News Feed For Patients With Heart Valve Disease

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John Cook I was bumped back 2 weeks because of someone else’s emergency surgery. I didn’t like it but under ... Read more

Richard Munson Sounds like they are in charge of your health care, not you. Should be the other way around.

Susan Lynn Darren - Nothing will happen without your permission. But, if you're dissatisfied with your last ex ... Read more

J Alexander Lassally Switching the surgery type without your knowledge sounds super shady ! Get to the bottom of that and ... Read more

Rose Madura I see a lot of red flags here. You should seek out a second opinion and you must be your own advocat ... Read more

David Buchanan The trial centre day 1

Marie Myers Bless you on your journey!

Dan Fouratt Good luck on your journey.

Susan Lynn Thank you for your participation in this valuable research! Please keep us posted.

Kimberly Eisenhut Wonderful news!

Shaun Bloodworth Good Luck Mate. I am in Toowoomba, Australia. Where are you?

Rose Madura Interesting. Please keep us updated.

Valerie Allen Yes I would say similar. Was always on high dose BP meds and after surgery have needed ongoing attent ... Read more

Lisa Silverman Thank you Valerie! It helps to know others have experienced this.

Kimberly Eisenhut Wow, I have not had surgery yet, but my bp can go down to 90s over 60s at times, but just recently st ... Read more

Maureen Hoganson Hi Kimberly - I am so sorry to hear about your allergies/sensitivies! That is good that they were abl ... Read more

Melinda Donahue Oh no!!! How did you find out you were allergic to nickel? Aren’t there any other metals that are u ... Read more

Kimberly Eisenhut Maureen,
Most of the devices ar a nitinol (nickel/titanium). I am not allergic to titanium, but the nickel can possibly leach I guess. The manufaturer actually says if you read your specific device that ifyou have a nickel allergy it is contraindicated in using the device. You can look up the exact ingredients in your device to find out. I am just surprised that everyone is not tested for metal allergies before any inplanted device for anything, not just heart valves. The allergies to componants can cause adverse reactions and complications after, whether it shows up in a few days or months. Not to wory anyone, but it is just good practice for Drs and Surgeons to be proactive before implanting these things. I also know a lot of people allergic to nickel. I am glad I did not have the knee replacement they wanted me to have last year because when I looked into it, I realised that they also use a lot of the same things. My mother did great with her two knee replacements, but she has no skin allergies.
There really are not any other devices that can be used that are FDA approved or other trials at this time for nickel free options that I can find. I will find out Monday what they are thinking for my situation, maybe open heart repair?
Melinda,

"Patch Testing" is from either an allergist or dermotologist that does it, is how you find out things you are allegic to. I just had it done because I mentioned it in MyChart and saw the trial they wanted me to get into had a device with nitinol in it, so asked for testing.
I have known I had allergies to nickel from my teen years whenever I would wear costume jewelry or even higher end jewelry, as so many things contain nickel. I was not given any testing back then, but family Dr saifd that was what it was. Thosw were the days when your family Dr would diagnose you and not always send you to a million specialists. I had a platinum wedding ring when I was married (divorced for 14 years now) and have been able to find other jewelry like rings and make my own earrings from surgical steel hooks (even those can contain a little nickel, but I never wear earrings overnight). The surprising thing is that the testing found a much stronger allergy to gold (Goldsodiumthiosulfate, found in electronics, ceramics, dental and jewelry) and something called pottasium dicyanoaurate (found in dental fillings, jewelry and electronics) Most of the devices for valve replacements have some form of nickel, which I am less allergic to, but did show a mild reaction at one week follow up after patch testing (delayed reaction).

Melinda Donahue Don’t they use titanium ?

Marie Myers Because Nitinol (a titanium/nickel alloy) is used in medical devices due to its shape memory and sup ... Read more

Melinda Donahue I see

Melinda Donahue Thank you

Melinda Donahue Thanks so much I will write these down now.

Richard Munson Yes, important to write them down and bring it with you. Easy to forget once you get in the meeting. ... Read more

Melinda Donahue Thanks Richard - my appointment is on August 13 - I know I sound like a big baby but just so petrifie ... Read more

Robert Miller I had surgery with Dr. Castro but that was at his "old" location at Sequoia. He is amazing and in my ... Read more

Kate Watson Thank you, Robert! I had a much better consult with him than the big wig at Stanford. Dr Castro assur ... Read more

Robert Miller Big wig = Dr. Woo? Dr. Woo's staff was very nice and actually a lot more informative than Dr. Woo him ... Read more

Kate Watson Haha yes that's the big wig I meant. I don't like talking bad about people either especially because ... Read more

Richard Munson Scared is normal but by taking control of the situation is the answer. Maybe they can repair the valv ... Read more

John Cook It is scary at first. I felt numb for about a week when I was told it was time for surgery. I was able to take comfort in the fact that the risk of surgery and the recovery process is so much better now. At a high volume facility, which Mr. Sinai has to be, the risk of surgery is less than 1%.

