On July 18, 2012...
Hi Summer,
Where's your haircut pictures? What a great thing to do prior to surgery. It makes it all the more memorable and meaningful.
Best of luck today, you'll do great!

Nancy B
On July 17, 2012...
Summer, you are almost there! I wanted to let you know my thoughts and prayers will be with you tomorrow. Featured Patient!!! Woo Hoo! You can do this! Walk as soon as you can and chose the chair when given a choice of the bed or chair!!
Holly P
On July 17, 2012...
Peace and joy be with you and yours -- DVB
On July 17, 2012...
Hi Summer -

Best of luck tomorrow. This is all very manageable. Don't be a hero, take your pain meds like clockwork and all will be fine. You can do it. Soon you will be fixed and good as new. Your doc is one of the best. He can do this in his sleep (but let's hope he does not try tomorrow).

To answer your question to me, I am doing great. Just over 5 months post op and I ran the big loop in Central Park this past Saturday (6 miles), in the heat no less! My new aortic valve and Dacron graft section of my lower ascending aorta worked great! Good luck, let me know if I can help you in anyway.

-Mitch Friedman
AVR and lower AA repair 2-2-12
On July 17, 2012...
Summer:

I also have a dialated acsending aorta and will be having surgery on September 10th to fix it.

I will be thinking of you tomorrow. I hope the surgery goes well.

Natalie

On July 17, 2012...
Hi Summer,

I wanted to write and tell you we will be thinking and praying for you tomorrow. It sounds like you and your family have had some really tough blows lately and we hope you begin having much brighter days ahead. I will remind Connie (your twin) later that your surgery is tomorrow. I know she will be hoping yours goes as well as hers did. Best wishes to you and we look forward to hearing how you get along. That is a great thing you've done to donate your hair to Locks of Love. Someone will really appreciate and benifit from your generosity. Sincerely, Dan T
On July 17, 2012...
Hi Summer, Want to wish you Good Luck tomorrow. I know you will fly thru this and be a rock star. Now I think you are in Dr. Oz's hospital. If you happen to see him tell him one of his followers says Hi. :) You knows you just might be on tv. He has a new show from there on Tues night. So keep a smile going you never know that camera just might catch you lol.
Anyway I will keep you and your family in my thoughts and prayers as well. My mind has been like mush since yesterday. So now I really know . I will be looking for some good news tomorrow like Connies already good and flying Hugs and prayers your way.
Starting the climb
Linda H
On July 17, 2012...
Hi Summer - you are in my thoughts and prayers as you prepare to climb your mountain. God and his angels will be watching over you! We look forward to hearing from you on the other side. Take care and God bless you! Denise Kirchner
On July 17, 2012...
Hi Summer,

Your wait is almost over, and that truly is the hardest part. You sound ready and good to go. You will be in my thoughts and prayers tomorrow and the days ahead.
God Bless,
Deb Z
On July 15, 2012...
Hi Summer,
Thanks for writing to me and I'm glad you found my journal. I know you are away in the Adirondack's for a few days (probably due home tonight), but I'd like to re-assure you that you made a great choice in surgeons when you chose Dr. Stewart. He is so unbelieveably skilled at what he does and so low-key about it all. He has a fantastic team and they all work so well together. Look for a nurse named Sandra (she comes from Jamaica) in ICU and also Kate and Tess and Risa in ICU. If you can, please tell Sandra I said hello and that I am doing well. I didn't get a chance to see her before I left. I stayed in ICU longer than I should because they had no rooms available in step-down until about the day before I was discharged. They did alot of surgeries at the same time and the system got a bit overloaded room-wise. Hopefully it will be a bit quieter when you are there. Another little tip: if you don't like the food you can order from the restaurant menu (Windows on the Hudson) but you have to pay for it (it's very reasonable and very good). Just ask.
All in all, you will be very well cared for by a wonderful team of doctors, nurses, NP's, PA's etc. and the time will just fly by sooooo fast.
So, best of luck to you and please keep in touch.
Many blessings,
Joan Davenport
Summer Ash  Thanks, Joan! It's so great to hear from a Dr. Stewart insider. :) I am getting more excited about to ... Read more
On July 14, 2012...
Hey Summer,

Good luck with the surgery! I'm thinking about you and looking forward to seeing you in August!

Hugs from Brazil,
Merry
On July 14, 2012...
Hey there my almost surgery twin :)
Just stopping by to see how the "vaca" was. I am sure after some down time you are truly focused on the task at hand!
Talk to you soon.....We Be Almost There!!
Connie T
On July 12, 2012...
Hi Summer-

Hope you enjoyed your disconnecting/camping trip.

