Grace 's Guestbook

Sue Maize  Hi Grace and Ruth Joy—sorry to impose on your comment but did Rita Savelis pass away? If you’re able to send any details along, I’d be most grateful…smaize67@gmail.com. This makes me so sad. 💔

Grace Mason   Hi Sue,
I see you saw the original post Ruth so kindly shared in Rita's guestbook.(saw your post there)
Hope you are both doing well in the new year 🫂

Sue Maize  Yes, thank you Grace. Im doing well, not really embracing our bitter Canadian winter, but trying to get outside to walk anyway…some days I do, some I don’t.  How are you? I don’t come on as regularly as I used to do… less screen time has been good for me but I do   miss my HVS community and important updates like this one about our dear Rita. We had been corresponding privately for a while and I had hoped to visit her in France one day…there’s a lesson in there I’m sure. 😞

Grace Mason   Check Find member Rita Savelis and then  view her guestbook, Civita. 
Ruth and Susan posted some info regarding Rita.

Grace Mason   Hi Cleve,
We stayed at the Courtyard by Marriott New York Manhattan/Upper East Side. It was convenient to the hospital and I was able to use their gym scale to monitor my weight after surgery and the hallway on our floor to walk post surgery if it rained, or I just wanted to do a short walk. There were many places close by to walk for a general store or various food choices. The room was clean and functional and housekeeping and staff kept everything very nice. We were on the 15th floor so it was pretty quiet and the elevator was easy to use. It was about a mile from the hospital so we were able to walk from the hotel. We did take a cab after surgery and discharge but otherwise walked as it was September when we were there and the weather was really nice.
We stayed there a second time a year later when I went back for a visit and follow up because we were very satisfied with the accommodations.
We explored other options but a lot of rentals I looked at, when I looked at reviews, mentioned they were rooms where bathrooms were shared and often apartment elevators wouldn't function so we opted for a known hotel.

Grace Mason   I believe Sharon Behl might have found a VRBO rental in the area. You might want to look her up and see if she has a rental suggestion if you are looking for that as opposed to a hotel room.
A post from her at that time:
"Sharon Behlposted an update
770 days ago






Good Morning, for anyone looking for lodging near Mount Sinai Hospital in NYC, you may know that it is challenging this time of year unless money is not an issue. AirBnbs that are less than 30 days are now illegal in the city. We have booked and rebooked, but settled on a one month lease at a property managed by FurnishedQuarters.com Price per night is comparable to a NYC hotel and you get a real one bedroom with full kitchen and living room, elevator, and doorman/women on the upper west side a 20-30 minute walk or quick taxi ride from the hospital. Fingers crossed that it is everything the website says it is. Hope this is helpful to someone..."

Grace Mason   I am(and was) fairly active. Though, I was also pretty asymptomatic before surgery. I enjoy exercising 2 or 3 days a week, but my job is pretty sedentary. I stepped up some activities before surgery like doing a couple sets of squats each day and other core exercises that I thought would benefit me post surgery in dealing with the sternal restrictions, but nothing extreme. I mostly enjoy jogging, biking, and walking, but I think any physical activity is beneficial before surgery. I don't think you have to be a marathoner or anything, just raise your heart rate a bit.(if your doctor thinks it's ok). If you have been active since March I think that sounds great!

Grace Mason   Hi Valerie!
I'm glad to hear from you too!
I am doing well!
I'm glad you are going to be able to move forward with your knee replacement now and hope you have a good rehab program nearby for your knee recovery. 
How soon is your knee replacement?

