I just posted a photo of my wife and I celebrating our 14th anniversary by going for a kayak session on a local lake. We kayaked at Catalina Island in CA for our honeymoon, so I thought this would be a fitting commemoration. It made me think about my heart, where I've come, where I'm going, and then I started to think about this wonderful site. So here I am posting an update after a bit of a hiatus in the chance that there are others with the heart surgery sword-of-Damocles over their heads that might need encouragement.
I've been pretty silent; last post was on March 25th (today is June 10th). This, I hope, is an encouragement to anyone who's facing heart surgery. It means that I've gotten busy with life, and the vagaries of surgery and recovery have taken a bit of a back-burner stance in my mind. What a wonderful thing to forget about surgery and MVP now and again! My message to any in fear: it WILL pass, and you WILL get your life back. After surgery, recovery was my life. I had a time where I couldn't get through a meal without taking a nap partway through, and then if I took a short, shuffling walk I'd have to take another nap. I'd be sore from just existing. But now? I go whole days without even thinking about the fact that I had surgery a few short months ago.
Back to the kayaking. I've tried to exercise beyond simple walks and playing with my kid, but it always left me sore and drained. Yesterday's kayaking was tough to be sure, but I noticed something: after straining, I didn't feel winded. I wasn't "sucking air" like I would have been pre-surgery. This is the first time that I felt not just better than I was after surgery, but before! The surgery worked!
This is not to say I'm at 100%; far from it. I still struggle, get tired, have soreness and numbness, and am on some medications. BUT this is the first taste of what might be to come: not just longer life than without the surgery, but better quality of life than before the surgery. That's exciting enough that I felt I should share.
Since it's a pet concern of mine, I'm going to add a note on "pumphead": I feel like I'm all recovered from that. I managed an A- in a quantum field theory class that I was taking through this ordeal (it started before and ended after surgery), so I feel like there couldn't have been too marked of a cognitive dysfunction and it certainly doesn't seem lasting. I'm in the midst of writing a PhD proposal and doing a good bit of research, and I feel as lucid and capable as I did pre-diagnosis. My advice on pumphead is this: surgery is an extremely traumatic event; give your entire person, including your mind, time to recover. Be realistic with the fact that it will take time for body, mind, and soul to come back to normal.
3 months post op; celebrating our anniversary by a nice kayak session on the lake. I feel great, considering!
4 Weeks Post-op: Hills and Valleys
Journal posted on March 25, 2020
I haven't posted in a bit; life's been busy (for all of us, it seems!). I'd like to write down some impressions of the last several weeks, along with my experience with the dreaded "pumphead" syndrome (spoiler: I think I'm fine, now). Writing helps me to process some of this stuff, and I hope and pray it helps others out there who are about to go through this ordeal to know what to expect and to know that it's going to turn out OK.
People keep asking me, "how's your heart now that the surgery is done?" And I have to keep answering, "I don't know." All right, that's not 100% true now, but for the first couple of weeks it absolutely was. The trauma of surgery on my body overwhelmed any impressions I could have on my heart's condition. Chest pain, chest tightness, pain in the incision sites, elevated heart rate, the effects of medications; how am I supposed to differentiate all those effects from how my heart feels? We call that "background noise" in my business; it's the stuff going on in the background that you don't care about, but it fuzzies up the signal you're trying to read. Think of it this way: let's say you're trying to see how bright a flashlight is that you've just worked on fixing, but you're testing it outside on a clear day at noon. It's going to be difficult to really know how bright that flashlight is. Sure, you know it's on; but aside from that it's hard to get a good read of it. That's how I felt the first several weeks when trying to ascertain the condition of my "new" heart. With the analogous sun starting to set a bit, I can finally see the light of the flashlight a bit clearer. More on that in a bit; suffice to say, I couldn't answer that question well.
