Amy's Guestbook

Amy DiGiovanni Noack  Hey Kathleen! So nice to hear from you:) I'm actually really good. I'm back to work and life and I feel pretty good. I tire a bit more quickly but I figure I'm still getting over the trauma my body went through and it may take a while. I notice a huge difference when I work out as I have an easier time with my breath. I've started running and it feels great to be able to relax my breathing and not feel like I have asthma....I always thought that I was just out of shape but now I see and feel the difference with my new heart valves. I'm working on my 5k right now. I've stopped cardiac rehab as I didn't really get any benefit out of it. How are things with you? I know you are an avid runner so how are you doing on that front? Great to hear from you:)

Kathleen F.  Hi Amy! I'm doing well also. I feel the same way - I would get winded sometimes and blamed it on being out of shape, but I still feel out of shape, yet I'm no longer winded! I also stopped cardiac rehab for the same reason. I signed up for two half marathons this fall, so it's time to start running more seriously. I've done a few short races (5K, 5 miler and 10K0 and they've been fine. I miss the long runs though, and need to push through the mental barrier right now - I'm still a little nervous about pushing my heart too hard, after going through what we just went through. I don't want to ever end up in a hospital again! :) I'm glad you're doing well, and thanks for responding! I hope you are enjoying the rest of your summer.

Amy DiGiovanni Noack  Thanks Terrie! I have an appointment tomorrow with my GP so I will bring this up along with a few other concerns I have. I've been doing really well the past week or so and I want to ensure I continue to progress. I'm nervous about post operative care...I feel like the surgeon did his thing now I'm on my own to deal with the fall out of open heart surgery. I'm doing well, but I want to confirm I have commitment from my doctor and cardiologist for my contained care:)

Terrie Syvertsen  Great to hear Amy- You are wise to be pro-active in your health care as in most cases it helps to remind the medical people we chose to oversee our care what is current so that nothing does get overlooked ESPECIALLY with something as important as your recovery period. Good for you! Have a great week and good luck with your appointment tomorrow.

Amy DiGiovanni Noack  Jen, yes it's hard to go through such a major surgery when you feel fine walking in...it's hard mentally to accept, that's how I felt. I'm getting stronger each day but it's a very major operation so I am taking it slow. I'm now 11days post op and feeling better, but I am on so many meds and I have a hard time falling asleep. I chose Ross because I was confident in my surgeon and that's what he recommended and there were more pros for me at my age to go with this option...I really didn't want to be on blood thinners yet. In my experience there wasn't a clear choice but rather an elimination of options based on my lifestyle and the possibility of more children. I think whatever you decide you will be grateful for because it will ultimately prolong your heart function. I know how you feel as I was in your shoes 12 days ago having to sign off on the Ross, but now that it's over I'm very glad I chose this option. Good luck to you:)

Jen Huff  Amy - I decided on the Ross too. I didn't want to be in blood thinners for the rest of my life since I'm only 31 and just got married so we may want to have children. I'm hoping my chances of re operation are less as well! I just can't wait to be on the road to recovery. How are you feeling?

Amy DiGiovanni Noack  Thanks Mark, you too! Let's kick butt together! I just had my pre op and they are letting me leave! I don't want to spend the night here while I'm of sound mind! Good luck:)

Mark Alafita  Agree with that. I only live a short distance away from the hospital that I'm going yet, in Ann Arbor Michigan. Unfortunately, we are experiencing a snowstorm that is dropping around 14 inches of snow, so it looks like it will be an adventurous ride, along with adventurous surgery. Stay safe and be strong.

kathy lesnau  it was two years ago that I had my replacement at UofM with Dr Deeb. I was very happy with my post op care Good Luck Mark and Amy

Bob M  I pray that your surgery and recovery will be peaceful. Tomorrow will be a new day with your fixed heart. God bless and rise up!

Amy DiGiovanni Noack  Thanks Kathleen! I'm just waiting to get admitted...eek! I'm ver calm, but want the next 48 hours to fly by. Keep you posted.

