Did you go on a lake vacation? We just returned from a week at the beach. I too have numbness, and on my right side. I can relate where you say you can't believe it was you on that table. I felt very blessed to have just spent our 18th annual beach vacation with our immediate family and closest friends. I heard last night on tv 'we are all only a heartbeat away from death'. Had I have heard that some years ago it probably wouldn't have phased me, but it really hit hard when I heard it. Hope you continue on your road to recovery.
Thank you very Trent for journaling. I have the same condition as you had but I am on the waiting and evaluating options "Adam is a blessing to all of us " and so are all of the HVJs who share your journey. I will meet my surgeon on the first of August. I have watched all the videos about mitral valve repair however first hand accounts take the wonder and fear our of the process. The wait is definitely more difficult I am ready now. I will keep you as well as the rest of us in my prayers. God Bless you and your family.
I have to laugh...I am 8 wks and despite the scrubbie thing in the bath and using the pool I too admittedly have a lingering tape residue...
Take it easy going back to work. I did 7:30-2 last week and 7:30 - 3 this week and that coupled with a couple/few days of cardiac rehab does leave me a bit tired.
So funny you mention the tape residue.....I just found some this morning! My surgery was 6/4!
I felt like I was sprayed with a tacky glue that would not come off with soap, water and vigorous scrubbing. It drove me crazy for a good 3 or more weeks.
Let me know when and where and I'll be there. You probably know this, but there is a former valve patient (whose husband is also a valve patient) on valve-replacement.org that posts many messages about Dr. Ryan's fine reputation. Just a thought as a lunch invite.
Hope rehab is going well. Will have to compare notes one of these days on progress. :-)
Trent. Glad things are going well. looks like a couple of great kids depending on you to keep up the good healing work. Yeah I find it odd that some people get put on Coumadin and others not. I wasn't put on Coumadin, but a few weeks later had a series of TIA strokes and had to go in for a TEE. They thought I might be throwing clots off the hear sutures or the ring in my heart. Wound up being what they call a Low Flo stroke. Blood pressure being too low. So onto Coumadin I went just in case. I just got off that. Also in my case I did not have to go to Rehab. Don;pt know why not? Guess they thought I was active enough not to need it. BTW I climbed a small Mountain yesterday afternoon. 3 months after surgery. LOL.
Anyway. Stay strong for those kids. You have something important there to live for and there is no better reason to get well.
Trent, glad things are going well for you and you are in rehab now. It's a great place to be, use it to your advantage, knowing you can push yourself and still be "safe"!!! It's nice of you to stop by and say thank-you to staff....when you're feeling so much better! I wish I could do that, but have to settle for sending a card! Take care.
Great news things are going so well!
I had to go to the local hospital today to pick up some reports to take to CC next week. They just opened a new cardiac rehab unit, so I peeked in the room to see how everyone was doing.
They all seemed to be having a great time, just like members have reported here....they were enjoying themselves. I am sure you will enjoy your rehab as well, once you get past the initial "butt kickin"..haha..Looking forward to my own "butt kickin days"..
Continued success on recovery, Trent
I did have one echo maybe 2-3 wks post-op and see cardio again today. I am actually hoping they do a repeat one as well.
Perhaps it is just paranoia, but while I feel good for the most part steep inclines and stairs are still tough. You occassionally hear about someone's repair/replace that began to leak again and that sticks in the back of my mind.
Good luck at today's appt and hopefully we'll both have positive news to share later today.
Hey Trent, glad to hear you are doing so well! Good for you. My surgeon ordered a one month follow-up echo that I was able to get done locally, and then sent the DVD to him at Mayo. I would call and ask for one to be done sooner than 6 months! Take care and keep walking!!
Go Trent! I am sure your cardiologist will relent and order one sooner if you insist.. He may need to get a pre-authorization from your insurance company to do one since you just had one done before you left the hospital. My cardiologist ordered one for me so he would have a post-surgery base-line echo, but had to get it pre-authorized first. I have not gotten the results yet. Good luck!
So glad to hear your check-up with your cardiologist went well. 6 months does seem like a long time to wait for an echocardiogram. CC did an echocardiogram the day before I was discharged from the hospital. I hope your doctor approves one sooner for you. Take care. Denise K
My first sneeze didn't come out like a sneeze. I think it had to do with the damage the breathing tube did. it was more like a cough than a sneeze.
Mine didn't hurt either (had a thoracotomy too).
Wow...I am so impressed...You seem to being doing so great. Love the pic with you and Thomas, you sure coulda fooled me that you had OHS just a few short days before. My surgery is scheduled 7/17/12, and because of your posts as well as others...I am certainly encouraged & not afraid!!..... Thanks for sharing....it means so much to us newbies.
