Just found out I'm getting a valve for Christmas

[hpuehler]

Hi, My name is Heather. Just found out I have a mod to Severe aortic insufficency on Friday and the Cardiologist says I will be getting a new valve before Christmas. My Cardiac Cath is this Friday 12/9/05. I am supposed to meet the Surgeon after my Cath. Wow, I have no time to process all this I feel like I'm in a whirlwind!!
So glad to find this website. Any advice? Questions I should ask the Surgeon, ect.?

 

[geebee]

Welcome Heather.

I don't have a lot of information on aortic valves since I am a mitral valve patient but I wanted to say hi.

One of the things you will need to decide is what type of valve you want. Hopefully you can discuss with your surgeon and feel confident with your decision.

Sometimes short notice is better because you don't have much time to fret over it. You will be past surgery and into recovery before you know it.

Take care.

 

[Marguerite53]

Welcome to this wonderful place. Personally, I have not yet had my surgery, but am slowly creeping toward the need for AVR (aortic valve replacement). There are several others with me here in the Waiting Room. Unlike you, we have too much time to process all the information and emotion!!

There will be many others along to comment on their experience. You are not alone in your short wait and sudden discovery!

Keep checking back. Keep posting new threads with new questions as they arise. You will find a wealth of info here. The search feature is very useful also. As Gina mentioned, your choice of type of valve is very important. It will be confusing and frustrating and hopefully your surgeon can make you feel completely confident and comfortable with your mutual choice.

You have found a wonderful support network here. USE US!!

Best wishes!

Marguerite

 

[OldManEmu]

Heather welcome aboard. I am sure that a new Aortic valve was something you would rather have not been on this years Christmas surprise list. I had an AVR 11/2004 so was largely recovered and back at work the week before Christmas. Being a RN you can probably come up with more questions than most of us. It can be easy to forget to ask things from memory when you may be anxious. I would strongly recommend you write your questions down as they come to hand over the next few days and take the list of questions to your surgeon's meeting, then write down their answers and don?t let them move on until you understand the answer.

 

[athul]

Hi Heather,

Welcome to the group.
I'm 44 yrs old w/ 2 young kids. I got my good news about 2 months ago and let me tell you the waiting can be tough. You're lucky, in a way that you should have a new valve within 1 month. I'm going mechanical valve so as to hopefully never have to go through this again.
I don't have any experience about post-op, but I've been thru the pre-op phase. It's 3:30 am here and I'm actually waiting to go to the hospital in an hour to have my surgery.
Its going to be a tough week but the result will be a new lease on life.
Stay busy.
Finish shopping.
Try to sleep (doctor gave me Ambien..helps alot)
I think you'll find that your friends and family will really step up to the plate to help out. I didn't know I had so many friends. Its actually been quite a touching experience so far. (may not feel that way by tonight, but at least the waiting will be over)
This website has been a godsend for all the questions I've had while waiting.
Others will be along to chime in.
The cardiac cath. was a piece of cake and I did find out that all my arteries are clean. This was reassuring.
Good luck, you'll get thru this just fine.

andy

 

[Kate]

Hi Heather!
Welcome! I'm also living in Ohio, am 38 and just had my aortic valve replaced in September. Sorry you have to go through this but, to be honest, in many ways it wasn't nearly as bad as I thought it would be - you are young and will likely bounce back very quickly.

Choice of valve is a big deal - although you don't have much time, I think it's important to learn as much as you can about the options because it will have an impact on your life, whichever you choose. There really isn't an ideal valve for people our age, so take some time to read through threads in the valve choice forum.

Where are you going for your surgery? Ohio is blessed with some world-class heart hospitals, including Riverside in Columbus, The Cleveland Clinic, and probably some others I don't even know about.

As far as questions to ask the surgeon, I think the most important one is "How often do you do this surgery in a year?" as this surgery has very low mortality rates when performed by a pro. Another one might be to ask if you aorta shows signs of dilation as this can sometimes go along with bicuspid aortic valves and, if necessary, you want to get both fixed at once.

Keep asking questions - there are many people on this site with tons of experience to share. Take care, Kate

 

[perkicar]

Welcome-We're here to help!

Welcome-We're here to help!

