Aortic dissection & aortic aneurysm information support group

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

Hi every one! 

I wanted to give you an update to my last postings.

After waiting all this time for the doctor to call me in regards to my endograft, today I found out he left the medical unit he was working for. The last time I heard from him was April 15, 2011. In a voice mail message he assured me he was making all of the arrangements for my surgery. I have been calling often for updates. I was informed he was on a trip and he will be back on May 13, 2011. His nurse informed me my test were sent to the surgeon that did my AD in 2009 for him to review. His office informed me the two doctors discussed my case and have decided to monitor me closely for now, and he will be calling me soon to explain. I was very surprised and frustrated today when I called for an update, and they did not know what to tell me because he made no other arrangements for my care. He did not even have the courtesy to notify me of the results of his conversation with the other doctor. After a meeting with my family and explaining the seriousness of my condition, he left me hanging. 

 

Any way, I just want you to know that although I struggle some days ( as we all do), I am doing fine. I am glad there is no surgery for now. I was very afraid. My doctor (AD), wants to wait and do another CT scan in August without doing anything now. In the mean time, I have to take it easy: no flying and no vigorous exercises. From now on the doctors in Chicago will take over my care. I am done with local doctors. This is the second one that fails me. In addition to the stress our condition causes, adding doctor's unprofessionalism... it can be too much.  

 

Thank you for all your support! I love all of you and hope everyone is well. 

 

Maria T

 

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Comment by Kimberlee Jones on June 3, 2011 at 19:55

Haven't heard from you in awhile. Please let us know how you are doing.

 

*hugs*

Kimberlee

Comment by Cheryl Kerber on May 20, 2011 at 2:48

I have felt the same way when reading your comments and such.  We have something going for us according to the surgeon I saw and that is that we are over all physically fit.  With surgery, and with it being planned versus an emergency would also be a bonus.

How large has your aneurysm grown as that is what they are using for the basis of doing my surgery?  They said 5 cm for a woman.  Now for my, my dissection runs from the base of my sternum down to my kidney arteries but the aneurysm is large and includes my kidney and intestinal arteries and that is why I can't do the through the groin endograft.  I will have to be cut open from my left rib cage down through my abdomen in the belly button area (not thrilled as again - lots of scars but I should just let that go if it means I will live longer) --- I'm 45, you'd think it wouldn't matter anymore - but, it does - psychologically.  He also would use the dacron (polyester type one like I already have in my descending thoracic) as they still don't know what caused my situation.  Noone tested my aortic tissue from my other surgery to make sure I didn't have that connective tissue disorder -- that is why they won't use my leg veins, plus he felt it was unneccesary.

If you are comfortable calling around and finding out about the doctors you are seeing -- I have gotten wonderful feed back on the surgeon I'm seeing, and like I said, my gut really is what made me comfortable - nothing against any of the other surgeons capabilities.

There has got to be someone top in our area of aortic need in Chicago --- I would think it would be equivalent to Minneapolis/St. Paul --- but if you just can't get it there --- this Dr. Timothy Sullivan at Abbott (I know it is a distance for you) - but they also have a pain clinic - which Fairview only put me on pain meds and that left me bruised and such as it thinned my blood to much.  There was never anything else offered.

I guess Abbott's surgical nurses are trained in Healing Touch --- and I can't explain or begin to tell you how important that has become in my life after my first surgery.

Also --- really weigh the odds of the two types of surgery --- I know you don't want the extensive as neither do I, but the success rate, location of the aneurysm, and so forth - really does have a play in the success rate.

They also told me there will be a specialist that deals with the whole spinal fluid pressure control during the surgery as our aneursyms run very close that the artery that feeds the spinal chord.

I too wish we could meet --- I know we aren't that far apart --- not really.  I wish I could trust flying - but I don't.  But that doesn't mean never though.

Just keep trusting in yourself and know that you aren't "odd".  Hopefully who you are seeing will be more helpful - more explanatory and just keep asking questions ---- if they are good - they shouldn't care how many times or how many different ways you might need to ask a question to clarify what is going on or what is needed.

But let me know what your aneurysm measurement is if you have it.  Mine was based on a catscan of course --- between 2009 and now is how much its grown.

I know you mentioned your kidney  - so I wondered what that all entails too.

Thinking of you - and please please keep in touch.  Sometimes, this is the only sanity I get in regards to this.

If I get a chance --- i could even check with Dr. Sullivan if he could recommend anyone in the Chicago area if you'd like.  Or if you'd like me to check on the one you are seeing.  You never know -- maybe their paths have crossed.

take care,

Cher

Comment by Maria Trinidad Herrera on May 20, 2011 at 2:08

Thanks Cheryl and Graeme for your support. My original doctor's office called today. He has been reviewing my tests and now that the other other doctor is gone, he is going to take over my care again. An appointment is set for June 16th with him and the cardiologist. He does not want to make any decisions without seeing me first. I am feeling good about this. 