I had my Ross procedure surgery 27 days ago and I’m already back to doing 2-mile walks around my neighborhood.

One of the main reasons doctors recommend surgery a lot earlier than they used to is because patients have much better post-surgical outcomes with early intervention (severe stenosis or regurgitation and minimal or no symptoms).
... Read more

Melinda Donahue thank you for your comments Richard and John. Richard, thankfully it will be (I'm told) repair, so t ... Read more

Robert Miller Yes, get this taken care of sooner than later for many reasons. The older you get the harder surgery ... Read more

John Cook It’s okay to be scared. There will be difficult times but you’ll get through them just as I and everyone else on here did. And the good news is those difficult times are usually short in duration.

- I was in ICU for 5 days, 3 of them were very difficult.
- I was in a regular hospital room for another 6 days, most of them were good days. (11 days in hospital is longer than most people).
- The next 7 days I had both good and bad days while I adjusted to being back home.
... Read more

Melinda Donahue Robert I am asymptomatic right now with inklings of afib appearing which is why my cardio is sending me for a surgical consult. Your comment definitely resonated.

John why did you have stay in icu so long ?Why was it so difficult ? What happens if you do
not mind me asking

... Read more

Robert Miller @Melinda I was asymptomatic also but then things did go south quickly. In any case, when you get surg ... Read more

Melinda Donahue I will thank you. - what they will remove ?

Melinda Donahue I feel like this is the only place I can ask very emotional questions to because you are all probably ... Read more

John Cook Melinda,

There were 2 issues: The first is I had edema problems going into surgery from recently diagnosed Psoriatic Arthritis. I put on another 16lbs of water after the surgery.

I don’t really remember the first 2 days in ICU. But the 3 really tough days I remember, I was on diuretics and had water restrictions to force me to lose all that water fast. The diuretics affected my kidney function. My electrolytes kept dropping because I was flushing so much fluid out. If my electrolytes dropped too much, I’d go into V-tach. They wouldn’t move me out of ICU until I reached my “dry weight.” I ended up dropping 21lbs of water by the time I left the ICU. I had to apologize to several nurses after I stabilized because I was not a fun guy to be around for those 3 days.
... Read more

Melinda Donahue Oh my goodness! John I hope you continue to improve please watch the sodium. Thanks so much for shari ... Read more

Melinda Donahue My appointment got changed to 7-16 due to a cancellation.

Fidel Martínez Ruiz Good night, here 23.03 p.m. and trying to sleep at 100 F .

Richard Munson They must have a.c in spain. And thats no toro.

Fidel Martínez Ruiz I prefer fresh air more than conditioning and free "toros", but running on the field. Anyway, spanis... Read more

Marie Myers You guys are so funny!

Fidel Martínez Ruiz And you Marie, so kind

Richard Munson I have never met a bull ,only spread a bunch but i am told they can be quite ornery. Cannot say i am ... Read more

Ana Brusso Dear Shaun, welcome to our site. If you read our posts you can tell we have all gone through the stag ... Read more

Rose Madura My friend, Ana, gives food advice. Try to remember that the odds are in your favor. For me, doing a ... Read more

John Cook Good luck with your surgery.

I had up days and down days pre-surgery for my aortic valve. Even ... Read more

Glenn Tremper I'm on the same journey, Shaun. I appreciate the insights of Ana, Rose and John.

Fidel Martínez Ruiz Hi Shaun, I agree with former insights, and add that you try to arrive into the surgery with a good ... Read more

Richard Munson I like the fish

Ana Brusso Thank you Richard 😂

Richard Munson Thats an aussie fish, i prefer swedish fish

Susan Lynn The worst part is waiting for game day! I didn't find any part of the surgery or recovery more chal ... Read more

Shaun Bloodworth Thanks Guys and I will update as I proceed in this journey. I am having an invasive angiogram in 2 w ... Read more

Robert Miller It looks like you did all your research. Make sure you read the learning center on this website. The ... Read more

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