Linda B. posted a note for linda that says:
I just stumbled on this link, 4 years after its start. My heart surgeon in 1962 a Jackson Memorial Hospital in Miami, Fla. was Dr. Robert Litwak! I was 11 at the time with atriel septal defect and 3 veins on the wrong side of the heart. They used a then revolutionary Teflon tube to lug the hole and drain the veins. No problem since. Litwak went to Mt. Sinai a couple of months after my surgery.
I too had the magic of Dr. Litwak effect me in 1963. My pediatric cardiologist was Dr. Steinfeld who I always looked up to as my second father. We are both very lucky people. I hope that you are able to get that same excellent care as you had in the past. All the best!!!
I feel for you Linda, I think I would be getting a second opinon. I would think going to rehab would be to much stress on you. Hope you get everything done like you want it to be and will soon be over.
I to am in the same boat. Think I will hear something from doctor then he says it could be 5 months to 5 years. Good luck to you.
For the long haul
Hi Linda, at times like this, one word comes to mind "Shit" (excuse my french). It just seems to sum it all up completely. I know you are frustrated. Is there a seonc surgeon you can see? DVB has good advice, push for more answers. Those close to you love you and probably just don"t know what to say. Breath deep, take it slow and figure out if the rehab is key to your recovery. If it is, unfortunately, you know what you need to do. Try to stay strong. Tomorrow is another day.
Hi Linda: Sounds pretty frustrating. The business about rehab vs surgery may have to do with risk. Ask to see the evidence (studies) that show that people in your circumstance have better outcomes when they undertake a few months of rehab prior to surgery instead of immediate surgery. My cardiology team was happy to point me to studies. Having confidence in the science behind the course of treatment is important when it comes to knowing that the course set by your doctor is right. Take care Linda -- DVB
Linda, I'm sorry you seem to be getting somewhat of a run-a-round. I don't know who you are seeing, but have you considered going to one of the major centers such as Cleveland Clinic, where you can actually see ALL the different specialists in one trip? They have a teamwork approach there. I know how frustrating the waiting is, I have waited since October myself, but my wait was because my surgeon did not have an opening until March 13th. My case is not nearly as complicated as yours, pretty straight forward, I can't imagine the roller coaster you have been on. It isn't any of my business, but maybe you can consider the Cleveland Clinic. It is not difficult to be seen there, you can refer yourself, don't need a doctor's referral, just need to send them all of your test results. Check out their website, they give you all the details. Hope you get some answers soon, I know the waiting is awful.
We are here to support you and whatever decision YOU make.
Hi Linda, sounds like you are ready for the meeting with your surgeon. You have your questions, the right attitude and as a health care professional, you know you are your own best advocate. Good luck tomorrow.
I also was born with a congenital defect which causes my pulmonary valve to leak and stenosis of the left pulmonary artery( I also had a hole in my heart). Its awesome to see how good ur health has been over the years. Are should I say how long u went without having another surgery in ur adult life. Nowadays they advise younger congenital adults like myself to Have valve replacements in early adulthood. Since we have almost the same condition I just wanted to ask u what kind of problems if any,have u had over the years. For example: with any of ur pregnancy's,exercising,etc. Its just good to know their are others out there that have the same problems as me.
Happy pills are a good thing, especially when they work!!!!! Try to keep up the positive outlook. Dying is a fear we all have faced at one point during this journey. Dismiss it quickly. Odds are in your favor, and yes, lots of living left to do!!! Stay strong.
I, too, have a difficult time with meds but finally called my GP this weekend because I think I need something. I cry for no reason and sometimes it fills like my heart is going to jump out of my chest. Oh well, this too will pass.
My surgery is March 5th. I am still working which makes it more difficult because I feel stressed trying to accomplish everything so that I don't inconvenience anyone.
It sounds like you are going in the right direction. I have read the book also. It does make me feel better to be informed about what I am facing. The information on this site is awesome. Also, being able to share experiences is a big help to me.
Hi Linda, I wanted to share my experience with you. I live in New York City, I am fortunate to have easy access to many top surgeons. My cardiologist recommended a surgeon, that I could find very little information about. For my second opinion, I went with a very well known, top guy at a different hospital. In the end, I chose the surgeon recommended by my cardiologist. I would not say he is less known than the other surgeon. In fact, both guys are among the top surgeons here. They both did around the same amount of procedures each year and both are totally amazing. Main difference, one was much more into PR and the other just let his work speak for himself. Neither approach is good or bad, just different.
