Laurel's Journal

Ana Brusso  Laurel, so sorry to hear all the issues you are having. I had some of them too, the funny things was that my PCP was the one that helped me heal from them. My cardiologist was MIA and surgeon after surgery was nowhere to be found. I will keep you in my prayers for healing. It will get better. God bless you 

Rose Madura  Laurel, I'm so sorry you are having complications. I had my share so I feel your pain. I'm glad your primary care doctor is helping. Does he/she have a way to get through to the cardiologist for a consultation or to see about helping you get an appointment? Praying you will be better soon.

Pamela Gregory  Laurel, I will send my very best prayers to you for relief and assistance with these complications. I hope you can get to a cardiologist as they will have the best plan for you

Adam Pick  Hi Laurel, I am so sorry to hear about the complications you are having. My thoughts and prayers are with you. Hopefully, you will start feeling better sooner than later.

Miriam St.Clair  Hi Laurel, I'm sorry you're having these difficulties. I noticed that you had your surgery at the Cleveland Clinic as did I. There is a 24/7 on-call nurse line that should be able to help you. The information is on page 33 of your surgery binder. Let me know if you can't find it.

Angela Meletiadis  Laurel, I am praying for a turnaround for you and your health. May God grant you physical and psychological peace. 

Susan Eckermann  Laurel, I am so sorry you're facing these challenges. Persistence seems to be key in getting input from cardiologists and surgeons, post-op. My thoughts and prayers are with you. May you have consistent improvement, peace and strength in the upcoming days.

Laurel Howard-Boardman  I had planned on long distance and in person care from the Cleveland Clinic. However, since hospitalization was needed almost immediately after I got home I have decided to do my follow care locally. The CC surgical team was notified of the foregoing but I have heard nothing from them addressing the post CC release issues, only confirmations of future appts with a cardiologist and test results. Most recently, I received a My Chart message from the nurse line that I can get follow care where I choose. 

Rhodie Jacobson  I am so sorry to hear that you are not getting attentive care. It is a tough time to build a system of care and I pray that you can build the team around you that you need. God Bless You!

Diane Pellowe  I don’t have a recommendation in Appleton, but the cardiologists at UW Madison are top notch.  How is your recovery going?

Pamela Gregory  I hope you are settled in your Cleveland home away from home for a while! I am still in the Cleveland Clinic for a small complication. Was supposed to go home today. I doubt I will see you in person but I will definitely be saying lots of positive prayers for you in the next week. You picked the best place and they will take the best care of you. You will do great! Good Luck

Pamela Gregory  I also wanted to add that while yes it is inconvenient to have this surgery out of town, knowing that you are at one of the best heart hospitals in the world (if not the best) is invaluable! This is your one life and you want it with the best on November 1st

Laurel Howard-Boardman  Thank you Susan. I learned this afternoon that the anticipated minimally invasive surgery will now be open heart surgery with split sternum. Totally unexpected. I have some small calcifications on my aorta and the use of a heart-lung machine reverses the blood flow direction, increasing the chance of a stroke. Late notice but it seems too late for mitral clip consideration within the random clinical trial. I report at 5 am tomorrow.

Adam Pick  Thanks so much for these very kind words Laurel! You, Rose and Klara just made my day!!! If you ever need anything, please let me know. I'm here to help!

Adam Pick  Sounds like a great plan! Take comfort knowing you took the time to research your disease, your treatment options, your surgeon and your hospital. Dr. Gillinov has helped many patients in our community. If you have not seen it yet, here are 84 patient testimonials from had excellent results with Dr. Gillinov.

https://www.heart-valve-surgery.com/surgeons/dr-Marc-Gillinov-Cleveland-Ohio.php

Kristian M.  Laurel, I am currently at a hotel right across from the Cleveland Clinic, same situation here for follow up appoints...the 3 hotels inside and surrounding hotels will provide discounted rates for patients so look into that. I had a discounted rate becuase of my job so not sure how much the patient rate is...I am more than happy to ask and give you an update on it if you like?...you can also look into Airbnbs near by they may be cheaper options. 

