Hi Jenn,
I was in convo with Kathleen F. about my daughter and she mentioned you might be able to help me. My daughter's a senior in high school and swims ...Read more
Hi Jenn,
I was in convo with Kathleen F. about my daughter and she mentioned you might be able to help me. My daughter's a senior in high school and swims competitively, was recently diagnosed with moderate to severe aortic valve regurgitation.
She's asymptomatic, but was advised by her pediatrician to get her heart checked "just in case" since I had my AVR replaced a little over two years ago. and I wanted to know if you can share your cardiologist info since you live in asbury park area. I'm in central jersey. She's already seen two cardis, one pediatric and one adult. I'm not sure if she is still considered pediatric at 17? What's your thought?
Thanks.
Hello Jen,
I'm Jared from New York. I had double valve replacement also. I had my mistral done twice and my aortic once. It's tough falling asleep now ...Read more
Hello Jen,
I'm Jared from New York. I had double valve replacement also. I had my mistral done twice and my aortic once. It's tough falling asleep now with the clicking inside me. You got mechanical valves to right? My first surgery was 17 years ago and my 2nd was 7. Wanna chat sometime Id like to hear your journey.
Jen Huff Hi Jared - no, I had the Ross Procedure so I have my native pulmonary valve in the aortic position an ... Read more
Jen Huff Hi Jared - no, I had the Ross Procedure so I have my native pulmonary valve in the aortic position and a human cadaver valve in the pulmonary position.
Hi Jen,
I just found out 2 weeks ago that my congenital bicuspid aortic valve needs replaced along with now having an aortic aneurysm - I too have been asymptomatic ...Read more
Hi Jen,
I just found out 2 weeks ago that my congenital bicuspid aortic valve needs replaced along with now having an aortic aneurysm - I too have been asymptomatic and am in extreme shock! I just emailed Dr. Stelzer to see if I can possibly travel from SD to NY to have the Ross Procedure - any advice???
Jen Huff I'm sorry for the delay - I just saw this now. I use to live in San Diego too by the way :) If you ... Read more
Jen Huff I'm sorry for the delay - I just saw this now. I use to live in San Diego too by the way :) If you can go to Dr. Stelzer, that would be great. He is the most amazing person and surgeon that I have ever met. I'm not sure how old you are, but I'm assuming the Ross Procedure is a good option for you since you want to see Dr. Stelzer? If you can't get to see Dr. Stelzer, I am sure there are some great surgeons in SD. Please keep me posted! My email address is jwillman7@hotmail.com if you want to reach out.
Jen. Any good news from Stelzer? I'm curious to compare how you feel after jogging. I know we are all different, but I have felt a bit tired after jogging ...Read more
Jen. Any good news from Stelzer? I'm curious to compare how you feel after jogging. I know we are all different, but I have felt a bit tired after jogging a 12 min mile. A bit means later in the day i felt it and was fairly wiped and a little tired the next day. I only had rehab once so I'm still building steam...
Jen Huff Yes! I have been jogging on the treadmill. About a 15 minute mile for 2 miles. I'm really not too tir ... Read more
Jen Huff Yes! I have been jogging on the treadmill. About a 15 minute mile for 2 miles. I'm really not too tired after. I'm going to try jogging outside this week. I have been going to rehab 3x a week. Dr. Stelzer said not to have my heart rate go over 140.
Hey Jen, I think the all-clear to drive is usually at week 4. I don't drive regularly so didn't think to ask. I was more concerned with being able to run, ...Read more
Hey Jen, I think the all-clear to drive is usually at week 4. I don't drive regularly so didn't think to ask. I was more concerned with being able to run, have a coffee and a glass of wine!
Jen Huff Thanks! Do you gave a good running watch/heart rate monitor? I have a Garmin Forerunner 110 but not s ... Read more
Jen Huff Thanks! Do you gave a good running watch/heart rate monitor? I have a Garmin Forerunner 110 but not sure the HR monitor is accurate.
Damian Kudelka Great! No stopping us now!!! Check out my journal it's on there or Google healing heart run May ham ... Read more
Damian Kudelka Great! No stopping us now!!! Check out my journal it's on there or Google healing heart run May hamptons. It's may 17 I beleieve.
Jen Huff Great thanks! Do you wear a heart rate monitor when you jog?
Damian Kudelka I didn't last time, but I intend to. Going to rehab tomorrow for the first time so will ask them abou ... Read more
Damian Kudelka I didn't last time, but I intend to. Going to rehab tomorrow for the first time so will ask them about bpm ranges. What have you heard about heart rate?
Jen Huff Dr. Stelzer said to keep mine under 140. I go to rehab tomorrow so we will see. I have a heart rate m ... Read more
Jen Huff Dr. Stelzer said to keep mine under 140. I go to rehab tomorrow so we will see. I have a heart rate monitor but I'm not sure if it's accurate.
