Goodish News - The surgeon reviewed my TEE and says that the leak is minor, in the center of the valve, and is not uncommon in larger bovine valves. I also returned from a great hiking trip in the alps to celebrate 1 year (among other things)
1 year (second time around) Bad News/Good News
Journal posted on August 5, 2017
1 year anniversary with my Edwards bovine valve. A bit of bad news, the valve has a small leak but not where a leak would be expected. On a regular echo it looked liked a paravalvular leak (on the outside of the valve). TEE showed that it was inside the valve but not in the center. The leak is pretty minor for now so we will watch and wait (check back in 4-6 months from now)
On to the good news. I otherwise feel fine, heart function and size is normal. I am off on a big vacation in a week that will include a 12 day hike in the alps!
A little over 8 weeks post op. Backpacking trip in Bend OR. Cut short by some early season very wet snow but we got 1 night in.
Echo Results - Everything looking good!
Journal posted on September 27, 2016
Just got back from the cardiologist. My sternum is healed and my echo results look good. My left ventricle is back down to basically normal (that was fast!) and my murmur is gone. The bovine valve looks good. My EF is a bit lower than normal, it was 55 preop and it is down to 45-50 but without the regurgitation which was letting about half back in.
Tomorrow is 6 weeks. Sort of hard to believe. I went for a "jog" (didn't go too far and a good deal of walking involved) this evening since the weather was nice and I am eager to get back on the soccer pitch. It seems like it is a little ways off still but I think this was a good first step. Recalling last recovery I think I was a little further along at 6 weeks though I had a smaller incision that time. I have been back to work for almost 2 weeks which has been good. The first week back I really missed the couch but this week not as much. I have an echo next Thursday and a visit with my cardiologist a week from Tuesday. Hopefully everything is looking good.
It has been a little over two weeks and I am feeling pretty good. Overall I think recovery is going even better than last time (outside of the first couple of days, which were a bit tougher due to the tubes having to stay in longer). I walked over 4 miles total yesterday and felt great. Working on getting back focus and energy. Thanks to friends, family and neighbors for all of the support!
They almost made us stay the weekend for an x-Ray on Monday but they saw the look on our faces and talked with the cardiology fellow who has been looking after me and they let us go. The drive was no problem for me, we made good use of rest stops. At home getting up to the second floor (a couple times already) was also no problem. Last time i was released from the hospital on day 4 and was in bad shape when I got home. This time saying in almost a week I feel pretty fine now that I am home. Pain is mostly in the arms and some other collateral damage areas. Still some discomfort all around but feeling pretty good overall.
I get the feeling that my stint as guest blogger is nearing its end. Steve picked up his phone this evening and checked his own email and texts, which has to be some sort of modern-day surgery recovery milestone.
Other milestones from the day include: Steve was freed from the drainage tubing contraptions midday. One was removed completely; the other two ports were disconnected from the yards of tube and the plastic box things and attached to small plastic bulbs to catch the remaining drainage. Once that was done, it was less hard to stand up and move around a little.
Steve also took his first walks down the hall this afternoon. We're going to go again soon, after he wakes up from a nap.
Steve is 3 days out from surgery now. Yesterday was a hard day, with little identifiable progress. A bright spot was Bridget's visit from the sixth floor. Yesterday Steve ate a little, but nothing tastes good as a result of the anesthesia still in his system and all of the other medications. (For the sake of science, urination was also one of yesterday's achievements and everyone was relieved that there was no need to recatheterize like last time around).
Steve still has all of his chest tubes in. Two of the three continue to collect some drainage, so it is likely he will keep those two another day. All of the tubing makes it even harder to stand up and move from chair to bed (as each tube is attached to its own plastic box contraption), and the whole tubing situation is just very annoying but necessary.
The goal for today, in addition to losing at least one of the drainage tubes, is to walk a little in the hallways. I am sure it will be hard, but I think getting out of the room and feeling progress will be really good for Steve.
Steve was amazed to hear that his photo from yesterday morning made it to Facebook and has over 1,500 comments - he's not quite ready to read them all, but it will be a nice thing to do when he's feeling a bit better, and he continues to appreciate the supportive notes.
I think we're likely to be here at the hospital until Wednesday, but that's really just a guess.
