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Bicuspid Aortic Valve
The Patient's Guide
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March 7, 2014 - 2 Year UpdateTwo years ago (March 7, 2012), I was having my congenitally damaged bicuspid aortic valve removed and replaced. I opted for the Ross Procedure so I also had my pulmonary valve taken out and moved over to the aortic position and got a human cadaver pulmonary in its place. If that weren't enough, I also had my dilated, aneurysmal ascending aorta repaired. OH THE FUN! Here I am 2 years later. All is well! Life is good! I am blessed and grateful daily, especially on this special day of my anniversary. For those waiting, know that its a journey and that waiting is probably the hardest part. Once you are fixed, the healing goes incredibly fast. Go in prepared mentally, that is a big part of it. Contact me if anyone out there has any questions. To my good HVJ friends I have made along the way...god bless you all, you are all a special part of my journey. This will likely be my last "I am doing great" post. It's 2 years now, so how many years can I do this? On second thought, maybe every year, we will see. It's good to hear that things are good. I don't want the only time I post on here again is IF things are doing bad. Sooooo....perhaps I will post now and then. If nothing more, than to help others that are awaiting their big day and to somehow give them peace of mind. Take care all.
December 2013 Update - December 28, 2013I just read HVJ friend Janis Kielbasa's update and I thought I would write an update. As usual my update is boring. Doing great, couldn't be better. My surgery was now 21 months ago (3-7-12) and it seems like forever ago as much as it seems like just yesterday. I had the opportunity this past month to get a free echo. A local MRI company whom I send MRI business to, also does echo's. They needed an echo on someone like me for accreditation or something like that, so they offered me a free one. I took them up on it. I spoke with the reading cardiologist afterwards and he said "if I did not know your history, I could never even tell you had surgery or ever even had any condition". That was so great to hear once again. As we end another year, I stand in awe of my journey through this, how well I have done and how lucky I am. I am grateful beyond words to have done so well through it all. As always I am forever grateful to my surgeon, Dr. Paul Stelzer. I am grateful for family, friends and HVJ friends for the support. Have a great 2014, healthy, happy and safe.
One year Ross update - March 7, 2013A year ago today I was on the operating table having a Ross procedure performed along with repair of my ascending aortic aneurysm. WOW! Two heart valves replaced and repair of the major blood vessel of the body, right at the point just above where it leaves the heart. I was surrounded and supported by my wife, parents, sister, aunt, uncle, cousins, my best friends from New York and even a couple of close HVJ friends. They were all worried and I am sure it was a LONG day for them. For ME? Well... I just slept through it all. ☺ But when it was over, all was good.
9 Month Update - December 7, 2012Hi All,
6 Month Update - Post Ross Procedure - (March 7, 2012)Well, today is September 14, 2012. One week PAST my 6 month anniversary of my surgery. Why am I posting late you may wonder? Because I FORGOT!! That is right, I FORGOT! HOW can I forget? Because I am doing so well now, and I am so busy living a full life again, that its easy to forget. Funny thing is, I DO think about the surgery just about EVERY DAY! I think about what I went through and how well I have done and HOW LUCKY I AM! I will NEVER forget the surgery, the support of family and friends, my special HVJ friends and of course my surgeon, his team and the nursing staff at Mt. Sinai. I MAY forget to post on the day of the anniversary however but that is because I am totally doing great and don't visit HVJ like I used to. All I can say is "it's like it never happened". I am THAT good! I stand in awe and have great gratitude for such a great recovery. And they say it takes a full year. I can't wait to see what I'll be like in 6 more months. Until next time.....thank you all for your support and to those waiting, you WILL do this and do it well! I know you will!
5 Month Update - Post Ross ProcedureWell yesterday, August 7th was 5 months for me. Hard to believe that 5 months ago I was on the table and in ICU. If someone told me I would be doing this well, 5 months later, I would never have believed them. I am not the religious type, but thank God. I really could not be better at this point. I am doing everything and anything I want to and I am back to work full steam. We are very busy at work now, so I am putting it to the test and have had no issues. Heart surgery?....WHAT heart surgery!
