Hi Linda!

Sorry you're having a nervous day . . . that's pretty normal . . . try to put it our of your mind and concentrate on the good stuff in your life (and how good you'll feel after you recover from surgery!) If you're getting dizzy walking on your treadmill . . . maybe you shouldn't be on it. My doctors told me NOT to exercise at all before my surgery. Considering I hate to exercise, they didn't have to twist my arm!

Hope tomorrow is a better day!
Ricki

Thinking of you. Just keep exercising (as long as the Dr. says it's ok) and be in as good of shape as possible BEFORE the surgery. Walking was what did it for me. I also very rarely use the elevators at work. I also park farther away so I have to walk a bit. It works!!!! God Bless
Cindy

Hi Linda - again,

It's your only life so go for it! You deserve first class. I get the impression that CC isn't that concerned about how much they get paid.

The one bill thing alone is reason enough to go there. I remember when my husband had terminal cancer many years ago. The pile of bills I had just overwhelmed me. You don't need that on top of everything else!

I will bottle up and send all of the Karma I can locate!!!

Anne

Hi Linda,

We stayed at the Doubletree downtown but only because we had to rent a car anyway due to Erik running to the 'burbs to pick up my mother. The hotels away from CC have shuttles but they don't always run at the most convenient times. I think when you factor in everything, the Intercontinental would probably be the best. The concierge at CC can probably give you all of the info you need in one phone call plus help with the reservations and the limo from the airport.

As for insurance, I had Medicare and a secondary insurance that wouldn't pay outside of Colorado. I got ONE bill from CC to cover the entire operation (nothing from anyone else). It was for $2,066 but with a notation not to pay because they were still dealing with my secondary insurance. I have never gotten another bill so the total of my operation was $0! Considering that, the hotel/airlines and other expenses were nothing.

I think for you and your daughter, nearer is better!

P.S. I had an appointment with my cardiologist on Friday. He is amazed at my procedure and recovery. The surgeons from his group are going to learn to do this minimally invasive surgery because of the success I have had. My EKG was great.

Anne Shannon

Hi Linda!

My family and I stayed at the Intercontinental. I liked being able to use the skyway for weather (the day of my pre-op testing it was like a hurricane!) or at night (the first night I was in my regular room, my husband stayed with me. At 4am his back was killing him (the "beds" for visitors in the rooms aren't really beds and aren't comfortable) and I was fine so I sent him back to our room to get some sleep - I was happy he could just walk back and not have to be outside or wait for a shuttle. If I recall, the Intercontinental was $199/night - although that was 1 1/2 years ago.

Email me at rshine@clemson.edu and I'll tell you some details about the cost of the surgery.

Ricki

Hi Linda,
I think I can help you on the hotels at CCF. When I went for my consult last April, we stayed at the Guesthouse, and it was horrible. When we went back for my surgery in October, we decided to stay at the Intercontinental Suites and it was awesome! We had checked out both the Intercontinental and the Intercontinental Suites when were there in April, and the Suites was nicer in some ways, and a lot less expensive. Be sure to ask for the patient rate when you book it. You have to stay a week to get the good rate, but that wasn't a problem since we were there for thirteen days. If money is no object the intercontinental is really nice too. Hope this helps.
Deb Ziegler

Hi Linda, good to see you are still hanging tough. For me they said aortic root was a binary decision, if CT scan show 4.5cm or larger, they will replace my root. If smaller than 4.5cm, they won't. But, I do not have your family history. Good info on it on the Cleveland Clinic, I found it by googling bicuspid aortic valve disease and looked under other complications.

Not sure if you saw my reply to you in my guestbook, so I will repeat what I wrote. My doctor seems to be similar to the doctors in Cleveland. He said 95% of all valves installed these days are tissue. He also said to me, at age 47, over the next 40 years, I will likely have 2 total surgeries if I choose tissue. He then made a very bold statement, he said the risk associated with being on Coumadin for 40 years far outweigh the risks from 2 surgeries. I am now leaning heavily toward tissue. I may change back and forth a few times in the next few weeks.

As everyone says here, it is a hugely personal decision and I agree there is no right, wrong or bad decision. It is what you are comfortable doing.

Good luck my friend.
-Mitch Friedman

Linda. I own my own business & am pretty literate on computers but Im having trouble navigating on this. What's the best way to return a message ? Go to the site ? Answer direct. How does one send respone. Or is what I'm doing right. Lol. Thx.

Hi am new to this as well/ including procedure/ and the journal.. MY AVR is 2 9 12 and I"m ready. Am in St Louis and feel very good about it all. Great Dr. great hospital. etc. I"m on another forum that you might find interesting. Valvereplacement.org it's quite addictive..as is this.