Two days after surgery, Steve is looking forward to getting rid of some chest tubes
Out of ICU
Journal posted on August 6, 2016
Steve and I are both pleased to report that he is out of the ICU and into a private room in the cardiac step-down unit. I just read him my journal posts from yesterday and all of the comments and guestbook posts. Steve sends his thanks! (and shout out to Adam Pick - thanks for creating this community space!)
Steve is napping now. He is feeling a bit more pain in his chest after the move from ICU to the new room, which is hopefully just a result of the extra exertion that it took to move from bed to bed. His drainage tubes will remain in until tomorrow, because there's still a lot of drainage from the chest, but once those are out it will be easier for Steve to start moving around, little by little. Having been through this once before, Steve is already diligently doing his breathing exercises about once an hour.
Steve's mom and I got to spend about 2 hours with Steve in the ICU this afternoon. We saw him briefly just after he arrived in the ICU at about 3 p.m., while he was still intubated, and then we had a longer visit after the breathing tube was removed. We were able to give him ice chips and then water as the anesthesia wore off and he became able to handle them.
We also read him a few of today's text messages from friends and family, which he appreciated. While he couldn't quite keep his eyes open, he managed to grimace (appreciatively!) at all of the promises of hugs, and he wanted me to remind you all that he just had his chest cut open and can't hug for a while. We didn't quite get through all of the messages today, as he tired out, but I am happy to have some material on reserve for the morning.
The ICU nurses seem to think that he will likely get discharged from ICU tomorrow and moved to a step-down unit in the afternoon. Fingers crossed.
Steve is out of surgery. We met with the surgeon, Dr. Johnston, who told us that everything went smoothly. He replaced Steve's aortic valve with an Edwards Perimount valve, which is a cow tissue valve. The hope is that if the tissue fails in the future, it can be replaced through a less-invasive transcatheter procedure.
We will get to see Steve briefly in ICU in the next hour - he will be pretty out of it for the rest of the day, but I look forward to sharing your messages with him when he's more recovered.
Hello friends, family, and HVJ community! Just wanted to update you on Steve's surgery. Surgery started at 8:50 this morning, and at 11:26 they started the major portion of the surgery. We expect it will take a couple more hours, and we hope to see Steve in the ICU by around 5 this evening.
Early start tomorrow. If 2012 was any indication Gloria will bee keeping you updated regularly. Cannot express enough how much I appreciate the support from friends, family and members of this community.
Looking forward to getting back out onto the pitch,on my bike, and into the backcountry. Surgeon told me not to cancel my October backpacking trip in Oregon. We will see.
It has been a while since I have updated this. I didn't think I would be using it this time around but it is both a nice way to update friends and family and an amazing community of fellow HV friends. It has been just over 4 years since my previous surgery, an attempted AV repair, and I have known since a few weeks after the surgery that the repair didn't take and a follow up surgery would be coming and I am pretty thankful I got 4 years (though I was hoping for 5 at the time). The last 4 years have been pretty great, probably the best 4 I have had, so I am feeling okay going into the surgery because I know OHS will not really slow me down. If anything my physical activity has increased (fairly significantly) since the surgery.
The plan is for Dr. Johnston at CC to put in a bioprosthetic valve. Even though this will mean another surgery in the future I am hopeful that I can get at least 10 years and that the next surgery will be valve-in-valve TAVR. This will allow me to keep playing soccer, which I started playing extensively after my last surgery (up to 4 days a week).
I might have a few more posts between now and the surgery but Gloria (now my wife!) will be keeping everyone updated during surgery and in the early recovery. She is pretty excited about yoga on the roof at Cleveland Clinic.
Wishing everyone whose surgery is coming up or has just happened the best and maybe I will see some fellow HVJers walking the halls in Cleveland.
Is anyone out there who has gone through or is going through surgery a federal employee? It is open season and since there is a chance I will need surgery again I am trying to choose an insurance that will allow me the most/best hospital options with reasonable coverage. I would appreciate any input.
Otherwise, I am doing great. Been up to pre-surgery standards (which was good for me) for a while now. Back on my bike and playing soccer. I hiked old rag a couple weeks ago and felt fine.
Sorry I haven't posted in a long time. At this point it has been easiest for me to not think to much about everything.
I saw the cardiologist last week and everything is the same as last time, which I guess is about as good as I could have hoped for. No second surgery for now. The plan is to monitor every three months.
Sorry for the long delay on the update. I am still alive but not so great news from the echo. Looks like there is still leaking. I don't know too much at this point but am going in for a follow up echo in Sept. Plan for now is to just go on and not really think about it much.
