Emilyrae,
Tim and I have you in our thoughts and prayers. Everything will be fine! No one on the planet does research like you do and I know that you have looked into everything and everyone involved in your procedures and recovery. They must be the very best for Bill to allow them access to you! Just the same though, we will say extra prayers for you and keep you in our thoughts.

Darlene

Emilyrae,

I do not think I will be able to provide a Chinese meal (home cooked) this time but I will certainly provide prayers: one hour of Eucharistic Adoration, One Mass, and several Rosaries all in your name asking God to watch over you and your surgeons.
God Bless you and be with you throughout this difficult period.

Paul

Emilyrae,

I think if you call the CCF operator and ask for the Medical Conscierge two or three or four days before you leave, that is, when you know when you need to go to the airport..if you ask the Medical Conscierge about CCF complimentary limo service to the Cleveland Airport you won't have to deal with the bus and train. They provided the limo service to me and my wife when I was there in March. I had a number to call for it in the package before I got there and then before leaving called and asked if it was available for leaving and found out it was. What a neat benefit of going to CCF...Barry on the mtn in NM.

My blessings are with you and hope all the procedures go smoothly. You are an inspiration to a lot of people. Thanks for keeping our friendship going even when we don't see each other a lot. You are in good hands from what I can see. Take care and God bless you. Cindi B.

It has come to me again today, (since discovering this site & posting a short history of my Mitral valve problem, which you were kind enough to answer & let me know that you were facing similar surgery on July 12th) -
This date, & its significance for you, has repeatedly arisen in my concious mind with feelings of great confidence & sureity of successful outcome that I felt I should let you know.
I am NOT a particulaly religious person & I cant fathom the reasons that I am having repeated reminders for such strong confidence in your circumstances.

Charlie Browne

Hi Emilyrae,

My experience has been the closer I get to surg the calmer I get. Why not? God's ways are not our ways.

Phil 2:13 "It is God that works in us to will and to do what pleases him". Trusting Him pleases Him. So give up and give in to His workings in You. He will work in You to trust Him continually through this and forever.

Lord Jesus, please continue your work in Emilyrae whereby she may continually deepen in Your peace. For You are our peace. Amen and Amen Eph 2:14

Hi Emilyrae, after your post on my page I became interested in your journey. Lots of valleys and uncertainties. We are human and sometimes we really do get shaken. I have learned that God in me doesn't get shaken. My journey started in 1982, not from the ticker perspective but from another slant.

You see I had a broken heart. God has miraculously done an amazing work in the last almost 30 yrs to heal my broken heart. So when my ticker came on line right on time (congenital bicuspid aorta), I immediately realized that this was a continuation of my "journey of the heart".

He spoke to me early on, three things. You read them on my page. You would also know in the last months He has visited me on three occasions in very powerful and transformational ways. I will pray that He will do the same for you.

Father in Thy mercy please reveal Yourself to Your precious child whenever and where ever and for whatever reason. May she know Your closeness in a way she has not previously known. In the Name of Jesus, Amen and Amen and so it shall be.

Paul

I love reading all the positive commentary! Reassures me about so much, on top of everything you've already shared with me about CC. I'm praying for your experience to be like Barry's...maybe I can even get you out to run in one of our races then ;-). Love you!!!

Gotta call the medical conscierge at CCF for the limo...should be a number in the patient info from CC. BTW SW airlines does not charge a fee to change a reservation. If you need to they credit you for the first ticket and charge the current rate for the new ticket when you purchase the new ticket. ...Barry on the mtn in NM

Hi Emilyrae,

I would think your contact people at CC would be the best sources of this info based on the procedure you will be having. I had planned to stay about a week after my AVR surgery but had surgery on Friday afternoon and flew home Tuesday. For some reason, my surgery was easy for me and recovery was very rapid.

The concierge at CC will also help rearrange plane reservations if you need to be there longer or can go home sooner.

The plane ride home was nothing - mine was about 3 hours also. First of all the people at Cleveland Airport treat you like visiting royalty and you get a wheelchair and can board the plane first. I don't think you will be the first CC heart patient they have seen!

Anne Shannon

Emilyrae,
I did it, flew to Cleveland, for my valve job at CCF in March...piece of cake. We (wife with me) flew from Albuquerque on a Tuesday...CCF medical conscierge provided limo pickup at the airport to take us to the Guest House, and, by the way, provided the limo service to take us back to the Airport...you just gotta ask for it. That Wed I had a bunch of tests and another one or two things Thurs before meeting the Doc Thurs. O-Dark early on Fri March 11th....cold..we trudged on over for the surgery. A shuttle would have picked us up to take us across the street if we had asked. Monday they let me stay for lunch before I was discharged....that was neat cuz I had expected to be discharged Tues at the very earliest. We enjoyed Cleveland the rest of the week and flew out that Fri, the 18th. I was already doing a lot of walking before discharge and did a lot in Cleveland after discharge before leaving. I wasn't supposed to lift much...the limo driver and airport people were super....and our boy, picked us up at the airport when we got back to Albuquerque. Flying there and back for the surgery was a piece of cake. Finding and going to CCF was one of the smartest things I've ever done. I'm in my 12th week post surgery and well into my training for the Marine Corps Marathon on Oct 30th. I completed a Sprint Triathlon in Durango, Co on April 17th and the Albuquerque Run for the Zoo 5 K on May 1st....up to about 30 to 35 miles a week of run training now. CCF made it possible....Barry on the Mtn in NM

praying for you and for Rusty~Love, MM

Love you Mom.

