Hi Cly Denna,

The stay at the Intercontinental Suites was excellent. They let us check in early, put our two rooms adjacent to eachother and upgraded one room from a standard to a suite with a separate kitchen/living area. I spent a ton of time (maybe 8 hours?) bidding on the room through Priceline, and following the recommendations on biddingfortravel.com. My final price was $97 + taxes/night for 2 rooms over 5 days (total of 10 days), so it ended up saving us several hundred dollars. The last week we stayed at the guesthouse, which was fine but definitely a step down. As you've probably heard, either of those hotels are a 5 minute walk to the hospital.

-Thomas H.

Cly Deena, thank you so much for the kind words. You will love Dr. Gillinov (if you haven't already met him). I don't know why I had such an easy time but I sure am grateful. I do know that a huge part was the skill of Dr. Gillinov and the staff caregivers. I cannot say enough good things about CCF! I will say...the ICU (or at least the one I was in...I believe they have 6 ICU's) was not the place to get sleep, but I have come to realize that ICU is where they want you to wake up, lol! I was in ICU for just 24 hours and a lot of that time was waiting for a room to become available on the step down unit. I was in J6, room 26. The step down unit is VERY quiet. Of course, they do still take care of you around the clock, so it still doesn't make for uninterupted sleep. Norm sounds a lot like my late husband. I also "took care of everything" when it came to his illness with doctor visits, schedules, etc. He didn't want to know anything, he just wanted to show up and let them do whatever they had to do. Please keep us posted during your stay at CCF. I know you will both be well taken care of. God bless.
Linda Dixon, AVR 3/13/12

Hi Cly Denna,

Sorry it took a couple days to get back to you...so easily side-tracked. Tried to post a little more info w/r/t your questions, and agree with all that Deb Z mentioned below.

1) They anticipated I would be getting the robotic repair, until I learned the robot was broken :-) My chest and the insides of my legs were shaved....kind of strange to see hair only on the outside of your legs...but this may have been regardless of if whether I was having the robotic repair.

2) I recall I was insructed to keep taking metoprolol up to the day before the surgery, but had to stop coumadin 5 days before. They also had me take a prescription nasal anti-microbial wash/ointment that I had to place in my nostrils the night before just as a precaution. It's kind of like petroleum jelly.

3) Don't recall being contacted before surgery with the exception of a minor insurance issue regarding a CT scan.

4) When you and Norb meet with the nurse practitioner the day before surgery, I believe they will have you watch a short video describing the surgery. I also met with a clinical researcher regarding a study I was asked to participate in, so that would be a possible meeting.

Hope this helps!

Thomas H.

I had the robotic mitral valve repair on April 25, 2012 at Mayo Clinic in Rochester. Since I am a female, I can't tell you about the shaving, but I agree that they probably do just in case they have to open up the sternum. I didn't take any medicine pre-op, and in fact they told to stop any aspirin 10 days before the procedure. I was on by-pass for 1 1/2 hours and they were able to repair without any complications. I don't remember the ventilator at all, they extubated me on the OR table before moving to ICU. I was only in ICU for 3 hours and then moved to my room by wheelchair, which meant I was up and transferring by early evening! I sat up in a chair for a while that evening. I had a PCA pain pump for the first day after surgery, then switched to alternating tylenol and ibuprofen every 4 hours. Honestly the pain level was never over a "4" for me the entire hospital stay, but everyone has a different level of pain tolerance!! I was dismissed on the 28th, spent the night in a motel and then we drove home the next day, an 8 hour trip!. I could go up and down stairs, drive after a week, and started cardiac rehab after 2 weeks! Not everyone has the same journey, there will be different "bumps" for everyone. Just wanted to encourage you with your decision! Hang in there, all your questions should be answered with a phone call to your surgeon's office, and if not, keep calling!
Holly P

