On Thursday, May 19, I got open-heart surgery. It was expected and scheduled. I got one heart valve replaced and one repaired. I was in the hospital for about five days after that and everything is going really well right now. The recovery process has been pretty smooth though definitely a lot harder than I anticipated. I’ve never been through something as big as this physically and the toll it takes energy-wise. I’m on home rest now for a couple weeks where my job is to basically take naps when needed, eat healthy, get a good night sleep and go for a bunch of 10 minute walks each day. And I’ll probably keep the Long Version updated as I go through the process.
You can’t really say that I buried the lede on this one. I was born with a leaky heart valve, often called a murmur. A doctor re-found it on a routine physical around 1993 and when I told my mother that I had a murmur, she just said “Oh yeah, you had that when you were born!” and from then, I’ve been getting it checked each year.
I’ve recently been looking for what this whole surgery experience is like, because I like to know going in, and I really couldn’t find much information outside the tragic. So I’ll write about my experience, with the usual caveat, I’m not a doctor, this is not medical advice and all other situations may be different. I’m just writing about my experience here. Also, I’ll do my best to get the medical stuff right, but no guarantees on that.
Each year, I’d visit a cardiologist and get an echocardiogram which is a type of ultrasound. They can easily look inside the heart and see how the valves are doing. As blood returns from the body in veins, it needs to be re-sent to the lungs to be oxygenated and then pumped back out to the body in the arteries. There are different chambers of the heart that ensure this flow keeps going in the correct direction and between the chambers are little doors, or valves. When the doctor first heard my murmur, it was in the aortic valve. That’s the last valve blood passes through when it leaves the heart with oxygenated blood to the body. The heart is basically done with its job at that point and wants the blood to go out through the body. If that door, or valve (aortic valve) is left slightly ajar when the heart pumps, some blood leaks backwards, into the heart and into a chamber that should be empty. It’s this ajar door that makes for a leaky valve, or a murmur. When you listen to a heart without leaks, you often hear the distinctive lub-dub, lub-dub sound. Blood coming in, blood being pushed out. But until recently, mine sounded more like lub-swoosh, lub-swoosh, as a lot of the blood was leaking back in, because the valve just wasn’t completely closed. Why did that happen? I don’t know, as Lady Gaga says “I was born this way!”
One problem with leaky heart valves is the heart doesn’t work as efficiently as it could. And to make up for the efficiency, it grows larger. Eventually a too-large heart just stops working. This is what we were keeping our eye on, how much blood was leaking back through this aortic valve and how much my heart was growing, due to the extra work. Every year it was the same, get the echocardiogram done, see the cardiologist for 10 minutes, he’d say everything still looks ok, see you next year. Every year for about 25 years. Every year, the cardiologist would say “hopefully this isn’t something you have to deal with for another 30 years and by then, the technology will be such that the surgery can be done easily through a leg vein or something.” Yeah, hopefully.
Then came my appointment in October last year. I expected more of the same. However this time, the doctor called me. He explained that he’d like me to come in sooner than my appointment because the numbers had gotten concerning. I went in and he showed the annual increase and how those metrics indicated that the amount of blood leaking backwards had increased from “moderate” to “severe” and my heart had grown into the “severe” stage as well. He wanted me to speak with a cardiac surgeon. Uh oh.
The Search for a Surgeon
I did meet with more than one surgeon and settled on one that I really liked. He took the time to answer all my questions and all his answers really made sense to me. However, during this process, I realized something. They were now talking about two valves. I realized that they were now talking about the aortic valve and the mitral valve in my heart. Here’s a picture, from Wikipedia:
Both the mitral valve and aortic valve are shown near each other here, on the pink side (yes “pink side” is a medical term that doctors use all the time). The mitral valve is inside the heart and helps blood to flow in the right direction through the heart as it pumps. Again, we don’t want blood going backwards as that creates inefficiency and causes the heart to grow.
It was during one of these visits that I was just like “Wait, we’d only ever talked about one valve for years, but now there’s two on the list. What’s going on?” Fortunately I had with me about 10 years of reports and the doctor went over all of that with me, showed that the mitral valve really hadn’t been any concern at all until very recently. But now it is.
Figuring Out the Surgery
Some heart valve surgeries can be done through a cathether run through a vein in the leg. So yes, I want that! I don’t want my whole chest opened up (Oops, I revealed that spoiler already) However, the mitral valve just can’t be repaired all that easily (in my case) through a vein. We want it done right, so we need to open up. And while we’re there, we’ll do the aortic too. Heck, they even checked me for arterial blockages (stuff that causes heart attacks – another doctor term) as he’d fix that too while he was in there. Why no just get the full 100,000 mile tuneup? Fortunately my arteries were clean, no tuneup needed, just the two valves.