It is so important that we take this pre and post op time to focus on the most important thing...us and our health, family and friends.

Everything else is secondary...

I'll continue to watch for your posts. If I don't message prior good luck next week.

Karen Campo
On July 10, 2012...
Hello fellow NYCer -

I am 5 months post op and have not been on consistently, so have missed you until now. I had my surgery at Cornell, but met with Dr. Stewart as one of my surgical consults. AsI am sure you know, he is the greatest. It was a tough decision for me not to go with him, but I wanted to keep my cardiologist as part of my surgical team and he is at Cornell. I think the world of my surgeon (Dr. Len Girardi). We are lucky to live in NYC and have so many great options. I can't help you on the bra stuff, but if there is anything I can do to help you, please ask. Check out my journal, I am told it has been helpful to others. Also look up Jane Porpura. She had here surgery with Dr. Craig Smith at Columbia, so she can answer hospital questions. Plus, Joan Davenport just had her surgery with Dr. Stewart.

The calm will settle in shortly, for your heart too. This is a daunting process, but it is very manageable. You will do fine. Really. Good luck and let me know if I can help in anyway.

- Mitch Friedman
Summer Ash  Hi Mitch! I've definitely scoured your journal for tips and advice. It was very useful. Thanks for th ... Read more
On July 8, 2012...
Dear Summer, If you are small busted you may be able to go without your bra. If you are DD and beyond, you will need a bra because the heaviness of your breasts pull on the sternotomy. I woke up with a surgical bra and wore it weeks afterwards. Ask your surgeon and they will be sure to provide you with one. I had the full monty, am big busted and was not able to even sleep without a bra. Janis Kielbasa
Summer Ash  Thanks, Janis! I'm on the smaller side, so I guess we'll see what happens...!
On July 7, 2012...
Summer, the bra thing was a real issue for me for a while. I had a mini, but my chest tube entrance was midline, right where the "band" of my bras hit, even the Ahhh bra. I understand that some facilities will provide you with a "surgical" bra, I don't know how comfortable they are. I only wore a bra when I absolutely HAD to for several weeks. I even flew home bra-less from Cleveland, tee shirt and lightweight hoodie was my wardrobe for a while. My incision was only about 3 1/2 inches, right in the middle of my cleavage, so my bra never touched the actual incision, just the chest tube site. My recommendation is just go bra-less...you will have the perfect excuse!
Linda Dixon, AVR 3/13/12
Summer Ash  Thanks, Linda! I'm definitely looking into the Ahh bra, but we'll see how things actually go once I'm ... Read more
On July 7, 2012...
Hi there! I had the full monte done! :) I didn't wear a bra for a couple of weeks after surgery. Whenever we'd have visitors come over, I would keep my chest covered with my heart pillow, or hug the closest pillow around on the sofa. Most likely, I could have worn one a lot sooner. Sleeping was the uncomfortable part for me, never the bra.

Christy Naughton
Summer Ash  Thanks, Christy! I like the image of hugging the heart pillow. ;)
On July 7, 2012...
Hi Summer,
I only had a mini sternotomy, but I found the "AAH" type bras super comfortable. Could wear them with no problems. They don't offer a lot of support, but you don't really need a lot while you are recovering. I tried to put on my regular bra about two months out, and while it felt ok when I put it on, by the end of the day my sternum really hurt. It was just too tight. It was a good four months before I could wear my regular bras.
Hope this helps.....
Take care,
Deb Z
Summer Ash  That definitely helps, Deb - thanks! Just trying to collect as many opinions as possible based on eve ... Read more
On July 6, 2012...
Yeah, stress about the big day.

Be calm, at peace. You are doing the smartest thing you can. Be confident there is no better path. Start thinking about and planning your recovery. Know that it will be glorious!

-- DVB
On July 6, 2012...
I don't know if you are talking about palpitations or not, but I had a ton of them before my surgery. The more nervous I got, the worse they got. I don't know if there is anything you can do to stop them.

Godspeed and good luck with your surgery. You are in my prayers!

Deb Z
Summer Ash  Hi Deb,

I definitely had palpitations last month. I even went to the ER for them after 48+ hours. T ... Read more
On July 6, 2012...
Hi, Summer -- re: weight gain. I must have gained about 15 pounds overnight due to the massive amount of fluid they pump you up with during surgery, but I lost it all within a week after surgery due to loss of appetite and diuretics.

