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S

starkone

Well-known member
Joined
May 29, 2002
Messages
120
Location
Sarasota, Fl
Well, I just got back from Brigham for a repeat echo stress test. Needless to say they didn't do the stress test because my valve was found to be a .4!!!
Yikes!!
This was not what I expected.
To make a long story short....they immediately booked my surgery for March 15. I got to come back to the warm weather for 10 days. I will make the trek back up to Boston on March 12 for pre tests etc.
They will be doing (hopefully) minimally invasive AVR by Lawrence Cohn. Of course this will depend on the cath that they will do the morning of the surgery.
The good news is I got to see my first snow in about 30 years. I did see some small stuff in NC. It was exciting.
I am coping better than expected so far. I am freaking out and not able to concentrate....I dialed the Delta number 5 times for tickets and couldn't focus on the recording :) I just want this over now. They successfully scared the sugar out of me....I now even believe I need surgery.
They said they will use a Magna tissue valve? I still have to look up stuff on this one.
I will keep all informed...
Thanks for making me an informed patient.
Karen
 
Dear Karen,
You are in great hands- Dick had Dr. Cohn perform minimally invasive surgery in December of 2003. He also has an Edwards Magna bovine valve. You can read about it at http://www.edwards.com. We wish you the best and hope that your experience at Brigham is as good as his was and that you have a uneventful recovery. Please feel free to email us if you have any questions about Boston or Brigham - we will be glad to help in any way we can. Enjoy the snow - we are wintering in FL, but our home is in CT and we don't miss it, but enjoy watching it on the weather channel! :)
 
starkone said:
Well, I just got back from Brigham for a repeat echo stress test. Needless to say they didn't do the stress test because my valve was found to be a .4!!!
Yikes!!
This was not what I expected.
To make a long story short....they immediately booked my surgery for March 15. I got to come back to the warm weather for 10 days. I will make the trek back up to Boston on March 12 for pre tests etc.
They will be doing (hopefully) minimally invasive AVR by Lawrence Cohn. Of course this will depend on the cath that they will do the morning of the surgery.

Karen
Click to expand...

Yowser, Karen, your experience was alot more exciting than mine. I'm glad you found out what was going on, and am sorry you're having to get ready for this right away mentally! In a way, though I almost envy you. At least you'll have it behind you and now you can coach me through mine!
How will they work your follow up? How long will you have to stay in Boston post surgery? Who's going to take care of you? Nosy aren't I LOL?
 
Hi Karen

Hi Karen

Karen:
My thoughts and prayers are with you for a successful surgery and safe trip. Believe it or not, I think it's actually a blessing in disguise having your surgery date so soon, it gives you less time to build anxiety over it. Remember "this too shall pass". Keep your head up. We're all here for you.
Dawn
 
Thanks

Thanks

Thanks so much for your kind responses.
I am in the process of making all the arrangements for the trip to Boston.
The whole family is coming up on the 14th and staying the week with my husband ....(who hates hospitals and all that goes with it!) I think he is worse off mentally than I am!
I feel a little relief that I have made the decision on where to go, who to do it, etc. Now getting me on the plane will be the next big hurdle! ;)
Thanks again.
Karen
 
Know where you are coming from

Know where you are coming from

My CT results showed the ascending aorta to be 47 mm up to the mid arch, I talked to my surgeon on the 2nd of march and he told me that he found it to be 50 mm in several spots. Unfortunatelr I need to get my dental work done before surgery. I had 2 cavities filled on the 3rd and will have my wisdom teeth pulled on the 7th, and then hopefully get the surgery done 2 weeks after that. Good luck to you and we will all be thinking of you.
 
bear said:
I talked to my surgeon on the 2nd of march and he told me that he found it to be 50 mm in several spots.
Click to expand...
:eek: Danger Will Robinson: and he's comfortable with waiting for dental work to be done? My aneurysm blew before hitting 5. You sir, are a walking time bomb waiting to explode.
 
