Surgery in May.....waiting for info and scared!

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ruthienc1

ruthienc1

Well-known member
Joined
Feb 20, 2008
Messages
163
Location
Greensboro, NC
Hi! My name is Ruth and I'm a 64-year old who has just found out that my aortic valve will need to be replaced fairly soon. A cath is scheduled in the next two weeks and then we will know more. This is scary because I have severe pulmonary fibrosis (from sarcoidosis) which raises the surgical risks for me. Is there anyone out there who has faced a similar problem? Is the minimally invasive operation best for folks with bad lungs? Any doctor and hospital recommendations? We know I'll be travelling!
 
Not much help...

Not much help...

Sorry...I don't think that I can be of much help. I'm sure there are lots of people on here that can give you direction for a hospital or surgeon. You also might Google your condition. You might possibly start with a phone call or two to the top cardiac hospitals...such as Cleveland Clinic. If they aren't tops in that area, they might be able to steer you in the right direction.

I wish you the best of luck in your search. Honestly, that was the most stressful part of this process.

God Bless!
 
Welcome aboard Ruth.

Complex surgeries are usually best handled by the Major Heart Hospitals. The Cleveland Clinic is the #1 rated Heart Hospital (see their website...they even offer a 'second opinion service' at a reasonable charge).

Others in the SE include DUKE in NC, Emory Crawford Long Hospital in Atlanta, GA, Vanderbilt (and St. Thomas) in Nashville, TN, UAB (The University of Alabama at Birmingham), and Shands in Florida (along with extensions of Cleveland Clinic and maybe also Mayo).

With your history, I expect any of them would talk with you on a 'self referal' basis. Usually they will want copies of the actual tapes from your Cath, Echo, TEE and any other tests you may have had.

Good Luck in your Quest.

'AL Capshaw'
 
Unfortunately, I can't answer your questions, Ruth, but I wanted to welcome you to the VR community. Sorry for the circumstances but glad you found us before your surgery. Best wishes and good luck.
 
Second opinions...free?

Second opinions...free?

Not sure what the protocol is, but I was able to obtain two free second opinions from top surgeons (for my Ross procedure). I found the two surgeons' office numbers and put in a phone call...they both returned my call that day. They were happy to give a free second opinion, as long as I mailed them all the info that they needed...echo's, MRI's, EEG, etc. Not sure if this is typical, but doesn't hurt to ask!

In my opinion, you are your best advocate to seek top notch care. I wish you the best!
 
Ruth,

I, too, just wanted to welcome you and say that it's perfectly normal to be scared. We all were. I'm sure you'll be getting more responses to the lung question based on all the experiences here. Wishing you all the best -- there are a lot of great hospitals with great surgeons. Al has mentioned some of them.
 
Sorry i dont have any answers either but just wanted to say welcome and wanted to wish you the best of luck for surgery, when you get a date. Hope the cath goes well.
 
Scared?

Scared?

Hi Ruth,

I'll echo what's been said about it being normal to be scared when you're facing AVR surgery. This said, it's worth saying that there's more to be frightened of if you weren't facing surgery. The outcome without surgery is certain and it's not positive.

If you've got complicating factors like lung issues, please heed the advice that's been offered about seeking a medical facility that has the specialists who will provide the best opportunity for a good outcome.

I have no doubt that you'll find the courage to deal with what you're facing. Just dig deep and take things one step at a time. Don't be afraid to seek support from members here. We'll do our best to help get you through this.

-Philip
 
Feeling encouraged- thanks!

Feeling encouraged- thanks!

Thanks to all of you for your encouragement! My cardiologist has made the initial contacts at Brigham and Womens and also Duke, and now I'm waiting to see if anything turns up on the cath Monday. Things are looking promising. For me the uncertainty is the hard thing! Thanks for all your kind words......:)
 
good to hear you're already getting something from the site; the waiting is definitely the worst part. I'm not much help with hospitals, but wanted to welcome you, and encourage you to post any more questions you may have - and you will have more, I am sure !
 
Hello Ruth and welcome. I'm probably the closest candidate to you as far as lungs go. Mine are fibrosed from scar tissue and repeated bouts of pneumonia. The question is, how is breathing right now for you? If it's ok, then you shouldn't have any real problems, though you may be slow coming off of the ventilator. I'm on 4 lpm continous oxygen and it was difficult to get me off the vent.
 
