Need some support!

[Tom F.]

FYI - I am in Elmhurst, eastern part of DuPage county.

 

[afraidofsurgery]

Getting that Egyptian disease called DE-NILE is helpful.....but reality still burned in my head. Getting as much information as possible helped. This web site helps. Surrounding myself with positive, supportive people helped. God helped me most of all and I firmly believe I wouldn't be here today if not for him. (Don't know if you believe but I thought I'd throw that in.....don't want to offend.)

You are NORMAL. Well, sort of. Everybody who has faced this surgery goes through what you're experiencing one way or the other.

Now, it's been 10 years and this doc seems like a good guy so have him hook you up with a good surgeon. It's time and it will make you feel better because only a surgeon can REALLY tell you what you want to know now. Trust me, I'm a nurse. (I know Ross will get a kick out of that statement.) Hope this helps.

I actually saw the surgeon first over 10 years ago (from a friend's referral), then he sent me to the cardio. I've sinced researched him and he's among the best and specializes in aortic valve repair/replacement. My next appt with my cardio is end of July and I know he's going to have me schedule surgery soon after that. I think he knows I'd need a little time to have this sink in (not that anything's happening I made it all up anyway). What I need to do is talk to my family about it. We're very close and once they catch wind of it there's no turning back. They'll have a schedule all worked out w/ who does what when, etc.

Right out of grad school I took an awesome job in San Diego in the biotech field and at the same time went to see a cardiovascular surgeon at Scripps and she started hounding me. I freaked out 'cause all my family and support and familiar teaching hospitals were back home in Chicago, so I high-tailed it back here (unfortunately goodbye San Diego) but I'm glad I did. Maybe you guys will understand that but most people are dumbfounded when I tell them I left the beach. All I could think of was going through open heart surgery with my friends and family thousands of miles away - yikes!

Anyhow, all your thoughts and advice are so much appreciated. I so much want to avoid thinking about all this but have to keep it in front of me. I keep thinking of Arnold Schwarzenneger - he had surgery before he "needed" it for an aortic valve replacement to get it taken care of in 1997 when he was 49. BTW his tissue (not sure - human?) valve is still intact. The best thing for me is for my symptoms to remain noticeable. And they're not going to go away, so I will just "go for it". Once I put my mind to something, there's no getting in my way. Well, this has maybe but there is as a friend once said "a definitive treatment". Again you're all awesome, thanks for being there for me.
Patty

 

[Glenda]

Patty, I'm sorry I haven't answered your post sooner but I've been having computer problems again. I think I may have it licked now.

Talk about denial! I had it big time. I know if I had waited two weeks more I wouldn't be here now to talk about it. I was going down big time. I have had two cancer surgeries within the last five years along with finding out that I now have CML (chronic myloid leukemia.) I sure didn't want to have open heart surgery, but if I wanted to live I didn't have a choice. To tell you the truth the heart surgery is a piece of cake compared to having the leukemia. I am on a new chemo/cancer medicine for the leukemia and I have so many side effects from this medicine. My heart is doing great and I can do so many things that I couldn't do before.

God has been so good to me and I know that He is still in control. I was so lucky to have found this site before heart surgery. The people on here are wonderful and will give you great advice. You actually can talk to them better than you can your own family or friends. They have "been there, done that." Remember that if God brings you to it, He will bring you through it.

 

[Guest]

I'm in Wheaton - not as "far out" as Elgin!

LOL! That isn't far from Elgin at all .

FYI - I am in Elmhurst, eastern part of DuPage county.

I know where that is ... Elmhurst has a cruise night every Wednesday night. I believe at least one other of us Chicagolanders lives in Elmhurst, too.....

 

[Vicki448]

