On March 25, 2012...
Joan,
Some people really love their recliners post-op, but I've done fine without after both my valve surgeries. The point is to find comfortable positions to sleep and to nap. I've done that by arranging pillows on my bed.
Stairs aren't an issue, assuming you have no orthopedic issue that made them challenging before the surgery.
Best wishes
- Jim Smith
On March 25, 2012...
Recliners give you that angle that is comfortable. I have one but I slept in the bed. I bought a wedge pillow and propped it up against a few pillows and used that to sleep in the bed.

I used the stairs right away when I got home. I learned quickly I wasn't ready to go up and down several times a day. I worked where I only had to climb them 2-3 times a day until I was able to do more. About 2 weeks after coming home.

I am 5 weeks post op and I go up and down them all the time no issues.

Good luck!!

Jimmy Johnson
On March 9, 2012...
Dear Joan,

I had my aortic valve replaced three days after my 69th birthday at CC. I flew there from Denver because they offered minimally invasive surgery (although that is never guaranteed). My entire experience was terrific and 1 3/4 years later, I feel great with incredible energy.

If you can find my journal, check it out and let me know if you have any questions. I, like you, was no physically incredible specimen but came through like a champ.

Anne Shannon
Joan Davenport  Dear Anne,
Thanks you for writing to me. Your story is great and it's what I want too....the minimal ... Read more
On March 7, 2012...
Hi Joan.

The main difference between hospitals and surgeons with the best success rates and the others is volume and experience. When you have a conversation with a surgeon, ask how many aortic valve surgeries they do a year and what their track record is. Dozens or more is a good answer. 5 or fewer is not. You want them to have seen it all and dealt with every possible problem before and gotten good at it. The best outcomes are at high volume centers of excellence, with overall risk about 3 times lower. Take care -- DVB

On March 7, 2012...
Hi Joan,

I'd echo Nancy's point below. It's a point I make several times in the book. Every patient case is unique.

I wish you all the best.

Keep on tickin!
Adam
Joan Davenport  Hi Adam,
You are missing my point. My question is why can't we have the NAMES of the doctors who hav ... Read more
On March 7, 2012...
Joan. Hi. Happy to talk with you. I am post 4 weeks. & honest. No problems. Everyone is so different. It's not fair to take one persons experience and make it yours. What happened to Adam was rare. I had absolutely nothing bad

It's an amazing journey and after 4 weeks. I can hardly remember I was in the hospital.

My cell is. 314-276-1012. If you'd like to talk.

Pickin a hospital / valve and dr are the 3 biggies. Then it's off we go

Good luck ! Nancy friedman. St Louis mo. 2-9-12. Avr done
On March 5, 2012...
Hi Joan,

I am sorry for the delay in responding to your last posting. I am happy to chat with you at anytime about my experiences or any other related topic. Just let me know and we can set something up.

Best regards, Robert Tucker
On February 27, 2012...
Okay Joan...not my business..but here's my opinion ( I know you didn't ask for it). You should respond to Mitch Friedman's offer. He lives in NYC and just had surgery on February 2nd. Let him line you up with a surgeon in NYC. They have some excellent ones there, even the surgeon who operated on Bill Clinton and Barbra Walters. Let your best friend be blessed by going with you. I'm not convinced your daughter would be "too busy" to go with you, that may be what you think. I am struggling a little with taking my daughter away from her business (she also owns her own business) her 2nd job and her husband and 3 children. But she insisted I go to Cleveland, that is where I really wanted to go and she insists on going with me for as long as it takes. You might want to give your daughter a chance. But...there is absolutely nothing wrong with going into New York city. And you would have your friend to be with you. You will not be allowed to drive for 4 to 6 weeks, although you may ride as a passenger. You would not be allowed to fly an airplane (this didn't apply to me, lol, but may apply to you) but you may fly as a passenger. A lot to think about, but if I lived in New Jersey, I think I would choose NYC for surgery, much more convenient.
Thanks for your encouragement to me, keep me in your prayers, I'm good today, we'll see about tomorrow!!!

REALLY getting closer...Linda Dixon
On February 27, 2012...
Hi Joan, I hope Adams book is helping you out. I am also going to be getting it shortly. I am 65 and was not real active either. My doctor told me to get out and walk 2 miles a day. It would help in my recovery. So that is what I am doing. I started out slow and short timed. Now I do it most of the time when the weather is good. I walk a mile in the morning and one in the afternoon. So far it has helped me a lot and I feel more motivated. It can't hurt. Just stay positive, have faith and it will work for you. Good luck in whatever you decide on.
For the long haul
Linda H
On February 27, 2012...
Hi Joan..Linda D. here. I will be flying to Cleveland from SC. Just too far and gas too high to drive, especially after surgery. The flight from Charlotte is only about 1 1/2 hours and then another hour drive home from Charlotte. My daughter will be going with me.

