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.

First best effort run w/in bpm.

Recent runs!

Enjoy. We got this. I have been told I can push myself...so be it!

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...

Trouble sleeping. That is my recent story. fingers crossed for tonight. trying different positions, angles, beds, sofas, etc.

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.

Here's the info

1190 fifth avenue (101st) 5th avenu hours 11-9.
212 241-6500
Suggest calling ahead

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

Frankly if there is an earlier date I will take it. Can't wait for life aknew

thoughts fantastic community?

what a sweet, calm, kind, and humorous man. I really enjoyed my visit with him spending nearly 2 hours together with my Mom and Dad on conference. I told him I'm part of the Pick club and he laughed. I'm eager to schedule a Ross surgery and feel very comfortable pursuing a Ross. However, in order to focus my thoughts and seek soundings from the HVJ community, i'm going to copy in some Q&A I had. Caveat- all i write is based on memory and there always are probabilistic aspects and time frames to consider with all answers so consider this Q&A as indicative only.
Q: Do you think i need surgery? why? (by the way this was rhetorical)
A: Yes, because exercise tolerance is low, symptomatic, and you have severe stenosis
Q: what type of surgery do you recommend and why?
A: Ross is on top of the list. (i think he referenced the durability
Q: If I get a Ross, what is the durability of aorta autograft (new aorta valve) and pulmonary homograft (new pulmonary valve)?
A: Both valves free 90% free from re-operation in 10years and 80% free from re-operation in 20 years. the homograft roughly 99% free from re-operation in 10 years and 92% free from re-operation in 20 years. [based on this my guestimate new aorta valve due to averaging might have lower rate such as 80% free from re-operation in 10 years and 70% free from re-operation in 20 years. Still with tissue valve certainty need re-operation in 15/20 years. ]
Q: If I get a Ross, and if a re-operation is needed anything to consider or options excluded if I get a Ross.
A: With new aorta valve any further re-operations are available to repair/replace. With the pulmonary typically balloon replacement.
Q: what is the length of a Ross and risks compared to tissue valve replacement surgery?
A: 3-4 hours. risks are similar. His mortality rate is about 1%

I also have a dilated mid-ascending aorta and Dr. Stelzer doesn't believe this prohibits Ross and in fact he has conducted roughly 65 Ross & dilated repairs/replacements.

I also have mitral valve moderate regurgitation! yippy. He believes he would be able to repair this as well. Possibly 90% no reop after 20 years upon repair.

I find the free from re-operation statistics compelling.

My heart is a beautiful jungle. I think Doctor Stelzer is going to have fun with this safari!

Love to all. Grateful for everyone and every moment.

middle of screen white narrow stream of blood. a normal valve blood travels effortless-no white

you can see the white area in the middle of the picture- narrow white stream of blood. With a normal valve the blood seamless travels and no whiteness to be seen

My valve opening is roughly 75%/80% closed! Now that is wild and to see it as well.

Not surprising unfortunately. I'm meeting with Dr. Paul Stelzer Thursday or next Tuesday to discuss surgical options. Will keep you all posted.

HVS community,

I"m seeking advice on surgical options strengths and weakness of a Ross Procedure v Tissue valve replacement. I'm 36 years old, active (or will be much more so when feeling good), and would like to limit the number of reoperations in the future. Given that my view is Ross is the way to go. Thoughts?

Hello Universe & immediate friends/family,

On Monday January 26 I have a second opinion scheduled. I also corresponded with the surgeon :) Dr. Paul Stelzer Mt. Sinai (ross procedure) and expect to see him next week as well. I will share what the second opinion is, but since i have been through a "scare" before and have become more attuned to my emotions and body I'm pretty sure what will be the outcome. Therefore, I'm setting up an appointment with Dr. Stelzer as well.