July 7th: 4 Month Update -- Ummm.....Still GREAT!Hello All:
3 Month Update - Still Great!Hello All:
2 Month Update - One word - GREAT!Well, it's been 2 months to the day since I had my surgery. Continuing to recover very well. Yesterday, I went out and played some baseball with my teams. I actually played a doubleheader, believe it or not. I had a 1 PM game with one team in the 6 PM game with the other team. I did notice, surprisingly, that my heart rate got up pretty high just doing basic things out there. Normally, when I walk/jog and even throw in a few sprints, on my normal exercise routine since surgery, my heart rate might get above 130 at the end of it (2.2 miles). Yesterday, doing what I consider considerably less, my heart rate was up to 136 the couple of times. I think this has more to do with the intense heat than anything else. Could also be that I forgot to take my Metoprolol yesterday morning. I'm still on half a pill, twice per day.
Short but Sweet Update This Time - Almost 7 weeks post opComing up on 7 weeks (this Wed.) post-op and doing GREAT! Great energy, exercise going great, threw a baseball today and that is ALWAYS great. All I have is a little nag at the end of my scar but that seems to be slowly getting better. SO, great, great and more great! BUT I still can't do housework! LOL
One Month Post-Op Update (Ross Procedure)Sorry for the delay in writing but I figured I would not write a 4-week update and rather wait for one month. One month ago today, at this very time, 10PM, I was in the ICU and was just getting my breathing tube out. Hard to believe that 1) it's only been a month 2) how much has transpired since then and 3) how much progress I have made.
3 Weeks Post Ross Procedure Update3 weeks ago today I had my surgery and I was recovering in ICU! Hard to believe! I could not even get up by myself, get out of bed, etc. Walking the next day or 2 after surgery felt like learning to walk all over again. Now, I just walked 2.2 miles this morning at a very brisk pace. Things continue to go really well for me. I am grateful that I do not get any of the fatigue that others seem to get a lot of. In fact, I did not even lie down once today and it's 7 PM. Most days, I try to lay down for an hour or two midday, but I'm lucky if I sleep 10 to 15 minutes of that time. I've just never been a napper. I sleep fairly well at night, but now I'm finding that if I don't go to sleep by 10:30PM or so I'm up til about 1 or 1:30AM. (more my normal pre-surgery pattern) I do sleep decent during the night however and again, luckily, I'm not affected by fatigue or feeling of any tiredness throughout the day. I'm mostly bothered by mid to upper back pain and this seems to be in association with chest tightness. Thankfully, I have a wonderful massage therapist who has been coming to my home and this helps tremendously. It just seems that the mid back is quite persistent and took a big hit during the surgery. The chest gives me minimal pain, even when coughing, and like I said prior, I just take ibuprofen 400 mg as needed, and it's needed less and less (I only took one in the past 24 hours). So far, it's been 3 weeks and no sneeze! I've come close a few times but was able to stop it with the old “pressure against lower nose” technique. Saw my cardiologist today for the first time since the surgery and he was very impressed with the results. He listened to my heart and felt the pulse in my neck and had comments like “very nice”. He cautioned me not to push the recovery too fast as he knows I'm prone to do. It's important during the first few months to let the suture lines/soft tissue heal (and we are talking about the sutures inside the actual heart for the valve etc., not the skin). One of the main things that can affect the healing of the sutures is raising the blood pressure. Obviously, when exercising, blood pressure is increased and therefore exercising too much or too intensely too soon would not be a good thing. I was also cleared by my surgeon to do isolated strength training which I did yesterday. I just worked on biceps, triceps and leg curls and leg extensions using the SuperSlow technique that I've done for years. I reduced about 20% on all my weights and went nice and easy and did not do any high-intensity as I would normally do. From a heart point of view this is perfectly okay, it's more of a sternum issue I need to be careful with, and that is why I did only the exercises noted above, which do not put any stress on my chest or shoulders. It's so important to maintain muscle mass and strength. The heart serves the demands of the muscular system so it's really good for the heart. It's just that I need to go easy for a few months, thats all. Even though I was asymptomatic before surgery for the most part, I did notice something yesterday when doing the weights. Even though I didn't push it, and the weights were 20% lighter than my normal amounts, I could tell by the end of my set when it was getting a bit more difficult, that I felt “different” in terms of my breathing and my heart. It's a little hard to describe and as I told the cardiologist today, “the heart just seems more efficient”. And I'm sure it is! I'm also sure that as time goes by and I start doing more and more activity I will eventually come to notice many things that would lead me to the conclusion that I probably was more symptomatic that I realized. Again, I am blessed and amazingly grateful that I live in this day and age and was able to get this procedure done. I'm looking forward to a long, full and active life, with my highly efficient heart.