Hi Cly Deena, you have gotten excellent answers from other CCF alumni...I will just add...if you haven't already received it, you should receive a "packet" with everything you always wanted to know and more!. The only thing I had the day before surgery was meeting with Dr. Gillinov. I met with the anesthesiologist, the pre-op nurse, watched a video, etc. 2 days prior to surgery. So, I suspect it might be a little different with some patients, probably depends mainly on Dr. Gillinov's schedule and also I traveled there from SC, so that may make a difference since you live in Cleveland. Don't worry...the staff will keep you informed. It's a great facility!
Linda Dixon, AVR 3/13/12

Hi Cly Deena,
I did not have robotic surgery, but I'm sure Norb will have to get the full body shave just in case they have to do an emergency sternotomy (not very likely).
I was instructed to take NO MEDS five days prior to my surgery unless they were ok'd by my surgeon (Dr. Gillinov). Cleveland Clinic did not contact me prior to my arrival there. They urge you to call them if you have any questions though. After your full day of testing and TCI (to come in) appointment, your only appointment will be with Dr. Gillinov the next morning. If he wants another test done, they will schedule it that day. Otherwise, you are cleared for surgery and have the rest of the day off. There are no classes scheduled for that day. You will have a class while Norb is in surgery that prepares you to see him when he gets out. Remember, they do this EVERY DAY and it all runs very smoothly. CCF is truly an amazing place.
Godspeed and good luck! You and Norb will be in my prayers.

Deb Ziegler

Additional notes from Ruth:
1. I had robotic surgery and, frankly, blame it on my complications and would not have it again.

2. Before getting any immunizations, check with your cardiologist as they do not recommend immunizations several weeks prior to heart surgery.

3. The Guest House has been recently redecorated. When we stayed there priort to my surgery it was awful. During my surgery my husband stayed at the Suites which was a waste of money since he was always at the hospital with me. During our last two visits (recently in April) we stayed at the Guest House and it was considerably better since the renovations.... and it's really convenient for you to walk across the street to the hospital.

4. I was advised by my cardiologist and surgeon not to try to lose weight or "get in shape" with exercises before surgery. You really should check with your doctor before taking anyone's advice regarding this type of thing.

As for things you might want to do/get prior to surgery:

1. A stool for sitting in the shower in case you are weak after surgery. It was a Godsend for me, but then I was in worse condition than most.

2. We used a Walkie Talkie so that I could call my husband from the bedroom if he was outside mowing the lawn, etc. This really was a convenience during the first few weeks of my recovery.

I wish you well and know you will be happy with your care at the Cleveland Clinic.
Ruth Howell
Maine

Hi Cly Denna,

I, like you, read every journal entry on almost a daily basis...even 3 weeks after post-op. It's addicting isn't it?

Thanks for the kind note below. It means a lot to hear that I can provide a little insight into what to expect. I remember how reassuring it was to read dozens of stories before my surgery. Can't count how many days I was up to 3 am wrapping my mind around what I was about to go through.

As for visiting at the clinic, they really couldn't have been better. I believe their policy is you can visit any day, anytime whether you are in the ICU or in the recovery room. They do limit it to only 2 visitors at a time because there are several patients in the ICU at once and don't want it to get overcrowded. However they were even a bit lenient on this as my 3-yr old daughter was allowed to come in with my Dad and wife. The nurses will also allow you to call into the ICU for updates over the phone in the middlie of the night if you are back at the suites while Norb is still recovering in the ICU.

All recovery rooms have a flat leather upholstered bench that slides out to function as a bed. Its not the most comfortable thing to sleep on, but both my wife and sister survived. Just ask for extra pillows and blankets. One suggestion, see if you can get them to give you a room facing west; you will have a beautiful view every day; I have heard the other side faces a wall 10 ft away. You can also request a room change and was told they will accommodate it if there a room opens up.

This last month will fly and we will be wishing you the best. If you ever have any questions, please don't hesitate to write. BTW, my email is tom8hunt@yahoo.com just in case.