Recovery is a mixed bag. Some days, I almost forget that I had surgery a month ago. OK, that's not quite true; some HOURS I forget that I had surgery. Lord willing there will be a full day like that soon, but not quite yet. Other times I feel like I'm never going to recover as the effects are hitting me so hard: incision site pain (this is a big one), easy tiredness, fuzzy headedness, and things like that. Taking a page from members on here, I've decided not to sweat the bad days and to assess myself over weeks instead. Am I doing better this week than last? What can I do this week that I couldn't do last? That sort of thing. Here's where I sit week 4 vs week 1:
-I can do things all day without taking a nap midway through.
-I can walk as far as I like.
-I slept in my own bed last night; no more chair! (I've been sleeping in a recliner since I got home.)
-My thinking is far more clear than it has been.
-Effects from medication are less marked; less dizziness, drowsiness, etc.
-Heart rate is down (from mid-90s to mid-80s, but even 70s sometimes and once in the 60s). My pre-surgery, resting heart rate was in the 60s.
Those are the bigs. It's still a trial, and there are still things left to heal and watch out for. I have a nice, 2" incision right about at my armpit that's been killing me (worse than the larger one in the groin used to access the femoral artery). It was improving, but a few days ago I did something stupid: I reached for something a little too far. Now it feels as bad as it did a week and a half ago. I still can't raise my right hand all the way over my head, either. But at least I can sneeze without feeling like my torso is going to explode out my armpit! I sneezed about a week post-op and it felt worse than getting punched in the face. Like I said, mixed bag.
The point is, recovery's been a steady improvement when tracked over weeks. The days are up and down, but the weeks are great. Kind of like how stocks can go (that's on most people's minds right now, I should think). An increasing stock can often oscillate a lot over a day, but if you zoom out to a month's time you see a steady increase.
Now for a word or two on pumphead. This was, for me, the scariest possible side effect of the surgery (aside from, you know, death). I'm a physics PhD student; analytics is my bread and butter. If my cognitive function couldn't be what it was, I'm a bit sunk. Even the fact that I'd have a MS to fall back on if I couldn't finish the PhD was of little consolation as I couldn't do the job I could get with an MS if my brain couldn't do physics anymore. I read a bit about pumphead; is it real, who gets it, how marked it is, etc. I'd heard from some that it's very real and lifelong; from others I'd heard it's a total myth. I'm here to share my experience as someone who was on the pump for a while; some 3 hours or more. I was under even longer. Just post surgery I had a really hard time thinking. I wasn't as sharp; just didn't have the "connections" I did prior. Friends and family said I was fine, but I knew what was going on inside my head. I knew that math analysis based joke I just told the nurse was done to test myself and not off-the-cuff; in short, I knew I was impaired.
But every aspect of me was impaired; why wouldn't my brain be? I was cut open, messed with, sewn up, and then shot full of drugs and left in an unfamiliar place with unfamiliar people and having unfamiliar feelings. It wasn't fair for me to be assessing my cognitive function just yet, so I gave it some time. Several days on, I attempted to tackle a research paper in some theoretical physics topic. I was totally lost a few pages in, which gave me pause; then I remembered I was totally lost at about that point on the same paper prior to surgery. I played my seven year old in chess (one of his favourite games) about three weeks post-op, and I made some really dumb mistakes. This was my first thought of, "what if I really have pumphead?" It was concerning. But couldn't there be other explanations? Off day, too much on my mind, underestimating my son's prowess (he's a smart kid and can surprise me at chess); why attribute it to pumphead?
I worked on some Python and C++ coding and didn't feel impaired, but that's not necessarily analytically taxing to the highest level (for the stuff I'm doing; some coding may be much more difficult). I went to a few classes on quantum field theory and seemed to understand everything as well as I could expect normally, but that's also not too taxing mentally as I'm merely following someone else's steps. Today was the first day I had a real test: working quantum field theory homework problems with a fellow student (one with whom I've worked extensively over the last couple of years). Verdict: everything's good. Full faculty and function.
