John Palumbo - Heart Valve Journal

My Journal

3329 days ago

More disappointing birthday news...this time health insurance related. I am currently self-employed and have single-person coverage with HBCBS of NJ. Unfortunately, ...Read more

More disappointing birthday news...this time health insurance related. I am currently self-employed and have single-person coverage with HBCBS of NJ. Unfortunately, I just found out from an insurance broker that there are NO PLANS available that would allow me to go to an out-of-state doctor. My only options are: 1. Hire another employee and buy a group plan. 2. Move to the state where the docs I want to see are located (or establish residency there). While doing my research I found that lots of people are in my position...and it's really a shame (especially when we live in NJ and NYC is sooooooo close). Looks like if I want to use an out-of-state doc (my top choice was Dr. Allan Stewart) it's time to get super creative and "find a way"...or just suck it up and find a great surgeon in NJ (I have appointments pending with Dr. John Brown in Morristown and Dr. Leonard Lee at RWJ).

Phyllis Petersen That's awful. I've been self-employed and know how expensive individual plans are. At one time, I act ... Read more

Phyllis Petersen That's awful. I've been self-employed and know how expensive individual plans are. At one time, I actually went back to school full-time for a semester to get into an affordable HMO so I'd have coverage. Thankfully, it worked for my needs for a few years, but weren't always as responsive as I'd like.

Ben Hyman Stephanie Jones is another patient on this site that lives in NJ and had a very succesful outcome wit ... Read more

Ben Hyman Stephanie Jones is another patient on this site that lives in NJ and had a very succesful outcome with her Mitral Valve repair at a NJ hospital. She also did a highly regarded and well done video blog on her experiences. You may want to reach out to her to get a recommendation. She seems very eager and willing to help other heart valve patients. Good luck!

Steve Farthing FYI - Dr. Brown in NJ evidently does a higher volume of aortic valve surgeries than Dr. Stewart. In ... Read more

Steve Farthing FYI - Dr. Brown in NJ evidently does a higher volume of aortic valve surgeries than Dr. Stewart. In 2012-13 Dr. Stewart reported 159 aortic valve replacements for medicare patients and Dr.Brown reported 248 such procedures. Of course, that is not to say one doc is better than the other; they both do a lot of these procedures. (Stats based on usnews website for surgeons.)

Cathleen Weed Have you tried calling the business office of the NY hospital you would like to use? The insurance pe ... Read more

Cathleen Weed Have you tried calling the business office of the NY hospital you would like to use? The insurance people there will know if there's a way. They will call your insurance company for you. Maybe your surgeon of choice has rights at a hospital in NJ as well. Just a thought but I would call them if you haven't. It's more efficient than dealing with the insurance company directly.

Stephanie Jones Hi John!! yes, as Ben hyman stated, I"m in NJ too, also self employed. I had surgeon Dr. Saunders at ... Read more

Stephanie Jones Hi John!! yes, as Ben hyman stated, I"m in NJ too, also self employed. I had surgeon Dr. Saunders at Newark Beth Isreal hospital. I'm separated from my husband, pending divorce and am not on his medical coverage, so I'm actually temporarily on Medicaid at the moment. If there is something you can do / we can do together such as hire me as your 'employee' and go in together on health insurance somehow that would be great!! :) please reach out to me and let me know if there is anything I can do.

John Palumboposted a journal

3329 days ago

Well, today is my 48th birthday and as a present I received the hard copy of the MRI and MRA performed last week. My cardiologist and I spoke last week when ...Read more