Are you having a MINI/?? they expect to on me; except if they find bad stuff the day before on the cath. oh my ! hope not. I don't have pix up yet. I will

best wishes to you.. stay in touch. not sure if we're around the same age/ mid/ 60's female/ and in pretty good shape.. exercised. etc. thanks, Nancy

Hi, Linda
I tried to find you on Facebook, but couldn't.
Here's my email address so I can forward the picture to you.
Sheilagarrison10@yahoo.com

Sheila

Opps, Linda.....that picture is in my Facebook album.

Sheila

Hi Linda,
You brought flashbacks to me of those few weeks before my surgery. Wish I could wrap my arms around you now. But, please believe that you will be fine. You'll be surrounded by professionals the whole time and not be left alone.
Did you see the picture on my site of the doctors in the OR with Jesus???

Sheila Garrison

Linda...sounds like you have the same condition I had. My advice would be to get yourself in as good of shape as you can prior to surgery and once you make your valve decision, don't look back. I am a big believer in the power of positive thinking, so be confident and stay strong. It will serve you very well.
Just let me know if you have any questions...I want to help you in any way I can.

Take care

JH Mattingly

Happy New Year to the two of us.I get a new heart valve coming soon in Kansas City Mo.a little scared i cant decide on which valve i need im fifty yrs old

Linda,
I found your page! Yes it appears your surgery will be very similar to mine. I'll be praying. Let's keep in touch.
Cindy Kenward

Hi Linda!

Congrats on getting a date! In some ways it makes it more real but in others it should help you relax a bit as you have more certainty about what's going to happen. Whether they repair your root or not will be determined when they get a better look . . . it's certainly something to discuss with Dr. Gililinov when you meet with him.

I has a mini-sternectomy. My scar is 3-inches long. Pretty amazing!! Not long ago I would have had my whole chest cracked open . . . I'm glad I didn't need to have the surgery earlier.

As you get closer and have questions about what you will experience in Cleveland, don't hesitate to ask.

Have a happy new year!!! 2012 will be great!

Go Tigers!
Ricki

Hi Linda,

I opted for the mechanical valve and I'm happy with my choice. Being on Coumadin is proving to be no big deal to me. It's actually the only med that I'm taking and it's a low dose. I have a friend who received his tissue valve in 1987 and he still has it. And, he's very active. Amazing, isn't it?

I'm sending good wishes for you to have a safe and wonderful New Year's weekend.

Sheila Garrison

Linda,

I am the same age as you are 63 and just wondered what kind of insurance policy you have....not yet being on Medicare that enables you to get good out of state coverage?

I have a HealthNet PPO in California....very expensive....and terrible out of state coverage.

Thanks,

Pat Culley

Linda...you are in great hands at a great facility. My surgeon told me the same thing regarding valve replacements in the future, so I went with tissue too. I had the full sternum split due to my enlarged aortic root, so your recovery should be a bit easier. The waiting is the toughest. The recovery will go by very quickly...I am now 2.5 months post surgery and am doing everything I was doing before. You will do great!

Happy New Year to you.

JH Mattingly

Hi Linda,
Now it is a reality. You will have days that you might be able not to dwell on your upcoming surgery and days that you will think of nothing else. Having so much time will enable you to get ready and hopefully calm down knowing you are in the right direction. Those of us that have been through it will do our best to keep you focused on the positive outcome. Happy New Year.
Jane

So glad you have a date! I'm sure you are filled with anxiety now that the date is set ( I know I was!), but the anxiety will ease in a day or two when you start to accept the whole thing. The waiting truly is the worst part......wish you could just fast forward to March 13th.
You will do great!
Godspeed and good luck!
Deb Ziegler

WOW! Linda, that is great news and what a way to start your New Year of 2012! Although, March 13 is sort of a long time to wait. Actually, I remember the waiting being like that of being pregnant. I knew the due date....was somewhat worried about the labor part (open heart surgery) .....and hoping that the new baby (heart valve) was going to be the blessing I prayed for. And, just like having a baby......I don't remember any of the pain or discomfort of my aortic valve surgery.
I have March 13th circled on my calendar for you.

Sheila Garrison

Linda, great news! Congrats on getting a date. You still have some waiting to do, but at least you now know when. I know that must be a huge relief. All the best! -Mitch Friedman

Linda, Awendaw is on 17N.from Mt. Plesant. I spent 11 days in the Hosp. and a 2 day return.I ended up with a permenent Pace Maker. I saw the Dr. 2X in the Hosp. My family was left in the dark. There was NO Pre or Post Op. education. I let them know how angery I was. I have been free of pain since Nov. 14 (NO pain Med.needed) I have survived many things in my life and this is one of them.

