Jason's Journal

Nancy W  Mmm- I have moderate regurgitation 6 months after mitral valve repair on my first post surgery echo. My cardiologist says this is not atypical and my surgery was a success. Surprised me and have tried to not let it bother me ( although this news did not make me feel good).
Good luck with your visit- hope all goes well

Joseph Heinzmann  This seems a very sensitive subject coupled with elusive answers. I've heard a bunch of things:
- Some regurgitation is normal;
- If the regurgitation does not cause symptoms, then it's not a big concern;
- Your heart is remodeling and as that process progresses, the presence or absence of regurgitation may vary;
- If you feel good, then don't worry about the imaging;
- Even if you need a re-operation, if you are not symptomatic, your chances of success would be very high.

So, Jason, I guess the best thing to do is to trust that if you're feeling OK, then, even if the echo shows regurgitation, it's no big deal.

I think when we go into surgery for a repair, we expect that the issue will be fully resolved. I guess the heart does what it does and there's only so much that even the best surgeons can control. My experience is that I had severe regurgitation with emerging symptoms prior to surgery. In the OR, the echo report says no regurgitation. Two days later, the echo said "moderate" regurgitation but the report was later revised, based on calculations, to mild. My first echo (five weeks after surgery, showed mild regurgitation.

When I spoke with my cardiologist about it, he took a more global view of the situation. Yes, there is regurgitation, but prior to surgery, my left atrium and left ventricle were enlarged. The post-surgery echo showed those returned to normal ranges. So his view was that whatever regurgitation that was present was not enough to prevent good remodeling of the chambers and because of that, he thought things were good, or, to put it another way, if the regurgitation was significant, my left atrium would not have returned to normal range so quickly. He also said that as things progress, we might see changes based on how the heart continues to heal and remodel and that the only way to know the answer was to let the time pass.

I guess we all need to channel St. Pio (or whatever helps you in situations like this). Pray, hope, and don't worry. I can only add to this: DO THE WORK. Take control of your rehabilitation and do what needs to be done to maximize your chances of a full recovery. There are days when I have felt like I really didn't want to get on the treadmill - again. Push through that and do even just a little to give yourself the best chance at the best outcome.

Richard Munson  Glad i read this joseph as i was just contemplating blowing off the treadmill this morning after reaching 1/2 hour at 2.6 yesterday. Lacing up my sneakers as we speak. Feeling better can have its drawbacks.

Jason Lathrop  Joseph, thank you for that thoughtful and kind reply. Wonderful perspective and so well articulated. You've talked me down. :)

The day I posted my question I was having just... anxiety about it all. I go literally weeks now without even thinking about heart surgery or my valve. It was years ago and the scar is negligible.

I particularly love your counsel to let me symptoms guide me -- I feel fantastic, run regularly, and can hike forever. So yeah, I'll calm down and wait until I hear there's a problem.

Tom Fitzmorris  Jason: surprise! no one told me either; nurses said coughing and breathing exercises could be hard, but omg, one sneeze immobilizes me with pain for a couple of minutes, and feels as if it sets me back a day or two. I try now to press my fists against my sternum if I am about to sneeze to prevent it from bowing outward; this does help --for me. Tom.

Eleanor R  I remember it well. It is like getting a shot in your lungs, or a rocket going off inside your chest wall. Very scary the first time, but you quickly learn to grab a pillow to hold to your chest when you feel a sneeze coming on. Otherwise, it feels like it will fly apart, right.

  I'm glad you feel better than you expected, Jason. I pray you continue to heal and recover. I'm sure your strength will return, gradually.

Tammy Pilcher  Jason, it sounds like you're recovering well even though I know it can seem slow. It seemed to take a while at first and then I realized one day I felt almost normal again. I only lost five lbs., but have already put it back on, sadly! I don't know about lifting weights and cardio. I mainly just walk for exercise. I hope you continue to improve and wish you all the best!