Hi Heather--
Kate and I both had our surgeries at Cleveland Clinic, although with different docs. Geebee had hers in Cincy, and as Kate said, Riverside also has an excellent reputation for cardiac care.
What's wrong with your valve? Are you bicuspid or do you have aortic stenosis?
I'm a nurse too, which made me more scared because I'd seen the surgery (although not a valve replacement, just CABG) and the whole idea of being on bypass and the ventilator freaked me out. My local cardiologist (I live in Louisville, KY but went to Cleveland for my surgery) gave me an RX for xanax which helped "take the edge off" before my big day. I worked until 5 days before surgery, but I had alot more notice since I was told I needed the surgery in February but waited until May to do it. It was not anywhere NEAR as bad as I'd anticipated, although the recovery was slower than I would have liked. I was off full time for 6 weeks, part time for 4 weeks then back full time at the beginning of August. I work in an oncology ICU.
Your friends and family will be anxious to help, and you'll need them, especially since you'll not be allowed to drive for at least 4 weeks, maybe longer (I think it was 6 for me). I used the electric cart at Kroger's. Since it's going to be cold, enlist someone to take you to the mall so you can get in your walking. Somewhere (help us out here, Ross) there is a post of things to take to the hospital and to have after surgery. Since so many of us have been where you are and where you're going, many have added their perspective!
Just keep us posted on when Santa is coming and we'll be here to help as much as we can!

 

[BDMc]

Beter Now Than Later

Beter Now Than Later

Dear Heather, I know what a shock it is to get the news, and how hard it is to deal with. I had a lot more time, almost three months, but far fewer resources (no internet). I got a book on open heart surgery from the library that was very helpful in telling me what to expect. The biggest thing on that list for me, is that when you wake up in recovery/ICU, you'll have tubes coming out of you all over, and one down your throat to breath for you. Knowing it would be there it wasn't disconcerting to me. They take it out pretty quickly once you are awake, and can breathe on your own. As the others have said you are in one of the very best states as far as hospitals and surgeons. I think choosing a surgeon would be formost in my mind. If you have real confidence in him/her, that is justified by their record/reputation (this can be very hard to verify, so trust your gut) you don't need to worry about the rest so much. Very often the plans change once they are in there and can see things. It's been 21 years now for me, and I am sure grateful for the "new lease"! If you want to talk send me a personal message and I'll give you my number. I'm sure this has thrown your holliday plans to the wind, but I think it's a great thing to get for Christmas! Wishing you the best, Brian

 

[susieq14]

Dear Heather,

Just wanted to give you a big hug and wish you well as you prepare for your surgery. I have no personal experience with OHS so can't share any questions to ask the surgeon but I would echo what has been said before to you and write down all your questions and be sure that you undertsand what the dotor says completely. It is also a very big help to have another pair of ears listening so be sure to bring a family member or close friend to your appointments.

Take Care!
Sue

 

[liza]

Hi Heather!
Welcome to VR.com! I had a mitral valve repair in Columbus, OH last May. Where are you getting yours done at? I'm afraid I don't have much advice, as it all kind of happened too fast for me also. Fortunately, I felt a real connection with my surgeon, and I trusted him. He didn't disappoint me!

The best thing you can do is read read read the forums when you get a chance! It's ALOT to process, but it really helped me feel better to know what other's went through. I'm one who likes too much information. Feel free to ask anyone questions. I would say try not to freak out too much, but that is so much easier said than done. What a bummer of a Christmas present to be told this, but you'll probably feel better once it's all said and done. I didn't realize how run-down and yucky mitral regurtation was making me feel til my valve got fixed. Life is great!

Good luck and take care. Remember you have a new family here to support you. Whine, vent and ask away!

Liza

 

[hpuehler]

Thank You everyone!!

Thank You everyone!!

Thank You everyone for your kind words of encouragement and caring. I am scheduled for my cadiac cath at St. Luke's Hospital in Maumee, OH. I will have the surgery at St. v's or St. Luke's. I'm not sure the group of Cardiac surgeons goes to both. I have not been given a name of the surgeon yet. It seems like eveyone in Ohio has gone to a large metro hospital. Why did you travel so far (some of you)? How routinely were your docs doing valve replacements?
Well, I saw the attorney today and got my Durable Power of Attorney for Healthcare. Never thought I'd do that so young. It's good to have done for any reason really.
Did any of you with AVR feel alot better after surgery? I guess I didn't realize all the symptoms I was having until I found out. Just thought I needed more coffee in the morning. Or that my dizziness was too much caffeine. Leave it to the nurse to ignore her symptoms!!
Well I better go to bed and stare at the ceiling, hopefully I'll sleep better tonight.

THANK YOU FOR BRIGHTENING MY DAY!!!!

Heather

 

[T-Money]

Hi Heather.
I know what you are going/about to go through. Hang in there. Your big decision is whether to get a mechanical/biological. The surgeon will inform you on that. Also, search the forums to find all of the debates on the two. We'll be praying for you. Be sure to keep us informed of when the surgery is.

 

[perkicar]

Yes, as some others have said, I didn't realize what symptoms I was having until I stopped having them after surgery. I just thought I needed to get more exercise and lose weight. HA! I still need to lose weight and get more exercise, but I feel MUCH better.
Keep us posted!
ps, I went to Cleveland from KY because of my tricky medical history (radiation for Hodgkin's, Chemo for Breast cancer) that surgically made me more challenging. I hadn't planned on it originally but am glad I ended up there, after originally only going there for a second opinion.