I hope you will soon be able to return to your career. My son is an Air Traffic Controller at SoCal Tracon..... I know how important career is to you!... Continued Success on recovery..... you seem to be "flying high" :-)
Sneezing yeah fun. I'm a sun sneezer, so anytime the sun gets in my eyes I had to hold onto something. As I had robotic surgery it was more in my side than anything else. Don't know how the full sternum folk do it. Good to see you posting to the HJV site, so the rest of us can laugh at your sneezing pain! LOL!
Glad to hear you are doing well. Yeah, the sneezes are scary if they catch you off guard, but once you control them a bit you dont even need the pillow. Take care, enjoy your 4th and keep us posted.
I'm happy to see you are recovering well. I have Mitral Valve Regurgitation and I am looking at a right thoracotomy using the Da Vinci. Might be a full sternotomy if my Tricuspid valve needs repairing. I hope my allergies don't kick in after the surgery and I get sneezing fits!!! LOL.
Sounds like things are going well for you. That's great news. Isn't it amazing to hear your heartbeat sounding "normal?" Mine always went thump-WHOOOSH thump-WHOOSH. Now it goes buh-bump, buh-bump just like it's supposed to. Carry on!
I'm really happy for you. Surgery done and home! Sounds like everything went well and even better than expected.
I have to agree that the waiting stinks. We have a vacation planned in mid July and after that my surgery. It is hard having it hanging over my head even though I want that time with my family.
I will pray for your continued healing. I'm glad you were so pleased with Dr. Ryan. He is an excellent surgeon-we feel like we couldn't go wrong with him or Dr. Oswalt.
Take good care and keep us updated when you feel like it.
Glad to hear you are home and doing well. I am 4 weeks post surgery and feeling surprisingly good. Down to alternating ES tylenol and ibuprofen during the day and taking a vicadin at night to help me sleep. Hope to stop the vicadin this week. Take care and listen to your body - don't over do! Denise K.
Thank you for your updates Trent. I may be facing the same surgery. Will know more in the fall. Sounds like you did not have your chest opened up. The local cardiac surgeon where I live is working on repairing MR with a small incision. Hoping it will be perfected before my turn comes. Your posts encourage me and help take away some of the fears I have had. Praying for your recovery.
Glad to hear the great update! Good for you. NO more chest tube!!! What a relief. Keep stretching your walks and using your spirometer. Sorry about the pain medicine, can you just tell them you want it every 4 hours regardless? Keeping you in my prayers as your recovery progresses.
Hi Trent, Glad you are getting things done there, but you better watch some of those nurses they might just get you some possum stew. lol. Keep up the good work and you will be out soon and doing great things.
For the long haul
TV, Your post makes it sound like a wonderful place to vacation. But, being up at 3 am due to lack of cocktail distribution (pain management) and having enough time and motivation to create a lengthy post seems like issue enough to cause a discussion with your “HEAD VACATION COORDINATOR”! But based on past reviews, it does seem like consistent cocktail distribution is a problem during the night shift at most vacation hot spots but that may be due to fewer Cabana Boys/Girls (or other appropriate personnel) during the night shift. As for the HOT FLASHES, I hope you now have some sympathy for the older woman in your life! However, I think that may motivate me to ask the Cabana Boy/Girl to bring me some ice water too (just cuz that may be quicker than waiting for the air to kick in). As you start to rehab it will probably be more like a less grueling version of the biggest loser but I look forward to the posts on your progress and the quality of the “Spa” experience at this resort. But I hope you get to the point that all these issues resolve themselves quickly and you get to enjoy your life of leisure. But with all that said and as good as you make it sound. I think the next time you want some time away from your wonderful co-workers you should seek a new vacation coordinator and not go anywhere that has the name Medical or Hospital in it! J/K Sorry for the rough nite and I hope the pain go away SOON! ;D - D Woz
I can't say I can relate regarding the pain med dosing. I can say that overall I 'enjoyed' my stay at Hartford Hospital, CT. The staff was fabulous. The food....???
Good news on the walking. Keep it up. Not sure if you saw my post but I started cardiac rehab yesterday and will go again tomorrow and then 3x a week. Having been down at least a month prior to surgery with pneumonia and congestive heart failure I have a lot of strength to build back up. I think your pain level will decrease with the removal of the chest tubes. Finally I can relate all to well on the last subject....was prob one of the worst parts of all this and it's supposed to be human nature...Good luck and keep posting. Karen
Trent, glad to hear you have made it through! I'm still just down the street (for the next couple weeks anyway) so if anything comes up please give me a call (972-757-4838). I'm more than willing to shoot over to run and errand or help out any way I can.