Well, today is my 48th birthday and as a present I received the hard copy of the MRI and MRA performed last week. My cardiologist and I spoke last week when he received the results and he confirmed I had a bicuspid valve, moderate regurgitation and mild stenosis. In addition, the results showed NO aortic aneurysm...BUT moderate enlargement of the right ventricle...and SEVERE enlargement of the left ventricle with low systolic function. The doctor told me not to be worried about this...it was probably due to the fact that I exercise. However when I got the report in my hands, I had to do some googling. One thing I noticed consistently in articles was the warning NOT TO DO CERTAIN EXERCISES (isometric, weight lifting). I called my cardiologist and spoke to someone in the office and specifically listed the exercises I do to find out if I could continue doing them. Here is my DAILY routine: • Stairmaster (45 mins) • Battle ropes (3 sets) • Abdominals (3 sets) • Planks (3 sets) • Push Ups (3 sets) • Kettle Bell (3 sets) She got back to me and told me the cardiologist said, "just don't do anything that makes you grunt." Ummmm....okay....hmmmm. I prodded a bit regarding my routine, but got nowhere. So I hung up confused and feeling a bit lost. All that being said, if anyone is familiar with those exercises and can connect-the-dots to my situation, I would be extremely appreciative. In the meantime, I will be searching for a new cardiologist.

Steve Farthing Some docs believe surgery should be delayed until obvious symptoms arise. Other docs believe surgery ... Read more

Steve Farthing Some docs believe surgery should be delayed until obvious symptoms arise. Other docs believe surgery should be done, if possible, before symptoms arise, especially if the heart (such as the left ventricle) is enlarged. We, the patients, are often left to sort that out. If you are so inclined, you could get another opinion from another cardiologist or ask the current doc if surgery would be 'reasonable' which might elicit a fuller explanation. Of course, keep researching.

John Palumbo thanks steve!

Daniel Kung Hi John: Dr. Stewart fixed my aortic valve and replaced my ascending aorta with Dacron Stent graft la ... Read more

Daniel Kung Hi John: Dr. Stewart fixed my aortic valve and replaced my ascending aorta with Dacron Stent graft last Wednesday. At this point, unfortunately, I am still in Mt Sinai trying to get the excess air pockets out of my chest wall & lung. One surgeon I'd recommend you to see is Dr. David Bavaria who is the chief heart surgeon at Upenn. He is another surgeon who has plenty of experiences in repairing aortic valves. But please be aware that it takes a very long time to schedule an appointment with him.

However if you do decide to go with Dr Stewart, I'd suggest you talk to Dr. Tara Nabi at Mt Sinai. She is very good & personal. Most importantly, choosing her will make your recovery much easier. She is the recovery floor Cardiologist I see her everday.

Finally, I do believe for OHS, it's much harder to think or plan for it than the actual surgery, especially for young & healthy person like you.

Best of luck!

Phyllis Petersen If you can't get a more definitive answer, you may want a second opinion. My cardiologist was very cl ... Read more

Phyllis Petersen If you can't get a more definitive answer, you may want a second opinion. My cardiologist was very clear that because of the way my regurg progressed, I was not restricted, but that I did need surgery sooner rather than later. His office was also very helpful in getting my files to a surgeon at another hospital (Cleveland Clinic) for evaluation for surgery. You're in a good location for getting a top notch evaluation with just a little extra travel.

Eddie Patton I got pretty much the same. Basically it boils down to no heavy lifting, especially where you have t ... Read more

Eddie Patton I got pretty much the same. Basically it boils down to no heavy lifting, especially where you have to bear down, presses, squats, and so forth. The deal is by bearing down it will press on the valve and close it even more. You can't do any damage it's that you can get light headed and maybe pass out.

Eddie Patton The only thing on your routine would be kettle bells. Just depends on weight and exercises. Based on ... Read more

Eddie Patton The only thing on your routine would be kettle bells. Just depends on weight and exercises. Based on the other stuff I doubt it would be a problem. If you are going from ground to over head just don't get too heavy.

Clare Auten My doctors also said cardio was fine but no lifting.

Michael Bronshteyn I exercise myself similar to what you do. I would just avoid things like very heavy weight lifting, ... Read more

Michael Bronshteyn I exercise myself similar to what you do. I would just avoid things like very heavy weight lifting, bench press. Something what you struggle with.

