Anyone done a Ross Procedure? I did a prosthetic valve (Trifecta) in 2013, and told I need to replace it with surgery now -- and was advised to do the Ross ...Read more
Anyone done a Ross Procedure? I did a prosthetic valve (Trifecta) in 2013, and told I need to replace it with surgery now -- and was advised to do the Ross Procedure this time as long as everything goes well during the surgery. (Otherwise, they would resort to a prosthetic again...) Any input from this community would be greatly appreciated! Getting ready to do my Cardiac CT scan (with lots of pre-allergy meds) -- and worry about the contrast reaction! Once that is done, it will be time to schedule my surgery. Again, appreciate your thoughts!
susan harris there are some great videos on the learning center about ross. Dr El-Hamamsy had a couple good ones. ... Read more
susan harris there are some great videos on the learning center about ross. Dr El-Hamamsy had a couple good ones.
Grace Mason Hi Maureen, I had a Ross procedure a year and a half ago. I would definitely consider Ross at your a... Read more
Grace Mason Hi Maureen, I had a Ross procedure a year and a half ago. I would definitely consider Ross at your age. I highly recommend going to a Ross center of excellence where they do this procedure often as it is a more complicated surgery (though recovery is not much different than a single valve replacement). Check out Ross procedure org for a list of surgeons that specialize in Ross procedures. If you have other questions, I'm happy to give my best answer . I would get more than one opinion as well. I opted to go with Dr El-Hamamsy in NYC for my surgery. He is amazing! His whole team is wonderful! I was able to have a zoom consult with him within a few weeks of calling his office.
Maureen Hoganson Thank you so much for your input! I will have to check out the videso Susan -- and Grace -- Thank you ... Read more
Maureen Hoganson Thank you so much for your input! I will have to check out the videso Susan -- and Grace -- Thank you for the information on the Ross as well! Yes, I planned to get a second opinion -- and it is hard to know what to do based on the travel, etc. The surgeon I met with at Vanderbilt is the head of cardiac surgery -- and he has done most of the "re-ops" from my retired surgeon (Dr. Petracek) -- who was world renowned. Vanderbilt isn't one of the top Cardiac Centers for the Ross, but I do think the surgeon is well qualified, so will get a 2nd opinion and weigh my options for travel, etc. It is a little scary that you have to watch tow valves, but they are live valves that could last my lifetime, so definitely worth trying this from everything I have researched! Thank you again!!!
Grace Mason I would ask the surgeon you talk with how many Ross procedures they have done, whomever you consider. ... Read more
Grace Mason I would ask the surgeon you talk with how many Ross procedures they have done, whomever you consider. If less than 100, I would continue looking. My surgeon does a Ross several times a week, for example, and probably somewhere around 700 over his career now. I think it is a little worry that there are two valves to watch now but I felt the benefits outweighed that concern. My hope is that this correction of my bicuspid is the best option for lasting longer than a tissue valve and with less risks from clots and the risks that accompany blood thinners using a mechanical valve. My aortic valve is a live valve which is great because it has the greatest pressure. My pulmonary valve was replaced with a donated valve but it is not living, but inert, like a tissue valve (no rejection issues) but it sees much less pressure than the aortic valve so it should last longer in that position.
Maureen Hoganson Thank you for that advice! Yes, we went to ask him -- and while he seems to have done a lot of proced ... Read more
Maureen Hoganson Thank you for that advice! Yes, we went to ask him -- and while he seems to have done a lot of procedures, definitely want to know how many! I didn't even think Vanderbilt was an option for this, but seems that they do the Ross Procedure more regularly. My retired surgeon didn't offer this as an option last time in 2013 -- and still had kids in school, so we opted for the tissue valve b/c I can't take bloodthinners and am chemically sensitive. The current head of surgery said that they have worked through a lot of issues with the Ross at this date in time -- and that is perhaps why my other surgeon did not offer that last time (b/c there were still some issues.) Did you do the titanium plates instead of sternal wires this time?