Trent, glad to see you back online. I got an out of office from you earlier. Quick question: need to understand performance constraints with Cloud servers and physical servers residing on the same network... Oh, sorry. I should probably wait another couple of days.
Been thinking of you bud! Glad to hear your surgery was a success. Sincerely - Kindle
Hey buddy, glad everything is going well. Are you up for a visit this afternoon or tomorrow? I have some goodies for you!!! Have your wife give me a call if it is OK, i don't want to barge in on you. Thanks, Otis 940-243-0924
Hello Trent! I'm happy for you that your mitral valve surgery was successful and it sounds as though you're starting a speedy recovery. Keep us posted about your journey. I had my mitral valve repair 10 years ago--hard to believe now! Keep feeling better!
I'm so happy to hear that your surgery went well. Isn't God good? Continue to improve and before you know it you will be back to where you should be. I also had a repair eleven(11) years ago and I'm doing well at 69 years of age.
I'm so thankful to hear you are out of surgery and tube free! It sounds like everything went very well. Please know I have been praying for peace, comfort and healing for you, as well as strength and comfort for your family. Each surgery amazes me and gives me more confidence for what I will later endure.
Keep us posted on your recovery and if we can do anything (even through this forum) let us know.
My boy Trent!! I sincerely thank the man above providing all the strength and comfort for you, your family and the medical team reaching success today. I wish you a smooth & stress free recovery and will be here if there is anything I can help with! RJones
Sounds as if they were able to repair rather than replace? If so great news. Also very happy to hear the tube is out. I bet you can't wait for him to come to.
Please keep us posted and let him know I am thinking of him. I did my 3 wk post op today for mitral repair and will now start cardiac rehab Weds. I am young, 45, but prior to surgery had both pneumonia and congestive heart failure so need a kick start, doc says in another 4 wks I should be back to good. Karen Campo
Hi Amanda - so happy to hear all is going well so far with Trent's surgery - I just had my MV repaired on May 29th - will be 3 weeks tomorrow and my recovery is going well. I feel good enough to go on our family vacation - we leave on Thursday. Trent is in my thoughts and prayers. Goc bless. Denise Kirchner MV Repair 5/29/12
Fortunately we are in a world of modern medicine....may your recover be brief and your heart glad. Post op you will inevitably never take family and love for granted and that maybe the best gift you ever receive...we should all be as fortunate. Godspeed my friend.
Trent, I know you will come through your surgery with "flying colors"! You are young and strong and certainly going into this with the best attitude. With all the "prayer warriors" you have behind you, how could you not have a great recovery. You will soon be coming home with a well and "happy" heart! May God bless you and yours. Shelia Poole
Good luck and our prayers will be with you and your family Trent. Thanks for the kind words in your journal; it was great to finally meet you and hear about someone in a nearly identical situation. Can't wait to hear those first positive updates post-surgery. You've done your homework and Dr. Ryan will do a great job. Hope you can get some sleep tonight and Happy Father's Day!
You will be fine!!! You are at one the best hospitals!! Don't really know the doc, but you did your research and you seem confident about him!! Will keep you in my prayers and will pray for a smooth recovery!!
Good Luck tomorrow..... I'll be thinking of you as I too will be having my surgery tomorrow.
Enjoy your Father's Day with your loved ones. I'm spending the day at home working on the last few things i need to do... My God guide the hands of your surgeon and bless you with a speedy recovery.
All the best, Donna
I underwent mitral valve replacement surgery16 months ago and am doing just fine. Not sure if you are opting for the robotic method of surgery or not, but I did and recovery was almost completely "painless", or at least not as bad as I thought it might be. Good luck tomorrow. You will be back in the swing of things in no time!
Shari Shoufler, Mason, OH
Trent, Dr. Ryan did my mitral valve repair on Nov. 30th, 2010. I totally agree with Tammy - he is a rock star and the best mitral valve repair surgeon in the area. You are in good hands. I totally trusted his skills. God bless you & Happy Father's Day. Maria Williams, Ft. Worth, TX
Trent, Just5 stopping by to wish you the best of luck on your big day. I hope you have a speedy recovery. I will be keeping you in my thoughts and prayers. Keep us all posted.
For the long haul
Dr Ryan just repaired my MV 5 weeks ago.
I had a severe leak...everything went great.
I'm feeling almost 100%...Ryan is the go to guy...
Best Wishes.. I sure all will go well.
