can we complain about the waiting room for a moment?

[Duff Man]

Warning: Toxic morale ahead.


Is anyone else sick of being in the waiting room for an aneurysm or valve replacement? Does it seem like an exercise in futility to anyone else? I was calling it the "living room" for a while, but my tolerance is just too low for waiting for the big something or the big nothing to happen. Just the thoughts and the possibility of the cessation of the thoughts post fix make surgery seem worth it.

I have an aneurysm, I have chest pain daily/hourly, I just had a PE (3 actually) so I'm on coumadin anyway... I just want to get this crap over with. I'm so frustrated that I want to quit trying... but to quit trying is to quit living... which is completely not acceptable. At the same time, to care too much is more like dying all the time.

I just don't feel like its humane to let a person know they have a time bomb in their chest, and then tell them it's some kind of educated guess as to the safety and risk category. What kind of quality of life does a person have with a ticking time bomb permanently embedded in them? I'm just saying (and complaining), if only for that reason, I think we should accelerate the resection of aortas. I am exceptionally fatigued from the awareness of the disease.

To say one could get in a car accident tomorrow so why should anyone worry is completely bunk, because I could too. People somehow think it's good medicine to remind them they're healthy yet they could die too. What they're unaware of is that we have an equal chance of dying with an added 4-5% per year because of the aneurysm. And it's not just any death, either... it's an excruciatingly painful, nightmarish, helpless death where we might not even have enough time to tell a loved one we love them.

I literally go around telling people I love them now. I don't even care. They can think I'm fruity. I just don't want to be "that guy" that bites the dust and everyone felt like it was some kind of cosmic karma thing. I want people to know i really enjoyed their kinship/company.

So seriously, can the medical field please dramatically expedite advancements in the treatment of aortic disease?!?!?

 

[kfay]

Duff, Seriously, where are you in all this right now? Have you seen a surgeon again since your big push (a couple of year ago if I remember correctly?)? Has the size of your aneurysm changed at all? I really would have to think you could find a surgeon willing to go ahead and fix you given the fact that you are experiencing chest pain daily and suffering with anxiety from all of this. I'm sorry, I can't remember where you looked previously, but perhaps it's time to undertake a surgeon search once again.

I really understand where you are coming from. I only waited 4 months once I found out I needed surgery and the wait was really the worst part of the whole process for me. If you are ready to get it taken care of, I really think they should be willing to go ahead and do it.


Kim

 

[skeptic49]

I can understand your frustration, knowing that you and I have this problem in our chests that will eventually need to be fixed, but not now. I like to tell people it's like driving on a bad tire that could blow out at any time. Who would do that? But it's not up to us exclusively as to the timing of surgery. What I try to do is put it out of my mind and lead my life as normally as I can. I have some "minor" symptoms probably related to AS, which prevent me from doing everything I used to do and everything I want to do. I just do as much as I can and try not to dwell on it. I would say hang in there, you're not alone in the "living room."

Best wishes,

Jim

 

[Michelle D]

Sorry you have to go through this. I waited 6 months for my surgery and it would have been longer if they didn't take me as an emergency. The night before I went to the ER that day I told my husband that I know what it feels like to be dying. I went to the ER and I was in severe heart failure, I had very low oxygen saturation, and I felt my life being sucked away. I was 27 years old mind you. But I understand the frustration. So no dates have been set for you?

 

[guyinva]

While I haven't been waiting anywhere near as long as some have, I was in your situation at first. Just wait and watch. I kept having chest pains and my surgeon said that since he could not absolutely say they were not coming from the aneurysm, even though I was not at the "magic number" for surgery, he has agreed to go ahead with the surgery. As kfay said above, I would think you should be able to find a surgeon that would agree to go ahead.

 

[Debbrn]

Been there done that. It is miserable. I also got weary from the watch and wait. Sorry you are having to wait so long.

Debbie

 

[Jkm7]

The waiting is brutal.
I agree with the others that suggest you see another surgeon.

I hope you get the help you are seeking very soon.

 

[Duffey]

I remember the wait. It stinks. Get a petition together, and I'll sign it.

 

[Gail in Ca]

I never felt I was 'lucky' to have had 3 surgeries that all had to be done pretty quickly, until I read your post. I am sorry that you are made to wait. Is it an insurance thing, that the doc has to prove you need the surgery now? Or are they just being conservative, like it seems all cardios and surgeons are, about doing the surgery, or waiting until your symptoms are really affecting your life. Maybe, you need to exaggerate your worsening symptoms? This last go round, after my 6 wks of antibiotics to kill my infection, I thought I might be having SOB, or even CHF, with crackling in my lungs. Of course, when I went to my cardio, he couldn't hear these symptoms, but after all I've been through, he believed me, took me seriously and admitted me to the hospital. A few weeks later, I was having my 3rd OHS. Well, I hope you are able to get your surgery sooner than later. I just don't understand why docs wait for a certain size, when the tissue itself could be in very bad shape, just holding the aorta together, and they don't know it until they get in there and see it first hand.

 

[ALCapshaw2]

Duff, Seriously, where are you in all this right now? Have you seen a surgeon again since your big push (a couple of year ago if I remember correctly?)? Has the size of your aneurysm changed at all? I really would have to think you could find a surgeon willing to go ahead and fix you given the fact that you are experiencing chest pain daily and suffering with anxiety from all of this. I'm sorry, I can't remember where you looked previously, but perhaps it's time to undertake a surgeon search once again.

I really understand where you are coming from. I only waited 4 months once I found out I needed surgery and the wait was really the worst part of the whole process for me. If you are ready to get it taken care of, I really think they should be willing to go ahead and do it.


Kim

My thoughts exactly.

Many Surgeons take both the Numbers and Symptoms into consideration when deciding on the timing for Surgery. Maybe it's time to talk with an experienced Aorta Surgeon (again).

'AL Capshaw'

 

[mecretired]

Duff Man: My heart goes out to you. I found out I had an aneurysm of my ascending aorta (already at 5.4) on March 19 and had surgery on May 3. Those intervening days (although they were very few) were some of the most anxious I've ever been thru. So I can only imagine what you are, and have been, going thru. If venting helps, please come on back and do it again.