Grace Mason   Yes indeed. One thing at a time! I will be thinking of you and sending good vibes that you "kick" the recovery in the butt😉

Grace Mason   Hi Maureen,
You are so welcome! I'm so glad to hear you are doing well in your recovery. That is great you are starting rehab soon. Hope you find it beneficial, and meet some nice people, too. I have a Dacron tube also, (replaced my aortic aneurysm). It's weird to think about it but I can't feel any difference. I will have to read about the Longitudinal stabilization, I had not heard of that before, but any additional stabilization sounds good.
Hope your CRP and EBV levels keep moving towards normal and your iron levels improve. Just that will probably make you feel much better.
You are a great mom looking out for your (grown) kiddos. My sons were both checked out around the time of my surgery too, and given a good report, but I think the doc thought they should get checked again when they are a little older. Mine were 16 and 19 at the time, I think.
Your brothers are lucky they haven't needed intervention. If they do they will have you and your expertise!
Keep taking care of yourself and keep us posted on your progress! Take care❤️
Happy rehabbing 😃 I think you are doing amazing!

Maureen Hoganson  Thank you again for your encouragement and knowledge! For some reason, I missed this post or would have responded sooner. Yes, I think it does just take time for your body to adjust to all of the changes, especially after the trauma of the actual surgery! It sounds like you are doing well -- and perhaps your doc wants to make sure something wasn't missed with your sons. They never found my BAV until after my 2nd son was born -- and my mom was a cardiac care nurse (who was one of the best!). I think sometimes they just don't really look for them, or at least didn't as much back then, especially in women. My kids are now 26 and 29, so I hope they will get an echo done soon. I had their doctor check them after my first surgery and listended for murmurs, but said they could do an echo down the road.  (They were in 9th and 12th grade when I had my first surgery!) Good news is that I could tell a difference after going up our dock stairs yesterday -- and while I took my time, I could feel a difference for the better and can tell my aortic valve was definitely working well! Thanks again for your response!

Grace Mason   No worries. That sounds like a good sign you can already tell a difference for the better! 
I think you are right about why they recommended my sons have another check up down the road and also, possibly, because they were not fully mature at the time either. 
It definitely does take more than the 12 weeks to fully recover internally. Slowly and steadily, I could still feel differences even now, from 1 yr to 2 yrs later.

Wishing you a continued smooth recovery ♥️

Maureen Hoganson  Thanks again. Yes, I was very excited to go up our dock steps (50+) and uphill pathway to the house after going for a short boat ride and was barely winded. My echo looks good from last week and AVA is great (3.2 cm2) compared to the .76 or less before my surgery! Just waiting for the surgeon to review the echo. I was a little disappointed with cardiac rehab and not sure they understand my other issues (Lyme/EBV/CIRS). While I worked hard to get my Lyme better (and it is) over the past 5 years, my EBV was activated to a very high level after surgery, so repetitive exercises (like a seated bike, etc.) can do more harm than good to my muscles. SO, will work to get a workout plan at home that may be more suitable. I love to exercise and have enough equipment at home and can walk, so may be the best route. Can't wait to do PT. And yes! 12 weeks is so different from the 1-2 year mark!!! So glad you are improving even now!

Grace Mason   I actually did not meet Dr Stelzer but I have heard excellent things about him, as well. 
I had a previous consult with Dr Gerdisch in Indianapolis, who you will probably see mentioned often on Adam's blog, and he doesn't do a Ross, but he recommended Dr El-Hamamsy to me, if that was something I was interested in pursuing. After researching more, I learned that Dr El-Hamamsy was not only a surgeon but had also completed a doctorate in aortic studies. After reading his dissertation, "The Living Aortic Valve", I felt really confident in not only his expertise, but also his passion to do the repair to be as close to a healthy, natural aortic valve as possible. 
I set up a consult within a few weeks, with Leemor Selitto's help.

Once I spoke with Dr El-Hamamsy, I just knew he was definitely the one I wanted to do my surgery. He is pretty amazing, and also kind and compassionate.

Grace Mason   Hi Maureen,
I was released from the hospital on day 5 and was able to travel by plane home on day 10. I'm pretty sure that is the norm after major surgery. I just had to get an X-ray of my lungs the day before(or day of) my flight to get cleared by my surgeon to fly.