I'll close with a few thoughts on pumphead from my experience. First, I've heard that the anesthesia can take time to leave your body; like months, even. If that's the case, one could expect marked cognitive dysfunction post surgery for possibly a few months. Another thing is this: athletic people bounce back from surgery quicker. Now I know what you're thinking: "Skip, you're not very athletic; I don't think this applies to you." You're right, for the physical side of it. I'm active enough, but not that athletic and I don't have a regular exercise routine. But as far as analytics are concerned, that's another story. I've been intensively studying math and physics for over seven years; I learn a new computational skill and new mathematical formalisms almost every week, and I often code and do math for hours ever single day. In that respect, my analytical "fitness" is quite high. Maybe having a "fit" brain can help bounce back quicker from pumphead? I don't know, but it's an idea. If that's the case, it might be worthwhile for people to bump up their Sudoku, puzzle solving, game playing, etc. leading up to surgery just like getting into a regular exercise program, and to keep performing analytical tasks post surgery just like doing cardiac rehab (after a short layoff, of course). This is just a thought and in no way medical advice, but I think it's worth considering.
Before I forget: my heart! Is it better? Can I answer that question? I can say this: I haven't been feeling the issues I had pre-surgery. No PAC/PVC, no weird chest tightness; that's all gone. I can't yet speak for shortness of breath when exercising and the like because the effects of surgery are still too manifest; hopefully I can speak to that in a few months.
Well, those are my thoughts about a month on. I'm feeling healthier, but not yet whole; Lord willing a few more months like this and I'll be better than where I was pre surgery. Soldier on, fellow heart valve patients!
I wanted to take some time to record some impressions from immediately post surgery before they get lost in the fog of memory. I found it so helpful to read over other people's experiences when I was ramping up to surgery, so here's my attempt to provide the same for anyone else going through the process right now.
First, once you go in to get processed for surgery there's a certain amount of rest that you can enjoy. You probably won't (if, like me, you're also scared out of your mind). But the nice thing is, your part is done for a little while; time for all those surgeons and their teams to earn their well-deserved pay. They took care of everything in my case; all I had to do was follow orders. And those were very light: state your date of birth, sit here, change into this gown, etc. I tried to just relax and let them do their jobs; maybe crack a few jokes here and there, but that was more for my nerves than anything else.
I got into the wheelchair and said goodbye to my family. We walked for a very short time (much shorter than I'd have liked, but then I was also ready to just do it) and BOOM; we're at the door to the operating room. The room was bustling; people prepping trays and machines and talking with each other, but all business. It was a very serious atmosphere, and it felt very surreal to have multiple teams of professionals at the top of their game all there for the sole purpose of my health. It's an intimidating, comforting experience. I've never felt anything like it, and would honestly be happy to not feel it again. I laid out on a table and was surprised at how bright and how prolific the LED lighting in the ceiling was. One of my surgeons (they work in a two-person team for robotics) was there already, and he was fantastic (Dr. Eugene Grossi). He immediately started picking my brain about which programming languages were best for machine learning algorithms; this was based on a prior conversation of ours, and I could tell he had paid attention. I knew exactly what he was doing: distracting me to put me at ease. And God bless him for it! Next came a little stick from the anesthesia team (who I had prepped about my predilection to pass out with needles; no such doing today), a little more small talk, and then the room went a bit fuzzy.
I woke up not knowing I had been asleep, and was fairly heavily sedated. I was in CICU recovery, but in my mind I thought I was still in the OR. Things were quite the blur; I felt that there was a group of people in another room talking and I called out quite a few times for help as I was having trouble breathing. It was probably less dramatic than it felt, but I'm very unused to narcotics of any kind (more on this later). That first night of recovery was the worst night. I have mainly nothing but glowing praise for NYU Langone's staff (and I have had nothing but a fantastic experience with the surgical team and staff), but I must except the first night's nurse from this. She was rude, curt, and didn't have much time for anything. Unfortunately this came at a very vulnerable time, so the deficiencies of this particular staff member were amplified. All of the other nurses we interacted with were exceptional. I was very thankful to have my wife there to advocate for me that first night.