Ben Hyman  Hey Jason...you and I are in the same boat. I also have a leaky. Mitral Valve, have no real symptoms and told I'll need surgery soon as well. I do Kettlebells 3-4 times per week (RKC) and have no issues doing that now. Surgery consult is in 2 weeks and then I'll decide when to pull the trigger. Hope you heal quickly so you can get back to doing what you love. I'm interested in hearing about the restrictions your surgeon recommended and when you can go back to KB. Did you have a full sternotomy or did you go minimally invasive?

Get well soon!

Ben from Minneapolis

Jason Lathrop  Ben, I went for the full zipper. Getting my sternum opened up sounded like no big deal compared to cutting on my actual heart. :) I will keep you posted. Very weird to feel fantastic and hear you need heart surgery, but I'm grateful they caught it before I declined. Good luck. You will do well.

Pat Bluemel  Do you have Cardiac Rehab benefits? If you do, I would suggest getting registered and getting to those classes, they train you on everything you can and shouldn't do. I feel so amazing on rehab days. I lost about 15 lbs during the surgery weeks but gained it back as soon as my appetite came back. I too felt weak for about 4 weeks. It all comes back with time. As for physically doing any of those activities you mention, my sternum is still way too sore for me to even try at 2.5 months out.

Jason Lathrop  Pat -- I do have cardiac rehab and am signed up for a few weeks from now. Looking forward to it. Man, you still have sternum soreness at 2.5 months out? Not looking forward to that. I kind of figured my lift restrictions of 10-15 pounds out to three months post op were to be on the safe side. I really need be careful and not get tempted to pick up my three year old!

Pat Bluemel  Yah Jason, some days are better than others for sure. I can't sleep or lay on my right side yet, and if I over do it in the yard or with chores, I'm sore for a couple of days. I've heard from folks that have pain for months. It's not intense pain, just a reminder that my sternum was cracked in half a couple months ago. Compared to the trials others go through I'm cool with a little discomfort. Congrats on 3 weeks! Next week and week 5 you will notice a big difference. I remember thinking on week 5 - this is awesome I feel great! Then crap - I have to go back to work again now that I feel so great.

Pat Bluemel  Also, I see that you ask about hard cardio, take it easy until you can be hooked up and advised. You don't want to blow out any of the work they've done and risk reoperation. If you are feeling really antsy, move your rehab induction up. I think Bill Cherry started at 3 weeks out and I started at 4, which was just about right for me.

Janea Christensen  I had an 18 month old butter ball toddler during my first surgery. At 6 weeks post op I felt like I was fine to pick him up. My heart surgeon said "sure, go ahead and do it. As long as you don't mind your sternum is fused crooked." That freaked me out and I got very creative afterthat trying to get him up and down from cribs and shopping carts etc... without picking him up.

The energy takes time to return. Give yourself 8 weeks on that. Good luck!

Pat Bluemel  Hospital sleep is the worst sleep. Get yourself some rest. Each day you get less tired. Even if you can't sleep just let yourself be at rest and know your body is healing itself. Congrats on being home!

Jason Lathrop  You ain't kidding about hospital sleep, Pat. Even without the beeping and constant visits and pokes and pain, those beds and sheets are terrible! Like sandpaper by day 2. That second day post-op I would fall asleep and then wake thinking 45 minutes had passed only to see it had been 5 minutes on the clock. Over and over.

Dan D.  I'm still awaiting surgery, but I know that you will get better fast. Glad you are home and hope your recovery goes fast.

Nancy D  Rest, breathe deeply, walk, eat repeat. Lots of rest, lots of breathing, several walks in the house! You are home, congrats!! Take good care!

Greg Johnson  Home is great. I was in dire need of four hours of uninterrupted sleep. Don't forget to walk and breath. Use the spirometer. I

LaDonna Mangile  Glad your home. I'am also and it so nice. Resting and increasing my activity a little bit everyday. Slept a lot the first few days.

Rodrigo Ponce  Now that you're home you'll have a better and faster recovery. I know I am, and it's so great to be able to go out to the street and have my BP checked because I'm walking more.