Hello Norb's wife & Norb,
My name is Ruth Howell and I am 65 year. I had a very difficult mitral valve repair done in April 2011 by Dr. Marc Gillinov at the Cleveland Clinic. You have chosen the best possible hospital and doctors!!!! I had a lot of unusual complications and ended up having two heart surgeries in two days. Don't let that alarm you because my entire body seems to be an anomoly. If I had not been at the Cleveland Clinic I am certain I would not have survived these ordeals. I would be more than happy to give any advice and suggestions I can. Just ask.

First of all, the Cleveland Clinic Guest House (hotel) is located directly across the street from the heart hospital. You can literally walk across the street to the hospital. I'd advise you to stay there for convenience. They do have free shuttles that run everywhere on the campus every 15 minutes if you prefer to stay at the Suites (which is more expensive). There is also the Intercontinental Hotel which is located in the heart hospital building, but it is quite a bit more expensive than the previous two. We stayed at the Suites during my surgery, but it didn't pay off as my husband was never there since he was always at the hospital. We have stayed at the Guest House twice. We noticed when we were there in November that they had completely re-done the rooms. They are not "high end," or plush, but they are brand new, neat, clean and attractive. We will be staying there again when I go back for my follow-up in April 2012.

1. As a surgical patient the Cleveland Clinic will provide you with the following:
Free limo service to and from the hospital.
A discounted hotel rate.
Concierge services that will make all your travel arrangements if you like and arrange for you to be met by a wheelchair, if necessary.

There is a deli-style restaurant downstairs in the Guest Suite. Food is only average. There is a La Bon Pan in the hospital as well as a few fast food places and a large, really nice cafeteria which is open to the public. (and it's inexpensive). We usually eat at the cafeteria or take food back to the hotel.

You can get everything you need or want right there in the heart hospital without having to leave the premises.

It is my understanding that the Cleveland Clinic does not want pts. to get flu shot closer than 6 weeks before surgery. I would check with you Cleveland Clinic doctor before doing anything. I was not in good shape prior to surgery as I was very tired all the time. My CCF cardiologist advised against trying to get in shape right before surgery.

As for Dr. Gillinov, as everyone will tell you, not only is he the best, he is a wonderful, kind, caring, sensitive man. You will LOVE LOVE LOVE him.

Due to my complications, I was in the hospital for four weeks and was then sent to a rehab. facility. My discharge was unexpectedly speedy so that I could take the room in the rehab. facility that was available. So I did not get the usual discharge counseling. While your husband is in the hospital ask (and make notes) as to what kind of issue, side effects, etc. he might experience at home. This way you will not become upset or frightened if he gets palpitations, etc. I find I do better when I know exactly what "could" happen and what I should expect.

I go back to the Cleveland Clinic every six months for follow-up and I make a point of seeing Dr. Gillinov as well as Dr. Griffin. He is always happy and anxious to see me. What surgeon would take the time out of his busy day to come and give a patient a big hug?

This hospital and their doctors and medical staff are compltely equipped to handled even the most unusual situations and emergencies, as my husband witnessed when I was there. Your husband will be in excellent hands and you need not worry. You will find the care, attention and responsiveness superior to anything you have ever seen.

Please let me know if you have any other questions. I hope this helps a little.
Ruth Howell, Maine

Hi Norb's wife. Advice, hmmm. A few things.

First is since the surgery is in a few months, there's time get Norb in good physical shape, conditioning-wise. This really helps in the recovery. Being able to do a sit-up to get out of bed is huge. And having some stamina to start with will really help when it gets knocked down to almost nothing by the surgery.

Then, since low body weight is a surgical risk factor make sure he isn't underweight at the time of surgery.

Also, get him a flu shot if he doesn't have one already this year.

Be sure robotic is right for him. Robotic repair is still investigational and is done on a select cohort of patients. However, the operative and peri-operative (within 30 days) risk is the same. My reading of that is for otherwise healthy patients robotic is in fact riskier. It also has a significantly higher rate of stroke. I chose open heart for these reasons and the fact that it gives the surgeon more workspace and a better view to deal with contingencies. But the recovery is slower since the wound is much bigger. On the other hand his surgeon is much more experienced than the average, so robotic risks may be minimized. Chat with the surgeon about risks going either way.

