Weight did not decrease today (still around 156/157). Had a decent breakfast. Got the stubhub tickets printed and then caught a cab to the Tigers-Indians game at 12:05 today. We made it for opening pitch and had a great time. It’s a challenge finding something low in sodium to eat at the ballpark, but eventually tracked down some pre-packaged turkey wraps!
Had my first bump in the road from post-surgery, but still relatively minor. From Wed to Thursday, I noticed the femoral artery incision site in the left groin was starting to swell. At first I thought this was just the area hardening as it healed. There was no pinkness, pain, and I didn’t have a fever. As the day went on Thursday, the area started to bulge. By the time I left the game at 2:30 PM, it was the size of a warped golf ball and painful when pressed on. I contacted the on-call nurse and Mary (again, wonderful) asked me to come in asap to check it out. Arrived at 3:30 PM and they performed a quick ultrasound (echo). I thought it might be a hematoma (my ignorance), but they confirmed it was a seroma (http://en.wikipedia.org/wiki/Seroma), a build-up of plasma leaking from small arteries after surgery, and a common post-surgery side effect. They also checked my weight, which was back up to 159/160. By 4:00 PM I met with the doctor on call, Dr. Olivares (sp?), and he recommended lancing it. At this point it was the size of a small egg and more sensitive when pressed.
Local anesthesia was injected and the Dr. punctured the incision site in two directions with a scalpel. They estimated about 20-30 CC of pink fluid rapidly exited the puncture site. A sponge bandage was applied and I have an appointment in the morning (9 AM) to have it rechecked. Overall there was little to no pain in the procedure. Monitored the area over the night and the swelling seems to have resumed, but not as fast. I think it may need lancing again, but will know that decision in a few hours.
Nothing major, but interesting to observe there are many potential side effects you don’t think about. Will post more asap. Good luck Karen! Great job Steven! Best wishes all others approaching and recovering!
Weight down to 156 lb; only more 4 to go. Had morning cocktail of prescription meds. Went back to 2 Percocet tablets, as the pain seems to be getting a bit worse. It seems some of the long term pain meds are finally wearing off and as the muscle repairs itself, there is an increase in pain. With meds, it’s still no more than a 1 or 2 out of 10.
Went to guesthouse complimentary breakfast and had ½ piece of toast, yogurt, glass of orange juice and half an orange. Afterwards went for a walk. At the halfway point of the walk, I began noticing some flashes in my left eye, like streaks of colored light overlaying parts of my vision, with a shimmering effect. Had never read of heard of this before, so was a bit concerned. I took a break at sat in a lobby chair; after about 20 minutes it went away. After returning to the hotel, I said goodbye to my little sister Allison. She was amazing just like all the rest of my family, and played the role of gopher for prescription meds, ice water, thermostat, and numerous other little errands that are just tiring.
In the afternoon, had blood work and EKG from 2:00 to 2:45 pm. Met with Kathy, from the research team and went over the instructions on taking the pseudo-Holter monitor test reading, which will be 1 minute per week and for a 3-day period every 6 months (total study duration is 2 yrs). At 3:15 pm met with outpatient discharger nurse and the nurse practitioner. They went over my EKG, but the bloodwork results were not yet ready. Was sent to get one last chest X-Ray. My scars all look to be healing perfectly and the severe bruising was not unexpected. The only change she made was to increase my Coumadin level closer to what was pre-surgery to reduce blood clotting risks. The NP promised to call my cell to follow up on results of bloodwork and chest X-ray.
I asked the NP about the vision problem I had described above. She explained that this is very common after major surgery and called it an “optic migraine of the eye”; looked it up and confirmed the correct name is “ocular migraine”. Apparently they can be caused by the anesthesia medication given during surgery and always last ~20 minutes. Did some research online and found these links: http://www.allaboutvision.com/conditions/ocular-migraine.htm and http://www.inspire.com/groups/womenheart/discussion/migraines-after-valve-replacement-surgery/ Now that I know they are harmless and common, feel much more calm.