Lewis Garlisi  That IS all to be expected. The tubes will be out very soon and that is definitely something to look forward to. You will slowly gain more energy every day. Every day something will happen to make you feel a bit better, a bit more normal and independant. It is a sacrifice we all make that is well worth it, and you do get better. Try to stay nourished. Get them to help you with your first steps down the hall. You'll be home before you know it. That's when you can finally work on getting some decent sleep. Then this all becomes just a not-so-good memory. Good luck!

Pat Bluemel  The tubes come out quickly and hour by hour. Each day (heck each 12 hour increment) things change and get better. Work with the nurses to get the pain managed and advocate for him. On the bright side, remind him he doesn't have to get up to use the bathroom right now:-).

Nancy D  Soon tubes will be coming out, until then, ask for pain meds, no heroic medals awarded for trying to tough it out! Short frequent naps work, and between then enjoy some ice, a popcicle or some pudding! Ear buds in and some soothing, or meditative music to drown out the monitors and the constant noises in the hospital. Each day gets better......Deep breaths, often!

Gerald Schaffer  It sounds like everything is normal. Try to get as much rest as you can with all the noise and lights. Hopefully you'll be up out of bed soon and walking. Ask for pain meds if you need them, not only will they make you more comfortable but they may make it easier to get some sleep.

Laura Metrano  Jason, I'm envious that you're 2 weeks further along in your recovery than I am! The scary waiting period is over for you and soon you can focus on the healing. Well done. You're on your way!

Tim Goff  Jason, your recovery will be surprisingly quick and you should feel better each day. There will be setbacks, but they should not detour your positive thoughts of being on the other side of this.

Greg Johnson  Ashley you are the key. I would have been miserable without my wife Tina there to get me applesauce, listen to me complain about pain tubes blood draws and bed pains. Rub my neck and shoulders. Surgery is over and now it's the business of recovery. It will be fine fast and over before you know it.

Tammy Pilcher  Jason, I'll keep you in prayer for tomorrow. You will be so happy when this is behind you! The feelings you're having are normal. I had them too, but I can honestly tell you that it wasn't as bad as I had imagined. Isaiah 41:13 helped me. "For I the Lord thy God will hold thy right hand, saying unto thee, Fear not, I will help thee.".

Nancy D  I had a similar rocket ride of short duration from diagnosis of a problem to surgical correction. I am rather happy it happened quickly and I wasn't in the waiting period for months- after months passed I was fixed, doing rehab and ready to begin life anew! You will do great, and I await your updates once you are well enough to post. Your first job is to breathe deeply, cough and move- you will be in the chair your first post op day and on the move to wellness!!

Jim Hernandez  Hang in there, I know exactly how you were last week. It is such a ride, but better once the process starts and everything is off your mind and control it us so much better. It is a big surgery and you chose your team well, and soon you will be with us on the recovery side . We are all behind you with support , you got this!

Wiliam Height  Stay present and be at ease. The fear and sadness is your mind getting the better of you. You're here and your mind is there. Enjoy your family and friends. Wishing you well tomorrow, you will do fine.

Henry Goodwin  Jason -- I will checking in early of Wednesday. I pray that we will both have successful surgery, and that by next Sunday we will both be close to going home.

  Jason , sending positive vibes your way, looks like you have a nice group of people here thinking of you. See you on the other side. :)

  Happy Easter,Jason! Praying that your surgery goes smoothly with no complications and that you have a steady recovery.

Bob M  I pray that your surgery will be textbook and your surgery will be uneventful. Tomorrow will be a new day for you with a fixed heart. God bless and rise up!

Pat Bluemel  You'll be calm tomorrow morning, you can do this. There may be tears, there will be I love yous and then you'll take a good long nap and wake up. Looking forward to seeing your progress.

Wiliam Height  I don't know if all centers have same discharge instructions and it may depend on what meds you come out on. For me a glass of wine with dinner would have been ok in a few weeks but told not to drink caffeinated coffee so I don't. Decaf and herbal teas are my substitute.

Greg Johnson  I had coffee in the hospital with breakfast. Probably day three or four. I didn't have a taste for wine for a week or so. But have been having a glass or two every evening since week three.

