Sooner than expected... What do I do??

[savysmommy]

So, March 23rd 2005 was my first apt with my cardio. I found out at that apt that I have a BAV. At that time, my heart measured 46. After a TEE, & stress test, I was put on a calcium channel blocker. Last week (3.5 weeks after being put on meds) I had a recheck and my heart was 48. The doc had explained that there is room for error etc, but wanted me to double the dose of my meds and come in one week later for another recheck.

Yesterday was my recheck- My heart is now 52. My cardio said that I will probably need surgery much sooner than originally though. He asked me if I new what hospital I wanted to go to. Of course, I have no idea! I had kind of expected all of this to happen more gradually..

I go in again next week.. In the meantime, what should I do? Should I start searching for a surgeon? Should I contact my insurance and find out how they pay for these types of things? I have no idea what I should be doing.. and I don't want to end running out of time..

Also, he said I have a small aneurysm (sp). Its 3.9.. he didn't say where, I am assuming its the ascending. At what point do they want to fix this? He said that its mandatory replacement at 5.5.

Sorry this is so long.. any advise would be greatly appreciated! I really want to be prepared before all this happens.

Thanks again,
Shannon

 

[ALCapshaw2]

When your Cardio asked you what hospital you wanted to go to, it would have been appropriate to ask HIM what hospital and surgeon he recommends for your condition. You could still ask those questions, either in writing, or by telephone, or request another appointment, whichever he prefers/requires.

VR.com has several members from Washington state so you may also want to ask them who they used and who they consider to be the 'best' in the area. You might start with a SEARCH for Keyword "Washington" and see what turns up.

It sounds like you have some time to get ready, but
YES, it is time to start looking. Better to have a surgeon and hospital lined up for when the time comes than to be trying to make these decisions from an ER!

While you are getting recommendations, also check with your insurance company to see who is on their "Preferred Provider" list. If you are interested in a surgeon / hospital that is NOT on that list, then ask if you could use such a surgeon with a REFERAL from someone who is a 'preferred provider'.

Good luck on your quest!

'AL Capshaw'

 

[momshell7]

Sorry to hear it's happening so soon!

Sorry to hear it's happening so soon!

One thing you need to do to prepare is ask lots and lots of questions!! No question is too silly to ask. Every question is important. There are lots of people on this site that have been through what you are going through, so ask anything you need to. Also make sure you are comfortable with your surgeon, your life with be in this person's hands. You can search on this forum if you would like to look up a certain topic. There is a wealth of information to be found.

Wishing you the best.

Michelle

 

[Johnny Stephens]

Hi Shannon - I'm near Seattle and may be able to help. I had my surgery at UW in April 2002. If you're in this area I can probably give some idea of where to start around here at least. There are also serveral others from WA on here, as Al has mentioned.

As you're seeing now, the commotion and uncertainty around scheduling and hospital / surgeon choice is *very* stressful. It seems you have a good idea of *what* to do, but are uncertain as to the *when*. Looks to me like you should start the insurance queries and surgeon quest NOW

Lots of us have been there - we can help.

 

[savysmommy]

Thank you all!
Al Capshaw -My doctor did talk about some of the hospitals. He talked about some of the benefits of each and definitely leaned towards one of them because of his connections. He didn't go into specifics and recommend a surgeon. We didn't really talk details..

Michelle-
Thank you so much! I am making a list of questions, including the silly ones!

Johnny- I am in the Seattle area too! My doc is part of the eastside cardiologist. He recommends Overlake. He talked about the benefits of UW and it being a teaching hospital, etc. I am kind of leaning towards Overlake.. because my doctor can be a part of it, and stay in contact easier. But.. I really don't know anything about any of the hospitals or surgeons. How did everything go at UW? Who was your surgeon?

Pam-It does feel like a big wall! I suppose I can deal with these things.. in strides, that is. But it makes a huge difference when they tell me its going to be much sooner. I don't have nearly as much time to let this all sink in. I was talking with my fiance last night about getting a living will. That's kind of scary.. But, I suppose its a good idea to have one anyway.

I have a call in to my doctors office to see about getting a name of a surgeon he might recommend. I just hope that I have enough time to do all of this. I am worried that they will want to do something really soon and I wont know anything! Any idea how big they will let your heart get before operating? Is there like a magic number that signals surgery ASAP ?

Shannon

 

[geebee]

Shannon,

I am sure the speed must be a shock but you can get through it.

Definitely find out any restrictions from your insurance company. It makes no sense to decide on a hospital or surgeon and then find out your insurance company will not pay. Make sure you find out about pre-authorizations, co-pays, etc. so there are no surprises.

Once you know the insurance part, talk to everyone you can. If you are fairly sure of a hospital, go there and talk to the OHS nurses. Many of them will be happy to discuss doctors as they want to take care of patients who have the chance of doing well.

Deep breathes, small but regular steps, and you will be through this faster than you will imagine.

 

[PJmomrunner]

The only thing I would add to what everyone else has already said, is to ask for a referral to an aorta/aortic valve specialist, not just a cardiothoracic surgeon, so that you are seen by someone with a particular interest and lots of experience in your specific problems.

Thank you all!
Al Capshaw -My doctor did talk about some of the hospitals. He talked about some of the benefits of each and definitely leaned towards one of them because of his connections. He didn't go into specifics and recommend a surgeon. We didn't really talk details..

Michelle-
Thank you so much! I am making a list of questions, including the silly ones!

Johnny- I am in the Seattle area too! My doc is part of the eastside cardiologist. He recommends Overlake. He talked about the benefits of UW and it being a teaching hospital, etc. I am kind of leaning towards Overlake.. because my doctor can be a part of it, and stay in contact easier. But.. I really don't know anything about any of the hospitals or surgeons. How did everything go at UW? Who was your surgeon?