Had a final follow-up meeting with Kathy at 3:45 pm so she could show me how to send in data through a land or VOIP line. Impressive how straightforward and simple the process is. Kathy is a wonderful person and walked me around to pick up a new CCF water bottle (lost mine at checkout), my personal copy of Heart 411 signed and waiting in Dr. Gillinov’s office, and then on to my final meeting, a 4:30 PM free class on Heart Healthy Living. She also came by afterwards and handed me a beautiful “My Little Ponies” book for my daughter, Paolina. Kathy is another one of the many amazing people you meet at CCF.
After all this walking, slept early evening, and joined my arriving Dad for dinner around 9:30 PM at the 24-hr Au Bon Pain inside the CCF Miller Pavilion. This restaurant is excellent as you can look up almost any menu item’s nutrition info and ingredients from a public computer stationed next to the deli. I was able to ensure my salt intake was below the limit, which will be key for losing these last few pounds of fluid.
Felt like it was another excellent day of progress and couldn’t be happier. Was also great to hear about Steven’s successful surgery and will be rooting Karen on as she approaches her upcoming day. Thanks again to all my fellow HVJers and the nice comments they leave. Sorry for being a day delayed with responding, but as most of you know, there are so many distractions right after surgery.
Weight is down to 159 as of 4 AM. Again blood work and EKG’s were taken. All is looking good. As expected blood is still a bit diluted, and therefore anemic, so they are recommending an iron rich diet. Confirmed with the nurse (Sandy, another fantastic one) that I'll be discharged late morning. Pain level is good (no more than 1 or 2 on scale of 10) and am down to taking 1 Percocet every 5 hours. No problems with sinus rhythm, and p-wave is slowly getting bigger, which apparently indicates improved electrical conductivity in the atrium. Heart rate is typically in the 80’s at rest and just over 100 when moving around. Blood pressure finally close to pre-surgery (118/61). The last few days it was hovering a bit low around 100/60 so this was good news. Did 2 walking loops around the hospital floor, shaved for the second time and took a pseudo-shower. The final IV line in my right hand was removed and my close buddy, the wireless ECG/EKG monitor was finally removed after 5 days in place. Actually had the left IV removed on Monday, but think I forgot to mention it.
Spoke with the Cardiologist, and couldn’t believe her recommendation. I am cleared to drive! She said right-thoracotomy patients can drive at 1 week or sooner if the incision looks good. For a sternotomy she would recommend more time (possibly 4 to 6 weeks) because an airbag impact could break the sternal wires loose. Although she said this, it is a bit misleading since I would need to be off Percocet to drive, which I can tell is not going to happen for several days. Cardiologist also said I am ok to walk across the street to our hotel (CC Guesthouse) after discharge and even attend the Indians-Tigers game Thursday. Still needs Natasha's permission on this last item!
Went through the closeout package with the nurse prior to leaving. Will have a total of 8 drugs (5 prescription and 3 non-prescription). Nothing too surprising with closeout except that it was quite anticlimactic. Took a few photos of the view out the room, was escorted via wheelchair to the first floor and was on our own to pick up the prescriptions.
With street clothes on and no wires or IV’s, it feels like I blend in on the street around CCF. The only evidence I’ve had surgery is the wristbands (will cut off tonight), a scab where the neck IV was placed during surgery and the fact that I walk a bit slower than everyone. Beneath my clothes I know there is gruesome bruising, and the right side my chest feels like a solid block, but it seems remarkable there isn’t more evidence of the procedure. Picked up all 8 medicines late afternoon.
I heard from CCF at 5 PM that the final tests (blood, EKG) and outpatient discharge meeting will be tomorrow. It looks like I won’t get a chance to see Dr. Gillinov post-surgery, but I actually think that is good. There are so many others that need his attention (his waiting list was 3 months) and a final meeting to just say hi would take away from time he can devote to others.
Will try to post a few photos from discharge later tonight! Wishing all the best for Steven tomorrow, any others leading up to surgery, and for those going through the ups and downs of recovery.