Finally! - A Poem for Nancy Friedman.There once was a lady named Nancy,
2 Weeks Post Ross ProcedureTime for an update. Things are going great! Sleeping in my own bed -thankfully we have an adjustable foundation bed. And I am actually sleeping!! Sure I get up 3 times a night or so, but it beats 10-12 times like before. I am walking twice daily around my community, which is 1.1 mile. I have that down to 19 minutes now, 8 minutes less than it was just on Saturday. My pace is quite brisk. My appetite coming back but I don't want to eat too much and upset anything and also I am down 10 pounds from my PRE-surgery weight and wouldn't mind keeping that off. So, I have lost all my surgery weight (20 pounds) PLUS another 10. Crazy! My energy is still good. My pain is minimal. Just take Ibuprofen maybe once or twice a day when needed. I have no issues taking care of myself. People who see me can't believe I had major open heart surgery 2 weeks ago today. The ONLY thing is a nagging cough from reduced lung capacity. Doc said that could take a month to get back. It is really annoying, Anytime I try to take a deep breath, I cough and my lungs just feel sore. That is about it. Overall. doing great!
Home to Florida TomorrowAnother great day today. Walked alot, went to see surgeon one last time and went around to thank the nurses who helped me so much. I still can't believe how good I am doing. Other than a fast heart beat, and my digestive system being slow to recover, I'm doing well. In fact earlier today, I almost felt like my usual self. In any case, I know I've got a ways to go and need to take it easy. I'll focus on that when I get back home. So, goodbye to NY, my original hometown. It's been very good to me and the people in NY are really so nice! (don't believe what they say about New Yorkers). Looking forward to getting back to Florida, my home, great weather and most of all my kids. :)
One Week Post Op UpdateWell, it's been one week! Hard to believe a week ago I was on the operating table and now for the second day in a row I'm walking the streets of New York City and today I went by myself and walked a half a mile or more. I only take Motrin as needed and the last one I took was at 10pm last night. So no pain meds at all today! But it gets better. I have boundless energy and I hardly nap at all. I'm up every hour at night but I do sleep, just this waking up all night long. I know many have great fatigue but I'm not getting that and I hope not to. All I can say is I'm astonished where I am at at one week post-surgery. I'm blessed and fortunate beyond words.
Discharged YesterdayI was a discharged yesterday at around 4pm. Spent the day in the hotel. Much better than at the hospital. Doing better. Had my first shower since last Wed. That was NICE! Sleeping is still an issue. Thankfully I have a power recliner at the hotel but even with that I wake up about every hour. I did sleep though, but just woke up each hour or so for a little bit. As I mentioned before pain is not bad and I just take a couple of Motrin throughout the day. Hardest thing now is getting a good cough and try to get the mucous out. The lungs take a big hit on this surgery, I think almost more than the heart. (or so it seems). Nice weather in NY today so I will get out for some good walks. Going to get a pedometer to track my distance and try to increase a little each time. My heart rate is staying high, 110-120, (this morning 103). Woke up at 10:30 last night with rapid shallow breathing and a fast heartbeat (114 even after meds), same as I had in hospital. I emailed my doc out of concern and luckily he emailed me right back and put me at ease. He also mentioned that the echo I did yesterday, before leaving the hospital, looked "perfect". So great to hear this after a lifetime of worse and worse looking echos!
