new to all this

[donnamarie]

I am relatively new to all this heart stuff. I was told a year ago that someday I'd need to replace my aortic valve. Of course, I was thinking in 10 years or something. I went back to the cardiologist for my year checkup and he thinks I need to get it sooner (within months) rather than later. I'm 50 years old and feel like I have already had my major disease of a lifetime - breast cancer when I was 35 (with 4 boys at home ages 1-10). I don't know yet if I have a bicuspid valve or that it was caused by something else - chemo maybe? I am praying like mad that I'll be a candidate for the minimally invasive type surgery - I already have a scar from the middle of my chest to my underarm - I don't think I'll be posting pictures! LOL My doc suggested a 2nd opinion, and I've got that scheduled for 8/31. I am thinking of going to Lankenau Hospital outside Philadelphia. I haven't noticed anyone on here from there, but maybe I missed someone.
Is there anyone out there that also had cancer - and did you ever hear that you could get heart problems from the chemo?
My biggest symptom right now is shortness of breath - especially walking up a few flight of stairs or up hills. Just lately I feel like I'm having tightness in my chest - or could it be indigestion? I workout at Curves and have never had a problem - I'm just not moving super fast. In the last 2 months or so I've developed an irregular heart beat too.
I really appreciate this site being here - I never knew anyone who had this and it's great to be able to read everyone's stories.
Thanks,
Donna

 

[Cooker]

Hi Donna....welcome to the zoo!! I am sure this place and these people will be as valuable to you as they are to me. I am also sure you will get some input on the cancer questions.

It is not as bad as you may think.....

Cooker

 

[Mary]

Hi Donna.

It's great to "meet" you, but I know you wish it could be under different circumstances. As for me, I've lived with my BAV long enough--now--that I tend to take it for granted!

I believe we have a new member, nickm3, that is from Philadelphia and is looking at his second replacement in the near future.

We also have several members who had radiation treatments for cancer and have since developed heart valve disease. Hopefully they will stop by and tell you of their experience.

I'm glad you found us, and please ask any, and all, questions that you have. Someone will chime in with an answer!

 

[Karlynn]

Welcome!

So sorry you are dealing with this, after having survived another life-altering issue.

Shortness of breath (SOB) and tightness are definitely symptoms. I'm sure they'll test you to find out exactly to what degree your valve is compromised.

Did you have radiation with your BC? Some of our members had valve issues due to radiation therapy.

 

[Granbonny]

Welcome Donna.....Carolyn Russo from Philadelphia. just had her surgery about 5 weeks ago..I forget the hospital..but it is like 50 miles down I-95..If you look at members above.(our forum)..go to the C's and click on her name..there you will find a place to e-mail her..she is a great person... I am sure she can give you more info on hospitals, ect....Bonnie

 

[Lynlw]

Hi I'm sorry you are going thru this.It does stink you have to go thru another thing. Lankenau has a VERY good surgeon Lou Samuels.
Lyn

 

[Superbob]

Hi Donna, and welcome to the forum. There are others here who have dealt succedssfully with cancer and valve replacement. I am sure you will get lots of good information from them. I am not familiar with the hospitals in your area so can't help you there but bet others can. Again, welcome and best wishes to you in your preparations to deal with this.

 

[Phyllis]

Welcome, Donna and best wishes for your appt. for the second opinion. There is lots of support here, so read as much as you can- especially about valve selection and pre-op and come back with any and all questions the occur to you.

 

[Bina]

Donna, welcome.
You have already proven that you are a survivor, congratulations on that.
Remember to rest when you are short of breath, don't push yourself
Things will fall into place.

 

[ALCapshaw2]

Welcome Donna,

I'm glad you found us. Believe me, "We Get It" when it comes to Heart Valve Disease issues.

And your symptoms (shortness of breath, chest pain) are classic signs of Valve Disease. Be thankful that it was caught EARLY.

Valve Disease is primarily a "plumbing problem" and there are LOTS of good Plumbers (Heart Valve Surgeons) around. I would suggest that you get your second (and third?) opinions from SURGEONS as they tend to have a better 'feel' for the Best Time to proceed. Surgeons also like to get you 'fixed' BEFORE Permanent Damage is done to the Heart Muscles and Walls.

It would be helpful to know if you have a Bi-Cuspid Aortic Valve. My understanding is that BAV is a genetic thing and probably not caused by Cancer Treatment. Radiation Damage can definitely cause Valve Stenosis and Calcification. Did you have Radiation Treatments for your BC?

