Frustrated/Vent

[musician2k]

Not sure how common this is, but am having trouble/getting mixed messages regarding my surgery. So far, only had a cath & a CT scan. Was told after the scan was in that I'd "be called with a surgery date." Well, no one called & so I called THEM. Was told my info had been looked at by another surgeon (at my request, the surgeon who was tagged to me the day of my cath is gone this week on vacation) and he didn't see an emergent need for me to be scheduled for surgery THIS week, and that the vacationing surgeon will look at it next week, upon his return. I went ahead & asked to be seen by a different surgeon (someone who was said to be more experienced with AVR & aneurysm repair) and have an appointment with him in his office next Wednesday. I couldn't find out the results of the CT scan, but was told from the echo my aorta's dilated 5cm. This may or may not be true, I don't know. Aortic valve is functioning "surprisingly well" considering it's pretty battered, LV is normal & heart function overall is normal. I'm somewhat symptomatic (migraines, some fatigue, much worse fatigue when I was working full time, which I'm not) but I'm not experiencing syncope or excessive SOB. Thoughts? Is my experience somewhat normal? Should I be doing anything else?

 

[Ross]

Your doing all you can until they get off their rumps and make a decision. Perhaps your not going to keel over tomorrow, but nonetheless, your showing need and soon. Personally if your at 5cm, I see no sense in waiting. Mine never made it to 5 before it blew. Many times they open you up and find it to be much worse then previously thought too. I think I'd tighten up the saddle straps and ride them some more if I were you.

 

[dj/utvolsfan]

Hey there,
Frustrating, isn't it? I went to Cleveland Clinic (first week in February) on a referral from my WV cardiologist. Received new diagnosis and news of impending surgery. Was told surgery should be sooner than later. (Wanted to wait til June so I could still teach the rest of year.) CCF insisted on surgery asap. I ended up getting a call 4 weeks later with surgery date for early April. It took several calls on my part to get some kind of window on the surgery date. I knew it was in the works and just had to be patient as far as getting the actual date.
You would think it would be faster than it is...but Cleveland obviously has high volume of surgeries and understandably methodical in scheduling. Where are you going?
Hope this helps! Best of luck to you!
Debbi

 

[musician2k]

Yep I think you're right Debbi, these places just have their methods & ways of doing things. I'd considered going to the Cleveland Clinic but was concerned the same type of thing might happen there (like you said, high volumes) and so am sticking with my first decision, the Heart Center there in Indy. They called this morning with a surgery date (were they reading my posts here on VR.com? ) and so I'm looking at July 11th as the BIG day now. The surgeon I wanted is available, looked at my stuff and felt it was safe waiting that long. I feel comfortable with that as well. If that changes, I'll call them back and see if i can get something sooner. Thanks again list, for all the great support & ideas

Chris

Hey there,
Frustrating, isn't it? I went to Cleveland Clinic (first week in February) on a referral from my WV cardiologist. Received new diagnosis and news of impending surgery. Was told surgery should be sooner than later. (Wanted to wait til June so I could still teach the rest of year.) CCF insisted on surgery asap. I ended up getting a call 4 weeks later with surgery date for early April. It took several calls on my part to get some kind of window on the surgery date. I knew it was in the works and just had to be patient as far as getting the actual date.
You would think it would be faster than it is...but Cleveland obviously has high volume of surgeries and understandably methodical in scheduling. Where are you going?
Hope this helps! Best of luck to you!
Debbi

 

[Marguerite53]

Okay, Mr. Music! I've put you on the calendar for July 11th! Reality sandwich now being served!!

Don't know whether to run screaming from the building or dance with relief, hunh?? Many, many of us have been there! You'll probably come up with a whole new set of questions as you advance toward your big day, so write them down when you think of them, and get back to us.

Wishing you all the best. Try to enjoy this time before your surgery. Really stop and smell the roses. It will help so much.

Take care. Marguerite

 

[musician2k]

Thank you Marguerite. I really appreciate your support! And yes I'm sure I'll have some questions but honestly, a lot of them have probably already been answered here on the board, somewhere. I'm just glad we finally have a target and aren't in "limbo."

Okay, Mr. Music! I've put you on the calendar for July 11th! Reality sandwich now being served!!

Don't know whether to run screaming from the building or dance with relief, hunh?? Many, many of us have been there! You'll probably come up with a whole new set of questions as you advance toward your big day, so write them down when you think of them, and get back to us.