So, maybe your guy is an 'under the radar' guy. Ask all the right questions and get at least two opinions, then see how you feel. If you want to come to NYC, I can help put you in touch with the doctors I saw. Both were at New York Presbyterian Hospital. One was uptown at the Columbia campus and the other was midtown at the Cornell campus. Also, Adam is very good at making connections to surgeons.
Hi Linda, welcome to the HVJ site. You are in great company, lol. First of all, let me say we are all here to support and encourage one another. You will find wonderful people here to help you through this mountain climb.
I also worked in the medical field for over 30 years before retiring in 2010. I was a Laboratory Technologist. I also used to smoke. I quit in 1997 and I am sooo glad now expecially that I did. One tip that was very helpful for me, you might want to try it. I kept an unlit cigarette around and when I got an urge to smoke, I just picked it up and "pretended" it was lit and smoked away! It was amazing how it actually satisfied the urge. Good luck, I'm sure you know that some surgeons refuse to do heart surgery until you have been smoke free for a period of time.
2nd tip: Mass Gen is a very respected, highly ranked facility for cardiothoracic surgery. If you go to US NEWS and World Report Hospital Rankings and click on Mass General, you can then click on doctors or physicians ( I already forgot exactly how it is listed), still on Mass General and you will get a popup of different specialties. Go to the cardiothoracic surgeon line and when you click on that it will bring up a list of surgeons. I just did that and the surgeon you mentioned is not listed. On this list, there is a Dr. Cary Akins listed as CT surgeon specializing in heart valve procedures. He also has a star beside his name. This means he has been recognized by his peers to be in the top 1% in the nation. This ranking is based on several things, one of which is volume of procedures he has done. Other doctors listed, if they don't have a star, are still ranked in the top 10%. One thing that I have learned about this surgery is that just about the most important thing in having a good outcome is the experience of the surgeon...how many of the specific procedures he has done. It is especially important when dealing with someone who has had previous heart surgery. Make sure you choose a surgeon who has plenty of experience. And of course, being a nurse, you know to always get a second opinion.
I myself will be having surgery on March 13th. It was a very difficult decision, one I still struggle with to some extent, but I will be traveling from SC to Cleveland for my surgery. I have only one shot at this (I hope) and I want to be with someone who does this every day, not someone who is good, but only does it a few times a year. You probably wouldnt get that at Mass Gen anyway, but check this doctor out a little more. We all want our surgeon to be nice, that's a good thing, but I would rather he/she be a great experienced surgeon, then he/she can be a jerk if they want to, lol.
Take care and good luck with your journey. So many decisions!!!
Adam's book is great...I am almost 6 weeks post surgery and still consulting it! Wherever you are in your journey it will continue to calm your fears and make you feel like you know what the next stage is. It helped me soooo much as did posts from others on this site sharing their journey. Anxiety is a tough one to reign in....our heart issues contribute to that problem too. I had afib about a year before my surgery and had to get something for anxiety and it helped me soooo much. It's a long journey but time races by and the good thing is once the surgery is over...every day is better than the ones before. You will have great days and not so great ones but I always felt like I was making forward progress. Blessings and prayers.
I so understand your frustration. I'm 46 and have congenital heart defects and had surgery at 3 mths old. I've known since I was 20 that I had mitral stenosis but was never symptomatic until this past sept when I came down with pnemounia. Went from mild to severe with a fib in less than a month. I had my replacement surgery December 22nd. I agree with Linda about having a second opinion but you sound like you need the surgery. Make sure you get a good surgeon. Especially since this is a second surgery after many years. Sometimes it may feel as though they are dragging their heals when in fact they are looking at all options and determining the best plan for you. Take care of yourself and remember we are here for you.
Linda, I feel your frustration. I have known for about 10 years that I have aortic valve stenosis. It started as mild and has progressed to critical now. I had a significant change just from June until October of this year. In November, I had a heart cath and the valve was so narrow, they were not able to cross over with the catheter. My cardiologist told me at that time "it is time to get it fixed". I thought then that I must be getting ready to kick the bucket or something, but...hope this makes you feel a little better...I am just having surgery on March 13th. So, even critical isn't THAT critical. So don't worry too much about the time that has passed, but find yourself a cardiologist that you believe is "taking good care of you". I think we, the patients tend to freak out a little more than the doctors do. I mean, after all, it's our hearts...not their's. And make sure to get a second opinion on everything, even if you choose to go with the first one. Welcome to the HVJ site, you will find great encouragement here. Good luck with your journey and please keep us posted.
Hi Linda! Welcome "home". We're here for you to lean on. It shouldn't take months to go from 80% needing surgery before Thanksgiving to a consult with the surgeon in March, that's frustrating. The waiting game is the hardest part, that's for sure. Don't be afraid to be a nag and your own advocate. Take care -- DVB