Amy DiGiovanni Noack  Thanks Cheryl! I'm relieved to hear you are doing so well. I've been reading your posts and I hope my recovery is like yours. I'm a stomach full of butterflies today, but I'm going for a massage and hopefully will take a nap as I didn't sleep a wink last night thinking about everything. Thanks for the prayers...I'm taking all I can get! I'll keep you posted when I can.

Cheryl Batzing  Amy--yes! prayers are great! And so glad you went for a massage--great idea! Also, ask for xanax or anti-anxiety meds prior to surgery! Huge help with relaxing and sleeping day before or few days before surgery. I haven't posted much since I got home. Not because I had trouble....just because most was un-eventful. I don't know why I recovered quickly, but I pretty much did/have. I think I push myself too hard at times, but that's who I am. I quit daily remembering I'd had surgery at 4 weeks post surgery. Hospital stuff totally freaked me out as I hate hospitals, doctors, shots, procedures, etc. I just couldn't even think about having OHS, the tubes afterwards, the ventilator, etc. Just prayed for specific things about those things. Mostly, looking back, all was well and prayers answered. Little blips along the way, especially being cardio-converted to get heart in rhythm, BUT, they gave me great drugs and I knew nothing! Just woke up fixed!

Amy DiGiovanni Noack  Hi Tracy! Thank you for documenting your experience so candidly. I feel like I have some further insight to such a surreal situation. You are coming along wonderfully and I can only pray that my experience is similar. The only issue I'm having is getting my date confirmed. They seem to be so crazy busy and you are basically on call until the surgeon is ready for you. I'm trying to get a place on Airbnb for my family but it makes it difficult to plan when they are so unsure about my date. I was actually at Queens park on Friday and walked by TGH. I wanted to go in and be in their face once again trying to confirm my date, but it was freezing out and I needed to walk around to scope out the locations I might book (and I wanted to shop!). I want my mom to be able to easily walk back and forth. Other than that I'm mentally preparing for this (I'm a fan of reiki treatments to clear my energy). Now that I know your wife is from Windsor I'm a huge fan as I trust that you must have impeccable taste and judgement;) lol! I hope all goes well on your journey to recovery. I can't wait to be on the other side of this. Keep blogging on!
Cheers:)

tracy craig  Hi Amy, I know what you mean about the surgery date wait. They actually booked a month ahead for mine but then the hovering possible date change was always a thing. They changed it the day before then changed it back. The waiting is the WORST! I just wanted it all to be over and done with. As for AirBnB in the city it is tricky when you don't have exact dates. One of my best friends actually has a 1bedroom condo around Yonge & Maitland that he lists on airbnb (he has a cottage in Brantford that he is going to start spending time at) and I know he would be flexible on dates if that location and size worked for you and your family. Anyway, let me know and I get his info to you and you can discuss. Honesty being on the other side of the surgery is wonderful. It is slow and I am having to remind myself of that everyday but at least that part is done and healing over winter is the best time really. :) Netflix, books and naps! Good luck and let me know how things pan out!

T

Amy DiGiovanni Noack  Hi Tracy, I got the green light today....holy sh!t is all I can say!! Thanks for the place offer, but I just booked a place on Elizabeth (literally a stones throw from the hospital). I'm so grateful for your blog and insight, even your pictures gave me something to visualize... I've only been there once for a meeting. My friend is actually a perfusionist for Dr. David so she's been giving me some info as well. I'm beyond nervous, but I'm keeping busy with work and my little one. I want to get a signed book for my daughter, maybe once this is all past us we can meet up for a coffee (or beer) in Toronto, I'm always there for work. Monday at noon I'm up!!!

tracy craig  Oh goodness! I am just seeing this now. With any luck you are already checking in and everything is getting underway. All will be well, just trust. Plus today/this afternoon is the best day ever because you are now on the count down to the other side of all of this. Please let me know if there is anything you or your family need help with in the city! And yes, I would love to meet up for a drink once we are both patched up and off to the races again :) you've got this!!

tracy craig  Oh also if your insurance covers it and it is a feasible option look into getting a private room. It made a HUGE difference!