Now for a little more nitty gritty details. My stenosis mapping is copied in below. I also linked to an introductory AVS page on this site. at the bottom of the site you can see a rule of thumb guide to mild, moderate, and severe stenosis. I'm now firmly in the severe camp. My mid-ascending aorto is dilated at 4.4. this is a secondary issue that can become primary. for instance if someone only has moderate stenosis w/ no symptoms operation isn't really recommended. However, if the mid-ascending dilation is >4.5 an operation for the ascending maybe required, at which time the valve is also worked on.
Date Valve Area ,Velocity , Mean Gradient
2009 1.1 3.8 32
Jul-10 1.1 3.8 30
Jul-11 1.5 2.6 17
May-12 1 41
Jan-13 1.4 4.2 37
1/1/20131.1/1.3 36
Sep-13 1.7 4.7 50
Sep-14 1 4.8 52
Jan-15 (0.6




http://www.heart-valve-surgery.com/aortic-stenosis-valve-heart-narrowing.php

in deep reflection

All, Some of you may not know that I have a heart condition. If you click on my icon you can read a quick bio, but i have severe aortic stenosis and moderate regurgitation. The aorto valve (one of four heart valves) sends oxygenated blood throughout the body. Like a water valve or a door if the opening is not large enough and "things" need to get through the opening less things pass through as well as building up pressure around the opening. similarly, if the water faucet doesn't close properly it leaks. So my heart both doesn't open fully nor close fully. The best of both worlds :) (queue the irony).

Anyway, I have felt symptoms for a month now. The symptoms are chest pressure/tightness as well as shortness of breath. the shortness of breath is becoming more frequent. I met my doctor today and we both believe it's time for surgery. I'm going to get a second opinion, but i feel my body and what it's telling me is its time. I will keep everyone posted and provide more detailed description of my condition as i meet with the second opinion doctor and surgeons (hopefully next week). In the meantime, i suggest researching this website. it's fantastic.

whole hearted
damian

The cardiologist and I are of the same opinion that my symptoms are very likely not due to my heart condition. I passed the stress test I took last week as well, which solidified our thinking.

I still need to follow through w/ my internist possible causes. Some ideas we have are liver related or possibly adrenal fatigue- thanks Jeff S for pointing that out to me.

I go for more tests w/ my primary care this week and the coming weeks, but for now all indications are no surgery. So good news!

The short of it is my second opinion doc is essentially of the view my symptoms are not heart related. My primary cardiologist has revised his initial opinion (go for surgery) conditionally. The condition(s) is to have a stress test and consult with an internist regarding my symptoms. After I finish up on stress, liver test, and internist consultation then I will likely have a final verdict.

My remaining symptoms are fatigue, cotton in the head or foggy head meaning tough to concentrate, and at times I have a tightness in the chest. My fatigue and foggy head symptoms are unpredictable, but happen more than a few times during the week. I'm having trouble isolating the cause. The chest tightness happens sometimes after caffeine or end of day when i'm a little tired.

So more to come. There is also the aspect of quality of life I may need to address, but I will wait until after i finish up with the next round of tests.

keep calm and carry on

I'm still not finished with my second opinion tests. I will add more details this weekend. However, I'm concerned I may need a third opinion. If anyone has recommendations for a cardiologist in NYC that doesn't have a 2 month waiting list please forward on your suggestions. Thanks.

keep calm and carry on

The results will take a few days. I should hear a verdict from my doctor next week.

The test itself was part unnewsworthy and part unique. My doc ordered the chest MRA w/ and w/o contrast. Contrast is a substance that is injected via an IV that produces a sharp color on the MRI screen creating better images. When they injected the contrast I felt a cold rush go up through my arm into my body. Very weird. Anyway next week another update. Stay tuned.

keep calm and carry on.
d

Well today was an unexpected full day devoted to doctors and my body so to speak. I will give some details, but the bottom line is my second opinion Doctor wants more information before making a decision. What that means is he wants to look at my blood work (already got the needle tonight), I will get an MRA of my chest and MRI of my heart (scheduled for January 18th), and he wants to get a five year history on my valve results. Apparently some records didn't come over from my previous Doc in Washington DC.

The moral of the story is always get a second opinion and don't rush into anything. In terms of more details, today's echo didn't show any significant change from my previous echo in May. I had the lab burn a DVD copy of my echo my personal records. My gradient today was 37% v 41% in May. My aorta valve area today was 1.4 v 1 last time. the aorta doesn't appear to be enlarged either. So I have to wait and see. Next journal post around January 18.

I send my love to my support group. Fingers crossed.

A few days ago my doctor recommended surgery to repair/replace my aortic valve. I'm not too surprised with the news as I have been showing symptoms lately. For example, starting 3 weeks ago I have been experiences pronounced fatigue, shortness of breath, and chest tightness. Frankly, with this general lessening of energy I'm looking forward to having an operation to get back to fighting fit shape. My next steps are to get a second opinion, follow up echo, and create a short list of surgeons. I look forward to connecting with fellow BAV patients in the NY area as i pursue this journey.