Definitely a big improvement today. Cleaned up all over, although could only shower my back. Shaved for the first time, and took 3 large walks throughout the day, including another trip to rooftop pavilion with Allison late afternoon. Weight is down to 161 lb, but still up 9 lb from before surgery.
Said goodbye to Hilary and Uncle Ted, who had afternoon flights home. They were always ready to take care of anything I needed. All incisions are looking fine, and I was given the green light to be discharged today. I asked to stay one more night just to see if the junctional rhythm would go away and so my slight fever could be tracked. At the time I requested this, and no idea the good news that was coming in the afternoon.
Met with the research scientist regarding the a-fib study. She gave me the testing kit and we agreed to meet Thursday morning (5/24) at my outpatient release to go over the instructions for transmitting data back to CCF. WIll get a $10/transmission payment from CCF....nice supplement to our income, eh!
Around 1 PM the new nurse (Katie, she is fantastic) pulled the tape on the EKG, and immediately noticed my sinus rhythm had come back. That was the last significant concern I had, so I was apprehensive of this great news. The cardiologist on duty was consulted and she confirmed sinus rhythm had returned. From late Sunday, have been alternating one Percocet and one Tylenol every 4 hours.
The compression socks they gave me on Day 3 (in lieu of the inflatable wraps) were causing some minor pain in my toes. I took them off, and later in the day put on a larger size. No issue since then.
Per Hilary’s nudging, will upload a photo of my left groin incision. I believe they used this incision to do the heart bypass. I was impressed by all the bruising and hope this PG-13 pic isn’t too difficult to look at. One other comment that is purely for the patients….there may be some significant bruising, swelling and fluid buildup in the area down there due to the femoral artery cannulation and possibly the Foley catheter. Will not go into detail here (would never hear the end of it from my sisters and friends), but for those of you that have this issue, know that it is very common and will take time before it goes away!
Feel very lucky to have my sister, Hilary, stay overnight Saturday night to help with any little favor.
Weight is typically measured around 4 AM, and mine is now down to 163lb. Had another chest x-ray, bloodwork, vitals, and an echocardiogram. Slight fever still (about 100), but nothing to worry about and being handled by Tylenol. Met with the cardiologist and NP (Pamela) around 1 PM and they reviewed the echocardiogram. Based on the echo, there is almost no leakage and no signs of a-fib. My heart is still in junctional rhythm, but not unexpected. They felt the results of the surgery couldn’t look much better.
Quick note on physical progress, sat up in bed and again in chair on Day 1 (Fri). On Day 2, walked around the corner and back maybe 100 feet in the morning, and made the short floor loop in the evening. I recall now that oxygen was removed mid-day on Day 2 as well. On Day 3, took a couple of laps around the J6 floor, and visited the rooftop pavilion with sisters and Uncle Ted. Ran into a fellow patient, Matt, that I had met early on during bloodwork. He had a sternotomy to correct an aortic aneurysm and repair a valve. He had his surgery about the same time as mine. It was great to see he was doing just fine.
Overall feeling much better. Finally had a chance to brush my teeth, and wipe down in the morning, but feel tired after doing these minor tasks. There are times during the day when I feel like I am ready for a Cleveland Indians game, and a few hours later feel exhausted (although not in pain). Definitely can see how why recovery process is always described as up and down.
FYI, have posted some pics from the surgery. These are somewhat gory and feel a bit weird sharing them, but I know that seeing other pics (e.g. Paul G's) were helpful for me in understanding what to expect.
Hospital beds are quite comfortable, and they automatically adjust where your weight is positioned. Weight is 165.5 compared to 152.5 pre-surgery. Nurse placed compression pads around calves that alternately swell and decompress, and help avoid buildup of blood clots. Chest x-ray look good with some minor fluid around the right lung. Bloodwork came back with good levels for everything. Vitals fine throughout the day, although slightly low blood pressure (99/52), but nothing to worry about. Developed a slight fever of 102.2, but likely due to the hospital room temperature getting too high. White blood cell count normal, so lowered room temp, opened the door and took a Tylenol. They limit fluid intake to about 1.5 L a day and constantly administer several prescriptions like Lasix (diuretic to pull fluid out of the body), and heparin shots (fast-acting blood thinner). The diet is a “heart-healthy” one, which means low carb, low sodium and low-sugar. The food is decent given the limitations of carbs, salt and sugar. Could eat about 40% of my food on Day 1 and 70% on Day 2.