When I started to come out of my deep stupor, the first thing I noticed was pain. Lots of pain; pain moving, pain sitting still, and most especially pain breathing. I came to learn there was a thing called a "chest tube;" this was for post-surgical drainage. Now, I want to write my honest impressions on this, but I'm going to include a bit of a warning to those who are about to undergo this procedure: it's temporary. That said, I hate the chest-tube more than anything! It felt like I had a very tight, spiked cord tied around my chest. You can feel it at all times, but when you breath in your lungs push against the "spikes" and, well, it really hurts. A lot. My advice: push through. Hit that button for pain meds and keep on breathing. That pain means you made it out alive, but now the doctors' work has started to transition to your work. You want to feel better? Earn it: breath through that pain. That's how I felt about it, in any case, and it helped me to get through.
The next day they removed the tube, but I had to do a lot of "deep" breathing to get to that point ("deep" being relative here as the cord prevented truly deep breaths). Removal of the tube was ... strange (how do I describe a tube being pulled out of you?), but breathing was immediately better. It still hurt, but it was far more bearable. A note on my procedure: I've heard that robotic repair has a much lower down time than a sternotomy (and I think less than even keyhole), but the word on the street is it's a more painful recovery. I believe it now that I've experienced it. The machines are rubbing up against the inside of your chest cavity and that, in addition to the chest tube being up there, makes your entire torso raw. But keep the faith: I had surgery on Thursday, today is Monday, and I can yawn deeply without pain right now. You just have to push through.
Later that day, PT came by and I took a lap around the CICU. He let me know that younger people (it's all relative; I don't often feel young at 41) feel more pain from surgery. I don't know if he was just being nice, but I appreciated it! I was downgraded from ICU to Acute, though we stayed in the same room (NYU Langone's Tisch hospital has the marked benefit of all the rooms on that wing being ICU-capable, so you don't have to be in "ICU" to still have intensive care, and your recovery room in ICU isn't a tiny room). I started to enjoy the view outside, to breath a little deeper, and to look forward in the future beyond the next shot or the next IV.
I don't do well with needles, medications, or doctors telling me what to do. This was basically my worst nightmare: being surrounded by health care professionals who wanted nothing more than to monitor my every move and inject me with things all the time. That said, most of the staff was amazing (save the one aforementioned). Our night nurse that night, in particular, was above and beyond anything I expected. She even shooed away anyone who wanted to come by and test something while we were sleeping (while keeping an eye on me, of course).
The night passed better than the first, and the next morning had me feeling a little restless in the hospital room. I wasn't exactly ready to go home; I was scared to lose the protection of the hospital in case the worst should happen. I didn't like having a blood pressure cuff which would automatically go off, a heart rate monitor on me at all times, or the multiple IVs (I was down to 2 in my left arm; they'd taken out the one in my right neck and the arterial line in my left arm the day before), but still there was a relative peace knowing that there was an entire staff of professionals ready and waiting to jump into action if needed. An ultrasound technician came by (as opposed to the regular X-ray tech who would come and take a shot of my lungs) and did a TTE. We waited for a bit, then a nurse practitioner from our surgeon's team came with the news: TTE is all clear. Mitral valve is completely fixed, and there is no regurgitation. I was free to go home, less than 48 hours after they wheeled me back to the OR for my repair.
I felt ... relieved? Scared? Both? Didn't know that was even possible, but it had been a strange ride, so I just went with the feelings. We packed up and headed out, and I took a nice nap while my wonderful wife drove us the ~2 hours home. I got out of the car and just walked into the house; like a normal person on a normal day. I didn't know what to make of it.