As we caught this relatively early, I’d only this year moved into that “severe” category, my valves didn’t have much damage and were deemed to be potentially repairable. This was scary the first time I’d heard “we can probably repair the valves” and thought it was weird that it was in a tone of “this is good news!” because why the “probably”? Is the alternative to not be able to repair them and then “Well, sorry and good luck with the rest of your life!” But no, the doctor explained that the options are repair or replace. Ohhh, much better. If they are able to repair my valves, then nothing more would need to be done ever. I’d have heart valves that are just like everyone else who wasn’t born with leaky valves. So yes, let’s do that! Then came the “but”. The surgeon explained that he was near certain that the mitral valve is repairable and will not need to be replaced, but the aortic valve, that one’s a bit tougher. I’m still not exactly sure why, but he said there is a chance it could be repaired, but he told me the likelihood is about 50/50. Ok, I’m good with those odds, because what he also added is that after the mitral is repaired, if the aortic needs to replaced again, it can likely be done through a vein in an outpatient appointment, probably 10-15 years from now. This is sounding better and better. I just need to get through this first surgery.
In addition to the external echocardiogram, the doctors wanted me to get a Transesophogeal Echocardiogram (TEE). This is an outpatient procedure where I think I checked in around 8 am and was leaving the facility by 10:30. During the approximate 30 minute procedure, I was sedated. Allegedly still awake, though I don’t remember any of it. They put a camera in a tube down my throat and got more pictures of my heart that way. I guess they get better pictures without having to look through the skin, ribs and lungs. That procedure wasn’t that bad, but I was loopy for about six hours after.
With all the prep done, I picked a day and scheduled the surgery. I put it about a month out as I wanted time to wrap things up at work and ensure I’d have a place for my dog to go. The estimate was that I’d be in the hospital for 5-7 days, including the one extra day when they wanted to check that my arteries were clear.
On the morning of my first procedure, I checked in at about 8 am. I got my wristband and said goodbye to normal clothes and any inklings of modesty for the next week. I only wore the hospital gown and some socks they gave me. I was first on the list for the artery check. The doctor performing it came to see me and laughed when I answered his “so you know why you’re here question” with an honest “Not really.” I knew I was getting a cardiac catheterization but really didn’t know what that meant. Did it mean they’d shoot dye into me and take pictures when I glow, or will they actually thread a camera through an artery and feed it all the way to my heart? It was the latter. I got to the examination room which was like an operating room a little bit, but darker. I was told that I’d even be able to watch the proceedings myself on the TV screen in the room, which seemed kinda neat. This was another procedure that has some sedation to it and in hindsight, the details are fuzzy. I do remember things like “You’ll feel a pinch, that’s the numbing agent” as they injected my wrist and I remember looking over at the TV screen a couple times and seeing what usually passes for pictures of veins or arteries. After about 45 minutes, I was done and wheeled back out to where I started. So wait, I just had a camera inside my heart? I was told, yes. Surgery was scheduled for the next day and there’s a few hours to wait out the sedative, so the hospital just kept me overnight. I thought this was great, like being in a weird hotel room. Get room service food (I had pizza!), free TV, internet, so much fun! I was told that again, I was the first of the day, scheduled for 6:30 am. But there’s some prep for that. I didn’t go to bed too early, but figured I’d be getting lots of sleep in the coming days.
Surgery scheduled for 6:30 means you’ll get wheeled into the operating room at 7:15 am, or thereabouts. You could get picked up and brought down to the holding area any time from 5:30 to 6:30. But before you go, they make you take a shower with a disinfectant soap, especially focusing on the area where the surgery will be. So I dutifully scrubbed my chest for the recommended three minutes with that soap. I was done and back in my gown ready to go at 5:45. I wasn’t picked up until almost 6:30 am. When I got to the pre-operative area, it was already bustling with all types of medical professionals, working on all different types of patients, not just cardiac. When I heard one doctor say to one patient “We’ll just reset the bone…” I stopped looking around and just stared at the ceiling.
They ask you lots of questions, well really just a couple questions, over and over again: What is your name? What is your date of birth? What are you here for today? I got really good at answering these.
In the pre-op area, lots of body parts get shaved and lots of needles get inserted. A couple doctors come by and introduce themselves, but really soon, you go for a ride to the big operating room. It does look just like those on TV with the big lights and lots of towels and instruments. They parked me right next to the operating table, again asked me the three questions, and then asked me to slide myself over onto the operating table. Once a doctor had me confirm that I was centered on the table, I remember nothing else, until it was time to wake up from my 3-4 hour procedure.
During my surgery, I was on a heart/lung bypass machine, which means a machine was doing the work of my lungs and my heart. I was also intubated, and while I have had procedures before for which I’d been intubated, I never remember them coming out. This time, that was the first thing I remembered. My first foggy memory is with my eyes closed, feeling a tube coming out of my throat, feeling my mouth and throat full of mucus and a man’s voice forcefully saying “Patrick breathe! Cough it out and breathe!” or something like that. I was waking up in the Cardiac Intensive Care Unit. I’d always said that if I woke up, after heart surgery, I win, and I remember thinking that pretty early in the process. I won.