We met with a CCF cardiologist, Dr. Schiavone. He explained that everything is looking good based on the chest x-ray, with no fluid around the heart. He also explained that my heart was not yet back in sinus rhythm. Currently it is in “junctional” rhythm (http://en.wikipedia.org/wiki/Junctional_rhythm), but apparently this is very common with up to 50% of patients that have mitral valve repair and MAZE. He mentioned that he saw 3 patients earlier today with junctional rhythm, and estimates it will take between a week to several weeks before going back into sinus rhythm. He is aware of only one case where the heart did not convert back and this was with an elderly person with severe health issues.
Pain not bad when not moving, but comes when doing breathing exercises or the dreaded hourly cough. Using pain pump (Fentanyl) about every 1 to 2 hrs, but started Percocet around 9 PM and haven’t used pain pump since. Took two Percocet pills the first time, and slept 4 straight hours!
Said goodbye to Natasha and Paolina and my parents who had to get back home, and hello to my two sister's that arrived. Feel so lucky to have them all here!
Wanted to first thank Natasha for all her updates below. I know I put her, my parents and my Uncle Ted through hell the first 24-hrs, and can’t be more thankful for sticking around and helping with every little favor.
Well, I have to agree with Steven K. Surgery is definitely not a walk in the park! To pick up where Natasha left off, I was wheeled down to surgery the morning of the 17th around 6:30 AM. Just before going into the operating room, one of the three anesthesiologists explained me that the robot was broken! We had heard the robot broke the previous day but would be fixed by that night, but apparently the fix didn’t work. Even though this was a last second surprise, I really didn’t care. I knew that only about a third of Dr. Gillinov’s surgeries can be done robotically due to artery size and the need to access the different areas of the heart. An IV was started and I was wheeled into the operating room.
It is a surreal experience when you are wheeled in. There were ~15 people waiting in either the large room or behind a smaller room with glass windows that are monitoring the procedure. Dr. Gillinov welcomed me, shook my hand and made a joke about the broken robot, which got a laugh out of all of us. The room is quite cold, so it was nearly impossible to stop shivering. Two anesthesiologists started working on my IV lines. Since eating or drinking after midnight is not allowed, my veins had shrunk and it took about 3 pokes on my right arm before that one went in. That was the last pre-surgery memory.
I don't recall the first time my family stopped by, around 2:20 PM. Around 6:30 PM, I remember briefly waking up and seeing my wife and Mom, squeezing their hands and asking about the tube. Apparently a large amount of fluids were draining into the chest tube, so much that they had to wait to see if the drainage would slow to an acceptable level. I was heavily medicated at this point and don’t recall being that uncomfortable. At about 10 PM the family stopped by again, but have any memory of that meeting. At this point, the ICU nurses explained to Natasha that fluid output was still high and if it didn’t continue to decrease, they would have to send me back into surgery to repair any sources of the fluid.
Around 3 AM the ICU nurses woke me up. They explained that my fluid output was decreasing, but I would have to keep the breathing tubes in to make sure I didn’t have to go back into surgery and be re-intubated. I had read that a lot of valve surgeries are completed with the tube being removed while a patient is somewhat sedated or even before they wake up. I was also told that they would be very “aggressive” with removal of the breathing tube. Well so much for expectations! My tubes were left in for about 22 hours. From 3AM to 5AM, I was wide awake and reflexively swallowed/continuously gagged the entire duration. It was a constant mental battle to not reach up and yank them out. Finally the blood gas test results came back within required levels and they proceeded with removal of the tubes.
Removing the tubes is quite painful when you are wide awake. They are removed separately and each one caused me to retch and expell a lot of fluid and mucus. I recall feeling severe pain in my throat and chest for about 5 seconds. After the tube is removed, my mouth and throat were incredibly dry…think Jim Carey’s cottonmouth in Me, Myself and Irene. They allowed me to have a few small spoons of ice, but limited it because they were concerned about nausea. After about thirty minutes they gave me the best tasting grape sugar-free popsicle I’ve ever had.