'AL Capshaw' (one of several Radiation Treatment Survivors that led to Valve Disease)

 

[donnamarie]

Thanks everyone for making me feel welcome. I did not have radiation - "just" a mastectomy and 6 months of chemo. I did have about 12 nodes involved and I'm a little concerned about having surgery on my left side due to lymphodema - I hope that doesn't become an issue.
Thanks, Bina for pointing out that I'm already a survivor - I needed that reminder!
Al, it tickled me that you compared this to a plumbing problem! I have 3 generations of plumbers in my family and my husband is a plumbing estimator! Just thought that was funny.
Lyn, I am leaning towards a Dr. Goldman at Lankenau, but I know a nurse there that said if I can't get him that Dr. Samuels is also very good. Nice to hear the same names from different sources.
The docs haven't told me yet, but they said it could be a bicuspid valve - something from birth - I find that so odd that it wasn't detected before this especially since I went thru tons of tests with the cancer.
I've had an ultrasound of the heart and an EKG - what other tests should I expect?
Thanks so much for being here! This is just a wealth of information.
Donna

 

[Lynlw]

Thanks everyone for making me feel welcome. I did not have radiation - "just" a mastectomy and 6 months of chemo. I did have about 12 nodes involved and I'm a little concerned about having surgery on my left side due to lymphodema - I hope that doesn't become an issue.
Thanks, Bina for pointing out that I'm already a survivor - I needed that reminder!
Al, it tickled me that you compared this to a plumbing problem! I have 3 generations of plumbers in my family and my husband is a plumbing estimator! Just thought that was funny.
Lyn, I am leaning towards a Dr. Goldman at Lankenau, but I know a nurse there that said if I can't get him that Dr. Samuels is also very good. Nice to hear the same names from different sources.
The docs haven't told me yet, but they said it could be a bicuspid valve - something from birth - I find that so odd that it wasn't detected before this especially since I went thru tons of tests with the cancer.
I've had an ultrasound of the heart and an EKG - what other tests should I expect?
Thanks so much for being here! This is just a wealth of information.
Donna

Dr Goldman, is very good to, I don't know him, but have heard very good things about him. Bicuspid valves are easy to miss, unless you are really looking for them, sometimes, you won't even know for sure until surgery. Lyn

 

[VikiVix]

Welcome

Welcome

Hi
I had my aortic valve replaced in December after thinking my trouble breathing was asthma.
If your doctors say do it then do it.
I would not be alive today typing this if I hadn't had it done.
I'm thankful for this second chance at life
Viki

 

[Phyllis]

I've had an ultrasound of the heart and an EKG - what other tests should I expect?

You will also have a cath pre-surgery to make sure that your arteries are clean and you don't need a by-pass as well as they like to take care of both problems at once if necessary.

 

[ALCapshaw2]

Donna,

Your surgeon (actually ANY surgeon) will want you to have a Heart Catheterization before surgery to check your coronary arteries as Dick mentioned. Try not to let that idea freak you out. After my first one, I had one of those "is that all there is" kinds of reactions, BUT, I confess, I WAS freaked out going in.

The nurse brought in a video to preview and I watched it 3 times. The Cardiologist will numb your groin with something akin to novacaine and almost everyone reports feeling only some pressure as they insert the catheter. I found it fascinating to watch the catheter being moved around my coronary arteries. Maybe the Versed (Happy Juice) helped a little too..."You're going to do what? Gee, can I watch?"

The 'event' rate for cath's is VERY LOW when done by someone who does LOTS of them, typically 1 in 1000. I've lost count of how many cath's I've had now. Bottom Line: NO BIG DEAL.

Hey, how about getting a quote for a 'Valve Job' from one of your (plumber) relatives and then take that in with you when you go to see the surgeon(s)? See if they will come down a bit!

'AL Capshaw'

 

[dot4toto]

welcome Donna

welcome Donna

Hi,
I'm so sorry to hear you may need a valve. But if you do, thank goodness they know now and can plan it out.
It's smart to get a second. I had to hear if from 4 different docs. I just didn't want another surgery.
You must be a very strong woman to have already been through so much with the "big C". Sometimes we ask "how much more?"Hang in there, the docs are very good at this and they'll pull you over the mountain.

Sounds like you have a nice big family, love that! Kids are great. I think rest will be the hard thing for you. I bet you go a 100 miles an hour. I have one kid and that was plenty.

I just found this site not to long before my surgery and the people here are the best. They will also be support to you. They are to me.
wishing you the best and good health.
Tina

 

[WayneGM]

Welcome to the VR community, Donna. Sorry for the circumstances, but glad you found us. This is a great place of information, inspiration, and support. I was 50 when they first detected something might be wrong with my heart and I might need surgery in the future so they decided I should be monitored through regular check ups. I too thought that meant surgery was years away, particularly since I felt perfectly fine. As it turns out, I had OHS shortly after my 51st birthday. It was scarey, but now that I've been through it, it wasn't nearly as bad as I thought it would be. Best wishes.