Grace Mason Yes, I requested the Sternalock Blu titanium plates. They do not normally do them at most hospitals(e ... Read more
Grace Mason Yes, I requested the Sternalock Blu titanium plates. They do not normally do them at most hospitals(except at Franciscan with Dr Gerdisch), unless you meet certain criteria. I didn't, but one of my consults I did before my surgery was with Dr. Gerdisch in Indianapolis. I learned about the plates from him and read more about them here on Adam's site, as well. Dr Gerdisch doesn't do Ross procedures but he did give me a couple of names of surgeons if I was interested in a Ross, the first one being Dr El-Hamamsy. Once I talked with him I felt really certain he was the one I wanted to do my surgery. Dr Gerdisch said if the plates were important to me I should talk to the surgeon about that as an option beforehand, so that is what I did.
I don't think a Ross procedure was as much in favor 10-12 years ago, mostly because it's a more complicated surgery and most surgeons just don't have the training. Now that there have been more studies, since they began doing them, showing that it can offer recipients a great long-term outcome, there are more centers and surgeons learning and performing them. I know Dr El-Hamamsy travels all over and shares his expertise.
Glad you are getting several opinions and asking lots of questions, especially since you are chemically sensitive.
Maureen Hoganson Thank you so much Grace! This is such helpful information. They just told me they do the titanium pla ... Read more
Maureen Hoganson Thank you so much Grace! This is such helpful information. They just told me they do the titanium plates now instead of sternal wires (which I have) -- and will have to research the Stenalock blu plates! You are so knowledgeable and can tell you have done your research! I really do have more questions that I need to ask and am still really worried about getting through the CT scan with iodinated contrast dye! I can tell that I am becoming more symptomatic -- and I know the Trifecta valve I have has outpeformed most, even though it was the "up and coming" valve when I had it replaced. They are concerned it could tear, so likely looking at surgery ASAP once I get through the CT scan. I still plan to do the 2nd opinion with Dr.Johnston/Northwestern -- and wonder if I should reach out to additonal specialized heart centers. The traveling would be difficult as I mentioned, but it if is worth it, we will have to work that out! Thank you again for the advice -- and hope you had a wonderful Easter!
susan harris ross is a specialized procedure and surgeons who don’t do it don’t recommend it. or suggest issue ... Read more
susan harris ross is a specialized procedure and surgeons who don’t do it don’t recommend it. or suggest issues with it. do your homework and make an informed decision. you got this!
Maureen Hoganson Thanks Susan. Yes, it was recommended to me by the head of cardiac surgery at Vanderbilt and the surg ... Read more
Maureen Hoganson Thanks Susan. Yes, it was recommended to me by the head of cardiac surgery at Vanderbilt and the surgeon is well skilled, but while Vanderbilt has been rated well, it is not listed as a specialized "Ross" center. I am also trying to get a consultation with Northwestern, but know traveling isn't easy after heart surgery (Since I live in TN.) I just had to reschedule my CT Angiography with contrast b/c while I am doing pretreatment for a reaction to the dye, I had to have a specialized plan due to my mast cell issues/chemical sensititivies. Hoping I can get through all of this before having any severe issues with my Trifecta valve (mine has outperformed and chance it could tear...) Appreciate your input!
Has anyone had a 2nd open heart surgery following a prosthetic valve replacement of a bicuspid aortic valve? I had my BAV replaced 11 years ago in my 40s with ...Read more
Has anyone had a 2nd open heart surgery following a prosthetic valve replacement of a bicuspid aortic valve? I had my BAV replaced 11 years ago in my 40s with a St. Jude Trifecta bovine valve. While I am not scheduled for surgery, we are closely watching that valve. (And hoping I don't "pass out" or have "new" shortness of breath" per my cardiologist.) I understand that the Trifecta valve did not perform as well overall as they expected in the general population, but I am thankful that mine has gone 11 years so far. Any advice or insight about a re-op would be greatly appreciated from any in the heart valve community! Thank you!