Pam-It does feel like a big wall! I suppose I can deal with these things.. in strides, that is. But it makes a huge difference when they tell me its going to be much sooner. I don't have nearly as much time to let this all sink in. I was talking with my fiance last night about getting a living will. That's kind of scary.. But, I suppose its a good idea to have one anyway.

I have a call in to my doctors office to see about getting a name of a surgeon he might recommend. I just hope that I have enough time to do all of this. I am worried that they will want to do something really soon and I wont know anything! Any idea how big they will let your heart get before operating? Is there like a magic number that signals surgery ASAP ?

Shannon

 

[Johnny Stephens]

Shannon - I sent you a PM

 

[EVELYN]

Hi Shannon

When it was time for my husband, Tyce, to have surgery, our cardio recommended three surgeons and three different hospitals....all about 60+ miles away. He said they were who he would use. We had consults. We also checked with a friend of mine who handles medical malpractice, and she helped us narrow it down to one cardio thoracic surgeon. We then had another consult with him, discussed valves, etc. and decided we both liked the vibes we got and the information he gave us----especially how many heart surgeries he did a year and what Tyce's chances were. The hospital handled all the insurance needs, but he was in both our plans, so we were very lucky.

Whatever you do, ASK QUESTIONS!!! I wrote everything down and then came back to this list and discussed it with everyone here. By the time the surgery day came, I did feel as though we were prepared......not because of the dr. or hospital, but because of this list.

I'm sure everythng will be fine.....Tyce was much less worried than I, but he did try to fix everything prior to surgery....not necessary. We did have wills, added a living will and health care proxy, discussed everything including funeral services.....totally unnecessary......but necessary in my opinion.

Remember, we are all here for you. This is a wonderful site made up of people who support you and know lots and lots about OHS.

Good luck with your decision.

Evelyn

 

[T-Money]

Sounds Like It's Time

Sounds Like It's Time

Hi Shannon.
The best advice I can give you is to do your research on the hospital/surgeon and once you have found it, schedule it. As long as your insurance or whatnot supports it, search as far as you are willing to travel for your surgery. Don't limit yourself to the local hospital and the local surgeon. From what I have seen, the best surgeons tend to cluster together at good hospitals. Be sure to shop around. The benefit to taking a proactive stance on this stuff is that you can pick who you want rather than letting the people in the ER decide for you. Once you pick out who you want, schedule it ASAP. Give yourself a little time to get your ducks in a row, but don't try to put it off for months. You never know when things will go south. I think one of the keys to my surgery/recovery success is that I got to do it on my own terms. I had time to get all of my financial stuff in order for my wife, arrange for family to help out, and so forth. I was able to go into my surgery relaxed, knowing that if something went wrong, everything was taken care of. The hardest thing for me to do was to make the surgery my number 1 priority. Once I did that, I got it done. You can also count on the fact that you have a huge online support network at VR.com. That helped me out a ton. We will all be here for you.

 

[KathyH]

Shannon, it is a shock to find out it is time. Feels like you got the wind knocked out of you. Just take one thing at a time. As the others suggested, find out about your insurance and where it covers. Johnny is a veteran on the site, and since he is from your area, he can give you the best information. I always felt that a surgeon and a hospital that specialize in valve surgery are the best places to go, but you have to be comfortable where you go. No question is a dumb one, we have all been there. Don't be afraid to ask, or even just vent. Good Luck.
Kathy H

 

[Gail in Ca]

A good ? for your cardio is "Which surgeon would you want to operate on YOU or your sister, mother, etc." That's what I did and got one of the best surgeons in the country. Then you ask your insurance or look in the booklets they give you if that doctor is covered by your plan. Of course most surgeons only work out of one or maybe two hospitals and that would need to be covered as well. Good Luck!
Gail

 

[Bionic Man]

Hope all goes well!

Hope all goes well!

I had a BAV and aneurism at 4.6 My surgery came up as a surprise after doing fine for a long time.

In my story... I had insurance problems and was denied at the hospital my doctor recommended. So after spending a long time on the phone I was able to find a new hospital and after talking to my doctor again he recommended a surgeon at one of the hospitals I was covered for. The doc did an awsome job and I'm here to tell the tale.

Basically make sure you have insurance stuff pre-authorized just in case.

Try not to worry as the anticipation is worse than the actual thing. I found surgery really not that bad. My cath (which they didn't put me out for) was not cool but I felt immediately better after surgery and had so much energy.

I hope your surgery goes well. (getting the news is the worst) Find some good ways to relax like self-hypnosis stuff and accupuncture, massage etc and try not to worry.

 

[savysmommy]

Thank you!
Gail, great idea about asking my cardio what he would do... I will spring that on him at my next visit.

Bionic Man, Insurance is definitely a huge factor in all of this. I have already made sure each surgeon is within my insurance 'network'.. I called my insurance a couple of weeks ago and asked them some general coverage questions. They had told me that once I find a surgeon/hospital to have them submit something to the insurance so that I can get a better idea of how much out of pocket I will have to spend.

I think overall I am handling this well. What are the options, really..? If the valve needs to be replaced then lets get it over with and move on, right? At least that's how I feel.

The hardest part for me has been figuring out where and who I want to do this. I have a REALLY hard time making decisions, and I have never had to make a decision like this. I really don't know how I am going to decide. I have ruled out traveling out of state. But, that still leaves several hospitals and dozens of great surgeons.

Then, I have the other choice of what valve.... another big decision I don't want to make!

I have an apt this week with a surgeon and one next week. I am hoping that I will be enough for me..

Thanks again everyone!

 

[perrybucsdad]

The only thing I would add to all the other wonderful advice is to Pray. You'd be suprised at how it helps.