I learned a few details from the ICU nurses (that were amazing) about my heart condition directly after surgery. Apparently I had some atrial fibrillation with my heart rate around 140 bpm, which they were able to treat with medicine. At one point, they believe my heart went into SVT (supraventricular tachychardia). I had anticipated the A-fib, since it occurs in 60-70% of patients with prior history of A-fib, but hadn’t expected the SVT. Over the last few hours in ICU there were a couple short episodes where my heart rate jumped to around 120 bpm, but they never lasted more than about 5 seconds.
As I mentioned in my previous post, I agreed to take part in a clinical trial where they randomly selected the method for treating potential future atrial fibrillation. I found out afterwards that I was selected for the MAZE procedure, which involves creating scar tissue around the heart to limit the electrical conductivity that might cause a-fib. The MAZE is the procedure most commonly used for treating a-fib, and the procedure that Dr. Gillinov uses most often, so I was pleased to hear this news.
I was transferred to the recovery room around 3 PM on the 18th. The Foley catheter and chest tube was taken out late on Friday the 18th. Will post another update shortly…about to head for a walk to the CCF rooftop pavilion. Hoping the info above can help give some perspective on what bumps could occur along the way during those first few days of recovery.
We feel so fortunate to have so much support from all of you. We are very thankful for all the messages and wishes we received in the last couple of days. I am very sorry for not updating his journal earlier. The surgery day and his first postop day was a roller coaster of events, full of tears and smiles, worries and happy moments, pain and first steps to recovery...
This is a short recap of what happened after my husband was wheeled away to the OR...
It was still very early in the morning. We were at the hospital at 5:15 AM. They've already finished all prep work and took him in the OR unit a little after 6.00 AM. Shortly after we said bye-bye to Tommy, we received a pager from one of the coordinators of the OR nursing station. We were all staring at this pager every minute expecting to receive some updates…
At 8 AM when I couldn't just wait anymore (and I've never been a patient person :-) ), I asked one of the nurses if everything was ok. She assured me that everything was normal and it just takes a lot of prep work to get him ready for the actual surgery.
Around 8:45 AM we had a brilliant idea of stepping away from the waiting room to have a quick breakfast (remember, that we had a three-year-old with us too :-). But as we were checking out (you're supposed to notify one of their coordinators when you leave the waiting room and where you can be found in case they have any messages for you), one of the staff members told us to stick around as they usually have an Orientation Session for all families around 9 AM.
Sure enough, at 9.03AM our pager was buzzing. First message! The message invited all families to a small conference room to give us an update on each patient and tell us what to expect in the next few hours.
The meeting was extremely helpful as they walked us through the entire day of the surgery and gave us an idea of what to expect in the next few hours.
During this meeting they also told us when the first incision was made. Tommy's was made at 8.37AM. There are no words that can describe the feeling you have as you receive this first message: “First incision was made at…” I kept thinking about my young, energetic and healthy husband who was now laying somewhere in a cold OR room, completely knocked out AND they had already operated on him for good 45 minutes by the time we received this first message. I couldn't hold my tears, neither my mother-in-law... We were hiding it pretty well, though. Or at least I thought that we did :-).
Anyhow, as the nurse just finished describing all kinds of messages that we would receive throughout the day of the surgery, our pager was buzzing again... "The major part of the surgery has begun" meaning that they have already started working on his heart. It was 9.33AM...
After the meeting was over, we just kept waiting, waiting and waiting... I swear I felt that the pager was buzzing 10 times as I kept looking at it every few minutes, but we had no messages till 12.03PM. This is when we were asked to go to a small room to meet with Dr. Gillinov for the first time after Tommy’s surgery.