Amy DiGiovanni Noack  Tracy, thanks. I was wondering about the room situation. I only have "ward" coverage so I'd have to pay for private. I'll see how much it is, I was hoping it was like when I had Stella and they ask but all the rooms are private anyway! I'm checking in Sunday at 11 for preop, then spending the night. My surgery isn't until noon so I'm going to be so anxious waiting. Pending the weather, we are leaving Windsor early on Sunday.... I really want to spend my last night in my own bed! Thanks for the well wishes...can't wait to be on the flip side of this.

Amy DiGiovanni Noack  Hi Emily! Thanks for the note. I just received my date of February 2nd on Monday which is a relief but also makes me very anxious. I am leaning toward the Ross procedure but I need to figure out my back-up plan. I'm still not confident in my decision and it really surprises me how on my own I am to make this choice. I've met with my surgeon twice and he puts the facts out there but doesn't give me a direction either way - he's very matter of fact. What did you decide on? How are you handling the count down? I'm trying to stat positive and busy. I don't really know the protocol, like do I work right up until surgery? I feel fine and everything is as it always is... this is leading me to feel like I'm about to run full speed into a concrete wall!! I have to say this site the connections I've made are helping, but it's getting real as it quickly approaches. I hope you are going into this fully confident with your decision...you will do amazing! I will be thinking about you and sending you positive thoughts and prayers. Keep in touch, the feedback is so nice to hear and it's helping to put me at ease for my big day! All my best to you:)

Cheryl Batzing  Amy, butting into your conversation with Emily here...but wanted you to know I had OHS on Dec. 16 to fix a leaky valve. I had no symptoms, felt great, didn't know I had the problem although it was time to fix it! I was told to keep my life going as I wanted to in advance--so I worked up until the day before, even went to the gym the day before for a hard workout! I would't say the surgery was a "brick wall," but it did slow me down for about 1-2 weeks. I am recovering well and at 4 weeks post op now. At week 3 I started back to work about 5 hours a day and driving, and started cardiac rehab doing cardio 40 minutes 3X a week, and lifting weights at Weeks 4 now and back to work full time. SO, I know we all heal differently, but I was surprised at how quickly I am recovering. I set aside all these things I wanted to do "one day" when I was recovering from OHS, and have gotten none of them done. Anyway, ask more questions here! Will keep you in my prayers.

Clare Auten  Amy, I worked right up until surgery as well. I also tried to keep things around the house as normal as possible (my kids were 4,7 and 13). My surgeon was matter of fact as well. He made me wait the standard 4 weeks to driving and 10 weeks until working even though I wanted to get back sooner. Good luck to you.

Amy DiGiovanni Noack  Thanks Cheryl and Clare for the responses. I have an aneurysm so I am not working out too hard - I walk on my treadmill and do my arm weights to keep me strong. I feel light headed sometimes and that scares me so I'm just trying to take it easy and positive until my day. I hope I heal as quickly as everyone I've been reading about but I understand that some things will be out of my control. I think attitude plays a big factor in recovery so I'm trying to "keep calm and carry on". Thanks for the insight into your experiences - every story helps and comforts me knowing that I'm not alone in this:)

Emily Shively  I think all surgeons have the same matter of fact attitude. However had it not been for two different surgeons suggesting the same type of valve - bovine, I would probably still be second guessing. Have you gotten a second opinion? Even if your first surgeon is the best in town, it sometimes helps to hear someone else confirm. I also spoke with a perinatologist since I haven't started my family yet. She was very helpful in understanding how a mechanical versus a bovine valve would affect future pregnancies. I feel fine as well, with no symptoms which sometimes makes it hard to believe I need surgery at all! But the doctors and all the tests say I do. So I trust them and God to get me through this. I am only taking one day off before surgery. For me, the more I talk about my condition on this site and with friends and family, the less alone I feel. Expressing your fears and questions with others will help lessen the load on you. You're right that attitude is everything. I hope I can stay positive over the next week! Eek! I just noticed I'm on the upcoming surgery list. It's really happening!