How did I choose Dr. Gillinov?? Good question. A couple of things. He has an excellent reputation as does Dr. Roselli by the way. I saw some of his web chats on the Heart Valve Surgery site, saw some of the CCF surgical videos and also read remarks and spoke with some former patients. And I just liked him. It's hard to explain. I think really that any of the surgeons at Cleveland Clinic would be good choices. They take a "team" approach there and I think if something were to happen that for some reason Dr. Gillinov would not be able to perform my surgery I would be okay with any of the other EXPERIENCED surgeons.
It is definitely a decision that only you can make, you have to feel confident in the person doing your surgery.
Use the Heart Valve Patient surgeon locator tool and look back at some of Adam's blog entries to see several interviews he has done with surgeons. Also, Adam will get you "hooked up" with someone if you like.
Try to remember that the reason Adam wrote this book was because he was so unprepared for what to expect from surgery and recovery. Thanks to his book, we know the questions to ask, we know what to expect before we go in for surgery. So knowledge leads to comfort and peace of mind (to some extent, lol) and that helps with tolerating any of the side effects. We know it is going to be with some pain and discomfort. No way around that. But at least we can be fixed...that is a blessing.

Let me know if I can help you in any way.

REALLY getting closer...Linda Dixon
Joan Davenport  Hi Linda,
Thanks for writing. I went and read your journal and story and wow, do we ever have alot i ... Read more
On February 26, 2012...
hi joan,
i understand u are scared and i really dont blame u-all of us who have not had surgery are scared-especially those of us that it is a re operation-(that we have had heart surgery before) as that carries even more risks to it-but you just have to think of one thing. quality of life.going to a rehab after since you dont have a support system will be a good thing-they will watch over u,and motivate you as well. they will have pt and ot services which will help you. complications -speaking from experience being an RN working on a medical surgical floor-can come with any surgery-even what we view as simple ones,and most are not life threatning but just setbacks.please go into this with open mind.take care
linda
On February 26, 2012...
Hi Joan,

Nice to meet you and thanks for sharing at Heart Valve Journals!

I can understand your concern regarding the complications I experienced after surgery.

However, please remember that every patient recovery is unique. We all heal in different ways and different rates.

I'm hopeful your recovery is smooth and uneventful. I'm also hopeful that the book provided you certain tips to avoid some of the pitfalls I experienced.

If you need anything, please let me know.

Keep on tickin!
Adam Pick
On February 26, 2012...
Joan, regarding Cleveland Clinic. I am going there for my surgery on March 13th. I have not been before. You only have to go 2 days prior to surgery. You will send all of your test reports along with the accompanying CD's to the surgeon at Cleveland Clinic for him to review. They will then contact you with his recommendations and a date for surgery. You do not have to go back and forth. Once you are discharged from the hospital (average stay for aortic valve replacement is 5 days) you will be discharged to the care of your doctor at home. Look at the Cleveland Clinic website. They have all the info there for referring yourself. You do not even have to be "referred" by another doctor. You just have to send all of your stuff to them. They also have a medical consierge that will take care of traveling arrangements for people coming from out of state.

Joan, I know you are anxious over this, we all are to some extent, but just be thankful it is something that can be fixed. It would take an idiot to think that it is a walk in the park, but it is something that a lot of people have done and the great majority do very well with very few complications.

It sure beats the alternative...one of the possible consequences of untreated severe aortic stenosis is sudden death. If I can do this...you can. I am 63, no athelete by any means...but I want to live...I WILL DO THIS!!

If you are considering Cleveland Clinic (although the NYC facilities you mentioned are also excellent) and if you have any questions, I will be glad to help you any way I can.

REALLY getting closer...Linda Dixon
Joan Davenport  hi Linda,
thanks so much for writing and telling me about Cleveland clinic. I'm just wondering how y ... Read more
On February 26, 2012...
Hi Joan,
Please understand that the best entry for your surgery will be determined by the surgeon you use. The better they can view the surgical site, the faster you will be finished. The shorter your surgery is sometimes determines how well you recover. I was told about two different ways my surgery could be performed. I chose the full stern. because it would be faster. When you meet your surgeon you will be relieved of many of these decisions. These surgeons have done thousands of your type surgery. When I was in the waiting room of Dr.Craig Smith (Columbia Hosp.) I was a spring chicken. Most of his patients that day were in their 80's and had already completed surgery. One woman told me she had only taken tylenol for discomfort. She was walking faster than I was and I was pre-op. Many patients leaving the hospital when I was were going to rehab. I have to tell you it didn't sound bad to me. To have a week more of the great care I got would not have been a punishment.
I truly believe our ages are not as big a factor as you would think.
Jane (12 weeks out and absolutely fine)
On February 26, 2012...
Hi Joan,

No I do not know anyone at Deborah hospital in NJ unfortunately.