The meeting with Dr. Gillinov was brief. However, he was very professional and tried his best to calm us all down. Despite the fact that the robot was still broken, they did the surgery from the side, making a small incision. Dr. Gillinov said that the surgery was successful and the leakage from his valve was decreased from 4 to almost 0 (on a scale from 0 to 4). He assured us that Tommy was still 100% human :-) meaning that he managed to repair his valve versus replacing it. Before surgery we made a decision to use pig or cow valve in case repair wasn't possible.
After talking to his surgeon, we were somewhat relieved that this part was now over, but we were still anxious to see him after his surgery. Dr. Gillinov asked us to wait for two hours before we could go to the ICU to see him for the first time.
I remember that I was shaking while walking to his ICU unit as many of you here have mentioned before that no matter how much you prepare, you are never ready for it. He was still asleep with a breathing tube and a bunch of other tubes coming out of his body, extremely pale, blood was leaking from some of his tubes, his face and fingers were slightly swollen... BUT HE MADE IT! He was alive!!!
I just kept praying that he recovers from his anesthesia and opens his eyes, so we could talk to him and ask him how he is doing...
Well, I had no idea at that time that his breathing tube would not be removed for another 12 hours... Moreover, I could see my husband opening his eyes only a couple of times by 10.30PM. He was nodding or shaking his head for “Yes” or “No”. He tried to spell out some words to us as he could not talk because of the breathing tube. One of the first words he wrote was "eyes" and "when". We understood that he tried to open his "eyes" but he couldn't and he was asking "when" the tube was going to be removed.
Sometimes it was very hard for him to even move with his index finger in the air to spell the words out for us. We couldn't understand a thing! It was extremely scary to see him in this condition. My husband, who was jumping up and down and making silly jokes just several hours ago, couldn't even keep his eyes open for 20 sec...
His nurse asked us to be easy on him as his blood pressure kept going down when we tried to talk to him, so we left him rest in the ICU while getting more and more worried and confused. During the Orientation Session, we were told that they were very aggressive with a breathing tube and it was usually removed shortly after a patient wakes up from his anesthesia (2-4 hours after surgery).
It was another sleepless night for us… Only at 3 AM when I was in tears and kept asking the ICU nurse about him not progressing much (why does he still have a breathing tube in? Why was he barely awake after more than 12 hours from his surgery? Why is he not getting more alert by now?), she explained that they kept him heavily sedated while his breathing tube was still in. So, no wonder he was half awake and could barely open his eyes in 12 hrs after they finished his surgery!
I wish we found out about it much earlier, not at 3.00 AM when we were all going completely crazy. Not to mention that we were also told that the surgery team that was on duty that night was notified that Tommy had excessive fluids coming out of his chest. I was scared that they would take him on the operating table again…
Two hours later his breathing tube was finally removed!!! This is where Tommy’s story begins… He remembered only a few short moments in the ICU from his surgery day. His "surgery day" began at 3.00AM, around 14 hrs after his surgery was over… :-)
Hey all. Just a brief note that I made it through surgery with no major complications. Natasha will be sending an update tomorrow morning with all the details from the past 24 hours, but overall I am doing just fine now. Plan to spend the next 30 minutes or so reading through my guestbook. Thanks in advance for all your prayers and thoughts. I feel incredibly lucky to have so many positive thought coming out way.
Hope to post a few pics tomorrow as well. Prayers from the Hunt family to all those about to climb their mountain!
Thank you all for your prayers and wishes. We just came back from the hospital. It is 10.00PM. Dr. Gillinov talked to us right after his surgery and said that the surgery went well. However, he is still in the ICU. They have not removed his breathing tube yet as he has excessive fluids coming out his chest. He is feeling pretty uncomfortable right now, but he is well aware of what is going on. He opens his eyes and can answer our questions. He keeps asking when the tube is going to be removed. We expected that he would be a little more alert and awake by tonight. We are hoping that his fluids stop by the morning and the breathing tube can be finally removed. The nurse asked us not to talk to him or stay with him for a long time as his blood pressure drops once he starts talking to us. We kept our visits very short and let him rest more.
I will let you know once we hear anything back from his nurse. Sorry for the short note. We are going to get some rest as we were up since 4.00am this morning. I will write another update tomorrow.