As I recall, the wait up to my surgery was fairly calm. I may have "lost it" once or twice, but I mostly just kept my sense of humor, hopped on the "train" that is the process and was laughing up until I woke up in ICU.

Then it hurt too much to laugh!
Selma Kaplan
Summer Ash  Thanks, Selma!

I am now going to pretend I'm on a train every time the wheel me around on the bed. ; ... Read more
On July 5, 2012...
Hi Summer I know what your body is doing. Your body is saying I dont know about this let me think about it. Its in denial. And your heart is excited about getting all better. I think your heart will tell your body to get the message soon. It will all catch up and soon you will be going oh wow Im fixed. Until later from your radio active friend.
For the long haul
Linda H
On July 4, 2012...
Hi Summer, was just reading your entry on May 22nd about weight gain after surgery. I was not aware, but my husband said the first 2 days I looked a little puffy. I went into this weighing 112 pounds and the third day after surgery was at 116 (some of the water weight from surgery), then my discharge day of June 4th I was at 106. I actually lost weight becasuse I had zero appetite the first week after surgery which is common in Mitral Valve repair patients.Once home I lost another pound or 2, but then my appetite came back about the 3rd week and I am now at 108 lbs. I would not worry about the weight gain if I were you it diminished pretty quickly with the lasix they gave me post surgery. Take care - you will do great with your surgery! Denise Kirchner
On June 20, 2012...
Hi summer. Normally I'm between 120 and 125. I started gaining a ton of weight a year and a half ago and chalked it up to a lower metabolism being 45 now. Turns out it was fluid build up and fluid in my lungs. I had them drained a liter and a half in my right lung and a liter in my left. Anywho I was weighed the day before my surgery and was a whopping 149. When i went home I was 135. They told me I had been retaining weight due to my heart not pumping properly. They will watch your weight carefully as dramatic shifts equal issues. I went to the doctor on Monday for my inr check and I'm at 132. My goal is to get back to 125 and every day I feel better, stronger and have more stamina. I am 5 months out and had some complications due to my previous surgery at 3 months. I have always been thin and should have never chalked my weight gain up to age. But now I know. At your age you will bounce back quickly and will most likely lose some water weight just from the fluid reduction.
On May 31, 2012...
Hi, I had my aortic surgery almost 4 years ago at morristown at age 45. If you want to ask anything don't hesitate. My email is jeffstoveken@yahoo.com don't worry I'm sure you'll be fine. I always say the surgeon has the tough job,you just get to sleep the it! Jeff
On May 29, 2012...
I gained 15 pounds the day of my surgery (due to water weight, was on lasix for a couple days, left the hospital at my normal pre-op weight. The next 6 months I gained 10 lbs, but mostly because I was told to slow down and not do so much....still trying to work off the 10 lbs, but it will come with time!
roxanne dropko
fellow hvjer
On May 23, 2012...
As you will soon find out,everyone has unique reactions to VRS. My "weight gain phenomenon" was the opposite of your concern. In the lead-up to surgery I was gaining weight, diets and exercise notwithstanding.

During my surgery (AVR and by-pass) I dropped 25#, to establish a new baseline. A 2# gain is serious...call the doctor.

So? you may gain, or not. The Doc will advise.

John Teeftt
On May 23, 2012...
Hi, Summer -
As the rest have said, it's all fluid that they fill you up with in the course of your surgery. I think I was carrying around 20 extra pounds for a few days, but you'll be given diuretics and will lose all of it. I'm 11 days past surgery and down to my pre-surgical weight. Hopefully, I can use this enforced time-off to lose a little more.
Selma K
On May 23, 2012...
Summer, the weight gain is from the fluid used while you are on bypass. I gained 17 pounds while in the OR, but lost it all before leaving the hospital on day 4. You will be give Lasix to help you get rid of it and your fluid intake will be limited for a while following surgery. You will look a little bit like the Pillsbury dough boy (are you old enough to remember him, lol?) but it doesn't last long. So, don't fret about that. It's all good!

Linda Dixon, AVR, aortaplasty 3/13/12
Summer Ash  I certainly am and now you've made me crave those pillsbury cinnamon rolls...yum...
On May 23, 2012...
Hi Summer,
I haven't had my surgery yet, but understand the 10 or so lbs. gained is all water and temporary. To me, it sounds very uncomfortable. I'm planning on bringing loose fitting clothes and not worrying about it. My ultimate plan is to come out weighing less than I did pre-surgery. I'm sure I'll have lost muscle too so getting that back will be part of my post surgical plan.

