Kathleen's Guestbook

Kathleen F.  Hi!  I had the surgery 8 years ago and couldn't have had a better outcome. I see my cardiologist every year for an echocardiogram and everything's been great.  Initially the follow-up was every 6 months, but there were no issues and I take no meds, so more follow-up wasn't necessary.   The surgery may have been complicated for the surgeon, but the Ross procedure is the most simple for the patient, since the valve will not need to be replaced again, like a pig/cow tissue might, at our age, and blood thinners aren't required, as with a mechanical valve.   Mt. Sinai was fantastic.  I am currently training for the London marathon, and continue to run and exercise with no problems.  I'm happy to talk about it on the phone with you and your husband if you want more information.  I'm in the NY/ NJ area as well.  Good luck with the decision!

Priya A  Hi thank you so much for your response. For some reason I just realize that you had responded today. If you have a chance i would love to talk to you.. 7325130510

Kathleen F.  That’s amazing, thanks for reaching out!  I just read your journal and am so glad you’re handling the recovery like a pro!  Taking it easy isn’t easy!  I can’t believe you got Covid a few days after surgery. That’s scary.  Dr. Stelzer is an amazing man, we are lucky to have been led to him. All my best for continued healing!  I’m thankful for this reminder not to take my now-healthy heart for granted.  Recovery is a special time of self-care and re-examining our values and priorities in life.  

Christopher Cozzi  Hi Kathleen. I'm glad you found a surgeon you trust and like. All the best on your procedure. I am now 4 weeks post surgery. Very impatient, but I am getting stronger every day.

Timothy Andre  Thanks for the kind words Kathleen. You are right, taking it easy isn't easy. So true! One day at a time is all I can do

Kathleen F.  This just came out. Sorry to hear you are facing another surgery but it’s not uncommon, I’ve read. https://jamanetwork.com/journals/jamacardiology/fullarticle/2698186

Kathleen F.  Yes, my cardiologist is Dennis Finkielstein, and is also affiliated with Mount Sinai, like Dr. Stewart. I highly recommend him as well. You might want to try ZocDoc to book an appointment online though - he's sometimes hard to reach (in non-emergencies, I'm sure).  https://www.zocdoc.com/doctor/dennis-finkielstein-facc-md-fase-8825

c l  Thanks Kathleen. I ask because my daughter, a senior in high school, also recently got diagnosed with moderate to severe aortic regurgitation. I saw you're from Hoboken, We are also from central NJ, I thought you might have a cardi in your area. NYC might be a challenge for me, although I trust your cardi is a good one. I'm hoping to find a cardi that might consider the "wait and see" approach, rather than just rush her into surgery. She's athletic, swims competitively and asymptomatic. She's seen two cardi, one pediatric and one adult, as I'm not sure at 17, if she's still considered pediatric. Both cardi is suggesting she have surgery this summer since her left ventricle is moderately dialated. but they havent suggested a second echo that show progression. I just dont want her to be rushed into this surgery if it can wait a couple or few years. Thanks for sharing your info and story. Happy New Year!

Phyllis Petersen  Have they only done an echo? After consulting a surgeon, who will probably want additional tests, you'll have a better idea whether she can wait.

Kathleen F.  I understand; and I know some insurance plans only allow you to see doctors in your state of residence. But if you can, I personally think it would be worth choosing a surgeon and hospital in NYC (taking the train is easy), and I would strongly recommend Mount Sinai; Dr. Stelzer is an amazing person; his bedside manner is wonderful and he operates on younger people as well. Columbia Presbyterian also has a great pediatric cardiology department. My friend's 14-year old son is having a hole in his heart repaired there next week, in fact, and they are from Bergen County, NJ. Jen Huff (on this site), is from Asbury Park; perhaps she can recommend her cardiologist? She had the Ross Procedure at age 31 and was also very athletic. I don't think too many surgeons will "rush" this type of surgery, but are very sensitive to changes in the left ventricle and the age of the patient, among other things. Good luck and please keep me posted. I'm happy to help if I can.

c l  Kathleen F. and Phyllis Petersen,
I'm definitely choosing a surgeon from NYC (or CHOP in PA) if or when she needs surgery, but for Cardiologist, I think might be logistically challenging for us to go NYC for checks or tests. As for the two cardis she's already seen, one suggesting she get MRA and check her aortic root dilation, then expect to see her back for an echo around April (her first echo was in Oct). I also wonder if her left ventricle was a moderately dialated due her competitive swimming (athlete's heart). She's not swimming as many hours per week since last month and onward, so I'm hoping to see the size of LV has reduced? The pediatric cardi also wanted her to go on ACE inhibitors but I dont want her taking meds if not necessary and especially she does not have hbp. Meanwhile the adult cardi says she doesnt need ACE.
I'm so confused and flipflopping between two cardis and not sure which one to follow, or even consider seeing another. Do you think I should just consult with a surgeon and see what his suggestion would be?
In the meantime I will try to contact JENN HUFF . Thanks for your suggestions and advice. I really appreciate it.