Dear Linda, Awendaw is located just N. of Mt. Pleasant on 17N. Tomorrow will be 8 weeks in recovery. I am doing well now. I had a difficult time. 11 days in the Hospital and a 3 Day return stay. I had AV replacement and ended up with a Pace Maker. I saw the Dr. 2X. The Nurses were great. My family was left in the dark. I am angery about that. I did let them know. Where will you have surgery?Doris

Hi Linda!

Yes, waiting is the hardest part. I heard back from Dr. Sabik's nurse 2 weeks after my records arrived. I also had the hope (fantasy?) that they'd say . . . oh, those doctors in SC don't know a thing, you don't need surgery. But, of course, they called and confirmed everything my cardiologist had told me and scheduled my surgery for a month and half later. And yes, if it was emergent, they get you in more quickly and may even send the CC plane for you. (I was happy not to have to have THAT kind of service!)

Once I had a date, I did feel better and kept pretty calm all the way to the operating room. It may be hard but I think it really helps to stay calm. Some people need medication to help them . . . if you need it, don't hesitate to ask.

Try to enjoy the holidays . . . you'll be on the road to recovery before you know it!!

Ricki

Hi Linda,
I live in Wisconsin, and I had my records sent to Cleveland last February. It took a good three weeks before they got back to me. They then suggested I come for a consult, which I did. I had surgery with Dr. Gillinov in October, and I can tell you he is booked several months in advance. However, if you are in immediate need of surgery, they will find a spot for you. Dr. Gillinov is THE nicest, most compassionate and confident doctor I have ever met. My surgery went great, and I can honestly say, the hardest part was the waiting and worrying. The pain was waaay less than I was expecting. I know how anxious you are right now......I was the same way. Ask God for His peace and know that it will all go well.
Deb Z

God bless you, Linda. My heart goes out to you during the next few weeks....the waiting to hear and then the surgery.

My husband passed away 3 1/2 yrs. ago. And it was a bit hard to not have him by my side during my surgery. He was great at spoiling me. But, my family here did a nice job of helping me out during my recovery.

Merry Christmas to you, Linda. 2012 will be a nice adventure for you!

Sheila Garrison

Hi Linda,
I agree the waiting is the hardest part. I felt better when I had a date. I even got calmer as the date approached. We are all here for you. I believe your husband is looking down on you and is giving you the strength you will need. You are not alone. By the way, I would like to exchange info with Mitch Friedman. We are both New Yorkers. Encourage him to start a journal or have him contact me please. Jane Porpora

Linda - I already have Adam's book. And totally agree it is a must read for everyone in our shoes!
-Mitch Friedman

Hi Linda -

I just wanted to let you know you have another fan out here. On 12/13 I learned I needed to have my aortic valve replaced. This is to correct a regurg that has progressed over the past 10+ years. BTW, I am 47, and in very good shape.

Even though I knew this day was coming, and had done some preliminary research, the words "time to get it fixed" caught me off guard and immediately filled me with fear. I found this website and your jounal on 12/14.

I am currently in my research phase. I have appointments with 2 surgeons in NYC first week of Jan. I am also considering Cleveland Clinic. I have not yet taken the plunge to start my Journal. So, for now, I enjoy reading yours since our timing is likely the same.

Just wanted to say good luck. I am routing for you and learning from you. Thanks for that!!! Also, I totally agree, waiting is hard.

Happy Holidays.
- Mitch Friedman, NYC

Hi Linda,

You are right that the waiting it the hardesst part. My heart goes out to you and I send to a big hug.

I only had to travel 45 mins to the hosptial for my surgery, Dr. Gibson worked at the CC for 10 yrs before moving to California. He's the best!!
I've read your journal and will be following your journey with you.

This HVJ site is a blessing. My only advise: Your upper back/shoulder mucsles will ache after surgery. Make sure you get your back rubs. It's better than drugs.

May God bless you and take your aniexty away.