Cheryl, according to your description, you and I have the same problem. But I am not as informed as you are. Thank you for explaining it so well. It helps me understand. I wish we could meet in person. 

 

Graeme I was thinking about you while I was watching the Royal Wedding. How beautiful it was!

 

Hugs and kisses to the two of you.

 

Maria T

Comment by Graeme on May 19, 2011 at 8:18

Hi Maria..

 

I read your latest blog post both with relief and frankly - disgust. Relief you do not have to go through surgery again just now and disgust at the way a so called professional has treated you. Sadly, whilst not this exact story - I have heard this type of thing before. The hippocratic oath seems to mean little to some of our health professionals these days, but on the other hand as Cheryl says something like this allows us to find a better solution and hopefully a better result. You take care.. You are a very special person and deserve the very best out of a very long life! 

 

hugs

 

Graeme

Comment by Cheryl Kerber on May 18, 2011 at 20:27

Glad to hear you are still here!  Frustrating to say the least when it comes to doctors though.  I too am now looking at having surgery this summer.  To be proactive the ER doctor wanted me to be in touch with a surgeon as my aneurysm has grown (I guess with type B they do tend to continue to grow, just the pace is always what is up in the air).  Plus with what you were going through and reading your info, I decided I should probably be smart and not have it lead to another emergency.

I met with the heart clinic at the hospital that did my original surgery.  The surgeon was at least honest and told me he was a bit overwhelmed by all the info I had brought with, so I met with him last Wednesday, so he had 2 weeks to go over my stuff and discuss it with his co-surgeons.  Well, he at least was quite descriptive and explained the concerns and so forth, and admitted that they are not "skilled" in what I need to have done, since none of them have ever done my type of surgery --- they deal with the aneurysms that don't put your kidneys and such at risk, like mine does.

I appreciated that fully and he wanted to send me to Mayo in Minnesota which I know has top surgeons in many areas of health care.  But the hour and a half drive just didn't sit right with me as when I would have surgery, I would want my family and friends close by --- I know it's selfish in a sense as really I should be looking at the "best" facility for what I need done versus having the closeness of family near by.

But instead, I contacted another hospital (Abbott) here in Minneapolis/St. Paul, as it is closer, and thought I would just get a second opinion.

I met with the surgeon today, let me just say, that my initial gut feel was positive -- not like I felt with the last surgeon I met.  Very calm, confident, understanding, and really listened to me.  I was so glad my husband came with to hear everything as there was alot to hear and absorb.  Ironically, he's done surgery at Mayo -- another plus.  He talked that this is something I can survive (the surgery that is) - the biggest risk of course is paralysis from the waist down, due to the arteries feeding the spinal chord pretty much in the area of my aneurysm.

My aneurysm has grown from a 4.3 to 5.5+ in a year which I guess for women especially my size - about 5'4" is equivalent to a man's being 6+.  He said women's aorta tissue is thinner or something like that compared to men, so they tend to do surgery sooner for women at the lower size.

I can't explain that even though the thought of surgery again is so overwhelming, I actually had some sense of peace come over me.  I of course have the option to wait as you have to weigh the risk of rupture against the risk of surgery ( mine leaning more towards the risk of rupture - but since we aren't God, we really don't know how fast or how long it could take).  But all in all, I would end up with surgery here sometime down the road.

I know you all understand, that the mind game that this condition plays on us, is almost worse than the surgery itself.  I have gotten almost 7 years out of my first surgery, and the surgeon appears to be quite confident of the survival rate and the success rate of the surgery I would have to have.  Paralysis was a concern the first time around and will be the 2nd time around.  But right now, I'm not allowing the thought in.

Even if this doctor you have been seeing were to come back in to the picture --- you really need to search your gut feel in regards to him.  I realize that "life" happens for those people too --- situations that can run out of their control and sad to say, even their jobs get pushed to the side, but you have to trust what feels right inside for you. 

I know the larger cities have the better chance of having more experienced surgeons and so forth, so I wouldn't hesitate to stick with that either.  I also have learned that different doctors respond differently to the same info --- 2 surgeons within the same area gave me totally different vibes in regards to what is going on with me, and that definitely has made me non-hesitant to seek a 2nd or even a 3rd opinion in regards to issues as ours.  Granted - in an emergency situation, you kind of get what you get - but you just hope God will take care of that guess work.

I am so happy that you are in a good place right now and always always stick up for yourself and trust what you feel inside.  You will just know.

Love ya!!!

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