Wishing you all the best. Try to enjoy this time before your surgery. Really stop and smell the roses. It will help so much.

Take care. Marguerite

 

[Georgia]

Hi, Musician. I presume you're not pushing very hard exercising or jogging at this point? That's a pretty big aneurism, and probably running around in the heat isn't a great idea; or lifting weights, etc.

Glad you have a date. Got a recliner?

 

[Mary]

It's always good when you finally get a date. A little scary sometimes, but at least you have a definite timetable to work with.
Enjoy the next 5-6 weeks, and like Georgia said, don't go taking any chances at this point. You'll be able to do all you want to do soon enough.

 

[musician2k]

Yep thanks guys, I AM taking it pretty easy. Does that mean I shouldn't do ANYTHING?? I mean, my surgeon hasn't put me on restrictions....on the other hand, no one wants this thing to blow before I have a chance to get it fixed. I got a copy of my CT scan today, and it showed a 4.5cm enlargment, not 5cm, but that .5 of a cm doesn't do much to calm my fears, per se I'm definitely not jogging, nor lifting anything heavy for a few weeks. I cancelled my gym membership until well after surgery. But I'll get back to that, in due time......

Hi, Musician. I presume you're not pushing very hard exercising or jogging at this point? That's a pretty big aneurism, and probably running around in the heat isn't a great idea; or lifting weights, etc.

Glad you have a date. Got a recliner?

 

[jiniani]

I'm in similar situation as well. I've aneurysm as well as stenotic aortic valve. My aneurysm stands at 5.2x4.7 cm. I've been given conflicting information by two surgeons. One surgeon says I need to replace root, ascending aorta and aortic arch . The other one says I don't need to replace root and arch just the valve and ascending aorta... I'm really confused about this.

 

[Adam T]

Hi Musician,

I was surprised at how vague the answers I got from my Docs were as well.

I just checked the calendar and your date is exactly 5 weeks to the day after my surgery. I will definately be thinking of you.

I had a hard time with waiting for my surgery. I am not a very patient person and I had about 6 weeks to wait. That was my choice though, because I had several business trips I wanted to get out of the way first. Lucky for me my surgery wasn't an emergency.

 

[musician2k]

post-op issues

post-op issues

AdamT & Others:

I guess one of my bigger concerns has been mentioned before on this board. May others seem to report getting sick after surgery while in the hosp, that is, vomiting, intense nausea, etc. Is there any way to avoid this? Isn't vomiting the LAST thing they'd want you doing, just a few hours post-op? I mean, if a person's still intubated, it's downright DANGEROUS, right?

 

[MikeHeim]

To answer a couple of your questions:

I played it pretty safe leading up to my surgery. My Cardiologist said NO weightlifting, but I was OK exercising otherwise as long as I kept my HR under 130. I just did stuff at the gym that had HR monitors so I could keep a close eye on this. I was told to stop immediately if I started to get any SOB. All of the restrictions were the reason that I tried to get my surgery scheduled and over as quickly as possible.

As far as post-surgery nausea, I had an issue with morphine and vomitting the night after. Dry-heaves, actually, since I didn't have anything in my stomach. That was probably the most intense pain that I felt through the entire ordeal. I think the only way to avoid this is to know what drugs you might be sensitive to. For some reason, my college "experimentation" did not include morphine, so I never knew I had an issue. As far as whether it is dangerous - I would be really surprised. Maybe someone else has a different outlook...

 

[musician2k]

I guess I figured if you're pretty "out of it" post-op, that maybe a person couldn't avoid respirating while vomiting (sorry to be so gross, but this is kinda gross stuff I guess). I don't think I've had morphine in high doses before (cough syrup ) Hydrocodone, I have had. That stuff made me pretty nauseous after my gall bladder was removed, so I'll tell them about that, for sure.

To answer a couple of your questions:

I played it pretty safe leading up to my surgery. My Cardiologist said NO weightlifting, but I was OK exercising otherwise as long as I kept my HR under 130. I just did stuff at the gym that had HR monitors so I could keep a close eye on this. I was told to stop immediately if I started to get any SOB. All of the restrictions were the reason that I tried to get my surgery scheduled and over as quickly as possible.

As far as post-surgery nausea, I had an issue with morphine and vomitting the night after. Dry-heaves, actually, since I didn't have anything in my stomach. That was probably the most intense pain that I felt through the entire ordeal. I think the only way to avoid this is to know what drugs you might be sensitive to. For some reason, my college "experimentation" did not include morphine, so I never knew I had an issue. As far as whether it is dangerous - I would be really surprised. Maybe someone else has a different outlook...