Sheila Garrison - Apple Valley, CA

Hi Again, Linda,
If you have known for some time that this would come someday, you are better prepared than I was. Although I've known about my mitral valve for 30 years, the condition is considered benign 95% of the time and "rarely requires surgery." The folks on this site might beg to differ there! It's good that you are well-researched and decided. The trip may be an added challenge but hey, this is your heart we're talking about and going to CC is definitely worth it. I am a 7 hour drive away so I can't speak for flying. The trip home was hard but I think that was mostly because of the fluid on my lungs making me feel so tired. Check out Gayle Dudley-Coe's journal. She had mitral valve repair close to home in January 2011 that failed and has just had successful re-repair at Sinai in NYC last week. She should be cleared for travel back to Idaho on Monday. She will be able to tell you more about flying.
And yes, waiting for a surgery date is the worst part. I was completely asymptomatic before my diagnosis but developed palpitations while waiting for a surgery date. As soon as the date was set, the palpitations stopped! You are in good hands with Dr. Gillanov. I met him briefly and have been on several of his webchats through CCF. Check Ashok Venkat's journal; Gillanov did his mitral repair recently, and there have been others whose names escape me right now. I will be thinking of you in the days to come.
Vicki

Linda,
You won't be sorry you decided on Cleveland! My cardiologist had recommended the hosptal where he had trained for my mitral valve surgery, but even though it is a large metropolitan hospital (Washington Hospital Center in DC) I didn't feel comfortable there when I went there for confirmatory cardiac catheterization. The surgeon was very proud to have trained at Cleveland, but that was 20 years ago. I sensed that he was capable of routine repairs but if he encountered anything out of the usual, he would replace my valve with a mechanical one. I did some internet seraching and decided on Cleveland. The difference in care and diagnostics was like night and day. They are accustomed to out of town patients and can do pre-op testing and surgery all in one continuous visit, if you don't want to travel twice. The coordination for testing is phenomenally efficient and runs like clockwork. I met my surgeon (Dr. Michaljevic, who has since gone to head Cleveland's cardiothoracic institute in Abu Dhabi) the day before. He gave me a 98% chance of repair, and recommended a biological valve in the unlikely event that a replacement was necessary. It wasn't, but the valve was more severely damaged than pre-op testing indicated and would have been far beyond the DC surgeon's skill to repair. So I got to keep my own valve and no coumadin! Cleveland also has a significantly better track record on longevity of repair (95% are lifetime, national average is 90% last 10 years). These are mitral valve stats, but aortic stats are probably equally impressive. For recovery, STAY POSITIVE and push yourself as far as your docs will allow. I got pleural effusions (fluid on the lungs), which made it hard to breathe and extended my hospital stay. I felt so tired from breathing that I didn't fight back and I think that prolonged my recovery. By the time I went to cardiac rehab, I was itching to be more active, but a very conservative nurse there scared me with horror stories about people who did too much too soon. I should have listened to my instincts. I felt I was ready to mow the lawn at 8 weeks but waited until 12 weeks for fear I would "bust something loose." He later went to a conference and asked a surgeon how long sternal restrictions are recommended and of course, CCF docs were right- 6 weeks! So don't let heart surgery destroy your self-confidence. There are alot of people on this site who are living proof that although it is heart surgery, it isn't the end of an active life. On the contrary, it can be the beginning. Wishing you the best!
Vicki Pierson, CCF mitral valve June 2 2011

I forgot to tell you I have youtube videos up documenting each day in the hospital. Just search Cindy Kenward and you'll find them.

Hi Linda,
My Surgeon was Dr. Brian Kogon. My Valve condition (bicuspid) is congenital. He is actually a pediatric Cardiothoracic surgeon. I have a genetic condition called Turner Syndrome. I am only 4'9". Dr. Kogon is used to working on smaller people. As far as tips I say get up and moving as soon as you can within the parameters that your doctors give you. I was orperated on Tues (12/6) and was gently walking the halls on Thurs (12/8).
Cindy Kenward

Hi Linda,
I just had the same surgery you are gettting ready to have on December 6th. I am doing very well. I am walking daily and even getting out a bit. You can see my journal. Please feel free to contact me if you have any questions.
Cindy Kenward

Hi Linda!

So happy you're a Tigers fan! We're all excited about the Orange Bowl . . . I work in Tillman Hall and the day after the ACC championship the statue of Thomas Green Clemson out front was covered in oranges. It was very cute!!

I can't believe you climbed the stadium steps with no problem. I huffed and puffed my way up steps and hills for YEARS before my surgery.

I had my surgery on a Thursday and was discharged the following Wednesday and flew back to Greenville on Friday. Flying wasn't a problem - I did use the wheelchair service but other than that, it wasn't any different than any other flight. As Anne said, the CC concierge service was great . . . especially the free limo service to and from the airport. THAT was impressive!

I didn't get any flak about going to Cleveland from my doctors. (They, and other doctors in town, have told me they would go to Cleveland too if they needed this surgery.)

As you go through the process, feel free to email me at rshine@clemson.edu. And the next time you're up this way, I'd love to meet you!