CHDDoug said:
Not sure what the protocol is, but I was able to obtain two free second opinions from top surgeons (for my Ross procedure). I found the two surgeons' office numbers and put in a phone call...they both returned my call that day. They were happy to give a free second opinion, as long as I mailed them all the info that they needed...echo's, MRI's, EEG, etc. Not sure if this is typical, but doesn't hurt to ask!

In my opinion, you are your best advocate to seek top notch care. I wish you the best!
Click to expand...

Hi Ruth - I was hoping Ross would see your thread and respond with his experienced words.

And also I thought I'd quote Doug here to echo him because I think it's really good advice and several of us here did pursue consults with more than one top notch surgeon; I saw three just to be extra sure.

It sounds like you're going to do that--good! I felt like after I mentally acknowledged what must be done, and after I found the right surgeon, then I had less anxiety. Hope all goes well; take care and post again.
 
Hi all! The cath is over and done and no blockages were found! That will certainly simplify the AVR......and, the more information I gather, the less fear I have, in spite of the lung issues. Right now it looks like I will be going to Brigham and Women's to Dr. Cohn in May sometime, if all goes as planned. Has anyone had experience there? Thanks for your help.......Ruth
 
Ruth, good news on the cath. You will be in excellent hands and at a wonderful hospital. Dr. Cohn did Dick's AVR and we were extremely happy with the care that "both of us" got at Brigham. Please feel free to pm me with any questions you may have.
 
I understand Ruth!

I understand Ruth!

Hello Ruth!

I understand your fear! I didn't have near the pulmonary problems you have, however going into my arotic valve replacement we knew that my lungs would be the biggest threat. I have asthma and usually have pneumonia 2 times a year. I also had other problems such as not having a spleen which means I cannot fight any infection. So I was scared silly!

After much doctor searching and hospital reviews I told my family that the final decision would be mine. I opted to stay at home and have my surgery at the University of Tennessee Medical Center. I could not have received any better care anywhere in the world! My surgeon is top notch...he went into the surgery knowing my problems and reassuring me...he was always a phone call away when I encountered any problems. He had me moved from the floor back to CCU a couple of times...he came to the emergency room to see me after I was released and then started having breathing problems. He cut me loose this week and when I thanked him for being such an extraordinary doctor his reply was, "You were my patient. You were sick and needed help. That is what I am here for." I was never just a number or name on a file to him.
He viewed me as a real living, breathing person and for that I am grateful! His name is Dr. Raymond Dieter. I owe him more than I can ever repay! The nurses, other doctors, even the dietary and aides were so kind and caring! When I was not doing so well the nurses would sneak my husband and son back to the CCU to spend time with me, especially if I was awake.

It was a hard decision for me to make Ruth...there are so many great hospitals out there. However, after all I have been through I am glad that I stayed close to home...if for no other reason than the after I was released and started having problems care. The doctors that had treated me were right here and knew my situation. I got much comfort in that. I wouldn't want to go to the ER and not have anybody know what problems I was experiencing. So weigh your options carefully!

Please keep us updated on your prognosis. Good luck with your heart cath.

Hugs from the heart!
Jane
 
Hi Ruth, I am also 64 and had my AVR on Feb 15th. So far I am doing fine. One thing I would recommend is to get done as soon as you can. My wife and I are in the final stages of building a new home and we considered waiting until April to give us time to finish the house and move in. After talking to Dr Craig Miller at Stanford we realized it was more important to get it done ASAP. I am so glad I have it behind me now because the surgeon had to do much more then valve replacement and he said my aorta was so thin I could have gone down any day with no hope of being saved even if I were sitting in the emergency room when it happened. (A ruptured aorta is what happened to the actor John Ritter). As is typical of construction the house is not going to be done until end of March anyway so timing was good. If May is the only time then so be it but if you have a choice I would do it sooner.
 
I am 66 years old and had aortic valve replacement six weeks ago (1/22/08) I had minimally invasive. I had no lung issues. I feeling a little better every day. I did have A-Fib while in the hospital and I am on 40mg of Sotalol twice a day for that and have not had a reoccurance.
Earline
 
May 15th is the date!

May 15th is the date!

Hi all- thanks for your responses! Things are falling into place. My AVR is scheduled for May 15th, admission for May 12, at Brigham and Women's in Boston. Dr. Lawrence Cohn will do the surgery. Any thoughts on the hospital or the surgeon? My hope is to be up and about and able to do stuff by June 23rd, when we have a little granddaughter expected to be born........great incentive!

Ruth
 
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