Wow

Wow

Again Bob...
Thanks for much for your help. I guess I am getting a top of the line valve!
It was interesting that at Brigham both the cardio and the surgeon said
"I would recommend a tissue valve for you". Whereas here (Sarasota) they both said mechanical. For some reason I just feel that a tissue is the way for me to go. It is like a gut thing and I never vary from that feeling.
So, from here on out, I just hope that my gut is right.
I got all the info from Brigham and things are all go. I am scheduled for March 15...in the morning. They seem to be really organized up there! I hope that means they don't forget any instruments!X
Thanks again for all your help.
Karen
 
Karen,
They are really organized and you will find that things go smoothly from day one. You will have one nurse just for you in ICU and one per three patients in the step-down unit. We found everyone in the hospital to be courteous and they all seem to go out of their way to be helpful to the family as well as the patient. They have great family support. There are computers with internet access and printers in the family waiting room. I hope your husband or another member of the family will be able to post for you and let us all know how you are doing. It's great that you both will have a large support system. Keep up the great attitude and we wish you an uneventful and speedy recovery. You will have great weather to get back to speed when you return to FL. Dick did it in 10 degree weather for the first seven weeks and it was not fun!
 
Just wishing you luck.

Just wishing you luck.

Karen. For some time now I've felt that being stuck in the waiting room is a real drag. I was supposed to be 85 before I needed an AVR and now it's happening in 6 months or 6 years but almost certainly before I turn 60. The not knowing when is very aggravating. YOU on the other hand have been dealt this almost immediate blow and are handling it with grace and intelligence. You have taken charge of your situation and seem to have a natural instinct which you have learned to trust. How can you lose??

Thank you for sharing your journey so far. There are so many here on this forum who can guide you through the next 10 days. You're going to be great!

I'll be thinking of you on the 15th. Best of luck!

Marguerite
 
Hello

Hello

Hello Marguerite,
This actually isn't a shock to me. I was diagnosed 3 years ago at just about your age. Luckily, I have had time to search and search and search. After that when the time came....I just had to find how to get what I wanted.
It is amazing. I am anxious but not like I was before all the plans were finalized. I couldn't call it peace, I would call it resignation. Now, I just WANT IT OVER! and get the heck out of limbo!
THis time will come to you too. Hell, that waiting room is not fun....almost like the dentist!
Thanks ever so much for the support.
Karen :D




Marguerite53 said:
Karen. For some time now I've felt that being stuck in the waiting room is a real drag. I was supposed to be 85 before I needed an AVR and now it's happening in 6 months or 6 years but almost certainly before I turn 60. The not knowing when is very aggravating. YOU on the other hand have been dealt this almost immediate blow and are handling it with grace and intelligence. You have taken charge of your situation and seem to have a natural instinct which you have learned to trust. How can you lose??

Thank you for sharing your journey so far. There are so many here on this forum who can guide you through the next 10 days. You're going to be great!

I'll be thinking of you on the 15th. Best of luck!

Marguerite
Click to expand...
 
Reply to Bear....

Reply to Bear....

Regarding Bear's message in this thread:
"My CT results showed the ascending aorta to be 47 mm up to the mid arch, I talked to my surgeon on the 2nd of march and he told me that he found it to be 50 mm in several spots. Unfortunatelr I need to get my dental work done before surgery. I had 2 cavities filled on the 3rd and will have my wisdom teeth pulled on the 7th, and then hopefully get the surgery done 2 weeks after that. Good luck to you and we will all be thinking of you."

You have bicuspid aortic valve disease, and I want to encourage you to find expertise in that condition. Here are some links for you, and if you would like some information about expertise in your part of the country, please email me....

http://www.bicuspidfoundation.com
http://www.cedars-sinai.edu/aorta
http://www.slrctsurgery.com/Thoracic aortic aneurysms.htm

Best Wishes,
Arlyss
 
Been there, done that!

Been there, done that!

Dear Karen:

Phyllis alerted me to your post about your upcoming surgery. I had my minimally invasive AVR last July with Dr. Cohn. He's the best! Not much of a talker, but he'll get the job done. I don't know if you have all your plans finalized, but here are a few things that might help.

My wife and I flew to Boston from Tampa on Jet Blue for $99 each round trip. We stayed at the Landmark at Longwood which is about 1/2 mile from BWH. It is an assisted living facility, but they have one floor dedicted to families of patients at BWH. The price is very reasonable, they have a partial kitchen in the room and cooking facilities down the hall. There is drugstore and supermarket nearby. They also pay for one round-trip cab fare per day to BWH which is deducted from your bill. My wife and I stayed there 3 days before my surgery (visiting some friends who lived nearby) and a week after before returning to St. Pete for convalesence. We live up in the Panhandle, but have a condo in St. Pete. We spent another two weeks in St. Pete before driving home (my wife did the driving). Check out the Landmark @ 866-975-1700.