Ricki Shine

Hi Linda,

Get used to it! No one local will encourage you to go to Cleveland. It's business and they want to keep it in their systems. Neither my cardiologist nor my PCP were in favor of the idea. HOWEVER, my last visit with that cardiologist, he told me that the surgeons in his practice were in touch with CC to learn about the procedure I had done. He now refers to my "weekend surgery" and acts like it was his idea all along!

One of the deciding factors for me was when I talked to an old friend who was a doctor at the local hospital. When I told him the decision was between his hospital and CC, he didn't even pause before saying "Go to Cleveland!" He said you go to the hospital and surgeon where they do the most of the procedure that you want.

As Ricki said, the entire experience was positive. And the follow up is that (at 70) I feel terrific - lots of energy and no after effects. I hope it will be as successful for you!

Anne Shannon

Hi Linda!

I live in Greenville and went to the Cleveland Clinic for my aortic valve replacement in May 2010. My surgeon was Joseph Sabik and I can't say enough great things about the CC. No one wants open heart surgery but if you have to have it, it's the best.

My surgery was minimally invasive and it wasn't nearly as bad as I had imagined. My recovery was pretty uneventful . . . I was back at work in 11 weeks although, truth be told, I could have gone back after 8. I work at Clemson and it was the summer, so I wasn't in a hurry!

As for the bra issue . . . they gave me a surgical bra and I wore it once. I'm fairly well endowed and it was not comfortable! I actually went braless for about a month . . . wore soft v-neck t-shirts with large men's button-front shirts on top when people were around. (Just the t-shirt when it was just me and my husband!)

Good luck with your surgery and feel free to ask any questions you have.

Ricki Shine

Hi Linda,

I flew to CC from Denver CO. No problem at all. Cleveland is well set-up to handle CC patients. Be sure to use the concierge at the clinic - he/she can help with hotel reservations, flights and limo service to and from the airport. The entire city caters to CC!

I had a minimally invasive replacement of my aortic valve. It was absolutely great. Very little pain and I was up and out of the hospital less than three days after surgery. They are fond of the minimally invasive procedures at CC. My Denver cardiologist gave me the song and dance about how the local surgeon would want to do a full sternotomy so they could see what they are doing. Well, CC is the #1 cardiology hospital in the country so I would go with whatever procedure Dr. Gilinov considers the best for your situation. But don't be afraid of the minimally invasive thing - recovery is VERY fast. I flew back to Denver four days after surgery and less than a week later, I was out to lunch under my own power with a friend.

The bra shouldn't be a big issue - I don't recall that I had a problem. Just remember to use you spirometer a LOT! It seems to keep chest and back pain under control quite well.

Anyway, check out my journal and give me a holler if you have questions.

Anne Shannon

Hi Linda,
I did have a sternotomy. I wanted the fastest entry and surgery. I had been told that it would be shorter from start to finish. The nurses advised to put a bra on as soon as I felt ready, suggesting that it would give my whole chest a feeling of support. I haven't tried yet. I just love my cute little cami's under my soft long sleeve tee shirts. I know I will have to do it, probably this week-end. Please update after your cardiologist visit. Good luck.
Jane

Hi Linda,
I had my valve surgery 10 days ago. While in Columbia Hospital in New York, I realized that a great number of patients had traveled very far for their surgery. They all seemed to want the same team of doctors. If you end up New York bound, I will give you info. I am sure it is on Adam's blog as well. This is a very supportive group and we will stay with you through out the process. Best of luck. Keep us updated.
Jane

Hi Linda and welcome to the HVJ site. It's the best place to be.
I had my surgery in July and was back to work part-time at 6 weeks. I'm a sports massaage therapist. You will be amazed with your new found engery.

I wish you the very best and will follow your journey. May God bless you and be with you always.
Enjoy your Christmas!

Sheila Garrison - Apple Valley, CA

Oops. I accidentally submitted before I was finished. As I was saying, my procedure was minimally invasive so that may have helped. Dr. Gillinov, his team and the staff at Cleveland were great. You'll be in good hands. Best of luck to you.

Chris Hanson

Hi Linda,
I had my mitral valve repaired by Dr. Gillinov on Sept 22 of this year. I was discharged from the hospital on the 26th and flew home on the 27th. It was fine. I still had had some soreness from the procedure of course, but the flight did not make it any worse. My procedure was minimally invasive (mini thorachotomy

Hi Linda!

So we move from Facebook to Heart Valve Journals!

:)

Glad to hear everything is working out with Dr. Gillinov.

Keep on tickin!
Adam Pick