Well folks, it's been a long time. I'll make this short - the surgeons in Colombia did not want to operate on me so they didn't. They told me I was in good ...Read more
Well folks, it's been a long time. I'll make this short - the surgeons in Colombia did not want to operate on me so they didn't. They told me I was in good health and they didn't want to interfere. Now you'd think that's great news but my heart cath done in Dec shows some really high pressures. Frustration doesn't even begin to cover it!
Anywho, letting you guys know I'm still fighting the good fight.
Cheers.
J
Marie Myers That is frustrating indeed! Maybe you need another consultation /evaluation? Hoping you get some ans ... Read more
Marie Myers That is frustrating indeed! Maybe you need another consultation /evaluation? Hoping you get some answers!
Barbara Wood That is frustrating! I agree with Marie, a second opinion might be wise. Good luck to you Jason!
The ball is rolling, I'll be headed to Bogota, Colombia for valve replacement # 2. The hospital is JCI accredited so I'm happy about that, the fact remains ...Read more
The ball is rolling, I'll be headed to Bogota, Colombia for valve replacement # 2. The hospital is JCI accredited so I'm happy about that, the fact remains that it could not be done here at home so off I go. The count down has begun in earnest and I'm excited about that. I look at some of your stories and it makes me feel loads better. Big kudos to Adam for starting this.
JJ Milton Good luck Jason! I wish you all the best.
Lori Phillips Roni Reinhold is on this site. She's asking a question you might be able to answer.
Much love, good ... Read more
Lori Phillips Roni Reinhold is on this site. She's asking a question you might be able to answer.
Much love, good vibes, and God bless to both of you! 💕♾
Petey Bello Good luck to you Jason, glad you have a surgery date set & a hospital/surgeon you feel good about! I ... Read more
Petey Bello Good luck to you Jason, glad you have a surgery date set & a hospital/surgeon you feel good about! I will be praying for you as you continue your heart journey! God Bless
Cathleen Weed HI Jason! Not sure if you ever saw my reply to your question on my guestbook page. Did you come to a ... Read more
Cathleen Weed HI Jason! Not sure if you ever saw my reply to your question on my guestbook page. Did you come to a peaceful decision about the valve type? I'm glad you found a hospital you are comfortable with :)
I've never been too good at the waiting game and the anxiety is messing with my psyche. It's been confirmed that I must go abroad for my procedure, re-op's ...Read more
I've never been too good at the waiting game and the anxiety is messing with my psyche. It's been confirmed that I must go abroad for my procedure, re-op's don't happen very often here so the surgeons experienced in this procedure are pretty much non existent. I was really hoping to stay home and be able to have fam and friends around while I recovered, I was actually looking forward to the hospital visits.
I'm scouring the internet to gauge recovery time, how soon I can fly and all that jazz. Everything is relative, it depends on your personal case. I'm not upset cause I'll have my wife with me and at the end of the day this is being done so save my life so......suck it up Jay.
Did anybody have a similar experience?
Cathleen Weed Hi I wrote back on the guest book post you left...but also wanted to say that most people are cleared ... Read more
Cathleen Weed Hi I wrote back on the guest book post you left...but also wanted to say that most people are cleared to fly a week to ten days if all is well...and you can tell the airline so they know. You just have to get up and walk the aisles more often for circulation <3. Also, you can Skype now with family and friends :)
Petey Bello Good luck to you Jason. I was allowed to fly back home at 10 days. You will need the rest in the hosp ... Read more
Petey Bello Good luck to you Jason. I was allowed to fly back home at 10 days. You will need the rest in the hospital, so having your wife there will be a comfort. Your family & friends can visit when you return home which by that time you will be up to having company!
Jason Jeremie Cathleen and Petey......thank you so much for the responses and support. Petey, I hope you're feeling ... Read more
Jason Jeremie Cathleen and Petey......thank you so much for the responses and support. Petey, I hope you're feeling loads better. Cathleen, I saw your response...it made me feel a lot better.
Petey Bello Thinking about you Jason & hoping you are doing well! God Bless ...
I got to see a visiting surgeon from the UK today; a very nice guy who didn't mind the TON of questions I threw at him. I guess they're all used to this by ...Read more
I got to see a visiting surgeon from the UK today; a very nice guy who didn't mind the TON of questions I threw at him. I guess they're all used to this by now. Anyway, the good news is that based on all of my tests my heart is in pretty good condition. Yay me.......so why aren't I "happy". I had the pros and cons of tissue vs mechanical talk today and I must admit.....WOW. I asked what he would do if he were in my shoes and he looked me in the eye and said.....tissue. Lower pressure on the right side is a factor, I'm 34 so it may not degenerate as quickly cause I'm older, it'll be slightly "easier" to implant because of the calcification of my current valve AND......a transcathether procedure after this "should" be the end of my surgery woes. Nothing is cast in stone! My first homograft lasted me 18 years, i "may" get the same out of this one. On the other hand, mech with warfarin and we out an end to this business right now (knocks on wood). I have never been a fan of having to take meds but when it's all about life and death are we really in a position to argue.
