Hey Trent. We have a BP guage and stethoscope (father-in-law left it with us before he went back to Russia last summer). It's nice to have as a backup, and we used it once before surgery. MY BP has been great post-op so we haven't had to check it. However, it is good to know it is there in case we need it. Low BP is always a possibility after valve surgery so I guess my recommendation is to get it if you feel it's worth it.
Hope you are enjoying these last few weeks. Looking forward to hearing from you and Chris H. post-surgery. I am doing just fine and very happy we went forward with the surgery. Take care and doesn't hesitate to send a note if you need anything. We are just a few miles away!
Glad to hear the 2nd opinion matched the first. I hope you have been able to straighten out your STD questions. Once I did that and spoke with medical insurance I felt a sense of relief.
Hi, again -- At Mt. Sinai, the "special diet" they keep you on in the hospital is considered heart-healthy. Meaning, no salt, low fat, no flavor. I ate very little in the hospital. Once I got home, I could eat whatever I wanted. First few days my appetite was AWOL, but it's getting better.
Hi, Trent -- I'm relieved for you that the docs agree on your course of treatment. I had both mitral and tricuspid prolapses and was successfully repaired with relatively short time on-pump. In truth, I've never actually even read the report of my surgery so I can't tell you how long, but as I recall, the whole deal took about 5 hours which is typical for the median sternotomy that I had. Where will you be having your surgery? I hear they serve steak at Texas Heart Institute. :-)
Boy am I sleep deprived or what - I can't keep all of my HVJ friends straight - I thought you already had surgery! Your idea about a calendar with everyones test and surgery dates would really help me keep it all straight! I wondered why you were filing for STD after the fact - blame it on sleep deprivation - lol! I am sure it will all work out, it is just a headache to get it all done! Take care, Denise
Hi Trent, glad to hear our recovery is going well. Regarding Short Term Disability. I filed for mine last week for my upcoming testing and surgery. If you have a 7 day elimination period then you should only have to use 5 sick or vaction days ( the weekend counts as 2 of the 7 days). I am not sure why they are telling you that you need to exhaust all of your vacation time?!? But then again every company works differently. I wish you the best in sorting it all out. I am off to Cleveland tomorrow for pre-testing and then surgery on the 29th. Take care and continued good health as you recover - Denise K
Just read your journal entry suggesting a master calendar of sorts with our surgery dates listed. I think that is a fantastic idea! When I discovered HVJ, I tried capturing relevant info (to my case, which is also MVR) and making notes in Word, etc. and there were so many, I couldn't keep up. Next thing I knew there were lots of new people. And on and on.
Perhaps you can convince those in charge of the site to include this - you certainly have my vote!
Good morning Trent-
I can relate all to well to the 'pre-op list'. However; mine is a lot closer having booked for next Friday the 25th. I feel like I am putting things off day to day. Not sure why I am procrastinating...? Agreed, sad news about Cindy. I am sure all the condolences in the world cannot make up for the loss that her family is having to deal with right now. Karen
Waiting is the hardest part. But it helps a great deal when you have the surgery plan is fully determined and you have a firm date, both of which you have, It also helps to have plenty to do in the meantime, so you don't just sit around and think. .... Great plan for the NY anniversary trip.
- Jim Smith
Hey Trent. Accidentally deleted your note on my guestbook, so reposting my response here.
"Thanks for the note Trent. Great to hear from you. Had nothing but good vibes talking to Dr. Ryan and will always wonder if I should have stayed local and gone with the doctor many believe is the best valve surgeon in Texas.
I'm currenlty scheduled for robotic via right mini-thoracotomy, but the final decision will be made tomorrow when Dr. Gillinov looks at the CT scan and heart cath results. I described a little more in my response to Holly on my guestbook regarding why they may not choose robotic. Will be posting the final decision late tomorrow.
As for hospital food, I have read posts from a couple HVJers that CCF's has much to be desired. I'm hoping its a bit better than what Selma has to gnaw on, but sounds like you've got something to look forward to during recovery."
