Ivana's Journal

Marie Myers  Hope you are doing okay. Intense shoulder pain and tightness in chest do not sound good. Hope you checked it out with your cardiologist!

Susan Lynn  I am also a Barlow's patient and I had a minimally invasive repair. I took a different blood thinner, but didn't feel any pain after I stopped it at three months. It's definitely worth a call to your doc. Please keep us posted, Ivana.

Susan Lynn  Glad to hear you're healing well! Your surgeon is very highly regarded for robotic mitral valve repair. It's nice to read your personal testimonial! Continued success with your recovery!

Jan Domingos  You made the right choice for your surgeon! Dr. Guy repaired my mitral valve 11 months ago and my heart has never been so quiet! I had a Barlow's valve too with severe regurgitation. Did you know that Dr. Guy did 3 tours of duty in Iraq/Afghanistan as a battlefield surgeon? I felt this experience gave him the ability to think and react quickly should there be an issue. For me, the surgery went smoothly and the repair was successful. I agree.... he is amazing.
Best wishes for a quick recovery!

Kim Lonergan  Happy to hear you are home! I am curious about the water weight. I will be having surgery the 28th and I wasn't sure what to expect. You are in my thoughts and prayers!

Ivana Okereke  Kim, I feel really well but I am retaining a lot of water. I was told at the hospital that it is normal and I just have to watch that I am not gaining more now that I am off iv fluids. I wasn't expecting this though, I am 22lbs heavier than the day I went into surgery! Swollen all over.

Steve Farthing  Sometimes they prescribe a diuretic. You could ask your doc about it. Maybe he does not know how much fluid weight you still have. They gave me furosemide in the hospital to help shed the 16 lbs of fluid weight gain. I only took Aleve and Tylenol once at home. But sometimes you need more than that for awhile.

Debbie Chatzky  I had surgery on May 31st. Gained 18 lbs in fluid. They give a lot of saline fluid during surgery.i took furrsomide in hospital and was sent home with it. It took 2 weeks to come down and still have some to go.

Ivana Okereke  Thank you for the feedback. I am on furosemide too, I didn’t realize it took that long to get rid of the fluid. I will ask about switching to non-narcotic meds.

Rita Savelis  Many doctors prescribe lasik (diuretic) for weeks after OHS which makes you pee a lot and helps get rid of the water. It's a pain. Your heart, which has been through a lot, has to get back to pumping normally and that takes some time, so the water in your blood backs up in your system a bit.
The water weight will go, so just give it some time. I am very skinny and remember looking down at the fat tire (of water weight) around my stomach. Very odd. It takes a few days, sometimes a few weeks to go. When I left hospital I weighed less than I did when I went in, mainly because I lost my appetite.

The pain meds you take will depend on your personal pain, which varies immensely from patient to patient. I only took tylenol, but I did not have pain from my sternum cut. You may be in more pain because of robotic surgery. Take what you need to take. It's your call.

Marie Myers  I used the narcotic pain Meds in the early days, mostly at night to sleep better. Listen to your body, and give it what it needs.

Michael Cline  I had my AVR surgery on Wed the 13th and am still in the hospital. Yesterday about 9PM I went to Tylenol affer they took out my drainage tubes. The narcotics made me very tired and nauseous. I gained 11 lbs of fluid weight.

Janet Skinner  I gained 17 pounds (fluid) post surgery; treated with IV lasix. I was on the diuretic for several months prior to my surgery because of heart failure (a result of mitral stenosis and very enlarged left atrium.)
I dropped the fluid weight slowly, but my post surgery journey was very complicated; I had three admits to hospital and a trip to the ER. Thirty days as an inpatient.
I'm still taking furosemide and the amount depends on fluid retention - as part of heart failure management, I have been told to weigh myself and take a BP reading every morning, and I am realizing that my slow weight gain before surgery was partially fluid. I'm now down 29 pounds from the post surgery weight!
As far as pain meds post surgery, I was on heavy narcotic (oxycodone) but once I was moved to the recovery ward four days later, I took 2 extra strength tylenol every 6 hours. I also used heat and ice packs for pain management, especially after the pacemaker insertion. THAT one was so much more painful then the 8 inch sternum incision!
Do what you need to. It's better to stay on top of the pain with regular meds and then slowly wean back.
It all becomes a distant memory when we realize how incredible our bodies heal!

Kim Lonergan  Ivana, Thanks for explaining the water weight gain. One of the things I didn't realize would happen until reading about it on this site. I hope you continue to feel stronger each day!

Bonnie Stone-Hope  Everyone's experience is different. My toes were "puffy" like little sausages, but that was because I had not been walking. Actually lost weight, and carefully monitored my weight daily for the first month to ensure no rapid weight gain ( which would indicate fluid retention)

Since I had no real pain after surgery, I stopped the narcotics right before discharge, using plain Tylenol, which was fine.

Don L  Great update, and so glad to hear your updates on the recovery side. Each day will get better. The drainage tube caused the most discomfort for me, which they should take out soon. The walking will take some getting used to, but improves quickly also. Getting your lung capacity back with the Spirometer will also make you feel better.

Catie B  I cannot believe you are posting on Day 0. You're incredible! Rest and heal.... Welcome to the other side!

Susan Lynn  So sorry you're feeling nauseous, but happy you had successful surgery! It's behind you, now, and there are all good things ahead! Welcome to recovery!

