Kathleen's Heart Valve Journal

Today is the anniversary of my surgery. I have had another good year and feel completely back to normal. I feel blessed to have been the beneficiary of Dr. Paul Stelzer's skill, and am grateful for the donor pulmonary valve I received, which was implanted when my pulmonary valve was moved to become my new aortic valve. I don't check this website and journal much now, but just want to wish you all the best as you go through this difficult and challenging time.

Yesterday was the two-year anniversary of my Ross Procedure surgery. I'm grateful for the skill and selfless dedication of the best doctor I've ever met, Dr. Paul Stelzer at Mount Sinai, and for the positive sharing of this community. I hope we all have a healthy new year ahead of us.

After having the Ross procedure last year, (replacing my aortic valve with my own pulmonary valve and getting a donor pulmonary valve) I was able to finish the Vermont City marathon this May. Feeling blessed despite the challenges.

I'm in the middle, with my hard-earned half marathon medal - my third this fall, almost a year since my Ross Procedure. Happy to be back!

Hi all! There are a few of you having the Ross Procedure with Dr. Stelzer, and I just wanted to give you some hope and encouragement about recovery - I ran my first half marathon this weekend, since my diagnosis in the summer of 2014. (My surgery was Dec. 29, 2014.) I have to say that I noticed a difference. It felt easier, yet I ran the same 10 min. mile pace as I did on this hilly course in 2013. The difference was, in 2013 I felt I was pushing myself hard, and this weekend I felt I was jogging comfortably slow, yet I had the same result! My heart was smooth and quiet this time; it wasn't beating hard up the hills and I did not have the same fatigue, even though I haven't trained as much as I did back then.

I do have the green light from my doctors, no restrictions, and now I'm optimistic I can push myself a bit harder and see if I can get closer to my PR of 1:50 in this race, now that my heart is working efficiently. I recovered from surgery at a pace that was comfortable for me, never sure if I was pushing too much or not enough, but perhaps the more we all report our data on this site, we might be able to provide each other and the medical community with comfort that valve replacement does not necessarily need to have the same restrictions as other heart surgeries. In cardiac rehab, I was told I'd never be able to, or shouldn't, do more than a slow 30 minute jog; but my cardiologist and surgeon told me otherwise. Sunday was a wonderful day, when I felt like I had my life back again.

It also helped that I had just read an inspiring book I found on Amazon called "Living Life to the Full" by Ellen Charnley, who did a full Ironman 8 months after (minimally invasive) heart surgery to repair holes in the heart wall. I am looking forward to seeing what kind of progress is possible in the upcoming months! Best of luck to all of you on your healing journeys!

Triathlon tops come with a half zipper to show off our scars (covered here to avoid the sun).

Swimming around the buoy with dolphins at the triathlon!

Hi everyone! So, Monday, December 29 was my Ross Procedure (my "bivalvathon" as I liked to think of it, or double heart valve replacement) and now it's Monday June 29! I love hitting the anniversaries and milestones. I continue to focus on getting my conditioning back, and also to just enjoy my time more, now that I've faced open heart surgery and am aware of how lucky I am to be here. I'm trying not to put in too many hours at work these days. I've run a 10K race and two 5K races in the last few months, and in my most recent 5K, just missed placing 3rd in my age group by 5 seconds - 25:48 - just a minute off of my time in this race last year, before I knew I needed valve replacement. I was very happy to run that well this soon. The 10K was harder, on a hot and humid day, and I let myself walk a bit after "Harlem Hill" at the top of Central Park. I was able to tell, after a few sessions of cardiac rehab, that my heart rate was way out of the range they gave me, so I thought it was more important to be safe than to be fast. Around mile 3.5 of the course I was able to look up at my hospital window at Mount Sinai, and I was extremely thankful to be on this side, running my favorite park loop once again. And, to celebrate my new heart and increased capacity, I recently started training for my first mini triathlon in early August. I know I have a way to go before I feel comfortable at all three events - swimming/ biking/ running - even the sprint distances - and before I'm even comfortable wearing the triathlon jersey and shorts. Yet, just a few months ago, I was breathing into a spirometer, on my recliner, in my flannel PJs. What's comfortable? This recovery process is amazing, and I just want to continue to get better. I have a follow-up echo in a few weeks, my first since I was discharged from the hospital in January, and I hope everything is as good as it feels. I feel very blessed, and don't want to look back. Today I say a prayer of thanks, and wish all of you a healing journey too, however far along you may be. If you're still in the early months, I've found that it really does get easier with time. Hang in there, it's worth it! While I love being able to exercise again, I know I should also try and eat better, maybe cut out ice cream, wine... I hope by my next update I'll be reporting even more healthy lifestyle changes. The triathlon goal feels daunting, but then I remember the courage it took to schedule heart surgery when I felt fine. I've decided that my triathlon top has a half zipper so that I can show off my scar.