Pamela Gregory  I am having AVR at Cleveland Clinic October 17th.  Had several appt.s there over the last year. We stayed at the Holiday Inn. Very convenient (only about 3 blocks away) and they give a discount for patients. They also have a complimentary shuttle that goes back and forth frequently. There is a nicer hotel 2 blocks away if you prefer.

George Gardopee  Laurel- we went the AirBnB route in Cleveland last fall. It would likely be less convenient for location but considerably less expensive. We stayed in the Cleveland Heights area for 9 nights. The total was about $1100 for three of us. The location was excellent for restaurants (within walking distance) but was a 10 minute drive to the CC.

Laurel Howard-Boardman  Kristian, thank you for the suggestions. I may be on my own for much or all of the time with no car and driving restrictions anyway. It's hard to tell how far away from the buildings I will have to go to are from the hotels and long walks aren't in the cards. I will call the CC concierge tomorrow morning. Do they have shuttles on the grounds?

Laurel Howard-Boardman  Mohammed, Dr. Gollinov's assistant didn't call it a repair but replacement was not mentioned. She did mention that a ring is often used in the process. If possible, robotic surgery will be done through the side. Open chest will only be used if I'm not a candidate for a robotic procedure. After pre-op testing, I will meet with the surgeon on Oct 31.

Laurel Howard-Boardman  George, glad that worked out for you. The car and support system offers more options. I'm looking at 13 - 14 days this trip. $$$$

Kristian M.  Laurel, yes there are shuttles from the hotels and surrounding hotels. I am at a Marriott across from the CC and its literally a 10 min walk (I actually timed it), its not a bad walk but there is also a shuttle that can take you as well. Hope this helps.

Laurel Howard-Boardman  Thank you Kristian. Trying to decide to book through Priceline or VRBO and save money, the ability to make changes, if necessary, through the Cleveland Clinic's Am Ex travel agency, made me opt for that. I will be staying on grounds at the Holliday Inn.

LAURA DAVIS  Dr Gillinov repaired both my mitral and tricuspid valves one year ago. (8/11/2021). I'm from Cleveland but live in Virginia now. My cardiologist here recommend I go to him for my surgery. Once all of my records were sent to Christine and he reviewed them, I was put on the schedule for about 2 months from the date. He's very busy, but one of the best in the business. He and his team were GREAT!

Laurel Howard-Boardman  Good to hear of your fine surgery results Laura!  Thank you all for the reassurance and encouragement. My PCP's office RN has assured me that she is forwarding the required test results, films, and other requested information to Christine.  So glad I found this incredible informational site and the wonderful people who are excellent sources of information and who support one another through difficult times. 

Rose Madura  Laurel, either of those choices would be excellent. I'm sure those who had them do their surgery will chime in to sing praises.

Neal Syverson  I had mitral valve repair with Dr Burns at Cleveland Clinic and had an excellent experience. I have met a few people who have used Gillinov and had great things to say about him.  I don't have experience with Gillinov but I can say the entire CC staff were great.

George Gardopee  Like Neal, I had mitral valve repair (and tricuspid repair) at the Cleveland Clinic last November. In my case the surgery was performed by Dr. Gillinov.  The outcome of my surgery was excellent and the care was outstanding (I detailed the experience in my journal).  I had no pain, relatively little discomfort, and a very quick recovery.  I had to have a sternotomy due to calcifications in my aorta that precluded robotic surgery.  I can recommend Dr. Gillinov and the CC without hesitation. Feel free to ask anything - there are a number of people in our community here who can answer your questions.