Kevin Boyle Hi Maureen, I am in the same situation. I had surgery for a bicuspid valve almost 10 years ago. I am ... Read more
Kevin Boyle Hi Maureen, I am in the same situation. I had surgery for a bicuspid valve almost 10 years ago. I am going in for an Echo on December 19th and then I am going to schedule my redo surgery. I have been monitoring the leaky valve since last April and I just want to get it over with and get the surgery. I can keep you posted. Good luck, Kevin
Maureen Zambuto Yes. I had a second open heart su4gery. My first also was for bicuspid aortic valve. First in 2008, s ... Read more
Maureen Zambuto Yes. I had a second open heart su4gery. My first also was for bicuspid aortic valve. First in 2008, second last year. I am doing great. I actually found the second surgery easier than the first. Perhaps because i knew what to expect. Hope this helps. PS I am 72 yrs. Old
Patricia Higgins Maureen - Yes, I had my first aortic valve replaced in 2008 and again in January 2024, both OHS. I ag ... Read more
Patricia Higgins Maureen - Yes, I had my first aortic valve replaced in 2008 and again in January 2024, both OHS. I agree, the second surgery was much easier. I had extraordinary care at the University of Washington Seattle.
Rose Madura Wondering if a TAVR is an option for you?
Maureen Hoganson Wow, thank you so much for your responses! First Kevin, sorry to hear about the leaky valve-- and hop ... Read more
Maureen Hoganson Wow, thank you so much for your responses! First Kevin, sorry to hear about the leaky valve-- and hope that all goes smoothly with your pending surgery! It is crazy how fast the time goes by...Hope that you find the best procedure -- and a valve that will last longer without issues, I would love to learn more about the Ozaki procedure, but may not be an option for a re-op. And Maureen and Patricia -- that is encouraging to hear that your second surgeries seem to go easier. Did you have the same surgeons / facilities each time (respectively)? And Rose, regarding TAVR, not sure that I am a good candidate for that but in the process of getting an out-of -state consult with a top surgeon to see what my options are. My cardiologist won't even refer me yet to see what next steps/options will be until I "pass out or have new shortness of breath." Not waiting on her for that based on my last echo -- and have had to learn to be my own advocate with health challenges. (Lyme, etc.) Thank you again for your responses!
Hi everyone! Doing well at 10 weeks post-op after replacing my bicuspid aortic valve with the Trifecta tissue valve--but wanted to see if anyone had issues ...Read more
Hi everyone! Doing well at 10 weeks post-op after replacing my bicuspid aortic valve with the Trifecta tissue valve--but wanted to see if anyone had issues with occasional irregular heartbeat. At 5 1/2 weeks post-op, I had issues with my hemoglobin and hematocrit being too low and had some early beats and a little atrial fib, but once I started taking my iron supplement, everything was great. At 10-weeks, I began getting a few early beats when I am resting. Rhythm is perfect while I am exercising (at cardiac rehab.) I am not taking any medications except for baby aspirin (81 mg), iron glycinate and my K2 supplement (as well as my probiotic supplements)--and was told that it takes time for the heart rate to even out after having open heart surgery. They said that the younger you are, the longer this can take. I am not on a beta blocker, so that may be part of it, too. I see my cardiologist in a couple of weeks--and her office didn't seem to be concerned about the irregular heart beats. Anyone else dealt with this? My sternum seems to be healing well--but definitely get sore muscles across my chest when I do too much. They say you can water ski at 3 months post-op, but I think it would take longer than that! Any feedback would be greatly appreciated! Thanks!
