Damian's Journal

Dear Heart Community, I'm 3.5 years post-Ross procedure and my Pulmonary valve is moderate to severe stenotic. I also have symptoms. I'm pretty shocked how quickly the pulmonary valve is fatiguing. I will find out, with second opinions, in the coming weeks if surgery is required. What I'm inquiring from this community is views on the shortness of time my pulmonary valve fatigued as well as potential pros and cons of surgical options. I'm at the beginning of research, but I believe either OHS with valve replacement or Transcatheter Pulmonary valve repair. Some suggested things to consider: research on durability, potential negative outcomes like scaring, baceria infection, blood thinners, and future re-operations given my relatively young age. Thanks for all your help!

Hi. Like many others my posts are less frequent as I focus more on life and using this new ticker! I have experienced some bumps during post-op, but (hopefully) have achieved a new normal. Starting with the bumps; I developed an irregular heartbeat specifically Atrial Flutter. I was cardioverted, which lasted only a few weeks. However, The catheter ablation seems to have solved the problem. As long as I consistently exercise and moderate other typical causes (drinking etc) my heart continues in sinus rhythm. The good news is I'm feeling energetic and strong. I'm strength training to a degree I haven't in many years and have signed up for various athletic challenges Spartan being one of them. I'm looking forward to new adventures and exploiting my energy and healthy!! Good luck to all! d

Hi, Things were going quite well then suddenly recently I began experiencing atrial flutter. I'm considering an ablation procedure, but feel a little uninformed since there isn't a comparable flutter website. If anyone else has experienced this I would welcome the correspondence.

Heart brothers and sisters. I'm setting a reasonable challenge for myself to run/walk 3 miles by my 3 month post op date. If anyone is in the area and would like to participate or just cheer others on see below for details as well as my personal fundraising site. Thanks! http://healingheart.kintera.org/runwalk/dkphoenix

"there are somethings which can't be learned quickly, and time, which is all we have, must be paid heavily for their acquiring." - ernest hemingway Well time has past and I'm physically getting much stronger. I actually jogged a few miles the other day. With my body's rebuild my mind and spirit are also becoming more at ease (along with a lot of taking stock of life and so forth). Although this journey as been the most emotionally challenging one i have faced, I think i will be forever changed and thankful for it as time goes on. Sending positivity to all. Will check in periodically. xo Damian

i can't believe it already is 3 weeks post surgery. The journey is so enormous I can still be overwhelmed at times. Physically I'm doing much better. I have been walking consistently over 1 mile per day for the past 3/4 days. i actually went on a treadmill and stationary bike yesterday to push myself a little. However, two outings a day is a little much for me perhaps since i walk up 4 flights. My heart rate remains high even with metoprolol. I know this is normal, but i just wonder what is causing this increased heart rate. Emotionally I'm doing better as well as I have had some time to process all of the feelings and ways of being with myself and others. More to come...

Well yesterday I walked in total 800 ft plus 4 flights of steps (45 steps). Today i walked 3,000 ft plus 4 flights. The 3,000 seemed a bit much. i was a little short of breathe walking up my stairs. any thoughts on rules of thumb for increasing walking count day-by-day?

I have to admit it feels surreal to walk down 4 flights and another 400 feet to a favorite restaurant with my dad today while at the same time last week my chest was being stapled together with wires and my new valves were beginning to provide me with a new life of joy. I think it's partly the medications I have been on, but i literally view the world differently. shapes and images have a more magical vibrant quality. i see movements and shimmering of light where i never have before. my senses must be more acute and i'm definitely more in the moment then ever before. you may have gleaned that have my recovery is going relatively well. i established the medical regime and other basic house necessities. i have been exercising daily (4 flights is great for the heart). my incision shield should arrive tomorrow so i can take a shower and let the wound breath while not being irritated with clothes. My water weight is starting to drop and the binding agents are well being less binding. that was a bit of a surprise becoming friends with laxatives. i'm about 10 lbs higher then pre-op weight so not terrible. I'm reflecting more on the emotional and psychological aspects of the entire experience that included not simply the actual surgery and facing the uncertainty of success, but how I wanted to be during the process and how i will continue to be. I will start journaling more to start collecting my thoughts. For now brothers and sisters I leave you with Invictus. Out of the night that covers me, Black as the pit from pole to pole, I thank whatever gods may be For my unconquerable soul. In the fell clutch of circumstance I have not winced nor cried aloud. Under the bludgeonings of chance My head is bloody, but unbowed. Beyond this place of wrath and tears Looms but the Horror of the shade, And yet the menace of the years Finds and shall find me unafraid. It matters not how strait the gate, How charged with punishments the scroll, I am the master of my fate, I am the captain of my soul.

Mixed results yesterday. Was able to sleep Monday night so had physical progress. Walked up twenty steps. Tuesday night was a nightmare. Miscommunication regarding pain meds and constant interruptions. Damian I sleepy now and extra tic at going home today. He is looking forward to resting at home with his loved ones and recovering in Ernest. He is happy to be alive. Post dictated by Damian to his father.

Doing well. Finally was able to sleep thanks to pain meds. I walked for the second time on my new birthday. Now outbid ICU. Huzzah. I am healthy vital and strong. Love you all.

This is Damian's Dad blogging for him. The Ross was successful and Damian is recovering at Mount Sinai. He was able to walk His blood pressure is gradually stabilizing. The meds are being tapered off. He is in good spirits. He is now in a somewhat lower intensity part of the intensive care unit. He hopes to make it to a regular surgical floor tomorrow. Thank you for all of your support.

All, As a reminder I will be going to Mt. Sinai Hospital in Manhattan (upper east side). The exact address is 1190 fifth avenue (101st) 5th floor room 182. If you would like to find out a status update you can call Dr. Stelzer's assistant Kathy Cordova at (212) 659-6871 live well, laugh often, love fearlessly, and be kind

I was hoping an earlier date would become available, but it doesn't appear likely so February 20th is the final word on the matter. I'm expected to arrive at 530AM. I would say it's going to be a long day for me, but during most of the day I will be in another world filled with the positive energy of my ancestors and current loved ones. As part of my discussion with Dr. Stelzer not only will the Ross (double valve) be conducted, but likely repair to mid-ascending aorto and possibly repair to mitral valve. Talk about a total transformation. New heart, new me, new life filled with possibilities. love you all d

I must say I find myself at times a bit overwhelmed with emotions. The intention and gratitude I have for all the people around me is acute. I'm taking nobody for granted and really appreciate kindness and generosity. Ok signing off for now