I was 65 when I had the surgery with the bovine tissue valve. I don't regret it, yet! Dr. Cohn also discovered an ascendig aorta aneurysm when he opened me up, so he repaired that, too. My valve was 0.7 when I had the surgery and I was beginning to feel it. My last echo two weeks ago was 1.75, and I've been doing great. I play singles tennis five days a week plus weights 3 days a week.

I had lots of time to consider my surgery, having been diagnosed in 1993 with AS (1.4 at the time). I monitored it with annual, then semiannual examines and finally decided to do something about it. My first cardiac surgeon wanted me to do a mechanical valve, but after discovering ValveReplacement and doing extensive research I decide to go with MIAVR, bovine, and Dr. Cohn. The best decision I ever made. The staff at BWH are the best. I was supposed to be released after 5 days, but developed an unknown source fever so they kept me another 48 hours until it subsided. They never did discover the source.

I hope this helps. If you have any questions, you can private mail me. I wish you the best in your surgery and will be looking forward to hearing you're back with us. This is a great website, as I'm sure you've disovered!

Randy
 
Thanks Randy

Thanks Randy

Randy'38 said:
Dear Karen:

Phyllis alerted me to your post about your upcoming surgery. I had my minimally invasive AVR last July with Dr. Cohn. He's the best! Not much of a talker, but he'll get the job done. I don't know if you have all your plans finalized, but here are a few things that might help.

My wife and I flew to Boston from Tampa on Jet Blue for $99 each round trip. We stayed at the Landmark at Longwood which is about 1/2 mile from BWH. It is an assisted living facility, but they have one floor dedicted to families of patients at BWH. The price is very reasonable, they have a partial kitchen in the room and cooking facilities down the hall. There is drugstore and supermarket nearby. They also pay for one round-trip cab fare per day to BWH which is deducted from your bill. My wife and I stayed there 3 days before my surgery (visiting some friends who lived nearby) and a week after before returning to St. Pete for convalesence. We live up in the Panhandle, but have a condo in St. Pete. We spent another two weeks in St. Pete before driving home (my wife did the driving). Check out the Landmark @ 866-975-1700.

I was 65 when I had the surgery with the bovine tissue valve. I don't regret it, yet! Dr. Cohn also discovered an ascendig aorta aneurysm when he opened me up, so he repaired that, too. My valve was 0.7 when I had the surgery and I was beginning to feel it. My last echo two weeks ago was 1.75, and I've been doing great. I play singles tennis five days a week plus weights 3 days a week.

I had lots of time to consider my surgery, having been diagnosed in 1993 with AS (1.4 at the time). I monitored it with annual, then semiannual examines and finally decided to do something about it. My first cardiac surgeon wanted me to do a mechanical valve, but after discovering ValveReplacement and doing extensive research I decide to go with MIAVR, bovine, and Dr. Cohn. The best decision I ever made. The staff at BWH are the best. I was supposed to be released after 5 days, but developed an unknown source fever so they kept me another 48 hours until it subsided. They never did discover the source.

I hope this helps. If you have any questions, you can private mail me. I wish you the best in your surgery and will be looking forward to hearing you're back with us. This is a great website, as I'm sure you've disovered!

Randy
Click to expand...
Thanks Randy for all the info. I had just written you an email to the address that Phyliss gave me. There may be more questions there.
I have just finish all my arrangements for the Brigham trip. I have reservations at the Marriott Copley for 12 days for husband etc. Luckily my daughter in law works at Marriott Headquarters so we get fantastic deals if they are not booked. It is just a few stops away on the T so it shouldn't be a problem. I felt the same as you about my first visit with Dr Cohn. Very nice but short on words....that was ok with me cause I had most of my questions already answered. It is ironic that I too was told to get a mech valve. I know alot of people are fine with them but I was not. I was a very active competive tennis player at the 4.0-4.5 level before they curtailed it about 18 months ago. I switched to golf without missing a beat and am enjoying that alot. I am not sure that I will take up the tennis again or not. I do not miss all the _itchy women and all that goes with the team stuff. :) I had the same partner for the last 19 years and I do feel bad about leaving her in the lurch....only time will tell.
I think it is interesting that both Dick and you are tennis players. Small world.
What club do you play out of in Pensacola. Last time we went to state championships our team lost to Pensacola :(
Well, thanks for your help and if I think of anything else I will be sure to get in touch. Check your email.
Karen
 