Hope everyone who reads this is doing well! I am now 7-weeks post op today after having my bicuspid aortic valve replaced with a prosthetic (bovine) valve. ...Read more
Hope everyone who reads this is doing well! I am now 7-weeks post op today after having my bicuspid aortic valve replaced with a prosthetic (bovine) valve. I feel like I have come a long way--and wanted to give an update! Per my 6-week follow up with my surgeon, I have been cleared to lift up to 20 lbs.--and allowed to drive with caution. The surgeon said that there is more risk for the first 3 months following a full sternotomy, so I am still limiting my driving. I am also attending cardiac rehab, which from what I can tell is monitored exercise. I am looking forward to getting back to kick boxing--and of course, hiking outside as it gets warmer. I already try to adhere to a no wheat, dairy, egg, corn or soy dietary regime due to food allergies/sensitivities--and honestly, some of the recommendations at rehab seem to be a bit outdated. I am a huge fan of coconut and its health properties--it is a good fat, so I encourage everyone to research this on their own. There are also plenty of studies on Vitamin K2 (not K1)--that are very encouraging for heart patients. Of course, i am still sore, but getting better everyday. Had a some issues with anemia following my surgery, but my iron glycinate supplement is working like a charm--and my heartrate has consistently been regular now. Just taking a baby aspirin--and hope to avoid a beta blocker as long as my heartrate continues to regulate (to a slower pace). Because I am 46--I do worry about the valve wearing out sooner, but am still thankful that something could be done--and that I went with a prosthetic valve. I am also thankful for my wonderful family and friends who have supported me throughout this journey--and of course, the expertise of my surgeon, Dr. Petracek at Vanderbilt. I pray for those of you in this patient community who are recovering, as well as those who are in the process of making decisions. Just know that you are not alone!!!
Well, it's Friday, December 13--and I'm still happy to be home despite a few ups and downs following my BAV replacement. I think I am doing really well, however, ...Read more
Well, it's Friday, December 13--and I'm still happy to be home despite a few ups and downs following my BAV replacement. I think I am doing really well, however, and just have to remember to take it one day at at time. I am scheduled for cardiac rehab next week, so am excited to get out of the house--and be able to exercise under controlled conditions. It's been so cold outside, that I've been walking circles on the first floor of our house--which our dog isn't quite sure about--I've asked her to "walk" with me--but she keeps going to the front door, LOL, and only did one or two laps with me! My sternum seems to get quite sore when I wake up in the morning--and then in the afternoon when my pain medication has worn off. Just trying to take Tylenol during the day--and one painkiller at bedtime. I guess it's all part of the healing process--and my incision seems to be healing fine, just a little bumpy and bruised at the top where it is still swollen. It's great not to feel "symptomatic"--the surgeon didn't take a picture of my valve, but said it definitely needed to be replaced. Thankfully, I didn't have symptoms until right before surgery. Can't wait to feel 100% and looking forward to having a valve that works right! I told my husband, I got a "Mercedes" valve just in time for Christmas! Good luck to those awaiting surgery--and my prayers go out to you and those recovering!
HI there--has anyone had trouble posting photos? I am not able to upload a profile picture--or post-op photos, so thought I'd ask. Get an error message every ...Read more
HI there--has anyone had trouble posting photos? I am not able to upload a profile picture--or post-op photos, so thought I'd ask. Get an error message every time... Thanks!
Good afternoon! Finally updating my blog, and I am pleased to announce that I am now home from Vanderbilt University Hospital following a bicuspid aortic valve ...Read more
Good afternoon! Finally updating my blog, and I am pleased to announce that I am now home from Vanderbilt University Hospital following a bicuspid aortic valve replacement! I had surgery on Wednesday morning (the 27th)and was able to come home Sunday afternoon. They would have let me go home earlier, but my surgeon requires at least 4 days post-op. We had a few bumps in the road, of course, and the biggest scare was me having such low blood pressure while I was in ICU which would cause me to be sick (enough said there...) Thankfully, we had an amazing nurse (Jeremy) on the night shift, who was able to help us out and got my blood pressure up enough to send me to CICU on Thanksgiving! I wouldn't choose to be in the hospital on Thanksgiving if I didn't have to, but we were so relieved and thankful beyond belief. The prayers and support of friends, family--and this heart community--were overwhelming. Again, there is no place like home--and was so happy to take a shower, drink a cup of herbal tea--AND feel like eating when I arrived home! I didn't do so well with hospital food--and am able to eat organic and healthy food, now which tastes amazing. Additionally, I am very thankful to only be on a baby aspirin for life and didn't even have to do short-term coumadin! I have a other meds to take over the next month, but nothing major!!! My husband and boys were troopers through all of this--and for that I am eternally grateful!!!!! Prayers to those beginning the journey--and continued prayers for those now recovering like myself!