Finally, the surgery is far enough away that keeping the stress away will be important. Try to get Norb to be in a spot where he is excited about the surgery and what it will do for his future health. It is just so much easier to face a big surgery like this when you are looking forward to it than if you are dreading it. The way to get there is (a) to focus on the fact that the surgery will restore baseline longevity for a long, happy life, while without it the story is not nearly so happy or long; and (b) to be doing things running up to the surgery that have a positive impact on the outcome.

And you, take care of yourself too. This is going to be a big deal for you as well. Be sure the two of you are sharing where you're at. The love of a good woman got me through this a year ago.

Best to you both -- DVB

Hi Norb's Wife,

I had my mitral and tricuspid valves repaired by Dr. Gillinov last October, and I can tell you he is an amazing human being in addition to being an incredible surgeon. You will not find a nicer or more humble man.
I was not a candidate for robotic surgery, but I think I would ask what the fail rate for robotic surgery is compared to mini sternotomy. I have read about a few failed repairs, and they have all been robotic repairs. I have no idea if there is any difference, but it would be worth asking. Another thing I wish I had asked is why my ejection fracture went down 10 percentage points after having surgery. Not a big deal, but I am curious.

As for a place to stay, I would NOT recommend staying at the Guesthouse. We stayed there when I went for a consultation, and it was awful. We stayed at the Intercontinental Suites when I went for surgery, and it was really nice and couldn't have worked out better. It's only a block and half from the hospital, and it's a lot cheaper than the Intercontinentel Hotel. If money is no object, the Intercontinental Hotel is the nicest and most convenient, but it is also expensive. When you make a reservation at any of the hotels, make sure you ask for the patient rate. They will only give you the discount if you stay for a week, but with the pre-op testing, it is most likely you will be there that long.

I would definitely bring a comfy pillow from home. CCF has the worst pillows ever! I was really glad I had brought one with me. The food at CCF is really bad too. For being a first class hospital in every respect, the food is a real disappointment. Not a big deal in the big picture though. You won't be real hungry anyway:)

Hope this helps. Let me know if you have anymore questions. Godspeed and good luck!

Deb Ziegler

Just wanted to drop you a line and tell you of my experience with robotic mitral valve repair. I had it done in Cincinnati on Jan. 17 and just got back from my 1 month visit with my surgeon (Dr. J. Michael Smith). I am completely recovered and was released to do whatever I feel like doing - no restrictions. I am going to post a total update in my journal on this site in the next little while. I will only say if you can do the robotic surgery - do it! I basically never really experienced any pain after day 2 and never felt like I had actually had heart surgery - and I am 62. If you want to contact me to discuss in greater detail, please feel free - just let me know and we can hook up. I would be remiss if I didn't say that it's not just a good doctor and modern technology - God's blessings are all over this!
Dick Miller

You have made an excellent choice in CCF. I had mitral valve repair thee last June. Like Norb, I was asymptomatic but the valve was flailing and it wasn't going to get better. By acting quickly, before symptoms began, there is no permanent damage to my heart and I feel great. I had two days of pre-op testing and qualified for robotic surgery. My surgeon, Thomislav Michjalevic (who has since gone to Abu Dhabi to head CCF's heart program there), told me there was a 95% chance that he could use the robotic approach. With odds like those I didn't ask questions, but I should have. After opening up my femoral artery for the bypass tubing, it was discovered that I had a connective tissue disorder (Barlow's disease) that makes my tissue weak and stretchy. So they had to revert to the sternal approach. If I had seriously considered that possibility, I would have learned more about it and been better prepared. So, my advice is to learn all you can about both approaches so you will be prepared. It doesn't matter if it's only a 5% chance if you are in that 5%. I don't think this happens often but I wish I had been prepared for it. Best of luck to you!
Oh, and the ICU is so noisy you can't get any rest. If you have an ipod or something with earphones, take it along!