Tricuspid Valve failure update
Monday the Edwards folks did an extensive set of research imaging on my heart valve and have been reviewing the images to determine what can be done.
I just got a call from Dr. Lazkani and here is the findings after his call with the Edwards doctors this afternoon:
• I have a bicuspid valve (two leaf) for my Tricuspid heart valve
• I have likely had regurgitation from it my whole life, accounting for my issues with heavy cardio workouts, such as running, when I was in the Air Force. My first echocardiogram from 2010 shows the Tricuspid valve with significant regurgitation. Due to the historical challenge of working with the Tricuspid valve, I have learned doctors try to ignore it until it becomes a serious problem, which mine now is.
• When my aortic valve failed in 2017 and I had the David Procedure to repair the outbound left side of the heart, it appears, from looking at the old images and the current images, the “strings” inside the heart that connect to the leaf’s of the valve and allow them to work, got stretched on one of the leaflets. So one leaflet works normal and the other is “floppy”. It is that floppy behavior which has led to an increased opening when it is supposed to be closed.
• When the Edwards team reviewed the options for attachment of a clip type device to affect the opening size, they determined the floppy leaflet was going to cause a high likely hood of detachment. Due to the structure of my heart, there is no recovery path if that happens and no surgical path that I am likely to live through. Therefore, there are no current solutions that will enable my heart to be repaired and returned to any type of normal activity. Edwards determined the risk to be too high.
The only thing that can be offered at this time, according to the top heart valve experts in the world that work for Edwards, is to address the symptoms with medication and oxygen. I had to increase the supplemental oxygen to 4 liters Tuesday evening as I was not doing well with the 2 liter flow.
The Edwards team has a new solution that is not yet been approved to deploy that allows the replacement of the Tricuspid valve with a new valve using the through the groin vein heart catheterization process. The doctors believe, based on the research images they have currently, this solution would work for me as it would take the place of the current valve, thus avoiding the bicuspid and floppy valve problem. Since it would be done through the catheterization process, I would avoid the high risk approach of surgery also. The problem is this will be 3-6 months out. Dr. Lazkani believes I can survive with the current failure and close monitoring of the medications and wait out the time.
That is my situation. I will be having a discussion with my regular doctors but do not expect any different outcome than what is summarized above.
Not my preferred place to be but it is the reality of my current world.
Tricuspid Valve journey update. My attempt to get into the Edwards PASCAL clinical trial for Tricuspid valve regurgitation was not successful. Apparently the Edwards folks, who have been working with heart valves since 1958, have never encountered my problem with the Tricuspid valve before. They described it as "rare". The good news is they passed my case up the chain and determined they would do further research on me and felt there was a 99% chance they could come up with a solution. Monday I had an extensive, research level, set of TTE and TEE echo cardiogram images done. The Edwards team is now doing an evaluation of the specific structure to see how they can develop a solution to provide me a more normal life. Sunday evening I was digging out my old TTE results. Did my first one in 2010 with the aortic valve and rising aorta normal yet. In that, now that I know what I am reading, my Tricuspid valve was already a problem, just not as severe. Given it appears to be a Biscuspid type valve, that would make complete sense and explains why I struggled so much to always meet the Air Force 1.5 mile qualification run each year. By definition, with that valve problem, intensive cardio activity would always be a struggle and it was.
I am currently using 4 liters of oxygen and have a blood oxygen level of 93 with no activity. Definitely getting worse and, without a solution, this is a hospice direction as I currently am barely able to do basics like shower and limited mobility. I am supposed to hear back by the end of this week and, if they confirm they have a solution, should have the procedure around September 22. Hoping for a good response this week!!
I received shocking news Monday afternoon related to the national review level by the Edwards team as they reviewed my images to get into the PASCAL Tricuspid Clip clinical trial. There is a reason the Tricuspid valve is the least studied. It is very hard to interpret the images since you are dealing with a valve deep in the heart. The doctors at the national level reviewed my images and determined I have a very rare condition. My Tricuspid valve is not Tricuspid! It is a true Bicuspid valve, which creates a whole new set of problems and challenges to do anything with. Apparently if you search on here, as well as do a general Google search, you get ZERO hits for a Bicuspid Tricuspid valve. Everything returned is talking about a Bicuspid Aortic valve. All the same issues, only not so accessible. My aortic valve was tricuspid so did not have that issue.
The doctor team at Edwards is reviewing my case and my local doctor is hoping to get some recommendations back by the end of this week. I also reached out to the surgeon who did my David Procedure back on 12 June 2017. He moved back to New York shortly after my surgery but he has been inside and worked on me. Will see if Dr. Jason S, Sperling has any additional suggestions.
This caught both myself and all my local doctors by surprise. If anyone has experience dealing with a true Bicuspid Tricuspid valve, I would appreciate getting some additional insight. Based on everything I had read in clinical trials on the aortic valve Bicuspid, this is a serious issue I am facing.
I had a David Procedure on 12 June 2017 to repair the aortic valve, aortic base and replace the rising aorta due to distension. Apparently I had some geometry changes in the heart that has led to my Tricuspid valve failing this year. It started regurgitation after the June 2017 surgery but has now reached the point where the leaflets are almost 10 mm apart when closed, not a good thing!! Thursday, August 27, I am being submitted for national review and approval to join the Edwards PASCAL CLASP II TR Clinical Research Trial to do a repair of valve and restore more normal functionality. The procedure will be done in September if approved. The Abbot Vascular Clip clinical trial review process had an initial screening date at the end of September and waiting is not a good option for me. Hope to have updates with great news in the near future! This is happening because I was very proactive in seeking treatment during the COVID-19 shutdowns. You need to be aggressive to get the healthcare needed during this very difficult time.
I did a search for Dr. Jason Sperling on this site and he is still shown as being in New Jersey. He recently moved to Colorado to head up Cardiac Surgery for Health One. Really grateful for that move! Here is the Health One web site where Dr. Sperling talks about the procedure and a link to actually watch the procedure being performed. http://healthonecares.com/service/david-procedure