Just checking in and thinking of all of you who are somewhere along this valve replacement journey. More good news here; I started swimming at a local pool this week, and looked into buying a bicycle so I can participate in a short triathlon down the shore this summer. It should be fun, with no expectations or time goals. I also participated in a 5-mile (running) race yesterday and was happy with my 9:30 pace, which is only a minute slower per mile than I ran this race last year, when I had decent conditioning (but aortic stenosis). It was definitely my slowest time, as I've run it at 7:40 pace when I was more fit, but it seems like I'm making strides every day without pushing myself too hard, which is the goal now - reconditioning. For anyone who is hesitating about getting out there for that extra walk, or doing laps in the pool, or taking a bike ride, I say this is why we got our hearts fixed, no? Let's use them! Good luck to all of you with upcoming surgeries, and it really is better on this side!

I wish I could bottle this feeling and share it with all of you! Today I ran my first 5K race after my Ross Procedure, and I won my age group!

I've been going to cardiac rehab for the past 5-6 weeks, where they've allowed me to jog on a treadmill, getting my heart rate up to 150 -160 bpm. (When jogging 30- 40 minutes on my own, I allowed it to go a bit higher, up to 165 or even 170 bpm at the top of a hill a few times, which was still comfortable for me, my cardiologist approved, and I've had no problems. I was allowed to stop taking beta blockers in February, and my resting heart rate has been around 60 bpm when I wake up; this is only a bit higher than my pre-surgery RHR.) On Thursday my cardiologist told me that I did not have any heart rate or exercise restrictions at all. I was happy to be able to leave my heart rate monitor behind and participate in my first race since my severe aortic stenosis diagnosis in August, and Ross Procedure at the end of December. I haven't really pushed myself yet, and it felt wonderful to be out there running this morning without any beeping and monitors. I've missed the endorphins!

My pace was about a minute and a half slower than I usually ran when I was more fit (9 - 9:30 min/mile pace today, versus 7:30 - 8), so I finished several minutes slower than my pre-surgery 5K times. I remembered that I did run two 5Ks in the year leading up to my diagnosis which were a few minutes slower than I had expected, and I remember thinking at the time, "What is going on?" and having no idea my aortic stenosis had worsened as much as it had. I thought it was a result of some weight gain, longer hours at work, and just being in my mid-40s. Now that I'm running again, post-surgery, I realize I may not have been as asymptomatic as I thought. I did feel a difference today. Breathing is just easier; I don't have to try so hard. It just feels smoother, and perhaps that's the lack of turbulence (my gradient had been in the 70s) and my heart doesn't bang around in my chest. That had been my "normal" - I didn't know it wasn't?

This morning, the race was small and there were not many people in my age group, and I placed second masters (over 40) female runner and first 46-and-over female! I know it doesn't mean anything; there were no medals, my time wasn't great, and the race was for charity, but I so rarely "place" in a race, that I feel like this was a much-needed sign that I will be OK, and maybe even better than ever.

There were free post-race massages, and as I filled out the brief form they gave me, I realized that, for the first time, I did not have to disclose any cardiovascular / heart condition. My cardiologist told me Thursday I no longer have even a murmur!

So of course I went and celebrated with another first - my first post-surgery pedicure, which included a heavenly calf massage. (Life is good, why not enjoy our time here?)

As Jim Jones, Ole Bore, Mitch Friedman and others have shown in their heart journals, there is running after surgery. I'm thankful to all of you who allowed me to believe it was possible to run and be fit again, and even push myself, after open heart surgery. I love my new, wide-open valves, and look forward to getting more fit in the upcoming spring and summer months. All my best to all of you on this similar crazy journey of valve surgery. Have faith and healing will follow! (And who knows, maybe even an age-group win and free massage!)

