.  Totally a defense mechanism and it made me feel horrible and lonely.  I had to let them hug my head instead!  A heads up to your family might ease some of the emotional stress as they aren't going to know what to do.

I'm not trying to bum you out, but no one could tell me these things prior so I felt like I was the only one - that there was something wrong with me.  After I found this site -- that's when I found out I wasn't "odd".

Another suggestion for the ride home --- a van type vehicle, where you can kind of slide into your seat, will be helpful and a little less painful.  I couldn't have climbed up into our truck ( and if anyone tried to help me, it was like being stabbed in the chest - I had to be in control of my movements) so we used our Honda Civic (which is like dragging your butt on the ground) and that was a huge mistake.  I kind of had to "drop" into the car which was bad enough - but trying to pull myself out of my car --- I don't think I rode in that thing for a year afterwards.  I can now though :)  and maybe bring something to suck on for the drive as being on the meds can make you feel a little nauseous and that is the last thing you want to do after surgery - beyond coughing, sneezing, or laughing (the last one - don't give up the laughing, it's just gonna hurt).

You will do alot of soul searching and asking the "why me" and doing alot of "just help me through this".  Just know you aren't alone -- it's totally normal.  You are amazing that you even caught this!

You will get through this, as will your family and try the best you can to not feel guilty that they have to go through this.  It is out of your control. All you can do is go into it as positive and thankful(that they caught it) as you can.

I'm not going to lie and say it's a breeze, I've had a few doctors say that to me and I'd love to show them how not a breeze it was.  The reality I'm telling you is to help alleviate any after surgery shock and to let you know, that you aren't alone.  Don't be afraid to ask your docs any questions either --- in my drugged up state, I asked my well known surgeon "Will my ribs grow back?"  he of course stated plainly "No".

Take care --- huge hug sent your way whether you want it or not :)

Comment by Kimberlee Jones on January 25, 2011 at 15:17

Yes by all means, please encourage your family to come here and ask as many questions as they need.

 

Kimberlee

Comment by Graeme on January 25, 2011 at 9:32

Hey David

 

we are all with you here..hang in there..also let your family know about using this forum as we are here for them also.

 

Cheers

 

Graeme

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