Janelle Hurst  I absolutely loved Dr. Gerdisch and the care I received at Franciscan Health was awesome.  We stayed at a hotel a mile down the road that had full kitchenettes, was reasonably priced, clean, and felt like a little mini apartment.  My consult with Dr. Gillinov's office was quicker but his recommendations for surgery were delivered through his nurse practitioner and he wanted to do a sternotomy - I know that he is a very skilled surgeon, but for me I needed to actually meet the surgeon before knowing that he was "the one".  Dr. Gerdisch was able to do minimally invasive surgery and I was able to have a video consult with him (it took a couple months to get appt), but his office staff is awesome.  Both of those surgeons are very skilled, so you'd be in great hands with either!  
A little background on my timeline, I found out Sept 20 last year that I needed surgery, started doing lots of research, had video consult with Dr. Gerdisch Dec. 2, and then had surgery Feb. 11.  

Miriam St.Clair  I don't know if you looked at the Society of Thoracic Surgeons Public Database on heart surgery quality but it helped me greatly in my search for a hospital and surgeon: https://www.sts.org/registries/sts-national-database

Susan Lynn  Laurel - Welcome to the site. You may want to call the insurance carrier to see the cardio thoracic surgeons who are participating in your plan. From there, you will want to identify those who do a large volume of mitral valve repairs with a high degree of success. You may need to travel a little further than you anticipated, but a good surgeon, team, and facility are well worth the trip! Best of luck with your research!

Deena Z  Hi Laurel, there is so much to learn when you are initially diagnosed. You must feel overwhelmed. As Lynn suggested, once you know what surgeons your insurance program covers, then you can compare it to the list of surgeons from Wisconsin (or other states) that patients have mentioned on this website.

To get this list, type: "Wisconsin surgeons" in the "Search for" area on the top of the HeartValveSurgery web page. (I tried to cut and paste the link, but to no avail.) Hang in there!

Linda Johnson  Laurel, if your insurance allows you to receive care outside of Wisconsin there are 3 top Heart Valve Centers that have excellent outcomes near you, ie Mayo in Rochester, Minn, Cleveland Clinic, and Northwestern in Chicago.

Rose Madura  Hi Laurel, It's definitely worth the research and a 2md opinion is never out of the question.   I was going to make the same suggestions Linda did.  Also, call your insurance company.  You have to be an advocate for your own self.  Best wishes and please keep us updated.  We care!

Timothy Williams  Univ of Michigan in Ann Arbor is very good as well.  I had my mitral valve repaired there in March and am doing excellent.  It can be difficult to sort through insurance coverage and institutions, but very worth the effort to find a high caliber, high volume team who focuses on these procedures.  Stay strong and be your best advocate!

Janelle Hurst  I traveled from FL to have my mitral valve repair with Dr. Gerdisch at Franciscan Health in Indianapolis, IN in Feb of this year.  I have no regrets!  Dr. Gerdisch really cares about his patients, and I was so impressed with the hospital staff and experience.  You can request a video consult with Dr. Gerdisch through this site.  Do some research, find someone that you feel comfortable with. 

Laurel Howard-Boardman  All good suggestions. MY policy is a Fed employee/retiree plan that is basically an HMO, Health Partners FEHB. It acts like a supplement to original Medicare but will only pay toward participants in its Network. I will have to find out if I could go out of state to a covered facility. 
I believe this surgery must be $100,000 - $200,000 dollar range (let me know if you know). If I were to use just Medicare, Part A &/or B, my co-pay would be huge.  

Laurel Howard-Boardman  My contact at the insurance company provided the names of 3 health organizations with cariology depts in the Appleton, WI vicinity without specifics. they are Bellin in Green Bay, Aurora, around the state, and Holy something Heart and Vascular in Manitowoc, WI (a small town). 
I do see doctors at Froedtert Hospital in Milwaukee and they offer extensive  cardiology services.  

Timothy Williams  The surgery cost is a drawn out affair with testing before and after.  Surgery was about $120k and I had another $20k in tests before and after.  That includes amounts actually paid be either me or my insurance.  I was in hospital 3 nights for surgery and had no complications after.