Todays question - if you were me, what would you do? Nobody but people with heart valve "issues" will truly understand the implication of this question.
Stephen Doherty Hi Jason, have just been through the valve options trip myself, personally I'm like you am not a fan ... Read more
Stephen Doherty Hi Jason, have just been through the valve options trip myself, personally I'm like you am not a fan of taking meds either, and am hopeless at timing and sometimes forget totally. So for me a mechanical valve was a bit of a worry if I skipped too many and the blood clot issues. My cardiologist thought that my surgeon would want a mechanical one due to being only 42, though when I met my surgeon he was wanting a tissue valve due to past radiation exposure and weakened skin in the area after cancer, he was worried about the bleeding should the skin tear and any blood thinners would just make things worse.
May not be relevant to your issues, but if you are an active guy that gets the active guy cuts and bumps then the bleeding will be an issue to think about with a mechanical valve.
My surgeon is going to put in a larger valve that will accommodate an TAVR implant rather than a sternotomy later on if needed, by then who knows what else these marvelous minds will come up with.
I'd say think about your full lifestyle and the impacts of each valve option on the quality of your life too.
Best of luck and enjoy the rollercaoaster ride, its a doozy thats for sure. Cheers.
Kate Watson This is a tough one. I also had a tissue valve for my first surgery at age 29 and and it lasted near ... Read more
Kate Watson This is a tough one. I also had a tissue valve for my first surgery at age 29 and and it lasted nearly 11 years. I hoped for more years out of it. But in my case, another valve declined along with it. It was not recommended by the various surgeons I spoke to that I have two tissue valves. That would guarantee me another surgery in my 50s, and it's riskier for me given two valves and multiple surgeriers. I also had a rough recovery with my first surgery and dreaded going through this again, both physically and emotionally. So I wanted to try to make this my last surgery, and so decided for 2 mechanical valves. I was very scared about being on Coumadin, but I'm adjusting to it. It's only been about 6 weeks and will take time to get the diet/dosage right. So hard for me to say if I would have chosen differently if it were an option for me. My understanding about TAVR is that it's only been studied in elderly people, but by the time you'd need surgery again, hopefully there will be more research behind it in younger people. Best of luck in finding your answer. It's a tough choice for all of us!
Cathleen Weed You know how I feel...tissue...especially on the right side like that...I mean, I wouldn't even consi ... Read more
Cathleen Weed You know how I feel...tissue...especially on the right side like that...I mean, I wouldn't even consider anything else. By the time you need another (IF you even do) they will do it through your femoral artery. You know I just had TAVR and it was amazing. They are doing it for other valves too. Just a matter of time for all of them. You don't have to plan out your entire life right now. I don't even worry about that. I think of the here and now because that's all we are guaranteed anyway, right? The process of choosing is daunting enough. Choose a lifestyle, not a valve. You know what I mean? That's not meant to be discouraging toward anyone with a mechanical valve at all. I'm just saying in YOUR case, you have a VERY appealing option of choosing a tissue valve for that right side...my donor pulmonary valve is totally fine and it's been 22 years since that Ross Procedure. I don't even hesitate to say tissue for you. No lifestyle change whatsoever.
Jason Jeremie Thanks for the input you guys, it's appreciated. Stephen......I wish you the very best for your proce ... Read more
Jason Jeremie Thanks for the input you guys, it's appreciated. Stephen......I wish you the very best for your procedure skipper. Kate, I know why you went mech......as I said before, I wish you a marvelous recovery, have at 'em!! Cathleen, you make a significant point of living in the now, thank you for that.
Lori Phillips Rollercoaster ride, anxiety? Hey... those are words I've used myself. Luckily, I got a reprieve. They ... Read more
Lori Phillips Rollercoaster ride, anxiety? Hey... those are words I've used myself. Luckily, I got a reprieve. They cancelled my surgery and decided to "watch" my tricuspid valve. Geez...talk about a roller coaster ride! Good luck Jason! You'll do well. Try to answer Roni Reinhold question. Will keep you in my thoughts and prayers. 💕😉
I'm a 34 year old getting ready for round two of open heart surgery. I'm "worried" about one thing...the warfarin. Yep, I'm going for the mechanical this time, ...Read more
I'm a 34 year old getting ready for round two of open heart surgery. I'm "worried" about one thing...the warfarin. Yep, I'm going for the mechanical this time, I don't want to have a round three! Does anyone have a mechanical pulmonary valve? I'm wondering if the On-X can work in that position as well?
Congrats to my fellow survivors, I wear my scar proudly!
Denise Campbell Hi. I had my surgery in March. My on-x is for mitral valve. Getting used to Coumadin hasn't been t ... Read more
Denise Campbell Hi. I had my surgery in March. My on-x is for mitral valve. Getting used to Coumadin hasn't been too bad. You will be in the therapeutic range before they will let you leave the hospital and then you'll go to the lab at least every week initially. You won't have to give up greens but you will have to keep your vitamin k intake consistent always. I too chose mechanical because my surgeon suggested and I don't want to know I'll have to do this again. Good websites for vitamin k foods are. Dr. Gourmet. And the live strong website.
