Elyse's Journal

Good morning, Heart Valve Warriors!
Question for all of you: I had a SAVR at Cleveland Clinic in January 2021 and am doing well; you have all been a blessing from the beginning of my journey clear through to the “other side” and recovery.
i just learned I have a blocked carotid artery (some people have all the fun) and will need surgery. Have any of you had this surgery and can offer any guidance (doctors, hospitals?). I plan to email Adam and ask him as well. TIA for any assistance you can offer.
Elyse

Has anyone out there had screws from their sternal plates retract? I am 1 1/2 years post op from AVR and this is happening to me. I have a bump in the middle of my chest where the screws are coming out, but my sternum has long ago fused. Anyone else have this issue and how have you dealt with it? Cleveland Clinic says it’s no problem and that they can make a small incision and remove the screws, replacing them with larger screws so that this does not happen again OR with no screws at all.
TIA for any advice from those who have had this issue.

Hi, there! I am an aortic valve replacement veteran from 01/15/2021. I feel great but 2 of my sternal screws are backing out (I had an X-ray an this issue what the radiologist’s report stated) and I have a hard bump in the middle of my chest.
Has this happened to anyone else? If so, what did you do about it? TIA for any help you guys can offer!
Continued good health to you all…
Elyse

I am a little over a year past aortic valve replacement surgery. I am not in pain and feeling generally great except for the fact that I have a small bony bump about an inch down from where my incision started. In addition, the top area of my chest (left and right sides) doesn’t feel as it did before, a sort of “tingling semi-pain” feeling. Has anyone else experienced this? Maybe I’m unrealistic but I expected to always feel like I did before the surgery without any after effects at all.

Good morning! I am one year post aortic valve replacement at Cleveland Clinic. I sometimes feel a “sticking” inside my chest (both sides, left and right as well as center) as if the sternum repair has rough edges and is scratching me. Has anyone else had this happen? It isn’t constant, only sometimes. Thanks in advance and hope everyone is doing well 😊

Good morning, Heart Warriors! Yet another question for you guys...I am 4 weeks post AVR and was expecting a faster recovery, possibly unrealistically. I was in great physical shape and asymptomatic going into surgery and was told by my surgeon I’d “ready to resume normal activities” in 6 weeks. I went for my 4 week check up yesterday at my cardiologist’s office and was told that complete healing of the sternum doesn’t take place until 12 weeks and I’d have to sleep on my back until then. It still feels uncomfortable. Anyone else have this issue? TIA for your help, I’m frustrated.

Yet ANOTHER question for you guys...did anyone else experience tightness in their sternum after AVR? I know the sternum is broken during the procedure and has to be either wired or plated back together, just want to make sure what I’m feeling is “normal” and you are my incredibly awesome barometers! Please let me know, and I thank you all from the bottom of my no longer 💔!

If anyone is considering the Ozaki procedure for AVR, feel free to contact me. I had this procedure done on 1/15/21 and can hopefully answer any questions you might have.

Hi, Heart Valve Family! I am 12 days post AVR. When does this tiredness stop? Is this normal? Am I being too hard on myself? The simplest of household chores seems to wind me!

Had my AVR Surgery by Drs. Unai and Petterrsson rat the Cleveland Clinic on Friday and just got to their step down unit last night from ICU so o couldn’t write until now. They performed the Ozaki procedure, which is relatively new here but used almost exclusively by Dr. Ozaki and other cardio thoracic surgeons in Japan with great results. Instead of using a cow valve, they fashion a custom valve from the pericardium of your own heart. The projected result is the shelf life of the mechanical valve without the blood thinners necessary due to the non-calcification of the valve! Feeling somewhat sore but ready to start thread today!

Had my cardiac cauterization today and you were all right, my Heart Valve Family...my anticipation was a lot worse than the actual procedure. And the good news was that there were no blockages! My everlasting thanks to you all, I could not get through this process without all your support ❤️

Heading out to Cleveland Clinic today for AVR on Friday! Lots of pre-surgical testing, including cardiac catheterization this week on Wednesday. Has anyone had this who can share details? Again, thanks to my Heart Family here for your support, I couldn’t do this without you guys! 💔

I can’t believe that in one week, I will be in the OR of Cleveland Clinic getting my new aortic valve! It’s been a “process” but thanks to the support of all of you, it has been far easier than it might have been, and I thank you from the bottom of my 💔! I’ve asked this before but haven’t received any response, so I’ll ask again - has anyone had the Ozaki Procedure done? Please let me know and thanks!

Hi out there, Heart Valve Family! Hope everyone who has had their surgeries are on the mend and feeling better! Has anyone had the Ozaki procedure done at Cleveland Clinic (or anywhere else)? It’s a procedure for AVR that uses your own pericardial tissue to fashion the valve, as opposed to a porcine, bovine or mechanical valve. It supposedly lasts as long as the mechanical valve with no blood thinners necessary. Let me know and, as always, thanks so much for your support ❤️

Happy New Year to all my fellow Heart Warriors! I hope 2021 is a good one for you all! How have all of you dealt with pre-surgical anxiety? I was kind of okay until it started getting closer to the New Year (my AVR surgery is on 1/15). The flipping over to 2021 made this a reality for me and I’m having sporadic panic attacks. I’m usually a strong person but, as I am asymptomatic, I’m having difficulty wrapping my head around this surgery, though my echo and cardiac CT Scan readings put me past the “severe” into the “critical” range. Friends and family tell me that I’ll “feel better after the surgery is over” but I’m not feeling badly now. Since the surgery is two weeks away, I’d assumed I would be more committed and at peace about it at this time, but I’m not. Has anyone else experienced this? My apologies for rambling, but I have no friends or family members who have been through this and nobody knows what to say to me to make me feel better. TIA, if I didn’t have you guys, I don’t know what I’d do.