Today marks one month since surgery and I am still doing well. Two days ago (Thursday) I returned to work. The only issue with work is avoiding the morning rush hour on the subway. I actually ended up staying at work longer than planned (it was close to 100 degrees out and work has central air and home does not).
Hey all, everything is progressing really well for me. I had a brief follow up with the surgeon today (no tests just checked out my incision and listened to my heart and lungs) and he says everything is looking great.
I am feeling really well and have been able to get out of the house a good deal.
Two weeks after surgery and I am feeling mostly pretty great. I am way ahead of where I thought I would be at this point. So far I have been moving almost completely forward every day. Walks are getting longer, daily activities are getting easier.
Getting a little stir crazy but I am going to try and walk to the local coffee shop for some decaf and some reading in the mornings.
Tomorrow is my first day on my own for most of the day. I think it will be fine.
I had a really good weekend, physically and mentally getting out of the house a lot for the first time.
Saturday morning Gloria and I went to the farmers market. Its walking distance but it was a bit out of my range so we drove. It was nice to be out but the crowds were a bit much for me so we didn't stay too long.
Saturday evening, I am happy to say I made it to Megan & Gabe's wedding ceremony. The ceremony was very nice and it was good to be there. The priest made a heart surgery reference, which was a bit of a coincidence. I did not attend the reception, I think that would have been way too much this early.
Sunday I went out for both lunch and dinner for the first time. Lunch was a pretty big adventure as it was a sit down restaurant and we were there for a while but it was great to be out.
Overall, things are progressing pretty well. Sleeping through the night is the biggest challenge but its getting better.
This week, I need to step up my walking and take some longer walks.
One week ago right now I was in surgery (or so they say, I don't remember). In terms of my recovery from surgery things have been going very well.
Sunday wasn't too bad, I was still getting used to being home. I had a nice visit from Kay and Jon and we went for a walk.
Monday was maybe my best day all around, the pain management was easy, walks were not too difficult and I was even able to laugh a little with not much pain and Brian and Ali stopped by.
Yesterday started out well even though it was Gloria's first day back at work (I can't say enough about how helpful she has been), but by midafternoon I was running a small fever. Eric and Isabella stopped by and we went for a walk, which took my mind of the fever.
When Gloria got home, she I think correctly, theorized that the fever was because I had made a huge reduction in my oxycodone intake. I took one before bed and was feeling better. However, I woke up and had a tough night with leg pains and sweating and genearl uncomfortableness. It seems like I am having a lot more trouble than expected getting off this oxycodone, which is a shame because I don't really need it much anymore and am otherwise doing great.
Going to start with a slower withdrawal program today.
Hey everyone, its me. I finally have the energy to post myself.
Everything is still pretty hard, its little things that you don't realize you will miss the most. I am trying to space out my pain meds more and more and think I made some progress on that last night. I am not sure how some people get off these pains meds so quickly. One of the doctors did tell me that younger people feel more pain, so I guess I just have to deal with that for a while.
Getting out of my own bed this morning was a mental hurtle but it turned out that it wasn't that big of a challenge.
Its pretty hot and humid back here, which sucks, but we got the AC (window units) working overtime.
I hope everyone else who is currently recovering is doing well. I know it is really selfish but I am a little afraid of reading other peoples posts for fear of an emotional set back on my end. I am still thinking about everyone else who is going through this and hoping for the best for all.
Looking forward to a walk up the block later, even thought it is really hot out there.
Steve slept better last night than he did the previous night. His replacement bed was malfunction-free, thankfully. They also upped his pain medication dosage, so he gets more like 4 hours of relief, rather than 2.
For the sake of those other HVJers who are reading this before their own surgeries, he asked me to note that urination was a bug struggle on Days 2-3, and they had to re-catheter him on Day 3 morning. But it got better the afternoon of Day 3, and now is no longer an issue.
I asked Steve if he had anything else to add to this post, and he said "just that you and my parents have been really good at taking care of me."
He also doesn't know how some HVJers were able to journal so soon after their surgeries. So the guest posts will continue a little longer.
Steve is napping while he waits for the nurse to come in for her 4 pm visit. She'll give him more pain meds, which are now being given in pill form, rather than by drip. He misses the pain med button, and was told today that while younger patients heal faster, they feel more pain as they heal. She's also going to change his gown, which is unpleasantly being soaked by drainage from where his drainage port was.