Denise Campbell Potentially forever. The on x valve was created 12 years ago and according to the website have no r ... Read more
Denise Campbell Potentially forever. The on x valve was created 12 years ago and according to the website have no reported failures. I think the Coumadin is the problem for a lot of people. You must take it
Petey Bello Good luck to you Jason, I will keep you in my prayers!
Cathleen Weed I'm curious...when I had a Ross Procedure back in 1994 my surgeon took my pulmonary valve and put it ... Read more
Cathleen Weed I'm curious...when I had a Ross Procedure back in 1994 my surgeon took my pulmonary valve and put it in the aortic position and gave me a donor pulmonary valve (because the pressure is so much lower on the right side of the heart and it could potentially last forever). I have since had the aortic valve replaced again but the pulmonary valve is doing awesome 22 years later. Have they offered you that option? A tissue donor valve? No coumadin that way. Worth asking about..
Anne Cahill I have been on Coumadin for 29 years next month. I was 43 at the time of my surgery. I wish you go ... Read more
Anne Cahill I have been on Coumadin for 29 years next month. I was 43 at the time of my surgery. I wish you good luck and I will keep you in my thoughts and prayers.
Emily Rowley I have underwent OHS twice (kinda wish they would've stuck a mechanical valve in me so I wouldn't go ... Read more
Emily Rowley I have underwent OHS twice (kinda wish they would've stuck a mechanical valve in me so I wouldn't go for round three) and have been on Warfarin-which isn't too bad. Any questions I would be happy to answer them :) Are you worried about the surgery itself or warfarin?
Jason Jeremie Wow. I'm so happy I decided to join this forum....you guys made me smile! Where do I start? Thanks De ... Read more
Jason Jeremie Wow. I'm so happy I decided to join this forum....you guys made me smile! Where do I start? Thanks Denise, Petey and Anne for the advice and good wishes.
Cathleen - my aortic valve is fine, they offered me the tissue but I don't wanna take the chance of a re-op.
Emily - I'm not worried about the surgery, the warfarin has me a bit concerned. The bleeding, the rigors, the "if I don't take it bad things will happen". That's why I'm kinda angling for the On-X but I don't even know if it'll work cause of the lower pressure on the right side.
Again, I say thanks for the comments.....you guys are AWESOME!
Cathleen Weed Just read your story...makes sense now...you had the Ross Procedure too back then! I hope it all gets ... Read more
Cathleen Weed Just read your story...makes sense now...you had the Ross Procedure too back then! I hope it all gets worked out and you have a successful surgery!!
Wanda Mroz Welcome Jason. You'll find a lot of help, support and answers here. Lot of caring people on this sit ... Read more
Wanda Mroz Welcome Jason. You'll find a lot of help, support and answers here. Lot of caring people on this site. Best wishes to you!💞
Rita Savelis Hey Jason, There are so many scare stories about warfarin, it's really too bad. Once your body gets u ... Read more
Rita Savelis Hey Jason, There are so many scare stories about warfarin, it's really too bad. Once your body gets used to it and as long as you are a responsible patient, it's fine. I really am not a meds person, but Ihave gotten used to it. I eat what I want, I do what I want. I think some of the "scare" tactics are to make sure that one is a responsible patient, meaning that you will get blood tests and you will monitor yourself. I'm sure most diabetics have a real frustration when they start their meds but then they just get on with. I hated having to take thyroid meds everyday when my thyroid was removed and now it's just what I do. It's really more of an adjustment. My "adjustment" to post OHS (2 valves replaced, one valve repaired, pacemaker) certainly took a lot longer than adjusting to meds.
Take care Jason, and I'm sorry you have to go through with this. Being a young patient in the cardiac world is not easy.
Jason Jeremie Hi Rita.....I see and appreciate your point;it's true that life merely needs to be "tweaked". I'm gla ... Read more
Jason Jeremie Hi Rita.....I see and appreciate your point;it's true that life merely needs to be "tweaked". I'm glad I can finally speak to people who actually experience the meds.
Wendy.......thanks for the good wishes!
Kate Watson Hi Jason, I am recovering from my second OHS and also chose to get mechanical valves largely because ... Read more
Kate Watson Hi Jason, I am recovering from my second OHS and also chose to get mechanical valves largely because I didn't want to go through this again. The warfarin is annoying to me right now because I haven't quite been able to get my levels stable. I'm learning that a lot affects this drug, not just vitamin K. But I also know that this will just take time to get it stable. Do you have your surgery scheduled yet?
Jason Jeremie Hey Kate.....I don't have it scheduled yet but we're tentatively looking @ August. I wish you a speed ... Read more
Jason Jeremie Hey Kate.....I don't have it scheduled yet but we're tentatively looking @ August. I wish you a speedy and fantastic recovery!! ;-)