 

[hensylee]

we started a thread some time ago for a checklist on what to take to the hospital. You might find it useful.

You will be in all our prayers as you approach the mountain. Keep us posted.

Here's the thread:

http://www.valvereplacement.com/forums/showthread.php?t=13283

 

[Kate]

Hi Heather,
I went to Cleveland because the hospital in my town doesn't do heart surgery and, if I was going to have to travel anyway, it seemed to make sense to go to the best place available. Cleveland Clinic's been rated the number 1 heart hospital in the country and does over 1,500 valve replacements a year, over half of which are aortic. This turned out to be a good call for me as I needed to have my ascending aorta replaced as well, a trickier operation that really did require their expert services. I don't remember the stats for my surgeon now, but as a rough guide, I'd say you want someone who does this type of surgery on a weekly basis, ideally several times. You don't want anyone having to check the manual half way through! Best of luck! Kate

 

[kingpeta]

Hi Heather and welcome. I didn't have to travel far as I was lucky enough to be close to one of the midwest's leading heart hospitals. My surgeon does about 300 surgeries a year so I felt comfortable he knew what he was doing! Although I sometimes felt like I was on an assembly line, I guess that's what you want. The process should be almost automatic for the docs & hospital. I hope you find a place that you feel comfortable with. As far as feeling better, I had little to no symptoms before surgery but I do feel more energetic now and don't suffer from fatigue that I thought was just the meds I was on. You'll do great and after 6 weeks or so you'll wonder what all the worry was about.

 

[momshell7]

HI Heather,

I am another Ohioan! I live in Bowling Green, so we are almost neighbors!!Welcome aboard. My husband had his aortic valve replace a year ago October. He had his surgery at the Toledo Hospital. His surgeon was Dr. Michael Morrant. I highly, highly recommend him. He is regarded as one of the best sureons for aortic valve replacement. He travels to Europe at least once a month to instruct other doctors etc. He is also a very very nice person. I was a complete wreck before my husband had his surgery and he was so kind. He took extra time to talk to us and make sure that I was comfortable with everything that was going to happen. After the surgery when Jeff went in for his follow up he took time to ask how everything was going etc. He said that if we ever had any questions that his door was always open and the phone was always working. He is not only a very talented surgeon but he has excellent bedside manner.

If you have any other questions feel free to email me or Jeff. His user name on here is twoboysdad.

Best wishes with your surgery.

Michelle

 

[WesternNYer]

hi Heather...

hi Heather...

16 days post op here....recovering almost unnaturally well. LOL. As everyone has said....you'll need to consider the valve choice. My choice suited my activity level and philosophy that each day is a gift...so choose according to your own needs and not the stats .I had an Aortic replacement...having had symptoms for 2 years....only knowing a new valve would be needed within the last few months.I was scheduled right after my Cardiac Cath....and a 3D echo showed a true Bicuspid that had basically been leaking quite impressively.Anyway....I can only tell you my own experience....and all has gone so well that I wondered why I worried about anything.(As an RN...I'm sure you are well aware of many a man's fear of the dreaded Foley...LOL)My surgery was done at the Hamot Medical Center in EriePA.....and the nurses were a Godsend....especially a woman called Anca...she made my recovery a learning experience as she explained every step...and the reasons behind every phase of my recovery. So good luck with your surgery,Heathher....And once you return home to recover....everyone here will help you with all your questions...If you feel like chatting in real time....Private me and I'll forward my home phone. Take care....Tim

 

[joanne6]

Welcome Heather,
I am also a nurse but had mitral valve repair in August. Found out july 21 that I needed surgery and, of course, freaked out. I had worked with CABG patients but not valve. Checked on the various hospitals here in Baltimore that do open heart, and there are about 5 of them, made a decision and then took Ambien every night to sleep. I worked until 2 days before the surgery.
I actually was off for 3 months because I had decided to change jobs after many years. I had to start when there was an orientation class.
I am back at work now and doing well post-op. I am wishing you good luck and as much peace as possible before your surgery.
One good thing is that you will be starting the New Year with a new valve. Should be able to keep warm and cozy while you recover and then face the spring with lots of energy.
Keep posting.
Joanne

 

[liza]

I stayed in Columbus to have my heart surgery because I am a student at OSU and it was easiest for my student health insurance to have it here. Or at least I thought it was. I didn't have enough time to really figure it out. I also had my power of attorney/living will done right before my surgery. I am only 25, so it seemed REALLY young to have to be thinking about it. Have you decided on a valve? You mentioned being young, so I'm just curious what you are leaning towards. I had picked a bovine valve if they couldn't fix it, but I got lucky and still have my original valve. Do you have a bicuspid valve? It seems to be pretty common here with people who have needed their aortic valves replaced.

I hope things are going as well as can be expected. Keep us updated on everything! Take care!

Liza