Has anyone needed an AVR who had absolutely no symptoms? My echo readings and cardiac CT readings are off the charts and I'm considered "critical". Everyone tells.me.I'll " feel so much better after the surgery" but I feel.fine now. I'm a very active 66, walk 5 miles per day at a fast clip and play pickle ball. Before COVID closed the gyms, I would go for 7 hours per week. Has this happened to anyone else, needing the surgery with no.symptoms!s?

Did anyone feel like they had pre-surgery brain once you were scheduled for surgery? I feel like I can’t keep my mind straight or focus on anything except for the upcoming surgery! Ugh.

Good morning, fellow Heart Warriors! Hope all of you are doing well and wishing a speedy recovery to all who have recently undergone surgery. Has anyone heard or or had the Ozaki procedure for aortic valve replacement as a result of critical aortic stenosis? I have a choice to have this done at Cleveland Clinic (as opposed to traditional AVR with bio prosthetic valve) by Dr. Unai and Dr. Pettersson. Also, has anyone had surgery with either of these surgeons and, if so, what did you think?

Good evening, everyone! I hope you are all feeling well. Has anyone had their aortic valve replacement procedure at Cleveland Clinic? If so, who did you use and were you happy with the results?

Hey, fellow heart family members! Hope all that have had their surgeries are on the mend, feeling good and getting back to a great quality of life on the other side! I have a question for all of you...is anyone familiar with the Ozaki procedure for aortic valve replacement? They are proposing this procedure for me at the Cleveland Clinic where a small section of ones own pericardium is used to fashion a precise fitting valve to replace ones stenosis old valve. They’re telling me that this valve would last 15-20 years, like a mechanical valve without the use of blood thinners. The surgeon at CC has performed 70 of these procedures with good results. Has anyone had this procedure done or used the team of Dr. Usai and Dr. Pettersson at Cleveland Clinic for this or any other procedures? Thank you all, and when I am on the other side, I hope I can be as much help to you all as you have been to me 😘

Hi, fellow heart family members! Has anyone had the Ozaki procedure for aortic stenosis? Cleveland Clinic is proposing this surgery for me as opposed to the traditional SAVR because the valve is fashioned from your own pericardium and the life expectancy is that of a mechanical valve with no blood thinners needed.

Good morning, fellow heart valve peeps! I have a question which I’m sure many have had before. I’m being evaluated for a TAVR and I’m a young, otherwise healthy 66 year old gym rat. Everyone I’ve met with is recommending the SAVR procedure due to my (relatively) young age and good health. What I don’t understand is that they’re telling me the valves with the TAVR do not last as long and that the procedure will have to be repeated if I go this route. I will probably also have to have a repeat procedure with the SAVR as well, so why not go with the less invasive TAVR now with faster recuperation and have a second TAVR later? Is there something I’m not “getting”? TIA for any information you can give me. Also, I plan to have whatever procedure is decided upon at the Cleveland Clinic. Has anyone gone there and used a surgeon, either for TAVR or SAVR that you thought was amazing? Thanks again! Elyse

I’d like to start by wishing all that are about to undergo surgery the best of luck and good wishes for a great outcome and those who are on the other side continued good health. I’m facing aortic valve replacement for aortic stenosis and am getting conflicting advice from my current cardiologist, his PA and my prior cardiologist in CT (I now live in N.C.). My prior cardiologist says that, since I am asymptomatic, I don’t yet need the procedure. My current cardiologist referred me to their “structural heart department” where I was just told I needed the procedure sooner rather than later due to my age (66) and the pressure reading on the echo (67 mm Hg). They also just told me I would not be a candidate for TAVR since the valve does not last as long and will be looking at open heart surgery. They are unable to tell me whether I’ll need open heart/open chest or minimally invasive. I am terrified and feel very lost. Has anyone here had experience with Cleveland Clinic, Duke or New York Presbyterian? Has anyone used surgeons In these hospitals they really liked and got good results? Please let me know, I feel more confused than when I started and this PA just confused me more in addition to scaring me silly. TIA for any assistance anyone could offer.

Good evening! Could anyone tell me the benefits of having SAVR over TAVR? It doesn’t seem that there are many, but I’m at the beginning stages of self-education, so I’d appreciate any in put you guys could offer. TIA!

Good morning...hope everyone is doing well. I can’t tell you guys how much I appreciate my new “family”! Could anyone clarify this matter for me...if TAVR is so much less invasive, has a shorter recovery time and has less chance of infection than open heart aortic valve replacement, why isn’t this procedure done all the time? Why is it done on the “older” and “more compromised” patients? It seems that the two procedures should be the other way around. What is the down side of TAVR as compared to open heart valve replacement surgery? TIA for any information you can offer! Elyse

Good morning! Thank you for the quick responses to my last query and best wishes to all of you who are soon going through surgery and continued Recovery success to all who have been through it. Again, just starting out And have a question...when is open heart surgery done for aortic stenosis and when is TAVR done? I’m on my second opinion and getting very confused! As always, TIA for your help! I feel like I’m getting a new “family” in all of you and can only hope I can provide similar guidance as I move along in this process!

Hi, everyone! I’m brand new to the heart valve surgery community. Though I knew I had an aortic stenosis, I was just categorized as “very severe” and surgery is imminent. What could anyone tell me about cardiac catheterization? Though i understand that this is the first step, I don’t know why it is done and what the recovery time is. I also don’t know how it is determined whether a patient has open heart surgery or minimally invasive surgery through the groin for a valve replacement. Also, if anyone out there lives in the Wilmington, NC area, could you recommend a good cardiologist? TIA, everyone for your help. I’m quite anxious about this process 😬 Elyse