Stephanie Jones happy belated birthday! We are close in age, I'm 45. I'm 2 weeks post op. (mitral valve repair /st ... Read more

Stephanie Jones happy belated birthday! We are close in age, I'm 45. I'm 2 weeks post op. (mitral valve repair /sternumotomy for severe mitral regurgitation with pulmonary hypertension) I was a runner, and am looking forward to when I can start cardiac rehab and get back to running. As far as a great surgeon in NJ, I went to Dr. Saunders at Newark Beth Israel. I chose him because I asked my (awesome) cardiologist, Dr. Kate, who he would go to. and he said Dr. Saunders was one of the best in our nation. you can learn about him here: http://valve.barnabasheart.org/craig-r-saunders-md---cardiac-surgery.html

Craig R. Saunders, MD - Cardiac Surgery

http://valve.barnabasheart.org/craig-r-saunders-md---cardiac-surgery.html

Newark Beth Israel Medical Center 201 Lyons Ave Newark, NJ 07112

John Palumboposted a journal

3336 days ago

First of all...thank you for all the kind messages and information. Signing up for this site was the best thing I've done in a looooooong time! So, yesterday ...Read more

First of all...thank you for all the kind messages and information. Signing up for this site was the best thing I've done in a looooooong time! So, yesterday I was tossed into the MRI machine for an hour and 15 minutes and got THREE MRIs in a row (the "breathe in...breathe out...hold your breath" thing really gets to you after a while - phewww). Today my cardiologist called to let me know that I do, in fact, have a bicuspid valve. In addition, my aorta is slightly enlarged (but nothing to be concerned about at this point)...and my aortic root is looking good. All that being said, I have to head back in to see my cardiologist in 6-months, unless I start getting symptoms. Doc said to keep up the regular exercise routine, because this will help me quickly know when symptoms occur. He ended the call by reiterating that surgery would be inevitable...but I "wouldn't be getting it as a Christmas present" (bad joke, but I'm not a big fan of docs who moonlight as stand up comedians anyway - hah). One thing he did ask is if I have siblings. I have two older sisters (56 and 55...yes, I was a "mistake") and he said they should go in to see if they are bicuspid as well. I would have thought they were in the clear since they are in their mid-fifties -- wouldn't symptoms have occurred by now? My biggest issue right now is I am self-employed and have single-person coverage through Horizon Blue Cross Blue Shield. The surgeon I really want to see (Allan Stewart, who is featured on this site and many people have mentioned to me) is at Mt. Sinai in NYC and Horizon does not have a single-person plan that allows you to go out-of-state. Frustrating...but I have time to figure that out. So...there you have it. I hope all of you enjoy the holidays! And thank you for the ongoing information and support. -John

Amy Steele John - Believe it or not, you're one of the lucky ones. So many people have bicuspid or stenotic aor ... Read more

Amy Steele John - Believe it or not, you're one of the lucky ones. So many people have bicuspid or stenotic aortic valves and don't find out about it until they suddenly drop dead. I'm 52 and have had to undergo testing for my heart since the age of 2. I just underwent aortic valve replacement (bicuspid aortic valve), aortic root replacement and aortic aneurism repair 9 weeks ago. I knew everything about my stenotic valve and the fact that my heart is extremely healthy otherwise. Knowledge is power... It sounds like you are doing all of the right things, and believe me you will know when you're getting close to needing surgery. At that point, you'll want to feel better and surgery doesn't seem like such a bad thing. I kept myself very active up until a few months before surgery. It got to the point where I would be so tired for the rest of the day if I exercised that I wanted to get surgery over with and move on to a healthier life. Don't hesitate to ask questions here... There are many who have been where you are now and have lots of great information and encouragement to share. Have a wonderful Christmas season.

Civita Fahey Hi John I'm somewhat in the same boat as you, I have not had surgery yet, but, was told 6 months ago ... Read more