Thanks for your message. I hope you are able to continue your job if that is your passion. If you have heard that in many instances that pilots have rec'd med clearance than you have no reason to think you will not. How severe is your leakage? Did they rate you 0-4? I am told 4 since mine has totally detached or deteriorated. Not sure how they think this can be repaired rather than replaced, but they are the experts, right? How old are your kids? Both boys? I cannot tell only see a little orange bundle. Have a nice weekend and keep posting and I will follow and support you on your journey. Karen
I'd distinguish between a second opinion to confirm a diagnosis and treatment strategy and shopping around for a surgeon. When shopping, if the first one fits the bill, then you are doing OK. Not too many folks will keep looking past that point.
But it's pretty common to get a second opinion regarding diagnosis and the need for surgery. Its a big deal and for me, anyway, it was a big surprise that I needed surgery. So I needed that second opinion to become convinced.
There is some judgement in the call for when to head to the OR. If you have symptoms, not so much: if your regurgitation is severe with the numbers past some threshold then you are looking at the choice between surgery and eventual heart failure and they are going to want to schedule you asap. If you are asymptomatic then you have the additional choice of waiting until symptoms develop before having surgery.
The guidelines say that asymptomatic patients with severe mitral regurgitation may consider surgery if the likelihood of repair is greater than 90% and if the surgery is performed at a center of excellence. Under those conditions your odds of making it through surgery are around 99% and you're normal life expectancy is restored at 90% chance with a successful repair (the other 10% will be valve replacement, which doesn't quite restore normal life expectancy).
If you put off surgery, then your survival odds at one year post diagnosis of "severe" mitral regurgitation are around 95% give or take (and around 90% after 2 years etc). That means waiting for 2-3 months is already as much risk as the surgery itself.
Putting off surgery also lets the heart continue to progressively lose function. Wait too long and surgery is no longer an option.
It is perfectly natural to wonder if it would be better to wait on the surgery and enjoy family time, or to run the risk of surgery and maybe not come out of it. The numbers I quoted would say that it may be reasonable to put it off for a small number of months, but beyond that it is a measurably worse deal than going for it. If your surgery risk is at the high end, then its not so clear cut.
I wanted to be around in 20+ years, so I chose the path that I reckoned would give me the best odds of that: earliest possible surgery.
A high surgical risk patient who wants to be around for 2 more years might make a different, and equally rational, choice.
Anyway, this is the kind of thinking you can use to wrap your brain around when the best time is to have surgery.
But I leave with this thought. Having heart surgery is a hard thing. You have to be brave and it's easy and natural to lose your resolve. Just focus on the gift you are giving your family: the gift of you for many years to come. It's a gift of love and courage.
Yes, Trent by all means get a second and a third if needed...I did..I was told I had a birth deformity of two leads at top of heart instead of three coming from the Aorta I found this out after having the heart catherization and also third opinion from the surgeon who told me "has anyone told you you have an anurysm". I was amazed and stunned to learn the base of my aorta was also swollen from not getting enough blood flow....I chose this surgeon to do the surgery... The best place I know of is Henrico Doctors Hospital in Richmond....They are superb and the best part of it is I am recoverying and doing well just trying to get and keep steady coumadin levels....I pray you will be fine and keep focused because you know this has to be done. One step at a time...Keeping a journal and having a medical power of attorney is a good move also.I did that. God Bless and ..remember take a day at a time....slow down and smell the roses and belive me after the surgery your life will take on a new meaning and I look at things just a bit differently and really appreciate my life and Jesus Christ for saving and keeping me because it is a leap of faith when you've worked all your life and then have this giant leap to take....IT IS A LEAP OF FAITH where I put myself in his hands and just depended on Christ that taught and gave knowledge to the doctors to help me...And they helped me...I'm so proud that I HAVE A SECOND CHANCE.. Just remember that when we are the weakest he carries us.
Like the foot prints on the sand..:)
Hey Trent. I did not get so much of a second opinion as a second hospital to do the work.
The Heart Institute near where I live did not do the Robotic procedure. I wound up finding the DaVinci at Mass General in Boston and wound up going there after finding out that Dr. Agnihotri was on of the best around. 100% success rate was what I was looking for. they wound up finding more damage than the first hospital found. So a Second look is just more information for you. It really is up to whether you are comfortable or not with your hospital. Not just your Surgeon. Good luck...I'll be watching your journals.