Nancy B
Summer Ash  Thanks, Nancy. I finally got around to buying a few pairs of super comfy, but loose, pajama pants for ... Read more
On May 22, 2012...
Summer,

On May 9th I had Mitral Valve Repair surgery (open heart). I gained about 10 pounds within 3 days. However, by the fourth day I began to lose the weight. Today, about two weeks after surgery, that weight is gone, in fact I weigh about 5 pounds less than before surgery. Today at my follow up appointment I was told I no longer had to wear the compression socks. My sense is that you may just be a amused by this part of the journey.

Wes P. MVR 5/9/12
Summer Ash  Thanks, Wes. I think you're right - except for the whole chest-cracked open part, I'm looking at this ... Read more
On May 22, 2012...
Summer. DVB is our resident expert. WheN he Talks - best to listen. Some of the best advice I Got was from DVB

That being said. I'm 3 month post and 12 lbs lighter

So it s different for everyone

Want to know what to being to the hospital with you ? Your sense of humor and positive attitude. You will not need anything else. Hospital has it everything you need. Ok iPad is good.

Best to you. I'm not on the HVJ as much anymore. Cuz I'm too busy having fun and living great. And breathing better

Best to you

Nancy Friedman. St Louis mo 2-9-11. AVR
Summer Ash  Thanks so much for your kind words, Nancy.

Now get off the computer and get back to your fun! :)
On May 22, 2012...
Ha. That will teach me to get fancy with html tags. Sorry about the italics "flood". -- DVB
On May 22, 2012...
Hi Summer! I had a mis-spent youth as an astrophysicist. Now am more of a rocket scientist, actually. Last year I had my mitral valve repaired, so learned a bunch about that (not enough to do it though!). Interestingly your odds of surviving heart surgery are about the same as for spaceflight. So if you'd take the trip up, it is not much different than taking the other "trip". That thought alone helped calm my 20%.

If you are lucky there will be some studies that compare outcomes for patients who underwent surgery and those that opted not to. For example, here's a summary ppt:

www.ltcif.com/webcontent/thoracic_aorta.ppt

If you are able to track down references for the data in there, I'd love to know. Those charts provide sobering views that will help calm that 20%: the alternative is far worse. As you look at the numbers bear in mind that they were generated using patients in the past, perhaps many years ago, and current survival rates for patients who have surgery are likely to be significantly better because techniques are better and surgeons have more experience.

Another thing you can do is actively work to manage your risk. Survival rates s are in the mid-to-high-nineties percentage-wise. That sounds pretty good, but you are interested more in 1-s, because that is the chance of you not making it. Making that smaller is important, and there are things you can explore with your team to see if they make sense in your case.

First, 1-s depends on surgical team experience. For mitral valve repair surgeries, it is a factor of 2 to 3 worse for teams that do fewer than 5 repairs a year than those that do a lot. I don't know the stats on your procedure, but they in all likelihood go in the same direction. So investigate your team's success rates to the point you are satisfied.

Second, since you are diagnosed but haven't had surgery yet, you can place yourself on the survival curve (Kaplan-Meier curve) for your condition. It will show that there is a small (but not zero) chance that something bad could happen before surgery. Looking at the charts in the powerpoint, it is about 1/2% per month. It may be that medical management (afterload reduction?) will knock that down. I went on a beta-blocker pre-surgery for that reason, just for a month, as a prophylactic measure.

Third, low body weight is a risk factor for heart surgery. Since I am on the thin side, I bulked up a bit before hand. Then promptly lost it all during and after surgery, so am glad I did that.

Fourth, good physical conditioning is a known plus for heart surgery. So, if after a discussion with your team it seems like a good idea, bump up or at least maintain your exercise capacity . This might just be walking, maybe something more. Be sure to discuss though, since in some cases exercise is not advised if it increases the risk of the bad things of #2 happening. If it is OK, even a week's worth will help.

Fifth, I don't know of any studies on this, but it makes sense (so take with a grain of salt) that being well rested, relaxed and calm going in to surgery puts your body on a more resilient footing. For me that meant being certain that surgery was the absolutely my best choice, and the sooner the better.

Many patients don't realize that they can reduce 1-s significantly by their own choices. And for some reason, probably because of the way health care is fractionated between practitioners, there isn't as much systematic patient risk management as there could be. So often it is up to patients to self-educate and self-advocate. I'm a firm believer in the premise that there is always something you can do to make your situation better, and these are a few of the things I did when faced with OHS.

Peace -- DVB