 

[Adam T]

I got really sick in the middle of the night while I was still in ICU. Fortunately, I was extubated very quickly so I didn't have anything in the way. I think it was the anasthetic. I was under for at least 10 hours because of some bleeding issues, so I had a lot of 'the juice". To be completely honest with you I had projectile vomiting. It was painful, but once it was over I felt so much better. I may have made things worse on myself because I was so thirsty when the tube came out that I ate a ton of ice chips. Everyone kept telling me to slow down, but I didn't listen and I paid for it later.

Remember, this is very common, you are in ICU with lots of attention, and they see it a lot so the nurses know what to expect and exactly what to do. You'll be well taken care of while you're there. I had no more nausea after the first night.

Incidentally, my surgery was on 6/6/06 so my Dr. and the ICU nurses and I had a big laugh about "The Exorcist" the next morning. If you've seen it you'll know what I'm talking about. She didn't seem to mind that I got her all messy. The nurses in ICU were so awesome to me and my family.

 

[musician2k]

Adam - that just sounds terrible! Yeah I've seen that scene from the Exorcist and certainly wouldn't want to live through that after having had OHS! How did you tolerate the PAIN??? Why didn't they give you anti-nausea meds IV?

And, more importantly, how're you doing now?

I got really sick in the middle of the night while I was still in ICU. Fortunately, I was extubated very quickly so I didn't have anything in the way. I think it was the anasthetic. I was under for at least 10 hours because of some bleeding issues, so I had a lot of 'the juice". To be completely honest with you I had projectile vomiting. It was painful, but once it was over I felt so much better. I may have made things worse on myself because I was so thirsty when the tube came out that I ate a ton of ice chips. Everyone kept telling me to slow down, but I didn't listen and I paid for it later.

Remember, this is very common, you are in ICU with lots of attention, and they see it a lot so the nurses know what to expect and exactly what to do. You'll be well taken care of while you're there. I had no more nausea after the first night.

Incidentally, my surgery was on 6/6/06 so my Dr. and the ICU nurses and I had a big laugh about "The Exorcist" the next morning. If you've seen it you'll know what I'm talking about. She didn't seem to mind that I got her all messy. The nurses in ICU were so awesome to me and my family.

 

[DM2059]

M2K,I am 46 and had my surgery on 5/16 (avr only). I had to wait 5 weeks from the time I scheduled it. Just use this time to get all your ducks in a row and use common sense in regards to work or physical activity. Try to trust the doctors. When I awoke in the ICU it was not how I had imagined it would be. I came to this website before the operation and read ALOT. Most of it was comforting and informative and some of it was scary. Try not to project to much. I had minor issues with nausea in ICU and they gave me something for it. End of problem. Believe me,they watch you like a hawk. I drove a car two weeks out and went back to work part time exactly one month out. Your going to be fine.

 

[Adam T]

The pain wasn't really that bad. At least it wasn't as bad as I imagined it would be. The worst pain I had was a very sore left shoulder right when I got home. I sat around with a heating pad on it for a few days and it went away.

Like DM says, they watch you like a hawk in ICU. You'll be fine.

My surgery was two weeks ago and I'm already felling much better. I'm walking a lot and my appetite is back.

 

[musician2k]

thanks

thanks

Thanks to everyone responding to this thread. I was frustrated and now I'm more calm, since they called & scheduled the surgery. It was just hard being in limbo....

I go back & forth between being calm & being scared outta my BRAIN but I think that's probably pretty normal. I'm just trying to find relaxing things to do at NIGHT, when those scarier thoughts tend to enter my mind....and sleep becomes a problem. Overall I'm doing okay, though.

Again thanks for all your support!

 

[Sherry]

fellow Hoosier...

fellow Hoosier...

Hi, Chris (fellow Hoosier). I'm sorry to hear about this period of uncertainty. I see that you are seeing someone at the Heart Center. Is that the one affiliated with Methodist or one of the others? Regarding exercise, I think you're wise to take it easy until the surgery. I didn't but I also didn't realize how bad it was, plus VR.Com wasn't around, and I wasn't near as educated as I am now. I can't be of much help with the nausea issue as it didn't seem to bother me much. (I was dealing with an effusion though so maybe I didn't notice it as much.)

You are in our thoughts and prayers as you near the big day. Please keep us posted.