Let's take a brief minute to talk about feelings and drugs for a moment (we're all friends here, right?). I have never taken anything recreationally. I was once prescribed hypocodeine after wisdom teeth removal, but I refused it. The only times I'd been under heavy drug effects was for my wisdom teeth (twilight, some 20 years ago) and for my TEE and heart cath about a month ago. Now I was going home with a script for Dilaudid, and had been on it at the hospital (though I did have them lower my dose as I was getting nauseous from it). Opiates are no joke. Weird dreams, some mild hallucination, and not to mention going to sleep was just ... different. It was like slipping into another, real world with strange new rules and warped colours. To be quite candid, I hated it and it scares me a bit because I know how addictive it can be. I have yet to take a pill of it since I left the hospital, and Lord willing it'll stay that way. If you need it for pain, take it; but tread lightly. Don't underestimate it if you're uninitiated. Even coming off I had strange dreams and heightened emotions (why am I crying at the end of watching The Grinch with my son?). If you don't need it for pain, leave it alone. Extra strength Tylenol has been doing wonders. Aside from that, I'm on a small list of other things. Aspirin, beta blockers, and a steroid at least. The beta blockers make me dizzy, and the steroids can raise my heart rate (I think I'm on something to lower that). My wife picked up a heart rate/oxygen monitor and a blood pressure cuff; I highly recommend these as they help with peace of mind once you're no longer in the constant-monitor zone of the hospital.
I'll share more later on some of the other things; incision sites, walking, and all that. For now, I think I'm going to go sit in a chair and do nothing for a bit. Thank you, Lord, for my health! Thank you to this site for so much help! And thank you to my friends and family who have constantly supported me in more ways than they can ever know.
Headed home; Lord willing to a full recovery. We got the word back on the valve: no regurgitation! So at least the surgery was a success. I'm on a lot more meds than I would have liked, but such is surgery. I'll write up impressions later. For now, I thin
We're here getting everything ready for an overnight stay tomorrow in NYC leading to my surgery on Thursday. Earlier today, I gathered all of the study materials I'll need for over the recovery period and left my desk in the lab for the last time before I'm on the other side of heart surgery. This is getting very real very quickly. At times, I'm very ready. Eager, even. My attitude is, "bring it on! I got this!" At other times, I'm almost hoping for something to postpone the surgery just to get out of it and wondering when I'm going to wake up from this surreal dream.
What a spectrum of experiences this has been, and I imagine will continue to be. I do believe that God is growing me as a person through this (as He often does when we experience hardship); it'll be very interesting to look back on in a few months and years.
Thank you all for your constant support and encouragement; I often need it, and I always appreciate it! Two days to go, and then I'll be posting about the recovery process. Stay tuned!
CT scan and pre-op bloodwork went great! Didn't pass out once; only got a little woozy for the bloodwork stick, but not bad at all. Thank God for that! Now only one more procedure to go ...
One week out. CT time!
Journal posted on February 20, 2020
I am now one week out from surgery. I felt so often in the last month that surgery would never some, and now it feels like it's coming on too fast! I know that's a pretty normal reaction, but it's still interesting to experience. I have my CT scan (with dye) and some blood work tomorrow. Pray I don't pass out; that happens with me and needles sometimes. My wife and son will be there, but I won't have them in the room for the procedures. Looking forward to having this next hurdle cleared and moving onward to surgery (but really, I'm most looking forward to viewing my surgery in the rear view mirror!).
My wife and I started looking for child care for my trip in to do the pre-op CT scan and bloodwork in two weeks, and that brought my surgery in three weeks into sharp reality. It kind of lurks in the background most of the time as it's not happening imminently, but every now and again something brings it to the forefront. Having had no idea my entire life that I even had this mitral valve issue until last month has made for an interesting range of emotions. I'm trying to keep busy through the waiting period, but sometimes it's really difficult to focus on other things.
Three weeks out; it feels like surgery is a moment and an eternity away.
Today, we met with Dr. Didier Loulmet out of NYU Langone. I've been very interested in minimally invasive repairs for my mitral valve, and the research I did lead me to favour the robotic approach if I were a candidate for it. Dr. Loulmet piqued my interest as he actually performed the first robotic mitral valve repair under Dr. Carpentier in 1998, and he's been doing them ever since (this is what lead us to reach out to his office in the first place). He reviewed my TEE, TTE, and catheter results and is very confident that I can expect a solid repair using this minimally invasive technique. I'm both excited and, if I'm honest, really nervous; but at least I now have a date to look forward to: on February 27, 2020, I go under the robotic knife.
Here to get my TEE and heart catheter. Smiling because my beautiful wife is on the other side of that camera.