Good luck. Had mitral valve repair three years ago. Had a heart problem for 35 years but complicated with an arrhythmia had to have surgery. Craig Smith from Colombia did it. In two months i wah hiking again and feel great. By the way, I am 70. Keep a positive attitude. Beeeee well. Bill
Best of luck to you, Trent! You will do fine. You sound prepared. You're in good hands with Dr Ryan. He fixed me up - I hit my 3 month post-op yesterday! Trust in the nurses and great staff at the Heart Hospital, do everything they ask of you, and thank them every chance you get. Keep a positive attitude and you will be home in no time. Looking forward to seeing your first post-op journal entry.
Here's to having a great relaxing weekend with family, and praying for you as you prepare to climb your mountain next week! Happy Father's Day! Plan on many more in the future!! You can do this.
I so know what you mean about wondering how to get out of the surgery.
I think you are more prepared than you realize. You've got the recovery necessities covered: new TV, chair.... Those things are important :)
I will be thinking of you on the 18th and saying a prayer. You're going to be just fine!
The sooner you do it and get it behind you, the sooner you will heal, grow strong and enjoy your family. From what I hear attitude is huge. Stay strong!
You seem to be managing your expectations very well - - which is very good.
I discovered that this approach was useful for me. In fact, about 10 days prior to surgery, I got comfortable with my circumstance and began to view it as an "adventure" that would unfold and my role was to just "be with it". I continue to view things that way and 5 weeks later, I now have a repaired Mitral Valve, a chest scare and a great story to tell. In addition, I discovered how much my family cares for me.
I look forward to reading about how your "adventure" unfolds.
healthy snacks...? a big screen?
Honestly I haven't watched much tv(maybe late at night when I can't sleep) or read too much. How was your anniversary weekend in NYC? Smoked beef tenderloin sounds good. Do you need an actual smoker? Being in TX this is prob all the norm but here in CT not all that familiar with it. Our Shop Rite has beef tenderloin on sale this week but I usually buy pork. I am glad your day is almost here and will watch for your pre-op and post-op updates. I am tired and struggling with low BP and am told I will be starting cardiac rehab. Enjoy the weekend with your family. Karen
Ok Trent, pretty radical way to get a new TV, lol!!!! Did you get a new chair also??? Seriously, my thoughts and prayers will be with you as you have your surgery and begin the road to recovery. You will be fine, you seem to have your "mind on straight" (as much as possible). Please keep us updated.
Linda Dixon, AVR 3/13/12
Once you need it, better to do it when you are strong. And then there's the 1/2% or so risk per month of just letting time pass without fixing it. That's not so good either. I'm glad I did my MV repair at the earliest opportunity. I feel more solid and stronger than in years. If you can find a path toward excitement about the surgery, that's a good path to follow - it will get you to a good spot. Stay strong, live long -- DVB
I tried to respond to your journal but I think it posted on my journal. I'm still new to this and a little inept in my computer skills.
So your surgery is scheduled for the 18th?
I know what you mean about thinking, hmm..could I put this off a little longer? I think you are wise to do it now. I am thinking of you and trying to keep all of these dear heart patients in my prayers. Happy Anniversary!
Thinking of you as you go through this process. It's a time full of doubts, anxiety, anticipation...... Get everything done that you want to now while you feel like it, then you will be able to "relax" after surgery!!! You will do fine.
Good morning Trent-
I found the final week to go very fast. It sounds as if you are moving in the right direction getting plans in place for the kids, etc so you won't be overwhelmed at the last minute. Congrats on the 5 year anniversary. I hope you enjoy NYC. We keep saying we would like to go. We are so close in proximity, but I think It's been 20+ years since I went in for a Yankee game. Hopefully you will be able to really enjoy the getaway and make some good memories. Karen Campo
Had MV Repair in September both leaflets were repaired. I ended up getting a BP machine post surgery from the local drugstore ~$35-$40 because the beta blocker medicine lowered my blood pressure so much that it created severe dizzy spells. The dr. used the BP readings to adjust the beta blocker doses.
Best wishes to you and your beautiful family! Please don't hesitate to reach out if you have additional questions!
Would be happy to meet up. I am already driving, so meeting for lunch wouldn't be a problem. In fact it is looking like I'll have to work half-time next week as some things have come up that I can't postpone, so maybe this Friday would be best. Feel free to send me your contact info to firstname.lastname@example.org.
Hi Trent. Just reading your last few updates. With your 2nd opinion comes clarity. Now you can focus without any residual doubt on what you need to do. That right there is huge and will help give you peace and purpose. All the best to you, my man -- DVB
Trent, I did need to take and document my BP for a while after getting home. I purchased a "wrist type" from Walmart. If I remember correctly it was around $35-$40. It also shows your heart rate which is good. Do you have a travel pillow? That was a life saver for me, really takes the pressure off of your head and shoulders and shoulder discomfort appears to be a very common "side effect" of OHS. Will let you know if I think of anything else.
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: email@example.com.
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! :-)