starkone said:
Thanks Randy for all the info. I had just written you an email to the address that Phyliss gave me. There may be more questions there.
I have just finish all my arrangements for the Brigham trip. I have reservations at the Marriott Copley for 12 days for husband etc. Luckily my daughter in law works at Marriott Headquarters so we get fantastic deals if they are not booked. It is just a few stops away on the T so it shouldn't be a problem. I felt the same as you about my first visit with Dr Cohn. Very nice but short on words....that was ok with me cause I had most of my questions already answered. It is ironic that I too was told to get a mech valve. I know alot of people are fine with them but I was not. I was a very active competive tennis player at the 4.0-4.5 level before they curtailed it about 18 months ago. I switched to golf without missing a beat and am enjoying that alot. I am not sure that I will take up the tennis again or not. I do not miss all the _itchy women and all that goes with the team stuff. :) I had the same partner for the last 19 years and I do feel bad about leaving her in the lurch....only time will tell.
I think it is interesting that both Dick and you are tennis players. Small world.
What club do you play out of in Pensacola. Last time we went to state championships our team lost to Pensacola :(
Well, thanks for your help and if I think of anything else I will be sure to get in touch. Check your email.
Karen
Click to expand...

Had to laugh at your _itchy women quote. Must be the same everywhere. That's why my wife vows never to take up the game. I play at Bluewater Bay, which is about 60 miles east of Pensacola (Niceville). They've done well at state championships, but don't follow the details. If you're a tennis nut like me, you'll be back. I was just getting back into tennis in October when I had an emergency appendectomy, so was delayed for another 3 weeks, but I'm at it in full force now. I'm saving the golf for when I'm too old and feeble to charge the net. I haven't had a chance to check my e-mail yet--I'm at the local library, but will when I get home and will try to answer any questions you have. Sounds like a good deal with your lodging. My wife hated Boston. We're really spoiled with Florida living.

Randy
 
I knew you two would hit it off- must be the "tennis" connection. I don't play, but my daughter-in-law who does has complained about the women in organized leagues as well,- a bit "catty"!!
"I'm saving the golf for when I'm too old and feeble to charge the net." Hey Randy, just switch to doubles- Dick has some down here he plays with that are well into their 80's- not much of a game, but they are still playing! I told him that I am going to inscribe his frequent complaint on his tombstone: "They never hit the ball to me!" :)
 
The dreaded appointment

The dreaded appointment

We all hated that appointment I think. (the one where you get the news that you need surgery)

I was pretty much in denial after my doc told me and was pretty much decided that I didn't really need it. My surgeon straightened that out after he cut into me and found things much worse than anyone anticipated!

It sounds like you have a good plan in place and a good valve and the op is likely to be a breeze. You'll find for all the scareyness that it's not all that bad really and you'll feel a million times better after.

wishing you the best,
David C
 
kizzy

kizzy

starkone said:
Well, I just got back from Brigham for a repeat echo stress test. Needless to say they didn't do the stress test because my valve was found to be a .4!!!
Yikes!!
This was not what I expected.
To make a long story short....they immediately booked my surgery for March 15. I got to come back to the warm weather for 10 days. I will make the trek back up to Boston on March 12 for pre tests etc.
They will be doing (hopefully) minimally invasive AVR by Lawrence Cohn. Of course this will depend on the cath that they will do the morning of the surgery.
The good news is I got to see my first snow in about 30 years. I did see some small stuff in NC. It was exciting.
I am coping better than expected so far. I am freaking out and not able to concentrate....I dialed the Delta number 5 times for tickets and couldn't focus on the recording :) I just want this over now. They successfully scared the sugar out of me....I now even believe I need surgery.
They said they will use a Magna tissue valve? I still have to look up stuff on this one.
I will keep all informed...
Thanks for making me an informed patient.
Karen
Click to expand...
Hi Karen, I just found out Weds. that I need an aortic valve replacement. Which valve are you having done? I am 53, my mom had OHS for 4 arteries 25 yrs ago and is going strong at 81. All she complained about after was, it hurt when she coughed. I wish you all the best!
Pam
 
kizzy said:
Hi Karen, I just found out Weds. that I need an aortic valve replacement. Which valve are you having done? I am 53, my mom had OHS for 4 arteries 25 yrs ago and is going strong at 81. All she complained about after was, it hurt when she coughed. I wish you all the best!
Pam
Click to expand...
Hi Pam, check out the post-surgery threads, you'll see Karen had her surgery and is back home in FL. I'm having aortic valve replacement in May at the Cleveland Clinic. Keep in touch with the group--we'll all get through this together!!
 
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