Been There; Done That

Been There; Done That

Patty,
I think so many of us have been where you are now - needing the surgery and afraid of it. I saw a cardio in June and had surgery that following August and knew very little about what I was getting into. I simply believed in my doctors and had faith they were leading me in the right direction. That was 3 years ago. What convinced me about the surgery was knowing that I would have an easier recovery and outcome having had the surgery while I was in "great" condition. The longer I waited, the older I would have become and the more stressed my heart would have been. It was only after the surgery - those days when I was doing well to sit in a chair and scroll the mouse - did I find this website and so much of what I read was a comfort. I also had to limit what I read - reading about others and what symptoms they had convinced me that all of what they were experiencing would eventually happen to me! I had no symptoms whatsoever....I went in for a sinus infection and the dr. heard the murmur. I had severe regurge and never knew it. So now I have a ring around my valve and I'm good as new. Am I fixed for life? Let's hope so, but perhaps not...I might have to do it all again; depends on the ring and its effectiveness. But, I'll cross that bridge when I get there. Take the advice of your drs. Get that second opinion. Have your surgery before the wear and tear on your body from a malfunctioning heart puts extra stress on things. I was 48 when I had my surgery....they called me a "whipper snapper" in the hospital. My best advice to you: listen and believe in your doctors and don't let someone else's woes become yours. There is comfort and understanding here at the website. I couldn't have gone through what I did without the support of many people here. Best of luck to you. Have faith in a higher power; my faith was with God and still is. He saw me through my surgery and the years since. God is good.

~Vicki

 

[bvdr]

I don't have much to add to what everyone else has said but I know what you mean about it being good to have some symptoms to remind you that you are facing something necessary. I had a lot of symptoms and it was a relief to know my surgery was near. Some people have said they had no symptoms and I can only imagine how hard that makes the choice of proceeding with surgery.

Welcome to this board and I hope it provides you with what you need to get ready for this phase of your life.

 

[DebbiN]

Responding to "afraid of surgery"

Responding to "afraid of surgery"

I too am afraid of this valve/aneursym surgery that everyone keeps urging me to consider 'Asap". I work for my internist, which can be a blessing and a curse. They think I need the surgery like tomorrow, my cardiologist says "very soon", a specialist I saw at Duke 6 months ago says within the next 5 years, but I am seeing him again tomorrow, as since I last saw him I have had worsening symptoms and blood clots. But being who I am and having been in the medical profession for 20 years and having already gone through 6 surgeries, chemo and radiation in my lifetime, I will not be satisfied with any fewer than at least 5 opinions from different locations. I also have an upcoming 4th opinion, LOL, at the Cleveland Clinic and Wake Forest for the 5th one. Sorry, but this kind of thing requires a lot of research, time and effort before I go under the knife for something as serious as this.
So in answer to your post, I too am afraid, and I will make my decision as to when and where, not my doctors. Does that sound pretentious or stupid because "they know best, they are doctors"? I ask a lot of questions and I question the answers. So my advice is get lots of info from different sources and find out as much as you can, as the more you know the better you will feel about your upcoming surgery. I am afraid I just am not at that point with this one yet, I speak from experience from my past surgeries.
Good luck. Email me anytime.

 

[baldstuart]

What do I expect?

What do I expect?

I too am afraid!!!!!!!!!My husband is scheduled to have the Ross procedure on July 20th at the University of Utah. We found out 18 months ago that he was born with a bicuspid aortic valve,(news to us) and we were told then that it would need to be replaced in 10 or 20 yrs. (He just turned 40). After having some severe symptoms, shortness of breath, dizziness, heart racing and so on, he went back in to his Cardiologist. He had an angiogram in May and we were told he had three months to get this fixed. After several doctors, severe denial and some insurance issues We chose to go to the U of U. I am having a hard time finding very many people that have had the Ross Procedure, so have not had much input.He basically chose to have the Ross because he leads a very active lifestyle and doesn't want to do the coumadin or to have to have this done again in 10 yrs. Needless to say I am very nervous about this and would appreciate any thoughts and or advice. I have been reading the posts on this website for about a month and have been very impressed with the amount of REAL info posted here.
Thanks, Patti M

 

[ALCapshaw2]

Patti - There is a separate website specifically dedicated to Ross Procedure patients (do a SEARCH for Ross Procedure). Several of our members have had the Ross. Most (?) have traveled some distance to find the 'best of the best' surgeons.

Also, be SURE your surgeon has considerable experience with the Ross Procedure (preferably someone with over 100 surgeries to his credit and a GOOD success rate).

YES, it is MAJOR Surgery, but success rates for first time surgeries in patients under age 60 are VERY HIGH (>98%). If you are afraid of the surgery, think about what would happen by NOT having surgery. That should get you (or your husband actually) RUNNING toward the O.R.

Remember, each member here represents a heart surgery SURVIVOR. If we can do it, so can you!