Carmel Robertson  Like you, I have Barlow’s Disease. I had a mitral valve repair done robotically with excellent results. Four months out, I feel really well and have minimal scars and no pain. It has taken me all of the four months to get well as I did have some issues after the surgery. I spent many months finding the right surgeon. Mine had an specific interest in mitral valves and had been using the robotic technique for fifteen years. Good luck with your heart journey.

Nancy Surprenant Takahashi  I had my mitral repaired with robot, my understanding it is more painful in the beginning, they also can see better and you have less complications, i.e. chances for infections. When I got home I was only on pain killers a few days and went to Tylenol. Most of my pain was in the hospital and by the time I got home it wasn't really that bad. I'm 7 weeks out and my wounds are all healed and slight pain when I sleep on my side too long. When I get up the pain is gone and don't need to take anything at all. The valve is all repaired and no more leak. I'm told it should be expected to be a life time fix. I've been in and out of afib for weeks now but that didn't have anything to do with the robot.

I don't know why they call it less invasive, both seem pretty invasive to me, it is OHS.

Phyllis Petersen  I had my mitral valve repaired with robotically-assisted surgery in October 2016. I only had a floppy posterior leaflet plus ruptured and stretched chordae. The pain was intense at first, but tapered off fairly quickly. I did need pain meds a couple of times a day for awhile, but was able to transition to Tylenol 8-hour fairly quickly. I was back driving at 4 weeks post-surgery, although I tired if I drove too long. I purchased a fuzzy thing for my seatbelt because of some residual tenderness. I started cardiac rehab at 6 weeks (mainly waiting for insurance okay) and progressed quickly. My scars have almost completely disappeared at this point.

Mark Caswell  Compared to a sternotomy it was A LOT less painful. Night one in ICU is the toughest but it does get better quickly after. I was out of the hospital in 3 days. Would have been 2 if not for the a fib. (very common).

In my experience the groin pain hurts more than the chest, if you could believe that. The chest will look a lot worse than it feels ( Lot of black and blue). I am 11 days post op and feel great. Been home for a week and walking almost 7000 steps a day.

I am very happy with my choice for robotic surgery!!!

Best of luck.

Kristen Kelly  Hi Ivana. I know it’s a big undertaking and I’m sure you have a lot going through your mind. One day at a time. Prayers and love your way!

Helen Daw  Good luck Ivana. I am sure you will love Dr Adams. He is so calm and reassuring that I didn't even go for a second opinion. I looked at his calmness and confidence and I was sold. Good luck with your decision. Don't let the surgery scare you ( I know it is not easy to do) it really wasn't that bad at all.

Ivana Okereke  That's great to know! I am still deciding between robotic and sternotomy. I have to meet them in person and then decide I guess.

Susan Lynn  Ivana - make sure you don't overlook minimally invasive mini-thoractomy. I was adamant about full robotic surgery until I spoke to a surgeon who performs the procedure. It greatly extends time on by-pass and overall surgical time. I also wasn't thrilled about having my sternum cut, but was willing to do so for the right surgeon. Luckily, I found the perfect physician - Dr. Scott Goldman, Lankenau Medical Center, just outside of Philadelphia. If you're willing to go to NYC, maybe you'd consider Philadelphia. Ask for Samantha, if you call - she will take you through every step before, during, and after your surgery.

Ivana Okereke  Hi Rita, I am sure that there are but it is not a large volume hospital and I would feel more comfortable at a center where they do hundreds of mitral valve repairs per year.

Don L  Ivana, have you created a standard set of questions you could use to compare apples to apples based on results? (i.e. How many mitral valve surgeries do you peform a year? What is your succesful 'repair percentage' of those surgeries? What types of complications and re-repair rates do you see, and the odds of each given my age/profile?(my surgeon had a print out based on 'Barlows', prognosis, age). Several others on this site have created more detailed questions than myself, but based on the answers(or lack of answers or bed side manner) helped me choose my surgeon. One of the surgeons you mentioned even helped me in my research with the following Q&A regarding Robotic approach: https://roboticheartsurgeon.com/questions/

Helen Daw  Dr David Adams repaired my mitral valve on Feb 13th, 2018. Even though I am still recovering, so far so good for me. Loved me experience at Mount Sinai.

Mark Caswell  Ivana, I have the same issue and having surgery done robotically with Dr. Didier Loulmet at NYU Langone on May 29th. Worth checking him out to see if he works for you.

Ivana Okereke  Hi Mark, he is one of the surgeons I am looking at. I am so glad you wrote bc I wasn't sure I was eligible for robotic-assisted surgery with Barlow's Syndrome. I just sent him my results etc and am waiting to hear back. Good luck with your surgery! Please write any advice or tips you may think useful.

Don L  HI Ivana/Mark, I am 51, Barlows Syndrome, and had a complex succesful repair(both leaflets) done Minimally Invasive Robotically by Dr. Robert Smith in Plano, Texas. I am 5 weeks out, feel great, and small incisions are disappearing pretty fast.(I was released from hospital in 3 days). Depending on other possible heart issues, your overall health, and if you are 'eligible' based on results of CT Scan(or heart Cath), I highly recommend the approach if you go to a high volume, very experienced surgeon who has succesfully used this approach for years. There is a good Q&A from a Robotic surgeon in New York area (T. Sloan Guy) which I found to be very honest and informative based on my personal experience/results. Happy to talk more with you about if interested.

Susan Lynn  I had my mitral valve repaired (Barlow's disease) just outside of Philadelphia by Dr. Scott Goldman. I had a right side, minimally invasive entry with a short hospital stay and easy recovery. The most important thing is an experienced, high volume mitral valve repair surgeon as Don L mentioned.