Aortic dissection & aortic aneurysm information support group

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

I'm back --- still drugged up quite a bit --- but I'm here

I'm not going to say that everything is wonderful and pain free and perfect as I think you all know that would be false but I have to say, I'm glad to be on this side of it.

I'm back home now - got home Saturday afternoon.  They got the Heparin level to a point where I don't have to give myself shots (there was no way - as is I got to the point of crying just seeing the lab people come in to draw more blood.  They all tried so hard to not hurt me using pediatric needles, warming the area etc., but just having been stuck so many times developed scar tissue and well, it just didn't want to allow the needles to go through).

Turns out I have this Factor 10 issue in my blood that intefers with getting a true measurement of how thin my blood is (so the standard INR doesn't work for me).  Right now I'm good according to my blood draw today - I have to go back Thursday for my next draw.  I never was put on blood thinners after my first surgery so this is new to me.

My scar doesn't look so bad but it lets me know it's there.

The surgery itself I guess went well - was supposed to be 4 - 5 hours, but ended up being 9 since when the surgeon went to work on my arteries to my kidneys, the tissues kind of fell apart, so he ended up replacing the whole thing.

Now they are doing a bunch of testing (I meet with a genetic counselor soon) as they are still stumped by how, why, and so forth for someone starting at 38 and ending up with 2 surgeries for this issue.

I get tired easily, but they keep reminding my of everything they had to do including shutting down my systems.  My white count finally came down - they don't know if my spleen was rebelling having been monkeyed with.

I know I'm jumping all around here - I have had to accept to stay on the 2 at a time NORCO pain meds every 4 hours as when I've tried to cut back, I regret it as I feel like I'm crawling out of my skin.  I just don't like not being able to type and read and stuff like that as you can't focus very well.  Just writing this consists of many backing and rewriting.

I'm so thrilled to be on this side of the surgery.  I'm thankful for all of your well wishes and prayers.  Alison I will be in contact soon.  Every day is a bit different, but I'll try to be in touch.

I'm just glad to be home.  The hospital was wonderful, and the nurses I could never thank enough.  I'm amazed by how far our medical system has come (even though my surgery was still the old standard) there are options out there.  Now I just have to take it one step at a time to become the best "new" me possible.

Love ya guys,

Cher

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Comment by Cheryl Kerber on August 19, 2011 at 13:44

I was hoping to touch base with you as you have been on my mind quite a bit as I think we have similar conditions in regards to our aneurysm/dissection.

One thing I can attest to, is that we can survive another surgery as long as you have confident well qualified surgeons and hospital staff.

I know you are in the Chicago area --- but if you can't find someone you trust or can't have that gut feel connection, I have to say that the surgeon I had Dr. Sullivan I would recommend in a heart beat.  He trained and did surgeries at Mayo Clinic in Minnesota and now works at Abbott Northwestern in Minneapolis/St. Paul Minnesota.  They actually took everything a step further to look into how or why this has occurred for me.  I'm not sure why the surgeon I had that did my surgery back in 2004 didn't pursue anything at that time.  I know it's been 6 years, but you'd think they woud have at least run a test on my aortic tissue.

I have several hospitals around where I live, and not all of them can handle what we have, so I feel I was guided to the right place and the right people as I originally started with a different surgeon (he at least told me he couldn't handle it).

I think about you alot like I said (not that I don't think of everyone else on this site - but I can relate very much so to you).

I would even offer up my house for you to recoop in.  I'm within 20 to 30 minutes (depending on traffic from Abbott).  So if you ever get to that point --- or if you know the surgeons - I could always check with Dr. Sullivan to see if they know of them as I feel that these specialists probably run into eachother at conferences and such.

Please keep in touch ---- and let me know what they have said about where you are right now --- size etc.,

Cher

Comment by Maria Trinidad Herrera on August 19, 2011 at 3:01

Cheryl, I am so glad you are back and getting better everyday. You are amazing! What a role model you are for us! We all know the pain and hardships of the surgery and the recovery. You make it sound easy. Thank you for giving hope to the rest of us.  

Hugs

Maria T.

Comment by Harry on August 7, 2011 at 12:18

Just to say I am REALLY glad your OK & the worst is behind you! Keep up the fight & don't let it get you down - its all down hill now!

 

Take care

Harry

Comment by Kimberlee Jones on August 6, 2011 at 16:09

Hugs!!!!!!!  So happy to have you back with us!  Oh geesh, more *hugs*.

 

*hugs*

Kimberlee

Comment by Richard Deal on August 3, 2011 at 19:47

Richard likes this!

You'll have to let us know more about the factor 10 tissue and the aorta falling apart when you feel up to it, but it is good to hear from you. walk one step at a time, and remember if you need to fall - we have your back!

you take care, said with a little dance and a hop, skip and a jump!

r

Comment by Julia Holley on August 2, 2011 at 12:10
Well done, I know you dont know me but I have been following your progress since I joined and am delighted that you can now communicate again.  I remember that being a big moment for me.  Keep up the good work and keep us posted.  Love Julia xx
Comment by Graeme on August 2, 2011 at 8:07

Cheryl,

 

so wonderful to hear from you! Yes it's going to be a long road but we are all here for you! You are an amazing person - a very gracious and brave person - and I personally salute you! Take care, get better, wrap your family and friends around you and stay strong...

 

We love ya too :-)

 

Graeme  

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