Jim's Heart Valve Journal

The only thing that is constant is change!

August 16, 2011

Hi All

Well, I thought I was on my way to the surgery being a fading, distant memory. It seems a twist has come in the road.

After feeling that it was odd for the "snap, crackle, pop" of cartilage popping to be continuing, I posed the question to JBT. After but a few minutes of delay to my text describing the phenomenon , and asking "Normal?", i got the reply. "No. Call my office to see someone"

After 10 days of waiting for the insurance company to approve the CT scan of my chest, I had it done last week thursday. Friday I got the call from JBT.."What have you been doing???" It seems that I have a 1/4" separation in my sternum at some point along the cut line, and that I am experiencing a "pinch" of sorts in my left chest area that is likely from a stainless wire used to pull it all back together.

Good news is that "it should heal", bad news is that we will verify with another ct scan in 6 months, and I am not supposed to use my arms for anything strenuous in the interim.

Now I suppose that wouldnt be too formidable if it werent for my right hip finally failing. Today, my right hip replacement surgery was scheduled for Aug 30. So with that event, it will be 3 surgeries in 9+/- months, with one good leg left and no arms to use through the recovery. Frankly, given the hip pain and the near term probability that it will be gone, I can find a way to get through it.

Nonetheless, I am still one of the luckiest people I know, and am thankful we live in a time that these miraculous procedures and devices and medical professionals are available to enable a long and productive life!

I would be interested in hearing from other post-op patients experiencing similar healing issues, and to learn of how you have handled/facilitated the healing process.

Jim

Something I neglected to post

July 24, 2011

I had been asked to participate in a video interview for the Catholic Health System annual meeting here in Buffalo. Reading Marci's posting reminded me to share it.

http://www.chsbuffalo.org/PatientStories/JimCornell

Thanks All. Hope to see many of you this coming saturday at our annual summerfest. invitations went by email to all that were subscribed here. For Mercy/CHS folks, I forwarded the invite thru CJ and others, hopefully it made its way around!
Jim

6 months from discovery to recovery - released back to life

July 24, 2011

Hi All,

I wanted to share what is likely my last update for some time, and once again extend my thanks for your collective support.

Going through this process since my 1st visit to the cardiologist in early January 2011 has been a humbling yet invigorating experience. The people along the way have been extraordinary, and the discovery of the extent of the talents available to us here in Western New York has been nothing less than astonishing!

Reflecting on my personal experience, and on the experiences shared by others who have ventured down the same path, I offer a few observations.

Be your own, actively involved health care advocate. Your primary physician may be well intentioned, yet despite your relationship with them, its not their life or their body. We want them to be the quarterback of our health care team but i think it is often true that they occupy the role of trail guide, handing you a map (referral) and an encouraging wave sending you on your way. Someone needs to be in charge, and my experience is that it must be you. Dont shy away from the responsibility or the experience, because even if you are not well versed at the start, you will become so as your journey evolves.

Listen to everyone that cares enough to share their ideas on what may be the best direction for you. After you have done so, and after you have thoroughly researched the options open to you (venue, surgeon, after care, etc), make the decision that feels best FOR YOU. Thank all that offered their opinion, but reserve the right to make the decision that in your circumstance and soul fits the best. This is your life and for this one time, it has to be all about you.

Be cautious about returning to work/full activity too soon. In my case, I jumped back in at the earliest moment I could as I was fearful that feeling disconnected would lead to a bout of cardiac depression that I just dreaded. I did push too hard, and battled fatigue - a continuing albeit fading issue. Listen to your body, give it the rest it needs to heal.

Accept that there will come a moment where you will feel that the surgery was a real game changer for you. Even with the wonderful benefits of a well functioning heart, there still come the moments of regret for not having done something about it earlier or simply being unaware (or kidding yourself into believing you were ). I have been counseled that cardiac depression has its root in the physiological stresses and changes of the process. I thought that once I distanced myself from the surgery a few months, that the likelihood of it occuring to me wained. I was wrong. In the face of all of the benefits of the aortic valve replacement, I have found myself tugged by the conundrum of leaving my life as it was behind and beginning anew, accepting that my new lease on life is only as good as what I do with it, and feeling far more mortal than I had ever admitted to myself. Having this feeling that I am starting over at 55 is scarey, and the looming right hip replacement only exarcerbates the sense. For the first time in my memory, I have found it difficult to keep focused on completing extended tasks that require - for me - emotional and mental energy and balance. Notably, writing assignments have been principal victims - a significant challenge given the nature of my work. Nonetheless, I know that this is not a permanent state of mind, that I will sort it through and get to the other side of it, and that help is there if I come to believe I need it. The caution is to be mindful that when going through something like AVR, there are three dimensions of healing - Physical, Emotional and Mental. Prepare for each as well the other and in due time you will emerge stronger, healthier and with clarity of purpose. Dont be shy about asking for help.