I didn't get a second opinion for my MVP either.
My surgeon was recommended by a friend of a friend who has had two heart surgeries. he was the same surgeon that was recommended by my cardiologist. When I met him, I felt very comfortable and confident in his ability to repair my MR. He comes from a center of excellence (Yale) and has done 1000+ mitral valve repairs. I mentioned to my cardiologist that others recommend 2nd opinions and he did not think it was necessary.
Like Kerry and Cindy, I didn't seek a second opinion either. I'd done my research and had narrowed it down to two docs, one of which was the one my cardiologist recommended. Once I met and felt confident in him, I stopped looking.
With our diagnosis, we want someone who has done hundreds if not thousands of these procedures and if your guy/gal fits the bill, I say, go for it!
As for which incision, at 60, I seem to be one of the geezers on this board. My surgeon does both the mini thoracotomy and the mini sternotomy (not a fan of port access), but recommends the mini thor for folks under 55 who heal faster. I figure whatever he's most comfortable with works for me.
Hi Trent I did not seek a second opinion when it came to deciding on surgeons, I did with cardiologist, but just like Kerry I had been doing a lot of research and had a good idea of what procedure I was really interested in getting and the surgeon that I have is the one that came up in my area as the best and he's the one my cardiologist first sent me to. I immediately liked him and trusted in what he was telling me. Since my first meeting with him I have ran in to several people and he is highly regarded here in San Antonio.
I think the big thing for you is how do you feel about him, if you feel 100% then I'd stop searching cause this process is very stressful and that is one of the big issues besides valve choice and then of course the waiting.
I did not get a second opinion for my mitral valve repair either. When the topic of surgery first came up with my cardiologist I researched surgeons and knew who I wanted to perform my surgery. After my TEE my cardiologist said, "It's time, and I'm sending you to Dr. Massimiano." Since that was who I wanted anyway I was happy. After meeting Dr. M. I had no questions or doubts so I scheduled my surgery. I knew I needed it done and I liked and respected the surgeon my cardiologist said was the best, so why drag the process on any longer?
If my surgery was more complicated, or I didn't feel 100% confident in the surgeon, I'm sure I would have kept looking, but the most important thing is to go with your gut.
Best of luck!
My surgery is scheduled for May 17th with Dr. Marc Gillinov at Cleveland Clinic. The timing worked out well as my current construction project is finishing up and Gillinov had a 3-month wait. It's going to be a big pain to travel north (and a bit more $), but I thought there might be a chance of having the surgery robotically, which might result in a slightly quicker recovery period. I expect they will be using the robot in Plano within the next year or two, but honestly there is probably little difference between the two methods in terms of incision size and success rate. Still wonder if it was the best decision to choose outside the area.
I should be posting an update on my journal tonight: http://www.heart-valve-surgery.com/journals/user/thomashunt. Just confirmed the insurance this week and had my last cardiologist appt yesterday. Only issue lately has been a low blood pressure reading (found out yesterday) due to Metoprolol, which has now been cut back. Looks like you will be almost exactly a month behind us so I'll let you know via HVJ if anything interesting comes up. Feel free to contact me anytime by my email if you prefer: firstname.lastname@example.org.
Hi Trent. It's interesting how similar our stories are: I'm 36, and live just east of you in Parker. I was diagnosed severe mitral regurgitation (need bi-leaflet repair, not sure if that's the same as yours). I seriously considered Dr. Ryan. He met with me for 45 minutes and answered all my questions; and I did feel he was the best heart surgeon in Texas. I'm in relatively good shape and asymptomatic (except for 2 occurrences of A-fib) and have the exact same feelings you have about whether or not to go forward with this. My wife thinks we are rushing into it and if something happens, we might have thrown away several good years we could have spent together with our daughter.
Does it make sense to go through such an invasive procedure when I feel fine? For me, the second occurrence of A-fib sealed the deal. I didn't like the idea of the wear and tear of another cardioversion, but mostly I didn't want to wait until there was permanent damage. The success rates of top surgeons like Dr. Ryan make it so unlikely that we won't survive and go on to a full recovery.
