Marie's Journal

First thank you all so much for the prayers and concern.
I'm here at Mayo in MN. It is the most amazing medical complex I have seen. The level of precision and care was inspiring.

Yesterday I had the most comprehensive and impressive echocardiogram of my life, and I have been having them for over 20 years. It took an hour and a half and many images, and was done by not just a tech but also a cardiac intensivist, and another MD was next door, also reviewing the films and consulting with the intensivist. I also had other tests as expected.

Today I saw a cardiologist and the top cardiothoracic surgeon here. They were delightfully kind people. ( I can't believe I'm saying that about doctors.)The Mayo echo, blood work, and all other tests here confirmed one another. Much different results were found than my LV cardiology tests, and some different results than Cleveland. All were reviewed and compared side by side. Differences between the 3, and the trending of the numbers and previous tests were all done.

I do need valve surgery, and it will need to be full valve
replacement, possibly 2 valves, and not repair because of the type of leak...someday, but not yet. It might be a year from now, or 10 years, but now is not the time.

Had I stayed in Cleveland, and had the original surgery, or accepted their substitute surgeon, or proceeded with treatment in Las Vegas based on the test results there, I would be recovering now from needless open heart surgery.

These were gentle and knowledgeable clinicians, who took time to review, explain, and answer every question - who really want to help people and actually live by the Hippocratic oath rather than the almighty dollar they get from cutting. They don't cut needlessly.

For now, You may think that I am crazy and might be right. but we trust this, (and I never trust doctors) and I am more grateful to God than I can say.

Why we had to go through all this, and take you along for the ride, I do not know. Someday He will tell us.

Isaiah 55:8-9 ESV

For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.

For those of you having surgery on Monday and Tuesday: may God keep you in perfect peace, guide each surgeon's hands and thinking, and bless the patient and the entire care team. I pray for a quick and complete recovery, an excellent inpatient experience, and a happy and fulfilling life for each of you:
Jerry Grimes
Nancy Schnarr
Robert D'Aurora
Corey Sines

We are with you!

Well Dr Gillinov is going on vacation tomorrow and I no longer have a surgery date, a surgeon. Or a hospital. He has decided that "trust has been compromised" and if I am lucky he will suggest another surgeon, possibly NOT at Cleveland clinic. All this because my poor frustrated husband had words with a mean and haughty member of Gillinovs staff. I am signing off to cry myself to sleep in a crappy extended stay hotel with a lousy bed, after sending an email plea to the CC ombudsman.

Almost ready to go! Leaving for the hospital in about an hour. I will talk to you all later. We got this heart brothers and sisters with Gods help and great medical teams.

http://www.cnn.com/2016/10/14/health/cdc-warns-heart-surgery-patients/index.html

This is on CNN today. Might be worth a question to the surgeon...

Thinking of you today: Regan Phyllis, Wood, Ines, Stephanie. Godspeed.

I read on some site that wires can be used as part of the closure for the open sternotomy, which I am having. They also said those will set off alarms in the airport. I had figured that anything like that would be out before flying. Is that old information? I've also heard NOT TO TELL THE AIRLINES that you just had surgery, as they may refuse to let you fly. Just get a wheel chair. I'm traveling from Las Vegas NV to Cleveland OH and I know a lot of you also travel. Can anyone reassure me on these points?

Dr Gillinov at Cleveland Clinic will be doing my surgery. I'm working hard at trying to stay positive, and an early step toward that were to buy Heart 411, the book he co-wrote. It was no surprise that the recommended diet in Dr. G's book is Mediterranean. Even though my valve problem is genetic, I struggle with obesity. At 5'4" and 270 lbs I've tried everything, even gastric banding. But I want to move forward and keep trying. I like many of the foods on this diet and want to make it a way of life. But the number of diet and cookbooks on the subject is enormous, and for once, I don't know who the real experts are. Who can recommend diet and cookbooks for Mediterranean? I love to cook. My husband is all meat, potatoes and junk food with a horror of whole grains and vegetables, so I will need to both encourage him to join me, and be prepared to eat differently from him. (I already got all the free Med Diet ebooks from Barnes and Noble downloaded, smile.)

Words of wisdom from my wonderful husband - don't waste time and energy beating yourselves up! I have a tendency in that direction and although my problem is congenital, it is easy to get down on myself for lifestyle choices. But we cannot change the past; lets go forward, heart brothers and sisters, with a positive outlook and know that God is on our side. After all, we have limited energy as it is! Let's not waste it smacking ourselves around. Bless your hearts and have a great weekend.

I am 60 years old, born with congenital valve problems. I have leaking aortic and mitral valves. As a child no action was taken, although almost every new MD commented on the dual sounds. In my 30s, I got a baseline echo. Still no big deal. Then in my 40s I began to have annual echoes, (did you have rheumatic fever? No, tech asking inappropriate questions and scaring me, I did not.) and the leaks were a bit worse. The leaks progressed, but not much over time. I was told I had a 50-50 chance at needing surgery one day. The echoes were just something I needed to do. Then suddenly this year, the annual ho-hum took a new turn. the mitral leak went from moderate to severe, the aortic mild to moderate. Had a TEE to be sure. Severe mitral with prolapse. Time to act.
The month waiting to hear back with a surgery date seemed like 10 years. Then I heard back from 2 places within 24 hours. On Friday 9/9/16, I booked my surgery with the Cleveland clinic in Ohio for 10/19/16. Privileged to be having Dr Marc Gillinov to do my procedure. He was my first choice based on my research (I research the heck out of everything.) And no, I did not know when I sent my records to his office that he was famous for doing Robin Williams's valve surgery, I found that out later in my research. I had a full right side nephrectomy in February 2015 due to a very large Angiomyolipoma. The Cleveland clinic/Glickman Kidney institute was my choice for that surgery too. Fortunately, they have an office and a wonderful surgeon here in Las Vegas, Dr Slavis. It was done robotically with minimal down time. This time, no daVinci robots - must have the open sternotomy procedure.
Dr. Gillinov feels that there is too much calcification on the mitral valve to do repair, and that they will most likely need to replace the aortic valve then too. I got an identical diagnosis and recommended treatment from my second opinion. Very blessed to be going to Cleveland Clinic, and to have supportive husband, family and friends. I have a new peace in my heart despite all the upheaval in my life that this has brought. That is purely the grace of God.