Since I've been jogging and lifting a bit more regularly these last six weeks, after doing very little the previous 8 months leading up to and following surgery, I've felt my chronic Achilles tendonosis and twinge from a previous rotator cuff and shoulder labrum tear start to hurt again. It's funny how happy I was to feel my old sports injuries flair up, and I couldn't help thinking of George Bailey in It's a Wonderful Life: https://www.youtube.com/watch?v=u56OqFjs1dg

Twelve weeks ago at this very moment, Dr. Stelzer was starting the Ross Procedure on me at Mount Sinai Hospital. I will always be grateful that I had this time to convalesce over the ridiculously cold and snowy winter we just had. My fiancé took care of walking the dog, shoveling, and lifting all heavy things, and the person I report to at work let me start doing a bit from home by early February so I could keep my hand in it, while other people were getting laid off. I was able to relax for the most part and focus on resting, reading, catching up on shows and movies people had recommended but I had always been too busy to watch. Time really slowed down. Family and friends came by or called, and I loved receiving Edible Arrangements, cards, flowers, etc. It really reset the clock, in a way, and gave me time to step out of my busy work life and take time to care - for myself, family and friends, and lots of nieces and nephews in Boston, who all got Valentine's Day goody packages I made for them, in the mail. The free time was wonderful and I'm going to miss it. My doctor thought I'd be bored quickly but he was so wrong. I loved the quiet time to heal and think about what I want to do with the rest of my life.

I'm back to work full-time now. I'd say I started really feeling 100% by Week 10. I started cardiac rehab that week at NY Presbyterian Hospital (Columbia), and I appreciate being monitored while I jog on the treadmill. I keep my heart rate in the 140 - 150s range, even at a slow jog at 4.5 with 2% incline for 30 minutes. My understanding is that as my conditioning comes back, I should be able to go faster while keeping my HR in this same range, around 150. My training before heart surgery was at a higher intensity, but I can get a good aerobic base with the 150 HR training, and progress to interval training at a higher rate once I'm more fit again, I think. Since I have a heart rate monitor, I do this on my own a few times a week also, sometimes on a bike or elliptical at the gym. At rehab, after the treadmill, we also do some arm strengthening exercises with 4 lb. weights, and some leg lifts with ankle weights. I'm not sure how long I'll continue rehab, since my doctors say I don't need to be monitored. I've gone three times and am getting a good sense of what level of exertion they consider safe. I have yet to test my heart with an all-out sprint! Honestly, I'd like to go for a hard run, all out, and not have to slow down because my heart rate is getting too high or worry about my heart condition, as I have since I was diagnosed last summer with severe aortic stenosis. At 3 months post-op, it might be time?

I was able to stop taking any meds after 4 weeks. But the milestone I've had in my mind has always been 12 weeks - 3 months. At this time, I was told, the heart is essentially healed, and I can even start "training" for a race if I wanted. I did sign up for a 10K race in Central Park in June, a race I've done many times over the past 15 years, and in fact, mile 3 of the course can be seen from Room 108a on 7 West - my hospital window. I'm not sure if I really have no restrictions, and my next cardiologist visit isn't for another month, so I'll plan to continue to exercise within the 150s HR range until then.

A final note - Last Monday I walked the dog (a 65-lb. hound mix) and as we were crossing the street in the crosswalk, a car turned the corner toward us and didn't slow down. I was sure he'd seen us, but apparently he was looking down the street as he was turning toward us, and I had to sprint out of the way, dragging/ jerking the leash, and the car just grazed us as it went by at full speed. I was so shaken up by this - the dog was hit in his back leg or hip, but was totally fine. I just think how much we all just went through in the last few months, just to get hit by a car 11 weeks post-op?! Really?!!! I am so thankful the dog and I are both OK. And I realize how lucky I am to have had a full recovery, and how random it all is - to be hit by a car, or to be diagnosed with a congenital heart condition.

I'm thankful for this site, which gives us some control and knowledge over our procedures and recoveries, and especially for the people who have reached out to me and touched me profoundly just by caring enough to respond with a kind word or advice. It's been great to check in, reach out, read, respond, connect. I wish you all a good healing journey, as I had. And I look forward to what the future holds - especially, that good hard sweaty run - but away from all cars and traffic! Godspeed.

I had a good two-week follow-up appointment on Thursday with my cardiologist, who told me I can start some easy running at the one-month mark, which is in 10 days! I was really happy about that. He also said I could get a massage to help my back soreness, and even lay face down on the table, which I find hard to believe right now. Has anyone had a massage after the first few weeks? I imagine it would really help.