Day 4 ReportDay 4 Report:
Hi Everyone, It's Me!!Hello all, it's me.
Walking todayJeff began walking today. He took 3 laps around the nurses station this morning, and three times up steps. Repeated the same this afternoon and tonight. He is doing well but is very tired. He can't seem to sleep. He had a massage today thanks to fellow Chiropractor, Rob here in NYC. I'm hoping Jeff will get some better sleep tonight. If so, I'm sure he'll feel even better tomorrow.
Out of ICU!As of 6pm, Jeff was moved out of ICU to his own room. We were able to get him hooked up with a private room for the "king of recovery". ---Jeff made me write that last part. Jeff sends his best to everyone and thanks you all for your support. He hopes to be writing his own journal in the next day or two... Carol
It's A Good Morning and Dr's are Amazed!Jeff is doing absolutely fantastic today. The doctors are amazed at how well he is doing. One doctor came over to ask him if he is ready to go into surgery. All his numbers including blood pressure, blood supply, oxygen, etc. are like he never had surgery. He's talking a lot, eating ice chips, had a popsicle. They are planning to move him into a regular room real soon, within the next couple of hours....Carol
Breathing Tube out and Jeff making his requests!Jeff is doing great. He was definitely glad to get the breathing tube out, like everyone else. That came out around 10pm tonight. Then he asked me if I texted everyone and posted in the journal. Just like him:) He is having a lot of back discomfort, but that's normal of course. He had the nurses change his position in the bed, requested his ear plugs, headphones and ipod, his watch to tell time and chapstick for his lips. He was also asking for ice chips which they were going to give him soon. I'll post again in the morning. Goodnight.....Carol
Out of Surgery in ICU!!!All went perfectly according to Dr. Stelzer. Dr. Stelzer told us that he repeated many positive messages to Jeff throughout the surgery. Just what Jeff wanted. He will be happy. We are waiting to see him any minute. Thanks for the wonderful prayers. Prayers are obviously still welcome until he is out of ICU. Hopefully he will be out of ICU sometime tomorrow.
Surgery StartedHi all, This is Carol, Jeff's wife. He went into surgery around 9:30am this morning. We will hear from the doctor between 3-4pm. I hope to update shortly after speaking to him. Prayers are welcome all day!!!!
Last post Pre-surgery. First Post-surgery post coming soon:)Hi All:
Last Weekend Home...for a little while!!Well, its my last weekend home before the surgery. Spending the weekend with family. Tomorrow my 7 year old son Jason has his baseball opening day carnival - games, food, rides etc. I will hang there with him and have some fun. Forecast here in Orlando is unseasonably warm - 90 degrees. Tomorrow night we have an Orlando Magic game to go to. Great father and son time. My girls, Brooke (15) and Erica (11), well, they are hard to pin down - teen and pre-teen ya know! Got to have a nice dinner with the two of them last night. Sunday, my gracious sister and brother in law are hosting a get together for family at their house. Sort of a send off for me. Will be nice to gather with all the family before I leave on Monday morning. I am back in a better frame of mind now. Had the priest say a blessing for me today (yes I am Jewish but my wife is catholic and we went to meet the priest at her church), I have Rabbi's across the country saying prayers for me, my "Ross" brother Chris Dixon is doing so much better, the mental imagery CD's are working well for me, and I continue to realize I have everything going for me going into this - age, heart function and size are good, coronaries are clear, weight is good, muscle mass is good, no other health or organ issues. Hell, I don't think there is a better candidate than me for this :) OH, and did I mention one of the best surgeons around and THE best and MOST experienced with THIS procedure. I got it goin' on!!! And of course, there is god in the room with me and my "Band of Angels" watching over me. Who are the Band of Angels, you ask? Well, that is all of YOU. Family, friends etc. Angels that I visualize when I do my mental imagery. And these Angels, with YOUR faces on them, are there in the operating room with me, and in recovery, watching over me. Can't beat that now can you?!