I had no problem flying and I do have the titanium plates. I requested wheelchair assistance on my flight home, which was a great help, not because I needed to ride in wheelchair, but to conserve my stamina. Because of that, myself and my family assisting me on my flight home, were taken to the front of the security line by the steward (no waiting behind a crowd of people in a major airport). I booked the first row for extra space to stretch my legs and I carried my heart pillow with me which probably helped alert people around me to not jostle me. I also packed some compression socks I wore on my flight and tried to get up and walk a bit each hour. I was glad I decided to fly because I also was considering driving beforehand with similar worries as you. 
Oh, and yes, I am doing well! Thanks❤️

Maureen Hoganson  Wow, so glad everything worked out so well for you Grace and that the travel was uneventful!  (I had a horrible experience in Minneapolis/St. Paul last summer and don't plan to fly for awhile!) My CTA scan at Vanderbilt got moved to the 14th (of May) due to a paperwork issue regarding my allergies/reaction to contrast dye, so will be doing Allegra and Pepcid prior to my scan. (Although I am still worred about the chemical reaction which is genetic!) That said, I was still planning to get a 2nd opinion from Northwestern, but found out today that there is a Dr. Chris Malaisrie who does the Ross Procedure there, not Dr. Douglas Johnston. He requires an MRI/MRA, so don't want to do multiple scans with dyes as my system is so sensitive and I am really becoming more symptomatic. The NP there also said that I may or may not be a candidate for the Ross b/c I have already had my bicuspid valve replaced with a prosthetic valve.  I am trying to sort through all of this now. The surgeon at Vanderbilt felt the Ross Procedure was my best option, unless there is too much scar tissue around the aortic valve when they get in there, and in that case would pivot to a tissue valve like I have, but one that has a better track record. (Although mine has gone 11 1/2 years.) Hopefully, I will be able to make the best decision. I would love to not have to do another surgery after this one -- and really wish I would have been able to do the Ross with my first surgery. My previous surgeon didn't offer it b/c he felt there were still some issues that needed to be perfected as of 11 1/2 years ago! Again, so glad you are doing well! :)

Grace Mason   I remember those whirling dervish days ☺️. I had boxer dogs for most all my life until a few years ago. Much fun! Seeing all of Shadows recent "hibernating" photos was making me wish I could do so until warmer weather arrives!

Richard Munson  Well, he got me up at 5 to do his duty and eat so i relaxed on the couch and fell back to sleep but awoke in a start thinking my heart valve exploded only to find a 60 pounder sleeping upside down on my chest. The entire right side of my body was tingling like when your hand goes to sleep. Finally woke him up but i had to yell in his ear which was tucked under my chin. He’s a cute little guy for sure. 

Grace Mason   I don't believe so. Their space is pretty limited. Not sure if they make any exceptions while in ICU. 
I felt very comfortable on my own, with just staff and felt better that my family didn't feel obligated to stay overnight(and I had my phone with family only a 1/2 mile away), but I understand some may wish to do so.

Grace Mason   Marriott was within walking distance. I walked(Slowly on the one incline) the 1/2 mile to my appointment for clearance to fly home. Crediting my team.

susan harris  thanks so much. yes, we are staying w my high school friend 30 blocks away-truly an angel who came to help!  longer walk but short subway or cab ride. i just would prefer to stay 1st night 

Grace Mason   Hi Manuel,
Yes. When I was first diagnosed at 32 I only had regurgitation and a 4.2cm aneurysm and developed the stenosis much later.
My aneurysm measured at 5.1 cm in a CT was what was driving my surgery, but I also had moderate stenosis by that time(56 yrs).

Danny Humphress  Yup! In my early 30s. I had rheumatic fever when I was 12 and, as I recently leaned, a bicuspid valve. 