One thing that has helped me is to read as many patient stories as possible, including those heartbreaking ones like those of Kelly Nugent and Lori Barta. Their stories have helped us better appreciate this remaining time before surgery, and have a better understand of the seriousness of the surgery.
Understand the angst regarding earliest possible surgery. Went through all this for my mitral valve repair a year ago. But now am more than back - and pushing for more. I am a total advocate for going "all in" with being involved in medical planning, preparing emotionally, and recovering physically. This is not a 100% sure thing and you need to get all the edge you can, where ever you can.
The official guidelines (link below) recommend that asymptomatic patients with severe mitral valve regurgitation consider surgery for repair if it is performed at a surgical center of excellence and if there is a 90% or greater chance that the valve can be repaired rather than replaced. This is because once symptoms develop your risk skyrockets. Looking at the literature, my impression is that at the onset of symptoms life expectancy without surgery is 5 years give or take. Not so happy, especially as those are 5 years of declining heart function. I have to say I was taken totally by surprise that I could be on such a nasty downward path. I found the guidelines super useful and by following them avoided some risks my first cardiologist would otherwise have had me take on.
There's a link to the pdf version. Print it out and take it with to consults. Getting involved in planning for your surgery and recovery, making smart choices, and taking concrete steps is one of the best ways allay anxiety. If you can get to a place where you know you've done all you can for a successful outcome, that's a really great place to be.
I sure understand, Trent! I've known about my May mitral valve surgery since February and more than once, wished I hadn't had the "luxury" of booking so far ahead. It's interesting, though....on the one hand, you want it done and over with, but if you keep hanging around here on HVJ, you'll see literally dozens of people go before you, feeling all the things you are feeling, and come out the other side doing great. So....it's both good and bad to have to wait. I found that just getting myself educated went a long way toward allaying the fear.
You'll do great!
I had the full sternotomy. It was not painful. I guess that area has so little muscle that the nerve endings are not as sensitive as I expected.I am not saying that there was no discomfort, but on a scale of 1-10, I was never above a 4/5. I was given a pain killer in ICU, but did not like the feeling and only took Tylenol after that. It is not a bad memory for me as crazy as that sounds.
Keep talking to people on this site. It really gives you strength.
hello trent. i am new to this site and just read adam's book, it does help. i am a 37 yr old female and mom of 3 little people. just heard my news of a faulty heart and trying to deal with all the steps.
i know what you are going thru and am on your side. one step at a time.
hang in there.
I had mitral valve repair on 12/5. I was released from the hospital on 12/9. It was much more doable than I ever expected. the discomfort was less than I expected. The recovery went well. I felt an improvement every day. I was back to work four weeks later,but I am not a pilot. I was very much surprised how the whole experience unfolded. You seem to be very happy with your surgeon. That is very important. You will find that the waiting is the hardest part. I know you will do well.
Welcome to HVJ. This is an amazing community. We have all been in your shoes, so ask any question you have. I think you will be amazed at the responses and support you receive from this site. I am 8 weeks post op for AVR and root repair, and I am doing great. Check out my HVJ, people have told me it is helpful. The waiting is the hardest part. You are smart to get it going.
Hi Trent. Welcome to HVJ. You will find this site amazing. I have meant so many wonderful people here and am so glad I found it. I have aortic stonsis/ regrugatation and aneursym. I have been here since Feb. Right now mine is moderate and havent seen a surgeon as of yet. When I do I will feel like maybe I am on the road instead of playing games. My doctor says its a little worse and he will send info to a doctor, but then when I see him he just says not to worry. I can't make him understand I am not worrying just want to get back to normal. So right now I am waiting for June/July for next test and see what he says, and if I don't like what he has to say will get second opion and go with it. Both of us will make it someday and I hope it is soon. Good luck to you.
For the long haul
Hi, Trent --
I've been hanging out here for a couple of months and am scheduled for my surgery in May. You've come to the right place. HVJ folks are amazing. There's so much to be learned, both from the folks who have been through it, and online. I see you have MVR....in addition to Adam's site, you might want to check out this one:
It's got a wealth of information on our diagnosis and you get to see my surgeon! :-)