ONE WEEK 'TIL "V" Day!One week to go. Reality is finally setting in. I am still doing OK, but after what happened with my good friend Chris Dixon last night, it hit me. It was just too close to home. (same surgeon, same procedure, etc, etc) And Chris and I have have gotten real close through all of this. Well, thanks to Chris, I DID have the big cry last night. A couple of times. It's the cry that everyone seems to talk about. I thought I'd get by without that. It wasn't SO BIG of a cry, so let's get that straight. (I'm no "girly man") I think it just all hit me. I was feeling so bad for Chris and Niki and at the same time, I thought WOW, this IS really a BIG surgery and some complication can happen with any of us. We see so many here doing so well and breezing through this that we tend to lull ourselves into a sense of security that it is "routine", "these guys do this all the time", etc etc. It iS true and comforting to know that the mortality rate is like 1.5%. Our doc (mine and Chris') is under 1% and that is for a more complex procedure too. Still, there is always someone who IS that 1% or so that does not make it. So, we don't like to think about it or face it but it CAN happen. Anyway, it's just all so real now and as I move into my last week "on this side", it sure does get more nerve racking. I am good though. I can and will do this..and do it well! I am probably the most persistent person around and I will push thru this and come thru great. I am hitting my CD's hard to get relaxed and keep positive. Sometimes though you have to face the reality of it all. (like going to safe deposit box today and getting my living will out and power of attorney out - that's REALITY). To end on a positive note, Chris Dixon is doing much better. His complication had nothing to do with the procedure and it can happen to anyone getting OHS. Balloon pump out, ventilator out! He had made some great progress today and our prayers for Chris seems to be working. . He is in a lot of pain though from the chest muscles (apparently these muscle guys get more pain - better off being flabby for this operation I guess). On another positive note -- "I GOT THIS"!
10 Days to Go.....and YES I am GOOD10 days to go and I am still feeling good mentally/emotionally. Of course, sometimes I think of the "bigness" of this surgery and I well up with tears. I have not yet had the major "cry" like some have. I suppose that can happen at any time, if it happens. The other day, 2 of my great patients, husband and wife, asked me if they can say a prayer for me after I treated them. They each got on one side of me, held a hand on my shoulders and said a nice prayer. Well, that was touching to say the least and they got to see their doctor cry a little. It really did choke me up so to speak. Human I guess. Heading up to NY a week from Monday with the surgery scheduled for that Wednesday. Luckily, I feel well physically and I am playing in, not one, but two baseball games tomorrow and looking forward to my last day with the guys (until the fall season that is when I come back better than ever!). Thanks again to all my HVJ friends, both the ones I am close to and the occasional ones. You are ALL amazing people and we have something so special in common that it is hard to explain to others not going through this. I also must add that the positive imagery/relaxation CD's really do help. In fact, off to listen and imagine again before I go to sleep.......zzzzzz
Two Weeks 'til "V" dayTwo weeks from tomorrow. Hard to believe. I am getting ready with reading 3 different books, doing a relaxation and guided imagery CD, compiling my surgery song playlist, writing a surgery affirmation, writing my pre and post surgery "healing statements" that the surgeon or anesthesiologist will read to me, and so much more. I WILL be ready when the day comes. Well, ready as I can be for something so huge as this......
