Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection
I found out Wednesday that I'll need to replace the rest of my abdominal dissected aneurysm from the base of my sternum (my descending thoracic I had replace 12/28/04 in an emergency situation) down into my legs on July 7th of this year.
I know I'm going into it aware of all it entails, and in ways I don't know if that makes it worse or better since right now as too many of the post surgery memories from my last one continue to pop up - especially around 2am when I can't fall asleep.
It took 6 years to get where I'm at now even with knowing that my chances of having to have surgery again was high - I just am going to miss the strength I have at the present moment.
The being able to stand up, lie down, walk for a couple miles even up hills - and so forth, now I am just missing it even though my surgery isn't right here right now.
The memories of ICU and the tube in my throat choking me and feeling paranoid from the drugs that they were trying to kill me and then, when they told me we were going to try walking - I thought they were completely insane. I had no muscle strength left even though I was so strong just prior to surgery.
I can't imagine coughing, sneezing, laughing after surgery - as I still have pain in my rib muscles from my first surgery.
I can't do situps as is and now with the upcoming huge abdomen scar from my left rib cage through my belly button - well, let's just say I am realistic as any kind of surgery has pain and recoop time --- but when they say 6 months to a year --- I remember my first 6 months to a year - watching life go by at a pace I once did and I'm still not there yet after 6 years (not necessarily bad as it makes you look at life differently).
I will appreciate the surgery staffs gifts of care, the surgeons ability to heal that I remember the first go round, and the love and generosity of those who brought food and helped take care of my children so my husband could still work.
I lost a huge part of who I was 12/28/2004 and I've continued to grow in to someone "better" in ways - more appreciative - more aware - thankful each day I wake up.
I have no answers as to why. And living with it knowing it grows all on its own no matter how good I take care of myself and follow the "rules" is just Dissection Roulette - minus an actual physical weapon waiting to release the bullet, just a slight tear could disarm me permanently.
So shouldn't I appreciate that they are going to try and fix it? Why then all the nerves, sadness, frustration?
The answer is just unknown.
The fear of the reality that I already have known and experienced lurks by me like a cloud just waiting to rain on my parade.
I want to live. I want to heal. I want to go into this mentally strong so it won't take the same toll it did the first time around.
The human weakness strikes out of nowhere and one second I'm fine and then darkness strikes, even if for just a few seconds, making me swallow hard, holding back the tears so my children don't crumble because "Mom, is having a weak moment". It isn't fair to them.
I plan to survive the surgery - free of paralysis - free of the aneurysm/dissection - free of the ticking time bomb -- free of my label/excuse.
Thank you for letting me put words to this cloud - hopefully it will dissipate before July 7th.
I have read and re-read this and have no idea what to say to you right now. It's very frightening and I wish I had lots of strong words for you. Am having a weak moment for you because I can't hold your hand.
I'm just sending you my love and a huge hug.
You can use my personal e.mail - firstname.lastname@example.org - anytime if you need to scream or just a chat
I can pick messages up on my mobile.
I am starting to feel bad that I never seem to have the time anymore to spend any quality time in here - chaos reigns this year.
I think the one thing that would make me stronger on the run up to this operation is the fact that afterwards there will be very little if anything left of the troublesome aorta - you will be 100% dacron afterwards. despite suspicions to the contrary this is actually a fairly standard operation now (although it involves hypothermic circulatory arrest) and the percentages all look very, very good.
try and keep strong, both for your kids and husband, but mainly for yourself - if you find yourself having a "weak" moment feel free to message me here as I am usually near a pc and messages will be delivered to my mobile. chin up!
A question I had of the surgeon was because they are going to leave a space between the original graft and the new one -- wouldn't it bulge there at some point? He said if over time that happened (which would show on the annual catscan) then they would just go in and put a graft between both grafts.
Now I realize that the surgery I'm going to have is extensive enough as is as it involves my kidney arteries, my intestinal arteries on down into my legs (the gumby thing --- which I had to explain to him -- they don't quite get my humor, but sometimes that is all we got going into these things) and of course the risk of paralysis since it runs along the spinal chord ---- -but do you figure it's because they can't assure a tight seal to the existing graft?
The first surgeon I saw stated they might have to take out my existing graft and start all over --- that was why he was sending me to some place else and I respect his honesty. This surgeon it sounds like doesn't want to fix what isn't broke --- which I also respect.
I know I'm just being overly involved as I don't do surgeries obviously, and I'm trusting in God/Universe that the timing 7/7 at 7:30 is a good sign --- I like 7's and various other positive signs pointing that the time is now to have this fixed, but it still leaves room for apprehension.