We're rooting for you Mom (and praying)!

Hi I am a Mom of a 18 year old, who will find out June 6, when his surgery will be. Back in 1995 he had to have surgery for a hernia, and even then I insisted that if he had to have a transfusion, (since there was no time for a blood bank, and perhaps he was too little at 3 yrs), that I would volunteer for direct donation blood donor. As I am 0 negative (universal donor) they made a large sticker on his file. He did not need it, but just to let you know that this might be an option for you. Someone whom you can count on that has compatable blood type for you. Hope this helps.

Hi Emilyrae. I am now 4 weeks post mitral valve repair at UCLA. American College of Cardioligists recommends for asymptomatic MVR patients that MV repair be done at a center of excellence (like CC or UCLA). You are wise to pursue options away from community hospitals. Outcomes are simply better at a center of excellence. I got some attitude from my local cardiologist too for looking farther afield but it is smart to stack the odds as much as possible in your favor. Stay the course, you have chosen well. And congratulations for having good health habits, they've made you strong and better able to handle these adversities. -- DVB

Initially neither my PCP nor my cardiologist wanted me to leave Denver to go to CCF for AVR. I went anyway and it was a brilliant choice on my part.

Both doctors in Colorado were astounded by my results -far better than they ever anticipated. Long story short, on my last visit to see the cardiologist, he told me the surgeons he works with are in touch with CC to learn the procedure I had done. I found the care I received when I came home was still good. But then again, I didn't have any complications.

I agree with Barry that local docors want to keep money in the local community. It's a lot about the dollars! I was told I would just be a number if I went to CC. But, as you well know, that number is ONE!

I feel fortunate that my cardiologist was able to admit that he was misguided to think CC was merely a fancy website. The doctors and surgeons there are the best of the best -true innovators who are doing the procedures now that others will be doing ten years down the road.

You might check my journal. I have to post another entry this week. Best of luck in your decision.

Anne Shannon

Emilyrae, To date, I've found the after care from cardiology to be fine, but, I will say before surgery, I was referred to a surgeon in the same practice as the cardiologist, and when the surgeon learned I was already investigating others, to include CC, to do the surgery, you should have heard the "sales" pictch and how he explained no one else anywhere else could do it (mitral valve repair) better than he could and why his way of going though my sternum and being able to hold my heart in his hand to take care of anything that could happen was so much better than a minimally invasive procedure could possibly be, he the guy thas does maybe 70 of these surgeries a year. He had my wife, the retired RN, convinced....geeezzze. The cardiologist ended up basically leaving me to my own resouces to find a surgeon, which, in this case, would lead to a CC outcome, without which I would not have been able to complete a Sprint Triathlon in my 5th week post surgery and now be able to be well into Marathon training, which began roughly 6 or 7 weeks post surgery. CC gets credit that yesterday, I was able to complete the 8 mile training run. The local guys lost a mitral valve surgery to CC and a Da Vinci robot....It could be a coincidence they are now working with another local hospital to do some robotic surgeries, local surgeons getting trained to use a Da Vinci robot. ...Barry on the mtn in NM.

Hi Emilyrae,
I had my aortic valve repaired and had my aneurysm removed with replacement of that part of the aorta on Feb. 28 at the St. Vincent's Heart Center in Indianapolis. I was on the heart lung machine. I did not have to have any transfusions during the surgery. They do an excellent job of saving the blood through the heart lunch machine.
I had a later hospitalization, on March 13, for a bleeding ulcer in my esophagus, which I did not know I had. I did not recognize the signs of blood in my stool, so my hemoglobin was down to just over 4 (dangerously low). I had to have a total of 7 units of blood for that. This was a separate issue from my heart surgery, although the physical stress of surgery, etc. may have caused the ulcer, I was told by my dr. I have not had any ill effects from the blood transfusions.
My surgeon told me that it is very rare to need to give blood transfusions during heart surgery. I wish you all the best in your upcoming surgery. You are in my prayers.
Tia Phillips

Hi Emilyrae!

I had my aortic valve replaced at CCF last May and I didn't have a transfusion. I think transfusions are fairly rare in valve surgery.

You've been to the CCF more than I have so you know how fabulous it is.

Ricki Shine