Heart Valve Journal "UNION"???When we are all past our surgeries, or are fully recovered from our surgeries, I would really love to see a Heart Valve Journal "union" (can't say reunion since most here have never met prior). Orlando would be a great place for that. Not just because I live here but its Florida and people like to come here. Can make a family trip of it and outside of the big "union" people can go to the parks with the kiddies, etc. Just a thought. What a great way for all of us to meet in person. I feel such a connection with so many and we have never even met. I know others feel the same way. Would be great if we could all meet up IN PERSON. Just curious what some of you think about this idea. I could help organize this. Nice dinner banquet type of thing. Maybe November or something like that. Let me know your thoughts.
Saw Another Surgeon YesterdayWell, I had another visit with a local surgeon here in Orlando who is actually also featured on Adam's website, Dr. Accola. The visit went well and he was a very nice doctor and it went as expected. My choices with him are tissue or mechanical obviously. Since I do not want Coumadin it would be tissue and his personal choice is bovine. Apparently, the bovines may last longer than porcine and with the newer heat preservation methods, longer still. He quoted a statistic of a 30-40% reoperation rate at 18-20 years. Said another way, a 60-70% chance of no reoperation in 18-20 years. And this is apparently with the older bovine valves that were preserved with glutaraldehyde. He's only been doing the heat preservation ones for 9 years, but the predicted durability would apparently be better than stated above which is based on the prior generation of glutaraldehyde preserved. Has anyone out there reading this had a bovine valve put in at 45 years of age with a fairly high activity level and have it last 18-20 years a more? Certainly, these numbers are somewhat encouraging but personally I think, from what I've read and researched, quite optimistic. I've seen and heard from other sources that at my age the predicted lifespan is 8-10 years for a tissue valve, however it could even go 15. I'm not sure which tissue valve that refers to exactly, bovine the porcine. In any case, there were no surprises for the most part with the visit yesterday other than maybe this statistic. I mentioned the Ross Procedure and of course Dr. Accola doesn't do that. I got the usual "you are making a 1 valve operation into a 2 valve operation” answer". I realize this is the primary objection to doing this procedure and I wrestle with it all the time. Dr. Accola further added that he has a personal (I think he said ethical) issue with doing this.
Fatigue Follow Up PostTook this from Dr. Wilson's site. Notice below the part about "major surgery"
Fatigue and Scar Advice - Hope this helpsIt seems like I keep seeing some of the same things across peoples journals. A lot of issues with scar pain, bumps etc and a lot of fatigue. Both are "normal" but I wanted to address them a little and offer my advice. As for the scar tissue, there is a non-invasive, safe and very effective therapy out there that is growing in popularity. It is called "cold laser" or "low level laser" therapy. It uses a low powered laser (non-heat producing) to penetrate the tissue and speed healing in tissues. I have had amazing results with my patients with this therapy. Here is a link to the website for the ML830 laser (the one I use in my offices). http://www.microlightcorp.com/technology/videos/
Just Pitched 7 Innings!Damn this sucks! I am going for major OHS in 24 days. I have no symptoms. I worked in my super busy chiropractic office all week, adjusting many, many patients, which is a physical job. I worked out this week with my usual high-intensity strength training "SuperSlow" (though not to the max). This morning I pitched 7 strong innings in my baseball game (yes baseball not softball! - let's be clear on this - LOL). Not to mention getting on base 5 times and running the bases. I go all day long in my busy life and I never get tired or fatigued. I feel GREAT! I am SO HEALTHY! This is the hardest part to get my head around. WHY THE HELL AM I GOING FOR OPEN HEART SURGERY??!! I know the answer.....unfortunately!
Focus!! - On What??Well, it seems like all I do these days is focus on heart valve choices; pros and cons and research, research, research. I feel like I know so much I could practically do the surgery myself...NOT! It's weird how this can consume your life. Not sure why that would be. I mean, it's just a small little procedure...NOT! People keep asking how I am feeling. I think they mean mentally usually. Physically I feel really good. In fact, I was driving to work yesterday thinking about who good I feel and how healthy I am everywhere else. I was like, do I really need this? Mentally, I am doing well. A few moments here and there where it hits me and I get a little teary-eyed, but doing well over all. A month from today it will all be over and I will be day 2 post-op. Anyway, guess I have to get back to work now.....and try to FOCUS on that!