Kathleen F.  My discharge nurse told me alcohol would be OK by week 4, and one cup of coffee a day was fine immediately. My surgeon's nurse practitioner told me I could've had wine sooner, however. I think William is likely right, that it may depend on your meds, as well as your blood pressure and heart rate. Alcohol increases blood pressure and caffeine can increase heart rate. I was interested in trying both, probably by the end of the first month. But I try to stick to decaf for the most part now. No need to hinder recovery in any way if I can avoid it!

Greg Johnson  Hey Jason. I coincidentally am having an awesome Oregon pinot as I write this. It is called stag hollow and comes from the Dundee area I think. Anyway noticed you were from Oregon.

Nancy D  Coffee tasted awful after surgery-- I thought it was just the hospital coffee, nope, it was awful at home too. Took a few weeks of trying it daily until I found my taste for it. Wine and I have never gotten along due to migraines. But it was many weeks/months before I had my first iced cold beer. AHHHHH.....wonderful!

Duane Beeman  If I lose my taste for alcohol it will go down as a modern day miracle. It will rate right up there with some of the great scientific accomplishments of all time

Jim Kelly-Evans  My daily sake tasted terrible at first (about two and a half weeks after surgery) but I decided to keep drinking it until I enjoyed it again. Taste buds came back to normal finally after about a month and now the sake tastes fine. Still no sense of smell...wonder if that will ever come back?

Jason Lathrop  Greg-- ha. Oregon has great wines these days. I grew up in Walla Walla and they are really growing some amazing ones.

Thanks all. This forum has become so important in this event...

Pat Bluemel  I drank tea on day 4 and have been since. I don't drink coffee so I can't help there. Didn't drink any booze till like week 5. it was a slow ramp but I managed to have one or three drinks here on Maui:).

Duane Beeman  Pat. Like the old Judge used to say when someone told him that they had only drank "two beers"........."OK son, you've told me about your first and last.....now tell me how many had in between".

Lewis Garlisi  Good planning. Let them spoil you. Even if that's not you, you'll need it for a while. As for coffee and wine, my desire for both has been subdued a bit - particularly with almost all alcoholic beverages, but I was drinking both at about 3+ weeks post surgery.

Wiliam Height  Yep. You're doing all the right things and you'll come back. For a couple months things will change. Read any good books lately?

Donna Gavin  I am slated for a full sternotomy mitral valve repair in May or June. Where did you have yours done?Where did you rent the power recliner?

Nancy D  hmmmm- that is a good question! I think I wish I knew how long it would take for my normal energy to return!
Healing is a process and at my age- 57- it took longer than I wanted or thought it should! But, I am still very happy surgery is in my rear view mirror!!

Lewis Garlisi  There are so many things you learn as you go. Most are not too significant, and many are resolved by the time you leave the hospital. I was actually surprised that I didn't feel worse when I woke up. You'll be pretty sedated. Once you're home, have patience and treat yourself well.

Lewis Garlisi  Anyway, I realize that doesn't really answer your question. I'd say that I wish people would have stressed how long recovery would take. It is nice to see continuous improvement, but it takes a very long while.

Meredith Bray  That the waiting really is the worst part. Also, sleeping more than a few hours at a time will be a challenge.

Greg Johnson  Practice getting in and out of bed/ chair without using arms. I would have liked to practice this before it hurt like hell to try different methods.

Daniel Spurgeon  That I would be so severely thirsty when I woke up, but wouldn't be allowed to drink. Those ice chips were more refreshing than a steak dinner.

Greg Johnson  When you get awake and your back or shoulders are killing you. Know that it is a muscle issue and have someone rub it out. At first it scared me as I thought it was directly related to the heart surgery. But came to find out it is indirect result of being laid out for so long. A little massage from a close caregiver was miraculous.

Damian Kudelka  Jason the hospital is not ideal for recovery to say the least. read up on ways to be comfy there and get out of the hospital asap! stay on top of pain meds and be careful when the switch from drip to pill form. once on pill you must formally request more meds otherwise they stop and then you feel the pain.

Greg Johnson  Yes. I second what Damian said. We needed to keep track of and demand the pain meds or else the nurses wouldn't provide them. Marked the time on the white board and then started calling when time for next dose.