 

[67walkon]

Donna, you'll be fine. I was kind of in a similar place; they told me the valve needed watching and I knew some day, hopefully about a hundred years from now, I would need surgery!

In May of this year, my hundred years turned into two months and they did my surgery on July 6.

It is not the big deal we all worry about. I worried more than most, I suspect. But the actual surgery isn't really painful; it is more inconvenient than anything else. They give you great drugs for a day or so and then it is just a matter of the passage of time. 7 weeks after surgery, I feel great.

Hang in there and ask these wonderful people anything and you'll get the answer.

John

 

[Carolyn Russo]

Philadelphia Area - Folk Here

Philadelphia Area - Folk Here

Hi DonnaMarie,
I just heard from Bonnie - she told me about your situation. I have not had cancel (Thank God) but, I sure did have my Aortic Valve Replaced 6 weeks ago yesterday (8/23/07). I had the same problem you had - shortness of breath - no other problems. I did have a heart murmur and they kept their ears on it for years. I began going to a cardio about 2 1/2 years ago and everything was alright. But, 3 Echo Cardios later I was told it was time to consider the valve replacement at once and I must go into the hospital for a heart cath to confirm the Echo findings. While I'm in there they wanted me to go directly into surgery for the AVR. Well, I of course put the brakes on them as well and my General Practioner - this was too much for me to digest. I didn't even know who the surgeon was going to be.
So, on 7/5 I met the surgeon plus after I had found out his name - I obtained all possible info on him and his team. I found out that He and his team were one of the 5 top surgerical teams in the nation who preformed this operation. I also found out he was highly recognized by his piers. I met other patients of his who had his team work on them for bypasses or valve replacements - no one had a bad word. Every tech I spoke to in the medical field just couldn't say one bad words about him. I was now confortable. I agreed to the heart cath for 7/11 and the surgery for 7/12. I was so well taken care of I barely remember being in the recovery room or having the breathing tube taken out of me or the drainage tubes being removed. I have had NO chest pain what so ever - except when I would cough or sneeze )Thank God that didn't happen very often). I felt and still feel tenderness as well as I feel my heart beating - sometimes I think I hear it.
I am not permitted to do too much yet - 5-10 lbs limit on my lift and gee, I can't do too much house work. My sister has pitched in there. No vaccuming and stuff like that. At 5-6 weeks I was just allowed to drive locally only and have an additional 4 weeks I'm not permitted to lift more than 5-10 lbs. plus no heavy house cleaning. I'll be out of work until approximatly 9/27/07. I don't have children at home - I do have a small dog who struggles with me not be able to take her for walks yet.
My Surgeons name is Dr. Karl Grunewald. He is with the Chester Crozer Medical Center here in Delaware County, PA - just south of Philly and not far from the Philadelphia International Airport. He is an outstanding surgeon and he has trained his whole team. They are great! He is also affliated with Hannaman Hospital in Philadelphia (spelling).
When I tell you my incision is about 8-9 inches long and is as thin as a pencil line - I kid you not! I thought I was going to look gross - but, not at all. People just can't believe how great I look and my incision. I have not had any trouble with my ribs other than some discomfort with their going back into position and a pinched nerve I've had in the past which was bothered again.
I would think that you know already, you'll need help with the little one - you won't be able to lift. Any help you can get - accept it - you'll need it. Let everyone else pull their share for the 6-8 weeks you'll be on the down side. And what ever you do, don't push doing more than you should. I have see some ugly incisions because of those who didn't listen and do what they were told.
If you would like to chat with me one on one - my email address is [email protected]
If you would like my phone number to call and chat - please send me a direct email and I'll share that with you.
But, when they tell you - you have months to get the AVR - don't waste any time. You'll feel like a whole new person after the operation - I know I do.
I bought myself 20-25 years plus with my St.Jude Mechanical Valve which I chose because of my age (62) and this being the least possible direction to take for the need of another AVR in the future when I'm some 80 plus years of age. But, the valve you choose is your choice only. With the mechanical valve I have to take warfarin for the rest of my life - but, they may have a better drug in the near future - they are working on it.
Please, DonnaMarie, I am here if you need to talk
I'll keep you in my prayers.
Hope to hear from you soon.

Carolyn

 

[donnamarie]

You guys are all so nice! I can' t thank you enough for telling me your stories. You have all made me feel a little better about this whole thing. I just wish it were already over! LOL I know from experience that time will fly once I get going. When I think about it I can't believe I'm 15 years away from my breast cancer.
I way able to get my 2nd opinion appt moved up to next Friday, 8/31. That is a relief! I really would've been a mess waiting till 9/10.
Thanks Again
~Donna