The heaviest part for me is remembering the last one -- the long recovery, no energy, pain, feeling alone though everyone was around me --- even remembering what it felt like choking on the throat tube as I was trying to breath etc., on my own. Paranoia -- but a reality based paranioa.
It would be nice to just shut it off sometimes.
One thing though that I have going into this surgery that I didn't back in 2004 is YOU GUYS! This has been such a Godsend to me --- and maybe that's why I finally found this one after 6 years of searching --- timing is everything.
I had to kind of smile as my 11 year old has been doing percentages in math lately, and when this all started she demanded to know what the percentage of my aneurysm bursting was. My anxiety child just shot out - "just go get the surgery so I don't have to worry anymore" and this was before I had even seen the surgeons.
I didn't have an answer for her as I have never been told one.
But the surgeon doing my surgery ironically stated that at where my aneurysm size wise is right now is 8% (paralysis has a 10 - 15% risk) hmmmmmm, but that 8% had him assuring that the surgery should be this calendar year and overrides the other.
My daughter none the less was pleased to have a physical percentage to attach to my aneurysm and asked why I was waiting until July 7th? Just get it over with. Ugh, to be that innocent again.
glad to hear from you --- hope all is well in your part of this vast yet small world! Tornados are apparently becoming quite the issue in the middle US. We had one about 12 minutes drive from where I live -- but at least it was going away from me!!!
*hugs* Your a survivor already and I know your scared and I would be too. Know that you are not alone, you are in the thoughts of everyone here and we will be here for you as much as we can. You will be in our thoughts through it all. Keep your chin up, I will be sending positive thoughts your way.
Cheryl, like Alison, I do not know what to tell you after reading your post. You are our pilar of strength and you will continue to be after your surgery. Remember that you have a family on this website. I will be thinking and praying for you.
Thanks for the nice compliments and best wishes (all of you)--- hopefully I can be a great post surgery example too :) Maybe I need to do this to say there is success on the other side of more repair. We survived the first go round, just need a little tweaking. And I know that the saying goes that God won't give us anymore than we can handle --- and I understand that, but I sure would like to take a vacation from that concept.
I just got my paper work from the hospital with the whole schedule -- the actual title of my surgery is Open Surgical Repair of Thoracoabdominal Aortic Aneurysm. I get to drink a 10 ounce bottle of Magnesium Citrate between 1 and 4:00 on July 6th and they emphasize staying close to a bathroom ---- oh like that sounds like fun! I was relieved to read though that I can drink clear liquids (but not red jello?? kind of odd) from 4:00 to midnite as I am one that gets migraines when I don't eat. Since I check in at 5:30 am, I shouldn't be starving by then -- but you know how it goes, when you are told you can't eat - that is the time your body decides it's starving!!!!
It also says I can't wear nail polish --- now mind you, I'm not one that really does the whole nail thing as from my preschool teaching days I had to wash my hands way too much to sustain any "nice" nails --- but I was kind of hoping to at least paint my toe nails some fun color as it's the most color I'll see after the surgery --- hopefully wiggling at me to prove I'm not one of the 10% who is paralyzed from the surgery.
I know I'm sounding a bit flippant --- but really - it's all I got to keep my mood up --- kind of need to bring in some humor as the paper work has kind of made it even that more real.
Thanks for the prayers and great thoughts ---- I know I'll be visiting this site quite a bit over the next month!
I can't express how much appreciation and love I feel for all of you!
I can really empathise with you, as whilst your opp sounds more extensive than mine, I am having the first Dacron implant/replacement.
I feel your emotions in and pray everything goes well for you. I didn’t like the tube in my throat either & facing that again is going to be a challenge.
One thing to ask is about a lumber puncture to protect your spinal cord. I had it & expect to have it again as it’s been shown to prevent spinal injury during the opp – worth checking out. Downside is major headache & disorientation whilst your body tries to replace the fluid level – but it’s a small price.
All I can say is be strong, be positive & you can get through this.
You'll be in my thoughts. The waiting is one of the worst parts. Hopefully some of the drugs/procedures will have improved since last time (even when off my head after my surgery this year, they seemed to be managing it well), and you'll be able to pace your recovery well.
As others have said, we'll be here...
Have been away a bit so missed this post. You hang in there.. we are ALL here for you. I will have you very firmly in my thoughts and after the op as well. Many MANY hugs to you and your family...
From your online AD family..
Graeme and members..