As I'm preparing for my surgery tomorrow, I just want to thank the Heart Community for all your comments and support. Will try to update everyone when I can. ...Read more
As I'm preparing for my surgery tomorrow, I just want to thank the Heart Community for all your comments and support. Will try to update everyone when I can. The day went by so quickly--and I still feel like I have more to do,but realize it's time to focus and get packed. Thanksgiving Blessings to all!
This is a question that I keep asking myself--"Do I really need to do this now?" Of course, one opinion from the Cleveland Clinic--and my now surgeon at Vanderbilt--both ...Read more
This is a question that I keep asking myself--"Do I really need to do this now?" Of course, one opinion from the Cleveland Clinic--and my now surgeon at Vanderbilt--both confirmed "yes"--it's time to move forward. Was relieved to make it through the cardiac cath this week which I was very apprehensive about--but they were able to go in through my wrist--and other than some swelling, bruising and minor discomfort, I am healing up from that. My stenosis of the aortic valve area was .80 cm according to the cath, but still close to the .67 cm recorded on the echo several months back. My arteries look great, so should just be a valve replacement when they go in there. Part of me can't believe that I will be having surgery next week, but when I wake up on Thanksgiving, I hope to have a new valve that is working properly and celebrate my extended life with my wonderful family. I have been truly blessed and know the support and prayers of friends and family will see me through. Even though I am getting "cold feet", it's time to buckle up and get ready for the ride...
Well, my upcoming surgery is finally at hand--preoperative tests next week--and then surgery to replace my bicuspid aortic valve the day before Thanksgiving! ...Read more
Well, my upcoming surgery is finally at hand--preoperative tests next week--and then surgery to replace my bicuspid aortic valve the day before Thanksgiving! I'm still a little worried about having a cardiac catheterization, especially since I haven't had any other heart issues (thankfully)--but I do understand why they want to do this before performing open heart surgery. After much deliberation and research, we have chosen Dr. Michael Petracek at Vanderbilt to perform the surgery. He is one of the top surgeons in his field and chief of surgery at Vanderbilt, so the decision to stay close to home and family made sense. However, we are still thankful that we also got a second opinion from the Cleveland Clinic. (Both doctors were on the same page.) Still in the process of trying to get everything in order, but taking one step at a time as this journey continues. Very thankful for a supportive husband, sons, family and friends! Opted for a tissue valve even though I know I'll need a re-op at some point, but feel like this is the better choice for me. More updates to come...
I am from: Smyrna
I would definitely consider Ross at your a... Read more
I would definitely consider Ross at your age. I highly recommend going to a Ross center of excellence where they do this procedure often as it is a more complicated surgery (though recovery is not much different than a single valve replacement). Check out Ross procedure org for a list of surgeons that specialize in Ross procedures.
If you have other questions, I'm happy to give my best answer
I think it is a little worry that there are two valves to watch now but I felt the benefits outweighed that concern. My hope is that this correction of my bicuspid is the best option for lasting longer than a tissue valve and with less risks from clots and the risks that accompany blood thinners using a mechanical valve.
My aortic valve is a live valve which is great because it has the greatest pressure. My pulmonary valve was replaced with a donated valve but it is not living, but inert, like a tissue valve (no rejection issues) but it sees much less pressure than the aortic valve so it should last longer in that position.
I don't think a Ross procedure was as much in favor 10-12 years ago, mostly because it's a more complicated surgery and most surgeons just don't have the training. Now that there have been more studies, since they began doing them, showing that it can offer recipients a great long-term outcome, there are more centers and surgeons learning and performing them. I know Dr El-Hamamsy travels all over and shares his expertise.
Glad you are getting several opinions and asking lots of questions, especially since you are chemically sensitive.