Donation $$$Hello Fellow "Valvers":
Second OpinionI am going to see a local and highly respected surgeon next Friday, Dr. Kevin Accola. You may ask: Why Jeff, you aleady scheduled surgery for March 7 in NY? Well, with a decision as big as this one, you are never completely sure. I just felt I owed it to myself to have at least one other opinion. Just want to get this doctors views and input. At this point, I am extremely knowledgeable on my choices, the pros and cons of each, the risks involved, the outcomes and so forth. I've done my research, spoken with other patients etc. I know what I "feel" is best for me. I am hoping Dr. Accola is in agreement with my choice. Even if he is not, it is unlikely to sway me from my informed decision. All this being said, my conscience would feel better, having spoken with another surgeon.
Mitch Friedman - On My Journal?Just spoke to Mitch. From the ICU!!!! I thought really sick people are in the ICU. Well, Mitch is talking on the phone, emailing, making journal posts. Funny thing is, this was the first time I have actually spoken to him. We email and post journals but never spoke. Until now...when he's in the ICU. Anyway, he sounds great and is still in ICU due to low blood pressure. He said, as most have, it's really not that bad and it's much worse in your head before going in than it is on the "other side". Best wishes to Mitch. The damn guy even makes headlines on MY journal. - LOL
Decision Made - Date SetWell, it looks like my decision is made. Tonight, I just spoke with 2 Ross patients. One at 17 years and one at 22 years post surgery. The one at 22 years is a patient of Dr. Stelzers. He has quite an interesting story. He had two failed porcine valves by the age of 22. When the second one failed, he was dying, lost weight down to 150 pounds (at 6’2”), short of breath, headaches, etc. He went up and down the east coast meeting with surgeons trying to find help, some solution. He eventually got referred to Dr. Stelzer and has the Ross done. That was 22 years ago and he is still doing great. He does everything athletic wise and has no restrictions, and has not had to be on Coumadin for the past 22 years. He just had an echo done and it looks at though he never even had surgery (except for the scar on his chest) He tells an amazing story about the beloved Dr. Stelzer, as other patients of his have. For me, the Ross is the right one. While all the valve choices have pros and cons, the Ross seems to me to make the most sense and offers the best quality of life and has recently been shown to offer a return to normal life expectancy ( I don’t think any of the other valves can say that as far as I know). If I am fortunate to have an amazing outcome I could be looking at: a valve that is durable and has longevity, no change in lifestyle, better hemodynamics, no blood thinning medications, no special diet, no activity restrictions. My date is tentatively set for March 7th. For those interested, Sir Magdi Yacoub, MD is one of the most respected surgeons in the world. He has done more heart transplants than anyone else in the world. He also has done a lot of Ross Procedures and has done studies documenting the Ross Procedure. Here is a great 2010 interview with this legend in the field. (36 minutes) http://www.ctsnet.org/innovation/ross/YacoubMagdi_CryoLife_2011.html
My Surgeon Visit in New YorkJust got back from visiting Dr. Paul Stelzer in NY. Very nice man and spent 3 full hours with my wife and I. He reviewed all my tests and then answered all our questions. I tentatively set a surgery date for March 7. I say tentative because I still have some final decision making to do. Choosing a surgeon is one thing. Choosing a valve is entirely another decision. All valve choices come with certain draw backs. My reason for visiting Dr. Stelzer in NY was because I am considering the Ross procedure and he is the most experienced at it in the U.S. Tough, very difficult decisions........