Hi Jen,
Are you on coumiden? Or did you get a tissue valve? I wondered what your experience on coumiden has been like.
Jen Huff Hi! I had the Ross Procedure so no mechanical valve for me.
Janea Christensen I have never understood what the Ross is. It must be a valve repair?
Jen Huff My aortic valve was replaced with my pulmonary valve. My pulmonary valve was then replaced with a hum ... Read more
Jen Huff My aortic valve was replaced with my pulmonary valve. My pulmonary valve was then replaced with a human cadaver valve. I also needed my aortic root replaced.
How is your cardiac rehab going? Have you thought of anything else we should take to the hospital?
Jen Huff Cardiac rehab is going slow. I want to do more but they won't let be yet bc my ejection fraction is l ... Read more
Jen Huff Cardiac rehab is going slow. I want to do more but they won't let be yet bc my ejection fraction is low so I need to wait for my next echo on 4/3. I will see what my surgeon says. Better safe than sorry! I think another thing to bring to the hospital is maybe some special food treats from home. The first few days I had no appetite but when I did, my doctor said I had no restrictions and I craved Justin's peanut butter cups! Lol
Carol P. from Colorado posted a note for Jen that says:
I pray for speedy and complete healing, Jen. My husband meets our surgeon in a little over a week. He had rheumatic fever as a kid (we're both 66--been married ...Read more
I pray for speedy and complete healing, Jen. My husband meets our surgeon in a little over a week. He had rheumatic fever as a kid (we're both 66--been married 46 years). He needs an aortic valve replacement. God speed, Jen.
Jen Huff Good luck to you and your husband, Carol! My husband has been a real trooper putting up with me :)
Jen, best wishes , I had aortic heart valve replacement in 2010. after first week I was ready to go, not a bad experience went back to work as Texas prison ...Read more
Jen, best wishes , I had aortic heart valve replacement in 2010. after first week I was ready to go, not a bad experience went back to work as Texas prison officer in 8 wks at age 67.
Jen- Hope all goes smoothly tomorrow and you are feeling confident and having a nice evening and some sleep tonight. Won't be long until you are sending us ...Read more
Jen- Hope all goes smoothly tomorrow and you are feeling confident and having a nice evening and some sleep tonight. Won't be long until you are sending us all updated posts in your own recovery! Be Well.
Damian Kudelka. Dak344@gmail.com posted a note for Jen that says:
You will do amazing tomorrow. Maybe listen to so guided imagery / positive affirmation videos by belleruth naparstek. You are healthy, vital, and strong. ...Read more
You will do amazing tomorrow. Maybe listen to so guided imagery / positive affirmation videos by belleruth naparstek. You are healthy, vital, and strong. You are surrounded by loved ones - past, present, and future. You got this! You got this! You got this!
Hi Jen,
Good luck to you. I has my Ross by Dr. Stelzer on 3-7-12. Coming up on my 3 year anniversary. He is THE MAN! No worries. Before you know it you will ...Read more
Hi Jen,
Good luck to you. I has my Ross by Dr. Stelzer on 3-7-12. Coming up on my 3 year anniversary. He is THE MAN! No worries. Before you know it you will be running around like it was nothing. Promise! I see you have some support from Elizabeth Devaney. She is awesome and was a great support for me too. Sounds like Damian did well this past Friday. I will sign up to keep track of you. Looking forward to having you in our Ross family.
Elizabeth Devaney posted a note for Jen that says:
Jen,
Yes...absolutely back to better than ever! I often forget that this happened to me at this point. Valves are working perfectly and no issues. I even ...Read more
Jen,
Yes...absolutely back to better than ever! I often forget that this happened to me at this point. Valves are working perfectly and no issues. I even forget how the recovery went but I remember sneezing hurt for at least 6 months....and pulling was hard for a long time as well. I can now lift and move furniture without even thinking about it, Sending more support your way.....this is the hardest week for sure. A very emotional time....but then, it's over....and you will be on your way....
Jen Huff Thanks so much, Elizabeth ! I'm glad to hear everything is going so well for you. I can't wait until ... Read more
Jen Huff Thanks so much, Elizabeth ! I'm glad to hear everything is going so well for you. I can't wait until I'm on the road to recovery! How did your incision heal?