Janea Christensen  I wish I would have known to have a loved one in the hospital with me the first 48 hours. Nightime by myself was so hard. Also the depression during recovery surprised me. It felt like I would never get better. Now I know its part of the ride.

Barry Van Gemert  Nothing in this world is 100%. If they say 95%, you will wake up with a repaired valve. Take it to the bank.

Wiliam Height  I agree with Barry. I don't know your surgeon or stage of MVR but if you are asymptomatic, that valve should be repaired 99%. But not all surgeons are created equal. I had a complex Barlow diseased mitral valve with severe myxomatous of leaflets causing a centrally directed regurgitation jet. My surgical team does its TEE the day of surgery prior to operation to avoid complication, and my question/worry to surgeon was what if you have to call an audible in surgery and he said I didn't need to chose type of valve because they will fix it. Which is why I sought out the surgeon of my choice to operate on me. IMO, there should be no doubt going I to surgery, bear in mind the cost of replacement is more than repair.

Jim O'Brien  Jason, I agree with Barry as well. I had a Mitral Valve Repair done November 24, 2014. My surgeon told me I had a 95% chance of repair as well. It was repaired and heart wise, everything is normal again doing good. I still have other non heart related issues, but that's another matter... I didn't want a mechanical valve and told my surgeon if replacement had to be done, go with a tissue valve.
So, sending you positive waves for a successful REPAIR and a stronger, normal heart.

Nancy D  my Mitral valve was beyond repair and I woke up with my choice of replacement which was a tissue/bovine valve. Just the waking up, knowing it was over and I was on my way to 'Life Part 2" was a great relief! I am much better now, 7 months later, walking 1-3 miles 5-7 days a week, managing the house, helping with the yard, chasing grandbabies every chance I get. I no longer use inhalers or breathing treatments for the 'asthma' they said I had. My stamina isn't up to what I want it to be but I am still working on that...and really if I get no more improvement on that I am still calling this a great success! Life part 2 is Good!

Janea Christensen  I was suprised to learn my valve was replaced when I woke up. I didn't realize what a bummer that was until after the fact. But of course in the end I just felt grateful to have an improved ticker.

Duane Beeman  If I knew Kentucky had a 95 % chance of covering the spread against Wisconsin, I'd be taking out a mortgage on the house right now. I like those odds ALL DAY

Pat Bluemel  I went in hoping for a repair but once in my chest the doctor found my valve was shot. Leaflets calcified and folded over. Not useable. And still completely asymptomatic. When I woke up I felt only acceptance as I had no other choice. I was alive and that was that.

Pat Bluemel  I was off all pain meds day 3 post op so those weren't a factor for me. Pump Head started letting go at week 4 when I started cardiac rehab. I was worthless stringing a sentence together until then. I'm on week 6 and have little interest in my Xbox or WiiU yet.

John Fichera  I was able to do all those things within a day or so. Didn't need much pain meds as I had minimally invasive surgery. No cutting into my chest. I was home by the end of day 2 using norco for about 5 days. Was back at work (desk job) in about 2 1/2 weeks. It's been a month now and I feel great. Going to start running next week while I'm in Florida. Too cold here in Chicago for that. My biggest problem was getting my lungs back to normal. It took about 3 weeks befor I felt I could take a deep breath. It's a lot better now but if I take a deep breath while out in the cold, I feel very uncomfortable. But it's getting better each day. Saw my surgeon yesterday for a Followup and he said the x-ray looked perfect. Couldn't ever tell I had surgery.

Meredith Bray  I was only on the machine for 40 minutes. I was off narcotics 2 days after surgery. I had my tablet in my lap and was using it while still in the hospital. I sat at my desktop less than a week after surgery. BUT everyone is different!

Nancy D  I played some easy no brainer games on my ipad in the hospital, and I listened to music as well. Reading wasn't too easy at first, I couldn't concentrate, but I did watch a lot of HGTV, design shows etc nothing that took a lot of brain power. I did manage to send my family who lives far off an update email every other day or so.