But - he is happy to be free of the drain, and the big neck port, and all of the tubes. All that remains is a single wrist IV. Getting rid of all of that baggage makes it much easier for him to move from bed to chair, and to take a walk down the hall. Not that any of those feats of strength are easy today, but they are better than they were yesterday.
There were a few hiccups overnight. Steve's very high tech bed started to malfunction, so it effectively felt like a deflated air mattress every ten minutes... but he was able to get at least some decent sleep in, and this morning the medical team removed many of his wires and tubes. After and x-ray, he is going to practice walking down the hall again.
I posted before and after pictures of Steve - look under "My Photos."
I wouldn't say that today was terribly fun for Steve but he made it through. This afternoon Steve walked down the hallway, and he reported that it "was not so bad." But later this evening he had some issues with his drainage port, which stays in until tomorrow. It is leaking and making a bloody mess, but while stressful, it is fairly normal. He's dozing now, and will hopefully get good rest tonight. Lots to look forward to tomorrow - drainage port comes out, big IVs come out, more sitting, a bit more walking, more breathing exercises.
Steve's is happy to be out of the CVRR, and into his new private room. It's much quieter. Today is just going to be a rough day, I think - the pain and discomfort is pretty bad. He's moving from bed to chair a couple of times today, and is pretty exhausted by it all.
I asked him if he wanted to dictate a post, but I think it is too much to deal with. He says "hi."
I have been reading everyone's texts, emails, get well cards, and guestbook posts to him - he really appreciates the support, so keep them coming!
At 9 this morning, Steve was moved from the CVRR (intensive care) to a room on the 4th floor in a step-down cardiac care unit. We got to see him as they wheeled him in a wheelchair out of the CVRR, and we rode the elevator with him. Now we're waiting for the staff to settle him into his new bed before we can really visit. He seemed to be in pain on the ride, and didn't say much - I can only imagine that sitting and being moved is quite uncomfortable, given the healing incision and all of the tubes - but I think they will start disconnecting some of the tubes later today. I'll keep you posted.
I got to spend a good hour or so with a groggy Steve. He is enjoying ice chips and small sips of water, and is getting started on breathing exercises with the spirometer (to measure his lung function). He is in good spirits, all things considered, making snarky jokes about eating chicken fried steak for dinner (not happening), declaring that his first sip of water was the most delicious thing he has ever tasted, and generally being adorably appreciative of the care that he's getting from the people around him, and of the messages that I am relaying from friends via text, email, and guestbook post. So - thanks for all of the positive messages!
I think his parents and I will take turns hanging out with him for the next few hours to the extent that we can, and then we will head home when the visiting hours end at the Cardiovascular Recovery Room. Apparently they have a full house tonight, with ten patients. He will be moved to a room in a step-down cardiac care unit tomorrow morning.
It is 5 pm, and Steve's mom and I were sent away from the ICU while they remove his breathing tube. He took a bit of extra time coming out from the anesthesia, because he was uncomfortable so I think they gave him a bit of extra sedative. But for the past hour, we have been trying to keep him awake and trying to get him to take deep breaths, to work up to removing the breathing tube (which is very uncomfortable and prevents him from talking). They said we could come back in soon, at which time I am hoping he will be talking a bit. When we were last in there, he was trying to write out questions on my hand, using his finger, which was only mildly successful. I let him know where he was, and let him know that he got a repair (not the replacement), to which he gave me a thumbs up.
Dr. Bafi just visited us in the waiting room. He was able to successfully repair the valve, and described it as the "ideal result." The repaired valve has no regurgitation and reportedly looks great and is perfect. So no artificial replacement valve, and no life-long regimen of blood thinners needed. Steve will be very relieved when he wakes up in a few hours :)
We got to spend about 30 minutes with Steve in pre-op before they took him down the hall to surgery at 6:45. He is in good hands - we met the nurses and the anesthesiologist, who were all very professional and sensitive to Steve's nerves. Dr. Bafi, Steve's surgeon, also stopped by.
At 7:30, Sue Sue, the OR nurse, stopped by the waiting room to let us know that Steve is now under anesthesia. They've estimated that he will be out of surgery by 10:30 or 11.
Good morning, good morning! We woke up dark and early this morning and made it to the hospital right at 5. Steve is getting prepped for surgery, and his parents and I are getting comfy in the waiting room.
Thanks for all of the well-wishes, prayers, and positive vibes today - it means a lot to Steve.