TEE and Heart Catheter: Done!
Journal posted on January 15, 2020
They did the TEE and heart catheter today, and it wasn't nearly so bad as I anticipated. That said, I still really didn't like it. I'm pretty boring in the "party" department; never done drugs, don't drink, etc. I'm not against drinking per se, but personally I loathe the feeling of being out of complete control of my person. So ... yeah. Didn't like getting put under nor being in "twilight." But aside from my personal misgivings, I don't think the experience could have gone much better. The docs and nurses were top notch; I didn't even pass out on the initial stick! My pulse got down into the 30s, but I didn't pass out, so ... I win?
TEE showed some more stuff for the surgeons to chew on. Chorda are ruptured (well, at least one), both valves prolapsed, posterior is the real kicker. But aside from that (and the resultant left atrial enlargement), my heart is in great shape. Catheter was mostly smooth; they had to go in the groin for the veinous one, but they were able to do the arterial in my arm. No issues revealed, which is a giant relief as my Dad had a heart attack due to congested blood vessels in his 40s.
All in all, I couldn't ask for better results. Thanking God for His grace and my amazing wife for being at my side all day. If you're stressing the TEE/cath: don't. I feel a bit like I was hit by a truck, but the procedures themselves went swimmingly and the staff of professionals did everything they could to make me feel as comfortable as possible given the situation.
TEE and catheter (left and right side) start at 6am tomorrow (well, prep). I should be in most of the day. I absolutely loathe medical procedures and am mildly freaking out over here. Are they pretty easy to get through, for those of you who have done them?
I know that this is just boiler plate stuff, but not being used to doing anything much with doctors I'm a little nervous about my upcoming TEE and heart catheter. Any advice on what gets you all through procedures like this?
Me and the family visiting the beam pipe at BNL's RHIC.
Journal posted on January 8, 2020
I don't have a surgery scheduled, or even a surgeon picked out yet. Last month, I went into the doctor for some arrhythmic heartbeats I had been feeling; nothing that was a big deal, but a few seconds here and there that just felt too weird to be something I ate, lack of sleep, or what have you. The doctor listened to my heart and did an EKG, then she said I might have a condition called PAC/PVC. She also noted I had a heart murmur. When I let her know that no one had ever noticed that before in my life, she scheduled me for a TTE.
I'm 41 and reasonably healthy. I have a wife, a seven year old son, and another on the way (we found that out in November; some good news!). I'm a researcher and a PhD student; I'm supposed to complete my proposal this semester. All of which is to say that I'm a busy guy and never really go to the doctor unless something's wrong; no physicals, well checks, etc. So when the TTE was going on I was not at all ready for the results: mitral valve prolapse with severe regurgitation and severe LAE. Recommendation: heart surgery. Yikes.
I'm still wrapping my head around all this. As I'm a guy who loves to learn and research, I've been devouring information for the last week (diagnosis was a week ago tomorrow). I have a TEE and left and right side catheter scheduled for next Wednesday, and I'm set to see a surgeon next Friday (Dr. Loulmet at NYU, who I found via research on robotic mitral valve repair). I've never had surgery in my life; never been on meds, never even been put under. Shoot, even having blood taken is something I only do if I must (I pass out sometimes ever since a bad experience as a kid in a Navy hospital; very annoying, but usually I can hold out). I feel like I'm going from 0-100 sometimes ... sitting on the roof of the car ... in a residential area ... while holding a baby.
I thought I was asymptomatic, but it turns out I'm just really not self-aware. I feel the symptoms all the time now, and I love the idea of feeling more normal again. It's a great encouragement to hear all of your stories and read through the blogs and interviews. It's starting to feel like, Lord willing and with the support of my amazing wife, this dark cloud will actually lift to reveal a brighter future on the other side.
All right, that's enough ranting for now. I'm happy to be here and happy to have a path forward, but I'll probably feel miles better when I have an actual surgeon, surgery date, and surgery type lined up. Thanks for providing this space for people to get a handle on valve surgery!