Phyllis Petersen  I think the decisions are even harder when it's your child rather than yourself. The left ventricle could be dilating due to the valve issue too. An MRA would give them additional valuable information and isn't invasive, just some contrast which leaves the system pretty quickly. I had both MRA and CTA after the TEE so that they could have the best evaluation possible. It sounds strange that they would want to put her on an ACE inhibitor without a good reason. Which one suggested the MRA?

c l  Yes, it is nerve wracking for me. I dont see many young patients like her on this site. Even for those diagnosed at a very young age seem to be able to wait til at least 30's or 40's before having the surgery. It was the pediatric cardi that suggested her go on ACE, and she said the doctors at CHOP agreed. I did not fill the prescription.

Phyllis Petersen  Would the ACE allow her to postpone the surgery longer? It sounds like you need more expert advice, such as a pediatric cardiac surgeon who sees many cases like this. There are risks in waiting, just as there are risks in surgery and medications. Balancing the risks can be daunting. It doesn't sound like you have full confidence in the pediatric cardiologist you consulted. That isn't going to give you the confidence you need to make this crucial and terrifying decision.

Kathleen F.  Hi, thanks for remembering! We leave next week for Berlin, but unfortunately I developed Achilles tendonitis and had to take a break from training about 6 weeks ago, and now I think I should probably not attempt even a run/walk. I know I will be tempted though! My fiancé and some friends are still running and it will be hard to be on the sidelines, although my ankle really hurts. I think I was a little too excited to be able to run again this past year and perhaps overdid it a little bit . . . In preparation for the Berlin marathon, I decided to run a "local" one first, so I ran the Vermont marathon in May. It was really hot (90s) and humid, and the race was cancelled around the time I reached mile 21 or so. I was allowed to finish and get a medal, but there were no official finish times after they stopped the clock. Which worked out well, because I felt good, but did not overdo it during the last few miles, when we were encouraged to walk it in. When's your next one? Perhaps I will join you!

Kathleen F.  Nice! I just got back from Europe and thought I'd let you know I did in fact finish the Berlin Marathon, with a lot of stretching mixed in with slow jogging and walking. Thank you for all of the encouragement this past year. I figured, even if it's slow, I should complete it if I'm able to! And I'm glad I was able to. Good luck with your races!

Kathleen F.  Thank you Pino! Yes OHS - full sternotomy. I was at about the 6 week mark when I started adding a little jogging (10 seconds, then 30, etc.) to my walking, on a treadmill with a heart rate monitor. My chest/ incision hurt too much before that. I was given the clearance to start running at 4 weeks out, but the jarring motion was too painful so I waited until it didn't hurt as much. I was also off metoprolol by then. Whether you're on beta blockers or not makes a difference in heart rate and how much exercise is recommended, I believe. I kept my heart rate under 140, but also consulted with cardiac rehab specialists, my surgeon and cardiologist. Over time, I felt more comfortable pushing it a little more, and never had any problems or felt light-headed, etc. So I felt like I progressed at a pace that was right for me. I didn't have any idea what I was doing either, and was surprised at the lack of guidance, but I think the doctors trust that we all progress at our own pace. But, looking back at my journal, I do recall one long walk I took, two weeks out, when I started feeling... not quite light-headed, not quite nauseous ...but as if I was pushing my limit a bit. And that it was time to stop. I trusted that feeling and never tried to push past it, as I might have years ago, running marathons and feeling invincible. I have new respect for our bodies' capability to heal itself. Best of luck to you, and please post your progress!

pino correale  Thank you Kathleen, that definitely helps ! I am still taking 12.5mg(per day) of the beta blocker, but i am seeing my surgeon for the first time after my surgery on Jan.13, so i am sure we will cover some territory. In the meantime stay well and thanks for your reply.