Daniel Spurgeon  I didn't concentrate well for three days in the hospital, but did fine beginning on day five. By day 7 I was back at work practicing law. I had other lawyers in the firm check my pleadings before they were filed in court for the first few weeks, but all my work was solid.

Meredith Bray  Wide open, full sternotomy. I think I got cheated on my incision length though - it's barely visible above a scoop-neck shirt.

Jennifer Anderson  Jason, it took me a few weeks to be able to concentrate enough to read, I don't know what caused it but I couldn't even focus enough to flip through magazines.

LaDonna Mangile  It is very stressful waiting....I'm dreading it and wishing it was over at the same time. Soon we will both be post-surgery and beginning a new chapter. There are several young people on this site

Wiliam Height  We have a 8 year old and an 8 month old, and it was very hard on my wife to manage our household in recovery and while we prepared for it she was beat up too. So, I would say outside help.

Mark Alafita  I had my aortic valve replaced last month, so this is still fresh for me! Here would be my list:
1. Power recliner: It will be painful to lay flat in a regular bed, and the manual recliners are too hard to pull right after surgery.
2. Child care and house cleaning support: You will not have the stamina nor lifting ability to do either for quite some time. My kids are both teens, but the housecleaning assistance was key, since my wife also works.
3. Exercise equipment: Hopefully you will go through rehab post-op, but it is nice to have equipment at home (treadmill, new bicicle, gym membership) when the time comes.

Hope this helps. And I wish you all the best in your surgery.

Meredith Bray  Electric recliner - makes resting so much easier. You won't have to rely on someone to help you in and out of bed the first 2 weeks. HOUSEKEEPING! We seriously talked about having someone come in for a few months to help me get caught up as a result of all the fatigue pre-surgery. My husband just couldn't do it, bless his heart. And we don't even have children!

Greg Johnson  One of those super massage chairs. Not the mall kind but the $3k Japanese models. I was in serious back pain and even now need my girlfriend/wife to rub some knots out. Nothing else would alleviate the muscle cramps.

Meredith Bray  It is scary, scary as hell, to us that are younger, and to anyone facing a major surgery! I Googled my surgeon the day I met him, even after meeting him and also developing an immediate trust in him. I found that the more research I did on the surgeon, the hospital, the surgery, etc, the calmer I felt. i read so many journals they all started to run together. Everyone's experience is different, and I suggest reading other journals and taking them in to consideration. This is a great site for questions, so ask away!
-Meredith

Nancy D  Knowledge is power, or at least calming as you become more familiar with the team you are selecting for your surgery. Go to the Medical board for the state you are living or considering surgery. You can look up your prospective surgeons and see how long they have been in practice and if any disciplinary action/malpractice have been taken on them. It won't give you the numbers of your type of surgery, but any article that comes up with a google search should carry some of those statistics. And, you can ask them those questions as well.

Tammy Pilcher  I agree with Nancy and Meredith. You can look him and the hospital up on the "healthgrades" site also.

Ole Bore  http://www.sts.org/ will give you stats for the hospital, unfortunately not at the surgeon level... http://ConsumerReports.org also rates hospitals.

Besides that, ask his nurse for the stats. I did, and got everything I wanted to know about my surgeon.

Pat Bluemel  Ole! I assume you researched our hospital prior via these links? I never did so I'm glad you did. I kinda of avoided stats and went with recommendations. Once I chatted with you about UW that was good enough for me. It's interesting to see what we each need to make decisions. Jason, I'm 42. You'll sail through this.

Ole Bore  Pat - I also checked US News and World Report, CareChex and everything I could find on the hospitals... Not a stone was unturned for a data geek like me... :)

LaDonna Mangile  Jason...I agree it is scary and you just have to keep learning about your procedure, what to expect, how to prepare and have faith. I think one thing still scary to me is not being able to do anything for my self for a while. My surgery is forthcoming so all I can really say is your feelings and fears are normal. Trust God and he will help you! Prayers!

Jason Lathrop  Thanks to all of you for the kind words and advice. I asked my surgeon's nurse and he evidently does like 75-100 mitral valves a year -- so pretty high volume guy. And well above the 50 that research shows is where outcomes quality stabilizes.