God puts people in our lives at certain times for certain reasons. In my case, my third opinion was God sent.
I had already come to terms with open heart surgery and was resigned to the fact that I would be on the table on 4/26. The fact of open heart surgery was a forgone conclusion as explained to me by my surgeon. Now or in the very near future it would be necessary.
My second opinion differed. Yes, you have a slightly enlarged left ventricle but you clearly have a moderate regurgitation condition level not a moderate/severe or a sever condition. He suggested a third opinion.
SInce my postings a month ago, dear family friends had called and said they have a cousin in the U of M system that is well regarded and would put me in touch with another mitral valve specialist. That contact brought me to my third opinion which I received on Monday.
I had not pursued it yet since I had already decided that there was enough information out there from experts suggesting that my heart would improve with surgery.
I went to third opinion mainly because my gut was telling me that I need more people looking at my results. I had developed a spreadsheet over the past couple weeks and looked at the half dozen tests and categorically listed them one by one looking for trends and trying my best to understand each one.
I could never get past the fact why do I need surgery if I only have moderate regurgitation?? The two indices that were pointing to perform surgery now were the elevated level of pressure in my right atrium and my slightly enlarged left ventricle.
Long story short, Dr. Bach (3rd opinion) looked at all my echoes and reports and compared each one to the other and went as far as calling the technician who wrote the last TEE results to better understand why certain things were written down. What he found was that there was a probable mistake made on my latest stress echo report. This was corroborated.
There was no elevated levels on my right side as suggested by my latest stress echo report. My second opinion couldn't find it either. I asked how could this be? His reply was that people make mistakes.
Canceling my surgery is based on facts and data that is corroborated by two different institutions. Each a specialist in this field that have been studying mitral valve for decades.
I was not seeking out an opinion to just get out of surgery. In fact, I was resigned to surgery. I simply was looking for people to look at my results and explain to me in details that are specific to my case why surgery was the best option.
I found that in my third opinion.
I may still need to have surgery at some point but we are going to wait and see. I have a follow up on 8/20/13 with Dr. Bach.
I may simply have been born with a slightly enlarged ventricle as explained by Dr. Bach. The level of regurgitation has never exceeded moderate and the conditions that were initially prescribed as reasons to proceed with surgery were debunked; at least by 2 of 3 people.
Even if I move forward with surgery in one year or five years at least I can move forward with confidence that I have a lot of eye balls on my reports right now, a lot of people interested in my condition, and a lot of smart individuals that are doing their homework that will prescribe based on data that can be corroborated.
I have had so many people praying for me I can't thank you enough. God has led me down the path of information gathering. Putting me in front of those that did their homework and prescribed based on the necessary data to support their decisions. The Holy Spirit was very involved. (Read The Forgotten God by Frances Chan)
On a side note, my Dad as an enlarged aorta. They have been monitoring him every six months for some time. It has yet to change in size.
For those of you that read this that are on your own heart valve journey. Do your homework. Be your biggest advocate. If you are going to go through surgery know the data. It is hard work and depressing at times but it may save you a surgery or at least postpone it until it is necessary.
Thank you everyone for the kind notes of encouragement. I wanted to give you an update of the activity from last week.
I sought out my second opinion from St. Joe's in Ann Arbor. Dr. Kong was very gracious with his time and spent two hours with Mary and I answering questions and going over my reports from the last year with one of his cardiologists
His recommendation was that surgery was not needed at this point in time.
With out going into all of the details of my condition he did corroborate that my heart is weakened from either a past viral infection that attacked the valve or a hereditary cause. Nothing to be be imminently concerned over but a condition that needs to be monitored.
He commented that my condition is a complicated one. I am a borderline case that more aggressive surgeons would advocate for surgery and others would not.
I have a scheduled TEE (transesophageal)on 4/8/13 at U of M and my surgeon Dr. Bolling. I am planning on proceeding with this and reviewing my current status with him.
i will be taking these results to a 3rd opinion, unless my condition has clearly worsened, to the Mayo clinic to a surgeon and cardiologist that Dr. Kong has highly recommended.
I shared this opinion with Dr. Bolling's office and they were very receptive and agreed that the TEE will offer more evidence.
Clearly this has been a good example of advocating for yourself and not taking the first opinion as the only choice.
Not to say that my condition will not require surgery it very well may. It just may or may not be this April 26th.
Thank you again for your continued thoughts and prayers.
I am scheduled for my 2nd opinion with Dr. Kong at St. Joes in Ann Arbor. I have a scheduled surgery with Dr. Bolling on 4/26/13 out of U of M.
I was first diagnosed with mitral valve regurgitation last spring. I had a heart cath and TEE and everyone decided to hold off another 6 months. Well six months later here I am and now the recommendation is surgery to repair the leaflets.
Needless to say I am disappointed.
I should be energized that I can have this condition fixed with only a repair but for right now the glass is half empty not full. I am sure I will see the silver lining soon enough.
When I was first diagnosed and told I needed open heart surgery it really put me in a tail spin. I am slowly coming to grips with everything and quite frankly feel pretty good that there is no replacement needed.
At 39 years of age I am looking for every advantage to live 40 more.