My opinion is that you shouldn't just rule out NYC even though it might be a geographic hassle. My NJ doctors all are from Mt Sinai in NY originally. In fact my surgeon was a resident under the doctor who did my first valve replacement 20 years ago (he unfortunately is semi-retired now).

The surgery is major for sure and there can be complications. But my sense is that there is mostly some discomfort for a few weeks with most people. We have to remember how far the technology has come with this issue. To the extent many patients are getting tissue valves knowing full well that they may have a second or third surgery in the future is a testament to that (I am one of those).

Plus my first doctor said something to me 20 years ago that I still remember. In the medical profession there are still thousands of conditions where the best they can say is "sorry there is nothing more we can do". Here there is a solution thank goodness. Yes you may feel like a bus hit you for a few days or weeks but after that you will be great and like new.

Robert Tucker
Joan Davenport  Thanks Robert for your encouraging message. I gather you live in N.J. also. I live in the remote NW ... Read more
On February 25, 2012...
Might be best if we correspond directly. My email is mfspenceny@yahoo.com, my cell phone is 917-561-1574.

I am three weeks post op. I went into the hospital the day before my surgery to get the cardiac cath. My surgery was on a Thursday AM. I had some very minor complications (a fib, or erratic heart beat. And a drop in my blood pressure. Both of which I hardly noticed). So I stayed in ICU until Monday. I came home Weds.

I also saw Dr. Allen Stewart at Columbia Presbyterian. He is a super guy and a top surgeon. I chose Grardi because going to Cornell kept my cardiologist involved and that was very important to me.

My offer stands for any hospital in NYC and any number of Dr's visits!

Call or write to me and I can try to answer your questions.

- Mitch Friedman
On February 25, 2012...
Hi Joan, glad you did not mind hearing hearing from me :-)!

You are taking a very important first step, you are not doing this alone and you are doing your research. Good for you! No doubt this is all very scary. All of us, young and not so young, have been in your shoes. No way else to say, this is terrifying at first. But, we are all here to help. Continue to do your research. Most of all, find a surgeon, preferably two to meet with, then make your decisions. For me, once I met the surgeons, a great calm settled in. They are that good and that reassuring.

My surgeon was Dr. Len Girardi at NY Presbyterian Cornell Weill (68th/York Ave). His number is 212-746-5194. If you decide to go see him and have no one to go with you, let me know. I would be happy to meet you and go with you, if you want company. Dr. Girardi is one of the top guys there, and it is among top hospitals in NYC.

Wishing you all the very best,
-Mitch
Joan Davenport  Hi Mitch, Thanks for the information....I am very happy to receive it. How long ago was your surger ... Read more
On February 24, 2012...
Joan,
I chose Dr Scott Andrews in Chrlotte NC. He was recommended by a group of doctors. He has also operated on other doctors so that says something about him.

I would check out Clevelnd Clinic also. I jut had reservations bout being way from home if I needed additional care. However, I have found out that your cardiologist takes over once surgery is complete.

It is a big decision.

Good luck.

Jan Beale
On February 24, 2012...
Hi Joan,
I had my heart surgery 12 weeks ago. I did not have a lot of pain, I did not have infections and I did not have complications. I had surgery on a Monday and went home on Friday. I got stronger every day. I am 61 years old. I had my surgery at Columbia Hospital (also known as NY Presbyterian). I could not have had a better experience. Do your research and if you want more personal information email me at jjrp11@aol.com.
Jane
Joan Davenport  Dear Jane,
Thanks alot for sharing your story and the info you gave me. I would like to ask you more ... Read more
On February 24, 2012...
Joan,
I'm 64 and scheduled for surgery on Monday, March 5th.

I, too, was in denial about my condition. I was
asymptomatic and still am pretty much for the most part. It was a true shock when I was told that I needed surgery. However, tonight when I walked the stairs, I was worn out. I know in my heart that this surgery is going to allow me to get back to my old self.

Just do a lot of research on the doctors and hospitals.
It is your decision but may be the best decision of your life.

Tke care,
Jan Beale

Joan Davenport  Jan, thanks for writing and my best wishes to you for your surgery on March 5th. What hospital and d ... Read more
On February 22, 2012...
Hi Joan- have you looked into Cleveland Clinic? I have congenital heart disease and they are the best in US for us born with issues. I do know many of our fellow bloggers with adult onset also travel there. It's outside of the city.
Spend time on this site, you'll find many resources. Sometimes modern medicine is necessary but a healthy mind and spirit are also vital. You'll do great!
Stephanie Cole - valve replacement in 3 weeks
On February 22, 2012...
Hi Joan Welcome to HVJ. I haven't been here all that long, but I tell you I have meant all kinds of new friends all over the US. It is just like a new family cause we all have the same problem. What I have done here is read a lot of journals here. It has prompted to ask questions and you can ask any of us anything at any time.

