Peter 's Journal

Quick Update. I have not been posting much because I have had no updates. But I watch this board always and am with everyone dealing with OHS related challenges. There are many inspiring stories here.
Today I went to Mass General and got another contrast dye CT scan on my Thoracic Aortic Aneurysm. I am delighted to report that nothing has changed and I am stable at 4.6 cm. I had a few anxious days in advance of this.
My next appointment is in one year. If that one also shows no change we may go to a 1.5 or 2 year scan cycle. BP is under control and was 115/70 during the visit, which is about normal for me these days.
I hope everyone is doing well.

Greetings all:

Today I went to Mass General in Boston and met with Dr Eric Isselbacher, Director, Healthcare Transformation Lab and Co-Director Thoracic Center, for my third and final opinion on my Ascending Thoracic Aortic Aneurysm.  Most people here have heart valve specific challenges and I realize that my condition is lightly beyond the norm here - but they are closely related. My wife and I met with Dr Isselbacher for 2 hours discussing my specific situation, prognosis, and treatment options.  Currently my diameter is 4.6cm.  Under normal circumstances (i.e. no familial considerations) he would recommend surgery at 5.0-5.5cm.  In my case, given some family history, etc., my intervention target is a diameter of 4.9cm.  This is the point where he feels the risk of the condition outweighs the risk of surgery.  Since the average growth rate of this condition is 0.25cm/year, Dr I suggests we monitor approach in the short term.  Dr I said that zero growth is unrealistic but the rate of growth is uncertain.  We will be re-doing my tests in November 2021. If those tests in November show minimal or low growth rate, the next test will be in November 2022. 

I asked all the right questions and I think it’s fair to say that I have a reprieve.   If surgery is indicated in the future, Valve Sparing Aortic Root Reconstruction (VSARR) will be recommended.   There are three surgeons at MGH who specialize in this procedure.  Well over 300 such procedures are done at MGH annually.   We also discussed why MGH vs other nationally recognized heart centers.  As a result I have full confidence in this heart center. 

So, now what?  First - my family (two sons, sister) should be assessed for this condition.  Dr I even printed out some letters for them.  Second - he wants me to go on a Statin (will begin tomorrow) and possibly a beta blocker depending on my at home BP readings over the next 3-4 weeks.  Third - no weight lifting beyond any intensity I can “talk through”, and no Marathons.  5K’s and 10K’s are ok to run. 

And fourth – live!  May 2021 has brought me face to face with my own mortality. I have always been pessimistic about my life expectancy and health overall but this heart/aorta condition has taken my pessimism to a new level.  I was very frightened.  My perception of just about everything has been altered.  As I read or interact with people here, and other places, I see things in a very different light.  I am more in the present than I have been since a young child.  The drive to “do, accomplish, achieve” has gone to almost nil.  Instead the drive to be present with people and appreciate experiences has become the priority.  I want to experience as much as I can, now.  I am spending lot more time with family, friends, and acquaintances from all walks of life.  I am doing this proactively and with full intention.   I have decided to treat with MGH on an on-going basis.  That means regular visits.  Regular visits represent a reminder of the risk I face.  I see that as a very good thing.

I am not leaving this site.  Today was not a cure or full resolution.  It was a reprieve from short term anxiety and a message of perspective.  I recognize and appreciate it for what it is. 

- Peter

Greetings OHS Extended Family. In the past month or so since I have become part of this community I have met a lot of great people who either have had procedures or are facing procedures. While all of us are not inexactly the same situation, the general principle is similar and the anxiety seems to be a consistent theme, especially amongst those of us facing procedures. I am deeply appreciative of this community (and others) and simply want to wish everyone a PEACEFUL, HAPPY, and SAFE upcoming long Holiday weekend. I am fairly desperate to detach from the anxiety and stress and am going to give it a shot. - Peter

Greetings all. I hope everyone is well. I think about everyone who is having a procedure as listed in the upcoming surgery feed. As I process all of this I find some questions that I can't find answers to, maybe there are no clear answers.

1.) I have read frequent post op experiences describing profound fatigue, post op depression, lack of energy, and total exhaustion. Why does it happen? Do Lungs get damaged on pump? How is this treated other than walking? I can’t quite figure out the cause and effect.

2.) I have not read many people factoring in ASI (Aortic Size index) when dealing with enlarged aorta's. This looks at relative aortic aneurysm size in relation to body surface area. (https://www.medscape.com/answers/424904-68904/when-are-thoracic-aortic-aneurysm-taa-at-increased-risk-for-rupture) My ASI is 1.9. I have been running and weight lifting most of my life. Could my Aorta just be larger? And of less risk?

I will be asking these questions, and others, at my third opinion later in July but in the meantime thought I would post here as well.

Greetings all. I have read many OHS stories on this site and have noticed that a decent percentage of you have traveled to get your procedure done, in some cases overnight travel, and in some cases by plane. In these cases I assume that you stay local (in a hotel?) for a week or so after release. But what about a complication once you do get back home, do you then rely on a local hospital? Is the local medical provider pre-arranged or coordinated? Plus, the entire notion of significant travel after OHS seems daunting! Thanks for any insights - Peter

I have been on here for about a day and I already feel like I have a new extended family to travel with, and to have join me on my medical journey. I was commenting to my wife about this yesterday. I feel far less alone and slightly less anxious. I will be here to support and seek support for quite awhile. Thank you all!

When I consider the future, my single greatest fear is post-op pain. Will I wake up in agony? Will pain be well managed as I need it? I know everyone is different but I have read a remarkably wide spectrum of post op experiences.

Greetings, how does one best deal with the terrible anxiety associated with learning that OHS is likely in the future? I am struggling mightily with this and appreciate any advice