Photos FINALLY!I finally got my photos compressed below 1MB and got them uploaded. WITHOUT Nancy Friedman's help. I asked her how and she said "I don't know" - LOL - Inside Joke
Ross ProcedureSpoke with a man named Ralph today from Maryland. He had the Ross procedure 4 years ago and is doing GREAT! He had it done by Dr. Stelzer and said he was an amazing surgeon and person. Sooo, that helps me a lot. That is 3 people I have spoken with now, who all said the same thing about Dr. Stelzer. I am meeting him on Thursday...and then dinner and a broadway show (Rock of Ages) with my wife -- hey might as well have fun while I'm there!
Question: Traveling for Surgery. Need HelpHello All:
VacationJust got back from a relaxing vacation at our condo in Turks & Caicos. So beautiful there. That looks to be the calm before the storm so to speak. Last vacation before I go and "get the job done".
CTA Results - ALL CLEAR!Had my CTA today and spoke to the radiologist this evening. Said my coronary arteries look "GREAT" and I have 'ZERO" calcification. So, one less thing to worry about! Just wanted you all to know :)
CTA TomorrowGoing for me CTA tomorrow. One more step toward the big day!
Addiction - in a good way!This Heart Valve website is like a FaceBook for valve people. It's crazy addictive! In a good way. Making great friends here and I love the camaraderie. Thanks to all those who write. What a great thing Adam has created here.
CTA it is!!Thanks to all of you who wrote back. Some had cath and some had CTA. I have decided after feedback from fellow "valvers" (is that a term?), and doing some research and speaking with a radiologist friend, that I am fine with the CTA. Also, my surgeon recommended this and when I told him I decided on doing this test he said he was "happy to hear that". So, that will be next Tues.
CTA or Catheterization - HELPIf anyone out there can help, I have a little dilemma. My surgeon recommends a CTA (CT Angiogram) to check my coronary arteries before surgery, however my cardiologist recommends a cardiac catheterization. Can anyone speak to what they were recommended prior to their surgery? From what I gather CTA is very accurate, however according to my cardiologist if there is a “new lesion” that is not yet calcified, it may not show up on a CTA whereas it would on a cardiac catheterization. I am 45 years of age and the surgeon says usually in that age group we are fine with the CTA, since I'm not high risk for blockage. I should also note I am in excellent overall general health other than a bicuspid aortic valve. I just want to be sure we don't miss anything like a blocked coronary or partially blocked coronary that could have been corrected during the valve surgery at the same time.
CTAWell, I'm going to get a CTA done. That is, a CT Angiogram, to check my coronary arteries. They'll be looking for any blockages. The reason this is done is because while they are in there fixing my valve, if there are any blocked arteries, they can repair that at the same time. I will get this done in the next week or so. I've already sent the CD's of my latest echocardiogram and CT scan of my aorta for the surgeon to look at. As mentioned before, I'll be up there with February 2nd to meet with him and will schedule surgery after that, assuming all goes well at that meeting. I've already checked on available dates for surgery through February and March. At this point, I want to get this done and get it over with so I can move on with my life. Trying to "time" open-heart surgery and subsequent recovery is certainly not the easiest thing. Luckily, I'm asymptomatic and have the luxury of planning when I want this done. With a busy life of work, kids, planned vacations, and so many events and so forth, it is certainly a challenge to find the right time. Of course, health comes first, especially something as monumental as this.
Great FeedbackGlad I joined this website and started my journal. I have already had a few great conversations with some great people. Thank you! I just heard from a gentleman who has the Ross Procedure done by Dr. Stelzer and is doing great. He had it done 5 years ago, and 4 months post surgery he ran a 10K. Prior to that he could not walk even a few blocks without being short of breath. And of course, Adam, who runs this website had his 'Ross" done 6 years ago and is also doing very well. All that being said, I am still thinking of meeting with Dr. Gillinov at CC. I hear great things about him. Fact is though, if I go with a Ross procedure, there is simply no one with more experience doing it than Dr. Stelzer in NYC. If anyone reading this has seen Dr. Gillinov, I would love to hear your feedback.
New Year - New Valve?January 7, 2012
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