Grace Mason   Hi Kim!
Sounds like you have been busy in preparation for your surgery and I think you were smart to get multiple opinions before deciding on your best fit. 
I do have Sternalock Blu rigid plates, and I discovered at about 12 weeks that I have sternal non union. It does happen with some people but there doesn't seem to be a consensus on the cause. Since I already had the titanium plates I did not have to do anything additional because of the non union, as rigid plates are a "fix" for unstable non unions.
As mine was already stable, I just had to give my sternum additional healing time for scar tissue to form where the bone did not. The scar tissue hardens over time. I do not have any issues now and have no restrictions.
You will be in great hands with Dr Roselli at Cleveland Clinic.
If you have any other questions let me know. I'm happy to share my experience.
You can also contact me at gracemason35@gmail.com if you wish.
Best wishes in your upcoming procedure ❤️

Grace Mason   Hi Ben,
I was able to live my life as normal after my diagnosis, but like you, the initial diagnosis threw me for a loop. I was really afraid that my aneurysm would dissect without warning, I guess. I even took anxiety meds for a few weeks because I was so afraid. 
Eventually, as I learned more about my condition, and as time passed and I didn't see any significant changes, I grew to accept it and realize I could do everything I wanted to physically without the anxiety. I have been physically active my entire life and continue to be so. I didn't know anyone else that had the same condition as me until I found Adams blog a few years ago, so I love this site and the information it provides.
Try not to stress too much, and trust your cardiologist to monitor it and care for you.
I even feel like the reminder of it(mostly during yearly follow ups)made me take time to stop and enjoy and appreciate life more.

Ben Whitener  Wow! Thanks for the kind words, Grace. Definitely been on the anxiety meds, but feeling better and better each day as I learn more. I’m sure I’ll have way more questions overtime so I’ll definitely be reaching out! Thank you again ❤️

Grace Mason   Hi John,
I talked about getting rigid fixation with Dr El-Hamamsy when I initially met with him. It wasn't normal protocol, at the time of my surgery a year ago. They were and may still be using a strap system. I asked again at my pre op appointment the day before my surgery because it felt important to me. 
My recovery as far as pain post surgery was very low to none and I think that the rigid fixation probably had a good bit to do with that, as it immobilizes the sternum from moving apart but also the small movement you have up and down between the sides of the sternum. 
I had read a lot about the Sternolock Blu and really wanted it because I was really afraid of the pain I might feel post surgery and also I wasn't sure I would be a "good patient" in following sternal precautions for so long.


At 4 months I learned that I had sternal non union.(For me there are gaps in parts of my sternum where bony bridges didn't form) They don't really know why some people develop this and I only know I have it because I started having pain upon breathing at 3 months and it was the only thing found when I had a diagnostic CT done.Nothing else was found that could be physically seen. My pain upon breathing stopped hurting 3-4 weeks later and I have had no problems since that time.
I don't know if the screws used to apply the plates may have interrupted blood flow in my sternum and contributed to the non union or if I would have had a non union regardless of having a different closure. Fortunately because I had plates I didn't have to do anything for the non union because that is what they often use to repair non union. 
I have never had a broken bone so I have never had to recover from anything similar.
I know there are several other people on the site that have had rigid fixation and were very happy with it. I am not sorry that I had it done, because I feel like I had a pretty easy recovery, but I do wonder if it contributed to the non union.
Thanks for the anniversary wishes!
Sending you well wishes and prayers for your upcoming surgery. You are in great hands!!
One surgeon I spoke with told me many hospitals don't typically use the rigid fixation because of cost.

John Russo  Grace —
Thank you so much for taking the time to fill me in on this. I have seen a lot on rigid fixation and am definitely going to discuss this with them. My surgery should be coming up shortly because of the endocarditis. They have to do some shuffling and Dr. Adams & Dr El-Hamamsy need to align their schedules. I'll put my online once I have it.
Thanks Again .

Larry Peterson  Happy Anniversary, Grace!  I followed your progress as I awaited my own surgery last fall and appreciated your updates.  All the best!

Grace Mason   Thanks so much Larry. Likewise, I followed your updates as well and enjoyed reading about all your successes. All the best to you.

Grace Mason   Thanks so much Cindy. I have definitely been able to enjoy the city more this visit. Feeling relief and happiness at first year results 😀😅🎉 
Thanks so much for thinking of me. Hope your mom is doing better.