Amy DiGiovanni Noack  Emily you will do great! I'm right behind you with my date. I look forward to sharing notes of our experiences. I have gotten a second opinion by sending my records to clevland medical clinic and I also reached out to Dr. Stelzer in New York. Of course they would have to do a more thorough analysis but the Ross was a suggested opinion. I have one other doctor in Montreal I'm going to reach out to. I think more hrs anything it's the fact I do not have control over this that is bothering me the most, but I have to trust the expertise and have faith I'm in good hands. Stay strong and positive this week. All my best to you:)

Amy DiGiovanni Noack  Awe thanks Kimberly! She keeps me busy so I can only imagine how full your hands are with your little ones. Yes, I am asymptomatic at this point, well I think I am, so the aneurysm is making me have to get the surgery sooner than I expected. I'm in Canada and the threshold for aneurysm is a little higher than in the US, so I'm actually at a higher point then most that I've read about so far. I may want to have another child so my surgeon is recommending the Ross procedure which will involve 2 valves to be replaced. I need to have a backup option incase my pulmonary valve isn't in the condition to replace my aortic valve and in that case he is recommending to have a mechanical valve replacement but that will mean no further pregnancies. I've been reading others who are choosing a tissue valve but my surgeon wasn't very keen on using that so I'm stumped on which direction I should go. From what I can tell there are a lot of different options that people choose and I wish there was more consistency with treatment but I guess it depends on each individual situation. It's such a big decision, and frankly one that I do not feel equipped to make on my own, but it really is up to me on which way proceed and that's the hardest part to deal with so far. When are you due for surgery? I'm end of January but I don't have a confirmed date yet. Thanks for the reply and lets keep in touch - it will help both of us:)

Kimberly Biddick  I read that they do wait a little longer for aneurysm surgery in Canada... has that been hard for you? All I can think about day and night is how I want mine OUT... like NOW!! The tissue vs mechanical is such a hard decision! It seems like there are so many pros and cons of each. I am not scheduled for surgery yet, as I was just diagnosed last month and am in the "waiting room phase" which I am starting to learn is extremely hard! I hope that your pulmonary valve is fit enough for the Ross to be an option. I imagine knowing you cannot have another child if you wanted to would make this whole thing even more difficult to process. Yes, let's definitely keep in touch. I have found that having the strength and support from others on here in similar situations is so helpful!! Good luck!!!

Amy DiGiovanni Noack  Thanks! I've never heard of a sore jaw being a sign, do you know why that is? Congrats on your recovery! The more I read posts the more reassured I feel about getting this done.

Tammy Pilcher  Welcome, Amy! It's nice to meet you. My surgery was 6 weeks ago and I'm doing great! You can do this!

Amy DiGiovanni Noack  Tammy thank-you…it was actually your story that I read and it really made me feel comfortable - I've felt so alone dealing with this and so I am grateful to have found this site and these stories that everyone has shared. I'm happy to hear you are feel great - gives me comfort:)

Tammy Pilcher  Amy, I'm so glad my story helped you! That's what I hoped for! Reading other's stories before my surgery helped me so much too. This site and Adam's book gave me so much support and comfort! If I can help answer any questions you may have, I'll be happy to do so. Best wishes, Tammy

Amy DiGiovanni Noack  Thanks Adam. This site has been ver helpful. I'm still very nervous and undecided about my valve procedure but it's very reassuring reading the experiences that others have gone through. Thanks for this forum!

Daniel Spurgeon  Interesting that I had a surgeon other than Dr David use the technique he invented, and you are going to Dr David for a technique other than the one he invented!