Thanks everyone for your messages and calls.
We just came back to the waiting room after saying bye-bye and wishing good luck to Tommy. We were given a pager to keep us updated on his surgery milestones. I will try my best to keep you updated once we hear anything back from the OR.
The personnel at the Cleveland clinic are exceptionally nice. A lady from Spiritual Care stopped by and we all said a prayer for Tom right before they took him. The OR nurses gave our daughter a coloring book and “a hero hat” to keep her spirits up (check out a new pic of her hat :-) ). Paolina kept asking if daddy’s heart was fixed already or not. The nurses assured her that they would take a good care of daddy’s heart.
We took a family picture right before they took him to the OR. He was cheering everybody up and making jokes as always. We certainly needed it as we were not as calm and cheerful as he was.
This is Natasha, Tom's wife. It is 6.00am. We are at the hospital already. They just took him in the prep room. We should see him one more time before the surgery in 30 min or so. Thanks for all your wishes. I will update again soon!
This will be my last post before surgery. Natasha promised to update as often as possible, but guessing she’ll only get a couple in with our 3-yr old and my family around to keep her distracted. :-)
Met with the nurse and asked a lot of questions today. Confirmed I’ll be going first tomorrow (my preference), so that means waking up (assuming I actually fall asleep) at 4:30 am and checking in at 5:15 am. I agreed to participate in a clinical trial regarding treatment for atrial fibrillation. The study will help doctors determine which treatment option for A-Fib is most effective (pulmonary vein ablation, MAZE procedure, or essentially nothing but exclusion of the atrial appendage). Probably too much info, but figured this might be useful info to a few here.
Met with Dr. Gillinov for the first time as well. He was great, as expected. He believes my mitral valve has a very high likelihood of being repaired robotically via a right thoracotomy, but will not decide this until they take a closer look at the left femoral arteries/veins. An open annuloplasty ring will be used (versus a closed one), and surgery may include replacing stretched or torn chordae with Gore-Tex chords. Although he thinks it's very unlikely I'll need to replace the valve, we discussed valve replacement options. He believes there is a very high probability that within 10 years most valve replacements will be done via transcathter methods. A tissue valve allows the option of avoiding Coumadin for life. He’s the expert, so tissue valve it is.
The nurse provided an anti-microbial cleanser to wash with tonight and in the morning. I was also given a prescription for an anti-bacterial nasal ointment, which is to ensure any potential staph bacteria in the nose cannot be released into the open wounds from surgery. The only reason this was required was that the test for staph bacteria was performed too late for the surgery. I promptly forgot to pick up the anti-biotic this afternoon, but CCF came through for us in a pinch. Their on-call nurse (Diane) was awesome, calling in my prescription at 9 PM to the nearest 24-hr Walgreens pharmacy about 20 minutes from our hotel.
That’s all for now. Will try to get a couple hours sleep before a most interesting day tomorrow. Just wanted to thank everyone that sent me emails and signed the guestbook. Can’t tell you how much your prayers and well wishes are appreciated. Hopefully I’ve provided a few details that may help others approaching their day.
Excited and a bit nervous to climb the mountain but definitely looking forward to the other side. See you soon!
Have a few updates since we arrived here in Cleveland on Sunday night (5/13). Had first day of pre-operative testing Monday 5/14. That included the EKG, two echos (one heart and one for femoral artery in the groin). Followed that up with the chest X-ray. Had to postpone the CT Scan until this afternoon bc insurance was waiting on Peer-to-Peer clearance, which I understand is the CCF cardiologist or surgeon calling the Cigna doctor and explaining why it's necessary.
Today had the heart catheterization. Surprised how easy the procedure was. Given a relaxant via an IV just before the angiogram started, which I would describe as equivalent to a 5-beer buzz (reminded me of my frat house days)! Couldn't feel the catheter in my chest at all. The entry point was sealed with a collagen plug that will dissolve over time. Had to wait for 2 hours before leaving the hospital room. Still feel some minor discomfort at the entry point but it's not bad at all. Not allowed to pick up anything over 10 pounds until the surgery on Thursday, and then it will be even less weight for a while after that.