Grace Mason   Absolutely Jacquelyn.
It is completely understandable to feel a lot of anxiety. I found burning some energy walking on the treadmill, or wherever, would help me during the day. Also making lists and doing things to prep what to pack and doing things around the house I wanted to do before I had a lot of arm restrictions. So, rearrange any furniture now😉. We joked about this because my mom likes to rearrange her furniture often.
Maybe prepare a playlist that makes you happy or inhale a calming scent. Some smells just make me happy and feel better.❤️

Grace Mason   A friend gave me this Relax into Healing CD. Mindful mending with Nancy Hopps. I found it on Spotify and took my earbuds and would listen to it before and after my surgery. 

https://open.spotify.com/album/1dNyll8eRGOo2JssuXZ8WL?si=YSffh6CtQzSWSoD-rOokBg

It is definitely nice to have earbuds in hospital post surgery to block out all the beeping and other noises sometimes.

Jacquelyn Erndl  Thank you for your lovely advice! Yes I plan on decorating for Halloween early this year since I love that time of year. I’ve taken your advice also and have been walking nearly every day at a brisk pace. My kids and I have Spotify so I will definitely listen to the Mindful Mending you suggested. Thank you for your kindness, advice and insight. Very much appreciated. I hope you’re feeling well Grace!!

Grace Mason   Hi Jacquelyn, 
I think you have made a great decision going to Dr El-Hamamsy. My experience with him, and Mt Sinai, was wonderful, smooth and IMO the best decision for me. He is an amazing surgeon who is also remarkably personable. I am planning to do my year follow up with their office soon. I could do it closer to home, I'm sure, but I want to go back for a proper visit this time, and will enjoy seeing these amazing people again, and NYC too. 
I am happy to answer any questions you have, no problem. I found Adam's HVS site and our fellow heart warriors to be a great source of information, comfort, and understanding and I am happy for the opportunity to share my experiences.
I did have a few blips in my recovery, not immediately, but four weeks post surgery, but they were minor complications really, in the scope of things, and were resolved fairly quickly. You will find more detail about those if you feel like reading my journal.
I was expecting things to be much more difficult in my recovery, to be honest, so I was extremely amazed at how independent I still was even a few days post surgery.
I think the prep I did before surgery made a big difference.
I engaged in regular cardio exercise before surgery(fast walking to jogging)and strengthening my core so I would be able to do things more easily without using my arms post surgery such as getting out of bed and moving from a sitting position to a standing position.
I'm happy to say I am feeling great, back to my normal activities and hope to continue feeling great for many more years to come.
I think you will be great hands at Mt Sinai and wish you the same peace I felt going into my surgery for "a nap", while they do their amazing work on your heart.

Jacquelyn Erndl  Grace I am glad you are doing so well. Your experience gives me hope that things will go well. I’m incredibly nervous and wasn’t expecting the news I got. Definitely going to take your advice about exercising beforehand. I tried to read about the minor complications you experienced but I could not find it. May I ask how soon out of surgery were you able to see and talk to family? Did it take long after anesthesia to be somewhat “with it” enough to talk or were you in and out of consciousness that day?  Once again I appreciate your responses and if there is anything I can help you with I’d be glad to do so. Thank you Grace 

Grace Mason   I was in ICU 23 hours and I think I slept most of it. I vaguely remember the nurse waking me and telling me they were removing the intubation tube and feeling a slight itchy/scratchy feeling in my throat and I'm pretty sure I promptly went back to sleep. I don't remember having it in at all other than that 10 secs. I don't really remember any conversation I had that day except right before laying down on the surgical table I asked the anesthesiologist if someone could take a picture of my heart before they closed. And they did! My surgery was first thing in morning. I arrived at the hospital at 530am for prep and in recovery around 1pm. I was in ICU around 2-3pm still quite drowsy. My husband said I would wake enough to answer the nurse on my surgery day. I know I sat in the recliner there around 530pm. The next morning I was moved into step down and was much more aware of everything then. 