'AL Capshaw'

 

[baldstuart]

Patti - There is a separate website specifically dedicated to Ross Procedure patients (do a SEARCH for Ross Procedure). Several of our members have had the Ross. Most (?) have traveled some distance to find the 'best of the best' surgeons.

Also, be SURE your surgeon has considerable experience with the Ross Procedure (preferably someone with over 100 surgeries to his credit and a GOOD success rate).

YES, it is MAJOR Surgery, but success rates for first time surgeries in patients under age 60 are VERY HIGH (>98%). If you are afraid of the surgery, think about what would happen by NOT having surgery. That should get you (or your husband actually) RUNNING toward the O.R.

Remember, each member here represents a heart surgery SURVIVOR. If we can do it, so can you!

'AL Capshaw'

Thank you so much for your support I have looked at the Ross website and I have done alot of research on the Doctors that are going to preform this operation on my husband. This is a two doctor surgery here at the University of Utah both doctors have preformed several hundred of these on adults and children, My husband seems to think that there is less room for error with two Doctors but I still am not 100% sold on the procedure as he is. I am not much of a risk taker like he is. You are right it is better than the alternative. I wish I could get him to post his concerns here but he is content to just read for now.
Patti M

 

[Karlynn]

Welcome Patti,
I'm glad you've found us and taken some time to get to know the site and people here. Rest assured that you would not be normal if you weren't going into this with fear or trepidation. I was the patient, and I often thought that it was probably harder on my husband to have to do the waiting and wondering and be the person looking for signs that your spouse was going to be okay.

How old is your husband?

You may have read that there is a small % of valve replacement people that develop chrinic atrial fibrilation after surgery. Emphasis on small %. If this occurs then the person has to take Coumadin regardless of what type of valve they have installed. Just something to be aware of. Chances are it will not happen. But if it does there are many of us that lead active lives while on Coumadin.

Let us know when your husband's date is and we'll put him on the calendar. We keep close watch on our surgery members because we like to celebrate their success.

 

[ALCapshaw2]

Patti,

PapaHappyStar is one of our members who recently underwent the Ross Procedure (Dec 2004). You can find his personal profile in the Members List. There is a link to both threads and posts started by PapaHappyStar (name Burair sp?) He did a LOT of research before deciding on that procedure and surgeon and I'm sure he would be glad to discuss his experience with you. He is a research physicist.

There are several other members who have had the Ross Procedure but I don't remember which ones.

'AL Capshaw'

 

[tobagotwo]

You can also find Ross information in the References Forum, here in VR.com. There is a video and other information in that forum. Be sure to change the display characteristic to six months, instead of hte 30 days that it automatically displays. You can change that at the bottom of the screen (page down a little).

We ought to consider having the References Forum default to displaying a year's worth of posts, as reference material gets looked at, but not much churn. It gets looked at less, if the topics don't immediately show in the display.

Also do an advanced search in VR.com itself for more information about Ross Procedures. Click "Search" on the blue bar near the top of the screen, then click on "Advanced Search" on the submenu that pops up.

Dr. Stelzer in NYC is one of the best-known Ross surgeons. Several of our members have had dealings with him.

Best wishes,

 

[baldstuart]

Welcome Patti,
I'm glad you've found us and taken some time to get to know the site and people here. Rest assured that you would not be normal if you weren't going into this with fear or trepidation. I was the patient, and I often thought that it was probably harder on my husband to have to do the waiting and wondering and be the person looking for signs that your spouse was going to be okay.

How old is your husband?

You may have read that there is a small % of valve replacement people that develop chrinic atrial fibrilation after surgery. Emphasis on small %. If this occurs then the person has to take Coumadin regardless of what type of valve they have installed. Just something to be aware of. Chances are it will not happen. But if it does there are many of us that lead active lives while on Coumadin.

Let us know when your husband's date is and we'll put him on the calendar. We keep close watch on our surgery members because we like to celebrate their success.

Our surgery is scheduled for the 20th of July and I am excited to finally have it done!!! I have been feeling terrble for the last few weeks, just tired, light headed and no energy. I know my wife is nervous about my having this done, but I am at ease with it. The only thing I told the doctors is that I want no memory of tube down my throat or the catheter in my penis LOL!!! My wife can't get over that, the fact that I am having open heart surgery and those are my concerns. Thanks for the info and the support. Please keep in touch.