Lastly, I urge you to share. Share your story with others on the same path. Share your feelings with your loved ones. Use the experience to help you articulate in clear terms what the truly important things in your life are and then create a plan that you can share with others of how you will elevate these truly important things to the stature they deserve, front and center of your life.

Last week, I visited my Cardiologist to review the results of my echocardiogram. After declaring it to be the new baseline for measuring my future heart performance and telling me that all is well, he shook my hand and said the words waited for in great anticipation.." See you August 2012!" and with that he was off to his next patient and I was off to my new post AVR life. 6 months from discovery to recovery..wow.

Thanks all, good luck to all the AVR and other valve replacement patients working thru the process. Dont hesitate to write if I can be helpful in your journey.

Jim

PS for the few folks that will "get" this..I declare this post to be the very end of the worst case of writers block I have ever experienced! :-)

Three Months!

May 24, 2011

Hi everyone

Its been some time since I posted. Now that I have reached three months from my February 24 aortic valve replacement surgery it seems a good time to update you all.

Most importantly, it is time to reiterate my thanks for all the love and support I have received from each of you. This has been a life changing event for me, one that I am certain would have redefined me in ways I wouldnt have cared for a great deal had it not been for each and all of you.

I recall John Bell-Thomson telling me before surgery that assuming no complications, infections or self-inflicted damage to my recovery, that at 3 months I could move ahead and live my life as normal and consider this behind me. Of course, there were the ordinary cautions about regular cardio checkups, losing weight, etc but the essential thing to me was that at 3 months, I would be free!

Wooohoooo, I made it :-) Today is the day!

Aside from some remaining fluid on the heart found in my post-op echocardiogram that otherwise revealed excellent results, my energy level is increasingly higher, color is great, breathing is better than it has been in years, prior decade long problems with cramps and spasms have subsided to virtually nil, incision site is already fading (thank you mederma), and weight is coming down due - I think in part - to a far better functioning metabolism. That said, I dont expect to be a contestant in any swinsuit contests this summer ..or at a least a winner in any :-) My hip is another issue, although I am able to walk passably with pain most of the time.

It is true that many thousands of people experience cardiac surgery of one sort or another every year, and I am sure that most of us come to find that all of our horrific fears and apprehension were, in the end, not all that different than that which every other cardiac patient experiences. Fortunately these deeply felt emotions prove to be largely unwarranted for most.

Yet, there are people and events along the way that leave a profound impact and often contribute to a life-changing perspective. That is certainly true for me when it comes to the skillful experiences and warm care that I received from everyone at Buffalo Mercy Hospital. From the surgical team to the cardiac care unit staff to hospital administration I could not have wanted for a better, richer, genuinely quality experience. It was a deeply human experience, one centered around me and my needs, delivered well at every turn. It was everything I was looking for as I searched for my surgeon, care team and venue, and I found it right in Buffalo minutes from loved ones and my support group.

My strong feelings about my care led me to accept an invitation for a brief on-camera interview for the Catholic Health System a few weeks ago. If it survives the editing and becomes available, I'll forward a link. I am truly thankful to all at Buffalo Mercy and to CHS.

I am working on a paper focusing on the importance of self-advocacy in health-care choices inspired by what I learned through my experience and that of others through this process. The sincere desire to give something of consequence back has been very powerful, particularly since the night a few days post-op when in the silence of the night I heard my heart beating and realized that it was the first time in a long time that I had really heard that rhythmic, powerful sound. A really long time.

I had been so close to the exit and never really knew it.

You would be correct if you guessed I fell to sleep with tears in my eyes that night, as I likely will tonite as I recall the moment. Good night all and thanks for participating in all that enabled my successful recovery. I'm back!

Jim