Grace Mason   You are not alone in your feelings. I found the more I read, about other people's journeys, and as many articles as I could, the calmer I started to feel. If you click on someones name it will take you to their story and there is also a drop down menu there and you select a persons journal. I found this helpful to do that before surgery and find buried tips and experiences👍🏼
I was feeling very anxious at times beforehand so I also asked my GP for an anxiety med that would help me sleep and calm (as needed)before surgery. He obliged with a minimal dose and I occasionally utilized it. Actually just knowing I had that aid also helped.

Jacquelyn Erndl  I can’t tell you how much you sharing your experience means to me. Thank you so much Grace. It eases some of the fear I am feeling. It is a fantastic idea to read other people’s experiences, see I’m not alone and that there are many success stories. I really hope I’m one of them! I also hadn’t thought of anti-anxiety meds and will look into it. Would it be alright with you if I stayed in touch with you? Thank you again Grace

Jacquelyn Erndl  It's also amazing they took a picture of your heart!!! How many people have that? I may ask for myself

Grace Mason   Absolutely, please stay in touch. If you want to email me privately you can also do that at gracemason35@gmail.com

Jacquelyn Erndl  That would be wonderful. Thank you. I'll do that. My email is webj1324@gmail.com so you know it's me.

Grace Mason   Hi Sue,
I AM very close to a year since surgery and still have a hard time fathoming how it passes so quickly. Since about 4 months post surgery I have been steadily feeling more and more like I never had surgery. 
My scar is looking good, not really noticeable to the average person I would say, but now I am happy when I see it, as it is a reminder to myself of how blessed I am to live in an age where this type of repair and recovery is possible. I was so worried going into to surgery, being mostly asymptomatic, that I would never feel the same, or as well, after surgery. 
I am thrilled to have been wrong. Getting back to living life as if I had not had such a major surgery is amazing.
I love seeing all your recovery posts and shares and I am so glad everything worked out for the best for you. Looking forward to more ❤️

Grace Mason   Field trip!! It's a beautiful place. My giant visit was my first time. There was so much I didn't see...I plan to go back. If you visit, I would come hike with you. It's about an hour and a half from me.

Sue Maize  Oooo, my kind of field trip! Kentucky has so many unique attractions! Glad you’re doing fun things this summer Grace—hope you have something neat planned for your 1 year anniversary coming up soon! 😁❤️‍🩹🥇

Grace Mason   Hiya Valerie,
I'm doing great. Enjoying the warmth of summer sunshine.
I met a few giants at the Bernhein Arboretum hiking recently. I am 10 months out from my Ross and aneurysm repair. It's hard to believe it has been nearly a year. I don't notice any issues with my sternal non-union now, so I'm happy about that. Guessing the scar tissue has formed and helped to alleviate my previous pains(along with the rigid plates). Still keeping my BP and heart rate in the range wanted by Dr. El-Hamamsy for the first year. Hoping for an A-ok at one year follow-up 👍🏼(which I probably need to schedule now).
Hope your recovery is still progressing well.

Grace Mason   Hi Antoinette,I am doing great. Enjoying my summer time and these long daylight hours. I can't believe I am already 9 months post surgery. Looking forward to one year for a follow up to see how everything has progressed.
How are you doing?

Antoinette Weale  That’s great to hear glad you are doing good. Yes,  I too am enjoying warmer weather here in England and doing good. Few issues with maintaining my correct INR level but it’s being managed. I hope your follow up will be good news. Take care 💛

Grace Mason   Susan, I had watched several videos and read Dr El-Hamamsy's research paper on the living valve. I believe that paper was also his dissertation for his doctorate specializing in aortic valve studies.
I actually wasn't sure if I wanted a Ross until I read his paper. I had heard of Dr Stelzer too, but I was just so impressed with Dr El-Hamamsy on paper and in videos that he was who I wanted to talk with initially. When I had a zoom meeting with him I just knew he was my surgeon. I had met other surgeons, but with Dr El-Hamamsy I just felt a trust and confidence with him I hadn't felt so strongly with other surgeons I had spoken with previously. I just felt safe that he would do what was best for me. He is also amazingly down to earth for such an accomplished surgeon.

I didn't meet with Dr Stelzer but have heard wonderful things about him, as well.