I felt almost back to normal when I was able to walk the 10 blocks to the train, go into the city by myself and walk the 4 blocks to my doctor's office on my own for the appointment. I met a friend after the appointment and we walked around Union Square and did some shopping before heading home. It was a good feeling to be independent again! On Saturday, my fiancé and I walked to the train to go into the city, and walked across Central Park to the Metropolitan Museum of Art, where was walked around the Egypt and El Greco exhibits for a while, sat for lunch, walked around some more, and had tea at the Viennese café across the street before heading home. We were out for 7 hours which may have been pushing it a bit, but we were able to sit whenever I needed a rest so I didn't get too tired, but I had a great nap when we got home. I'm not bored yet, for being out of work for three weeks. Today we walked around a neighborhood in Jersey City and found a great restaurant for lunch. Again, a nap was in order this evening. I still am not sure if I'm doing enough or too much, and my doctors surprisingly aren't giving me any guidance when I ask how much walking I should be doing, and I was even told not to use my heart rate monitor, which I have from marathon training. I would feel more comfortable if someone told me what heart rate range I should be working in. Can anyone tell me what kind of workouts you're given in the first few weeks of cardio rehab?

All in all, I seem to be doing great, which I'm thankful for. I'm starting to get a little impatient that my chest is still sore, but I have to remember that three weeks ago today, I just had heart surgery and was still in ICU!

Exactly two weeks ago today I was on the operating table, and nothing was in my control. Now I'm doing whatever I can to facilitate the best recovery possible, including not having any caffeine, even though I was told one cup of coffee a day is fine. And I used to drink a lot of coffee! I figure I'm taking metoprolol for a reason, to keep my heart rate low, and I don't want to compromise the great work of my surgeon in any way.

I've increased my walking over the last few days, and yesterday I was able to walk normally up and down the 40 stairs in my 2nd floor walk-up - three times - in the morning, afternoon and evening - for increasingly longer walks of 30 and 45 mins. with my fiancé and the dog, and an hour in the evening doing some grocery shopping with my fiancé. I really didn't think I would be this mobile two weeks after heart surgery.

I find I don't need the painkillers as much as I did earlier in the week when I first came home. Now I'm only taking ibuprofin every 8 - 12 hours, if needed, and I'm sleeping better too. Last night I slept an uninterrupted 6 hours before I needed to get up to use the bathroom. I'm trying to drink a lot of water and eat fruits and vegetables to get the anesthesia completely out of my system, and limit sugar, which causes inflammation and slows down healing. Overall I'm feeling really great. I hope those of you facing surgery this month can take heart that the waiting really is more challenging than the recovery. Healing thoughts to all of you - let's have a great week!

The temperature climbed into the 20s today, so I took a longer stroll around town this afternoon. I walked 4 blocks south/west to the library, returned a book and checked out a movie, and then walked 4 blocks north to the supermarket, where I wandered around the aisles for a while, picking up only a few light things to carry the 4 blocks home. I was out for about an hour and 15 minutes, and didn't feel tired. I may have to increase my "stroll" to a faster walk, but it was a bit icy so I took it slow. It's actually kind of nice to take it easy on myself and hibernate, eat good food, read, watch movies, and not go into work! That said, I attempted to see whether I could work part-time from home, as I am already starting to feel antsy, but because I'm on Medical Leave, they may not allow it.

It's tough to know how much walking is enough, without pushing it. I have been home 5 days, and am 10 days post-Ross procedure. I'm only going for one daily walk (outside) of about 6 - 8 blocks, with 40 stairs on either end. If it wasn't so cold, I might be tempted to go longer. What limits your walking? Shortness of breath? Burning feeling in chest? I have a sense it's more important to keep my heart rate low right now, than to push it. I do pace around my condo (it all counts!) and look at these single digit temps as a sign I should not break out the heart rate monitor and go for a long walk! I'd love to hear your walking routines. Jason seems to be setting the bar high, at three 40 min. walks a day, that first week, I believe. I am looking forward to that!

Hi, it's hard to believe last Sunday I was getting myself centered and prepared for the next morning's surgery, and now I'm home, sitting on my couch, feeling fantastic. In a nutshell, Dr. Stelzer is an amazing surgeon and the nurses at Mount Sinai are wonderful, caring and compassionate people who took great care of me. It's not fun to be poked with needles and feeling sluggish from all the medications (and 20 lb. weight gain from surgery, which does go away after a week or so). But honestly, I had thought open heart surgery would be so much worse. It was no joke, but it was bearable.