In Sept I was diagnosed with aortic steosis regrugatation and thoriac anuersym. It is moderate. I have different symtoms but I have to live with them for a while longer. I not crazy about doctors or needles and I tell them lol. But today I saw my doctor and mine is still moderate a little worse but ok so I am on hold. So rigt now I am staying here and cheering everybody on.

What I have learned on this site are several very good things, and that is to have faith and really use it along with prayer, it works. There is a lot of info here that helps. Adam Pick has been through it, and Mitch Nancy and Jimmy Johnson have just gone thru it and they are in a race to see who will recover the fastest. Then Linda Dixon is great also. She is headed to Cleveland very soon and she is wonderful. I have checked out hospitals and doctors and now I just have them on my little list. And as everybody has told me "You can do it, yes you can". If there is anything I can help you with just let me know, I think I am here for the long haul. Take care my new friend. Oh and I am 65 years old.
Until Much Later Linda H
On February 22, 2012...
Hi Joan, welcome to the HVJ site. If you are looking for support, encouragement, honest opinions and experiences...you've come to the right place.

It is tough making these decisions, but one thing for sure, the choice is totally yours!
Some things may be worth reconsidering. I would just say, don't rule out options without a lot of research and don't make decisions based on one person's bad experience.

Again, welcome and let's keep in touch!

Linda Dixon
On February 22, 2012...
Hi Joan. Most folks tolerate the surgery well. Be sure you use evidence based criteria to guide your path. Anecdotes are not good indicators of the likelihoods of various outcomes, though they can of course be memorable. If you are like most of us, you are trying to minimize the chance of a worst-case result. You will find a lot of good advice and support at this site. Peace -- DVB
On February 22, 2012...
Hi Joan, so I think I am the last guy you want to hear from. I am young (47), good looking (in my own mind anyway) and just had surgery three weeks ago (tomorrow) in New York City. Yes, I have progressed in my recovery very rapidly, I walked 1.5 miles today. All that saidi, please don't hate me and read on......

Every life is precious. Not only did Barbara Walters have surgery in her 80's, but I believe Barbara Bush did too. If the surgeons say it can be done, they know best. These surgeons are incredible. I hear you don't like doctors and don't like NYC, but there is an option out there for you that will make you feel comfortable.

Please work hard at putting your fears aside and finding an option that works for you. Once you get through this, you will feel amazing. Better than you have in years and you will be wondering why you waited and asking yourself, what do I want to do next to make my new life even more fantastic?

Stay strong, do your homework, and dare I say, reconsider coming into New York to at least visit a surgeon here. I can help make introductions if you change your mind.

I wish you all the best, even though I am the probsbly the ladt guy you wanted to hear from.

Much love from my now fixed heart (aortic valve replacement and Dacron graft for my lower ascending aorta).

- Mitch Friedman
Joan Davenport  Thanks alot Mitch for your encouraging words and you're not the last person I'd want to hear from.
Wh ... Read more
On February 22, 2012...
Barbara Walters had her aortic valve replaced at age 80, (in NYC) and she is doing fine. There is a video on youtube.com with her story and watching it helped lessen my fear of surgery, which I probably will need sometime in the future . At age 70, I have 3 leaking valves: aortic, mitral and tricuspid; ranging from mild to moderate. Folks here are very helpful

On February 22, 2012...
Hmmmmm boys & girls looks as we have a toughie here ! Time to send in DR MITCH & DR JEFF S. have them sit on Joan and have her hear how important she is to her family !

Hi Joan. Sounds as tho you need a valve friend. Well you have come to the right place. You see you already have a dr reference in new jersey. How cool is that ?
Play nice with these folks and you'll get real good info

I'm 2 weeks out - post op. had bad valve Avr 2-9-12 in st louis Doing well now. So it can be done ! Enjoy the posts ! Best to you. Nancy Friedman.
On February 22, 2012...
Hi Joan,

I live in NJ as well and am happy to give you the names of my doctors. My story: I am 53 and will be having my second valve replacement in 6 weeks. My first valve lasted 20 years. For the last 18 of those years my cardiologist took care of me and has nursed it to a long life! His name is Thomas Cocke at Westwood Cardiology. My surgeon will be Dr. Jock McCullough at Hackensack University Medical Center. I wish you well and let me know if I can be of any further help.

Robert Tucker
Joan Davenport  Hi Robert, Thanks for writing and I wish y ou all the best when you go for your surgery in 6 weeks a ... Read more