You havey my support. If want to talk send me your contact info
Jen Huff Thanks so much Damian! I'm glad to see your surgery went well! How are you feeling?? I would love to ... Read more
Jen Huff Thanks so much Damian! I'm glad to see your surgery went well! How are you feeling?? I would love to chat more. My email address is jwillman7@hotmail.com
Elizabeth Devaney posted a note for Jen that says:
Jen! 2/27 is best day with Dr Stelzer! It is my Ross procedure anniversary! I also share this anniversary with Chris Dixon. 2/27/2008 for me and 2/27/2012 ...Read more
Jen! 2/27 is best day with Dr Stelzer! It is my Ross procedure anniversary! I also share this anniversary with Chris Dixon. 2/27/2008 for me and 2/27/2012 for Chris. Both leap years for us....you are in the best hands. Dr Stelzer is an amazing man and surgeon. The kindest eyes...if you need anything...I am close in NJ...((((heart hugs))))
Elizabeth Devaney
Jen Huff Thanks so much Elizabeth! Are you back to all of your normal activities now? How do you feel? Happy a ... Read more
Jen Huff Thanks so much Elizabeth! Are you back to all of your normal activities now? How do you feel? Happy anniversary :)
Jen, Hi I read your story and it sounds very similar to what I'm looking at. I'm 33 and never had any knowledge of my bicuspid aortic valve until I got endocarditis ...Read more
Jen, Hi I read your story and it sounds very similar to what I'm looking at. I'm 33 and never had any knowledge of my bicuspid aortic valve until I got endocarditis in Dec 2014. I've got the infection cleared up but I am left with severe regurgitation. At this point I'm asymptomatic and they (Univ of Michigan) are not telling me I need surgery yet. The difference in your case is that they are obviously recommending surgery. I'm curious what basis/test result they are using to recommend surgery now when you are not showing symptoms? I certainly don't want to rush surgery but am afraid of causing irreparable damage by waiting. I wish you the best of luck!
Jen Huff Hi Tom - I had both an echo and TEE. My left ventricle is enlarging due to my heart overcompensating ... Read more
Jen Huff Hi Tom - I had both an echo and TEE. My left ventricle is enlarging due to my heart overcompensating for the severe regurgitation. I think that's one of the main reasons they are recommending surgery. Plus I'm limited in my activities right now - I can't lift weights. I am a very active person - lifting weights and running. I would rather have the surgery now and recover and be back to normal :) let me know if you have any other questions!!! Good luck and positive thoughts to you!
Hi Jen, Great to meet you and welcome to our community! Like you, I had a BAV. I was 33 when I had my surgery and opted for the... Ross Procedure. 9 years ...Read more
Hi Jen, Great to meet you and welcome to our community! Like you, I had a BAV. I was 33 when I had my surgery and opted for the... Ross Procedure. 9 years later I'm doing Tony the Tiger GRRREAAAATTTT!!!
Fyi, you are in the best of hands with Dr. Stelzer. I have seen Dr. Stelzer operate. He's a Ross Procedure guru. Did you get a chance to see this video with Peter yet?
https://www.youtube.com/watch?v=YUXt7h0a5z4
Anyways, I'm here to help. Let me know if I can.
All the best,
Adam (patient & website founder)
http://www.Heart-Valve-Surgery.com - Learn the advantages of the Ross Procedure surgery for patients with aortic valve disease in this special video with Dr....
Adam Pick P.S. Here's another reason to feel great about Dr. Stelzer... :)
After I was diagnosed with severe aortic stenosis and regurgitation, I chose the Ross Procedure for my heart valve replacement surgery. While this approach to a
Jen Huff Thanks Adam! I'm so happy things are going well with you!
Pam Driggs Great video!! Now I want to call my surgeon tomorrow and ask about the Ross procedure. I feel like ca ... Read more
Pam Driggs Great video!! Now I want to call my surgeon tomorrow and ask about the Ross procedure. I feel like canceling my surgery on the 23rd until I can learn more about this procedure!!
Jen Huff Pam - let us know if you have any questions! I'm far from an expert but have done a ton of research! ... Read more
Jen Huff Pam - let us know if you have any questions! I'm far from an expert but have done a ton of research!
Hi Jen, I just saw your post in my journal. Yes, I am definitely glad I chose the Ross with Dr. Stelzer. Mount Sinai was fantastic too. I didn't like the ...Read more
Hi Jen, I just saw your post in my journal. Yes, I am definitely glad I chose the Ross with Dr. Stelzer. Mount Sinai was fantastic too. I didn't like the idea of having to replace a tissue valve every decade, and I also didn't want to be on blood thinners with a mechanical valve, so the Ross really appealed to me. I think we're extremely lucky that Dr. Stelzer is such a gifted surgeon at this procedure - the best in the world, I'm told. That made it a somewhat easy decision for me. I stopped most exercise for the 5 months leading up to surgery, except for pilates and some really easy swimming or light jogging now and then. That was definitely hard, but I know I have the rest of my life now to run, and it should be much easier and definitely safer. I'm curious to see whether I feel much better when I really start running again, and whether I was truly as asymptomatic as I thought.
Jen Huff I'm so glad to hear that everything is going well for you!