Civita Fahey Hi John I'm somewhat in the same boat as you, I have not had surgery yet, but, was told 6 months ago that I had moderate to severe aortic stenosis due to a biscuspid valve. At the time I had no symptoms, but, I did get winded after my boxing class, so they were starting and I refused to believe it.( I had been watching for about 3 years) I was told that within the next year I would need surgery. I still have the same type of symptoms, winded going up 2 or so flights of stairs and get a bit more fatigued. I saw a surgeon just a month ago and he feels that since I am starting to get symptoms, and so far on echo my heart looks good, I should get it done sooner rather than later, roughly 3-6 months. I got the same joking type when he said "you cant skirt this" its going to happen.. So, I'm planning on sometime in April so that I can hopefully rehab with walking in the Boston spring as opposed to the winter.. My advice would be keep a close eye on your symptoms and give in to the fact that they are there (if they are) and pray that we have successful outcomes. I also was told to have my siblings have an echo. One did and she was clear, the other will be doing it also ( both in their 50s). But, the doc said I could be just the one that drew the short straw in the gene pool. (at least when it came to heart valves).. This group is amazing, Amy who also responded to you has been a great source of comfort and information for me as she has gone through this..Remember we got this.. we will be ok.. Best Civita

Stephanie Jones https://www.youtube.com/watch?v=eqUmPQ3BMdo

John Palumboposted an update

3348 days ago

Chris Vereb, Cathleen Weed, Shannon Gray and 1 other reacted to this

Brand new to this group...I'm looking forward to learning and sharing...and, well, coping. First off, Happy Thanksgiving! I'm 47 yrs old and found out about ...Read more

Brand new to this group...I'm looking forward to learning and sharing...and, well, coping. First off, Happy Thanksgiving! I'm 47 yrs old and found out about two weeks ago I have mild aortic stenosis and moderate aortic regurgitation. They believe it may be due to a bicuspid valve, but that won't be confirmed until I have an Magnetic Resonance Angiography (MRA) which is being scheduled. Of course, according to my cardiologist, it really doesn't matter if it is bicuspid or not...surgery is ineveitable since I have the stenosis and regurgitation. Not the news I expected since I work out daily (50 mins on the big ol' stairmaster and machines). Anyway, here I am...a whole new world...and hopefully some new, supportive and interesting friends. That's it for now...again have a great Thanksgiving and thanks for having me.

Jim Whipple Hi John, yeah seems as if it doesn't matter how we feel or how we treat our bodies. If I did not go ... Read more

Jim Whipple Hi John, yeah seems as if it doesn't matter how we feel or how we treat our bodies. If I did not go to the doctor on a regular basis I would have never known there was a problem. They have been watching my aortic valve for about 10 or 12 years and it now time to do something. Scheduled for surgery on December 5th. Just keep on top of it and do your research is all I can say. You have a Happy Thanksgiving also.

Chris Vereb Welcome. I'm 51. You can look at my things I've been posting. Ask anything too.

Lila Richards Welcome to the community! I'm 55 and my bicuspid aortic valve replacement was out of the blue too! I' ... Read more

Lila Richards Welcome to the community! I'm 55 and my bicuspid aortic valve replacement was out of the blue too! I'm 5 weeks post op...This community was a godsend to me and helped me every step of the way! You'll read an enormous amount of info, stories, and opinions. Don't be shy, if you have questions, or need advice, please don't hesitate to ask! Best of luck on your new journey! 🤗❤️

Cathleen Weed Hi John! The fact that you love fitness will help you so much in recovery 💪🤓. Have a Happy Tha ... Read more

Cathleen Weed Hi John! The fact that you love fitness will help you so much in recovery 💪🤓. Have a Happy Thanksgiving! You've found a good site here !

Phyllis Petersen Being in good shape can give you more options. It sounds like you may have some time before surgery, ... Read more

Phyllis Petersen Being in good shape can give you more options. It sounds like you may have some time before surgery, so read up on surgeons, hospitals and techniques, plus all the experiences of people in this community. The more you know, the more confident you'll feel when the time comes.

Bob Brehm Being a "youngster" should make a speedy recovery. I got the same news when the Doctor said " we kne ... Read more

Bob Brehm Being a "youngster" should make a speedy recovery. I got the same news when the Doctor said " we knew this day would come" - but it was too soon. Oh well, he also said that aortic valve replacement is one of the procedures that is usually 100% curable so rejoice in the new life on the other side!

Dwight Miller Hi John, you are young and in good shape and should do very well. The community here is great and is ... Read more

Dwight Miller Hi John, you are young and in good shape and should do very well. The community here is great and is a valuable support network that can help you threw this. I just had my Aortic valve replaced Nov 2nd and doing great so far.

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