CT scan was interesting. First time getting one of those. As the iodine contrast was injected through an IV, could feel warmth spreading through the arteries in my chest. Also noticed a metallic taste/smell, but this was all normal.
Tomorrow I get to meet the anesthesiologist, nurse clinician and the main man, Dr. Gillinov. Supposed to be an all-day information session and still finalizing our list of questions (e.g. how many tubes will they put in me? 10, 20?).
Just about the home stretch now with less than 2 days to go. Feel lucky to have my family and parents here with me. Plan to send one more update tomorrow and then Natasha should take over. Thank you all for the prayers, well-wishes and helpful info. Hopefully I can repay all that good karma with some of my own observations and insights.
Time seems to be speeding up with too many things to do and so few days left.
Have uploaded my CCF appointment reminder that arrived a week ago if anyone is interested. Seems like CCF runs an amazingly efficient operation. While we waited for the first available surgery date with Dr. Gillinov these past three months, there's only been one minor revision; the cardiologist overseeing the heart cath was changed. I did get a surprising call yesterday from the CCF financial advisor that the CT scan (required to confirm robotic repair option) has yet to be approved by insurance. Appears to be a mistake in the paperwork by CCF, but approval should come Monday so not too concerned yet.
We have flights, hotels and the limo from the airport to the hotel (complimentary of CCF) arranged. We were able to get rooms for at Intercontinental Hotel & Suites across from CCF for $96/night by using biddingfortravel.com and following their priceline advice. I feel very lucky that my parents, both sisters, my Uncle Ted are all coming to visit during the surgery. Thank you all for the impromptu reunion!
If the valve cannot be repaired, which we understand is very unlikely, the plan is to go with mechanical. Thought process is to avoid as many re-operations as possible given my age (36). Will see what Dr. Gillinov says as well.
We are bringing our 3-yr old to Cleveland, but will wait until Day 2 before she can see me. Would be interested if anyone with children this young had them visit so soon after surgery.
It has been great to read about all those going through surgery this past week including Jack, Cindy, Selma, and several others. Hoping their recoveries will continue to go smoothly. Wishing good luck to all others getting ready for their day.
Well, just a few updates. Had the required dental checkup completed a few weeks ago. Heard the good news that insurance will cover Dr. Gillinov and CCF for mitral valve repair surgery. Monday had final cardiologist appt and scheduled the next one for after surgery.
As a follow up to my first journal entry, I did contact Dr. Gillinov about recording the surgery. I was impressed he responded within 15 minutes via email. His answer was that he would not want to record the surgery because the camera can be obtrusive. I'm a bit disappointed I won't have a video to reference years from now in case I ever need another procedure, but wouldn't want to make a decision on a surgeon based on something so minor. I've seen several of Dr. Gillinov's valve surgery videos online, so I assume the reasoning is that use of a camera could get in the way of the repair and increase time on the heart-lung machine.
Only four weeks to go until surgery and three weeks of work left, with too many tasks to get done. I’ve assumed I’ll be off of work for about a month, but after reading many stories, wonder if I’m being too optimistic. Would be great to hear a few opinions from anyone that has gone through a right thoracotomy mitral repair with MAZE procedure on how long it should take to get back to work.
Have been attentively checking this site for the past few months, knowing that my upcoming May 17th mitral valve repair surgery at CCF is looming. Now that I am reading about surgery dates later than mine, I figured it's about time to come out of hiding and say hi :-).
Thank you Adam and all the contributors to Heart Valve Journals in advance for the excellent information and advice you've been providing. It has made the learning process so much easier and hopefully I can give back to the site at least as much as I have gained.
I guess the only question I have at the moment is if anyone has requested their surgery to be videotaped? My wife, Natasha, thinks it's a crazy request ("Why would you want to look at your own heart being cut up?!"), but thinking into the future, it makes sense to me to have a record of what was done. If a future re-op or some other procedure is needed down the road, we would always open up the file and see what was done way back in 2012. Would be great to hear any thoughts.