I had the Ross Procedure on Monday, stayed in ICU overnight, then moved up to the regular heart floor. I was surprised at how lucid I was when I first woke up; I expected more "brain fog"! There was no slow down of memory at all, but I was disoriented, and in fact, I scared the chaplain, who came over to say a prayer with me in the ICU, and when he revealed this was a second career for him, I immediately knew his industry, what he did, and who he had worked for. His name was familiar to me, and he seemed to be someone I "knew," but I wasn't remembering him in the traditional sense, as we had really never met. He thought I was a psychic; I think the brain works in mysterious ways. I may have seen his name on a journal article years ago and somehow pulled it up from distant memory decades earlier; that's the only rational explanation, but we are both spiritual people, and I was thankful for the connection.

Another thing I recall from the first few days is it's initially really scary to hear your own alarms going off, and have no one rush over to save you, but the nurses were great at explaining that it's often just a twisted line in the IV that can happen if you adjust yourself in the bed. And my right elbow, where my best IV vein was, is not easy to hold still at night or while eating.

I was out of bed and walking around the floor with a walker by Tuesday, with some appetite (vanilla NePro shakes were great too) and Wednesday, I ditched the walker, and in addition to walking three laps around the floor unassisted, I started practicing on the stairs with a physical therapist, since I live in a walk up with more than 40 stairs. It felt really good to move. The back gets stiff from laying around too much. I was also able to wash up and brush my hair, etc. which made me feel normal again. Wednesday evening happened to be New Year's Eve, and when the staff learned that I've run the Midnight 4- mile Fun Run in Central Park in past years, they moved me to a private room with a view of the park and the fireworks at midnight as the race went off! (There were not a lot of surgeries or patients scheduled that week.) That did a lot for my emotional and mental state. I loved that view and to see all of the runners, and people out walking their dogs in the morning, was so great for me. And I can't stress enough that the more I was able to move around, the better I felt.

By Thursday I was showering on my own, and walking out of the wing and around the gift shop, and doing leg stretches at the railing overlooking the Guggenheim Pavilion; Dr. Stelzer thought I might be ready to discharge after 4 days, not 5!

I got a roommate that afternoon who was having mitral valve surgery with Dr. Adams the next day. She was so nervous, and we talked a lot throughout the night. She was crying as she left for surgery in the morning, she was so scared. I really believe the mental and emotional aspect of this may be a huge part of it, and this brought to the surface that I hadn't yet processed the loss of my murmur, and this huge thing that was just done to my body, which has served me so well in so many marathons and whatever I asked of it. I was a bit down that morning. Now that it's behind me, I'm glad I didn't wait longer for surgery, even though I had that option, because I believe the extra time to get nervous would have had a negative impact on me.

I was able to get back into a more positive frame of mind throughout Friday, and was patient with each new day's procedures - removing the drainage tubes, the pacemaker and wires, which didn't hurt but was not comfortable either. I can't say there was ever any bad pain. I felt some burning in my chest now and then, not at the incision site, but over my heart, but the pain pills worked quickly, and after a few days I only needed motrin, which I'm taking at home now.

By Saturday, to help the process of discharge, when warm prune juice and milk of magnesia just wasn't working, my nurse OK'd my request to take the elevator down to the lobby for a tall brewed Starbucks and a bran muffin! I ran into my (former) roommate's husband down in the lobby, and got a good report of her procedure, although she was still in ICU since her procedure had been 9 hours, to fix a previously repaired mitral valve 15 years earlier. I'm so happy she's doing well.

I realize how lucky I am that my body responded with fantastic numbers, because I know it's not all in our control. I am so sad to see the news of Lisa's passing on here, and that Rhonda, who shared a surgery date with me, is back in ICU in critical condition. I am sending out the most positive energy and prayers for all of you, and thanking you all from the bottom of my heart, for the community of energy you've helped create here. Stay strong - mentally, emotionally, and physically! Much love, Kathleen

Like many of you, I was diagnosed with a murmur and BAV as a teenager at a high school sports physical, but have always been athletic and healthy. I am now 45, and was told this summer at a routine cardiologist appointment that my stenosis is now severe and the valve needs to be replaced this year. I was surprised, as I've been running well and am asymptomatic. I'm "heartened" to find so many young people, fellow runners, as well as so many generous, kind and compassionate people on this site. You've all helped me during this waiting process and I hope I can do the same for some of you!