Eventually I was able to breathe and open my eyes. There were two nurses overseeing me and my cardiologist stopped by to check on me as well. But then I looked at the wall where the daily calendar was. It showed “May 20.” Wait, what? I went under around 7:30 am on May 19 for a 3-4 hour procedure. Why does the calendar show May 20? Is this someone’s joke that I missed a whole day? And it’s light out, so it’s not even right after midnight or something like that. Here’s what happened:
Remember that my surgeon said repairing one of the valves was a near certainty and repairing the other was probably a 50/50 shot? He made good on his promise and went the repair route (instead of replacement) on both and sent me to the recovery area. But they keep you knocked out for a while, until they see that you’re doing ok. Turns out, that second valve didn’t want to be repaired, it wanted to be replaced. They said that it was bleeding a lot, so around 8 pm, I was sent back into the operating room for my third valve operation, to replace the aortic valve, which took until after 10 pm, and then back to the ICU for recovery. It was at that point that I think I’ve been told that I wasn’t giving good indications of being able to come off the breathing tube too quickly, so I was kept under until the morning. Leading to that wake up.
A Day in the ICU
I spent about a day in the ICU which was tolerable due to a heavy amount of painkilling drugs and keeping me pretty loopy. I’m guessing I took a lot of naps as I don’t remember a lot of it, other than fragments and pieces. The doctors and nurses were great, just chatted with me the whole time and I remember one embarrassing moment where in my head, I was at home with my daughter. One of the nurses asked me a question and I pictured it as my daughter asking, but I hadn’t quite heard it, so I asked “What’s that, baby?” Yeah, I called one of the ICU nurses “baby.” Fortunately I realized it pretty quickly, apologized and explained that I thought I was talking to my daughter. I’m sure the nurse has heard far worse thing from people coming off anethesia.
Let’s Continue the Recovery
On the second day, May 20th, around 6:30 pm when I got to my hospital room and out of the ICU, which I thought was pretty great. I had a room to myself as did everyone else on the cardiac recovery floor. I was attached to an external pacemaker, an EKG machine and a big collection unit for the chest drainage tubes. So I definitely wasn’t very mobile. The nurses change on twelve-hour shifts at 7 am and 7 pm. I had a new nurse (and nursing assistant) immediately after getting to my room. They coming to check vital signs around every 3-4 hours, which doesn’t lead to getting solid sleep, though the pain and discomfort of it all will also play a big part in that. Fortunately, pain medications are also a part of that frequent update as well.
Some Oozy and Gross Stuff
One of the first victims that I saw in the hospital was my own modesty. I was only wearing the hospital gown but for the number of times that doctors or nurses needed to check various body parts, eventually I just gave up on even trying to be private with privates. Just let them do and see whatever they need to. One of the first times with that was when the urinary catheter needed to come out, which is about as straightforward as you’d think. A nurse comes in and just gently pulls it out.
Then there was the next day when the Nurse Practitioner came in to remove the chest drainage tubes. They were being held in place with tape and a stitch, she said. The most painful part of that was when she peeled the tape from my skin. Pulling the chest tubes themselves out just felt weird, not really painful. However, before she did it, she did say that she was going to take off her jacket so as to not get fluid all over it. And when she was done, sure enough, her shirt had gotten a little wet from the chest blood/fluid. Yuck.
Going for walks are also important. The nurses liked to get me up as soon as I could and I think it was Saturday (post op day 2) when one nurse asked me if I could go for a walk in the hallway. I said I’d try. I was still attached to an external pacemaker and EKG, so she carried those as I took my steps. We got out into the hall and I took a couple steps when she reminded me, “However far you go, you gotta make it back, too, so only go halfway!” At that moment I started feeling really hot, my head was pounding, I was sweaty and dizzy. I figured let’s not push this and turn right around. I think I made it about 10 feet in my first walk.
The following day (Sunday, post op day 3) the nurse asked if I could try going for a walk again. I was feeling a lot better than the previous day, and I picked out a spot on the floor and made that round trip. It was about 50 feet! Hugely successful. Sunday was my last day that I took the heavy painkillers as I was feeling pretty good and decided to stop taking those and just stick with good ol’ Tylenol. Coming off the narcotics let me clear my head and remember more things. But it also meant sleeping less and sleeping worse.
Monday was when my pacemaker could come out. In my instance, the box was external and it just had four wires attached to my heart. So the nurse practitioner could just pull these out. Oh ok, no proble…wait. Did you say they’re attached to my heart? And you’re just going to pull them out? Yep, that’s exactly how it works. There’s a “weak stitch” holding the wire to the heart and just some light tension will release the wire and let its whole eight inches or so come out, with not a lot of pain, but definitely more than the chest tubes. It definitely wasn’t a pleasant experience. After that, I was required to stay in bed for at least a one-hour observation window because there is a “one in 10,000 chance” that tugging on the wires would damage my heart and they’d need to go back in…again. Fortunately that hour passed without incident and right at the end of it, a physical therapist arrived.
The physical therapist’s job was to give me an exercise program for home and to evaluate me in the hospital for my walking and stair climbing/descending ability. So she took me out in the hall, this time we walked the full hallway of about 100 feet. We also went up and down about 8 stairs and she declared me capable of taking walks around the floor on my own. No nurse’s assistance needed and I had my exercise program for when I get back home.
It was also around this time that I was allowed to take my first shower. Before this had been just cloth baths. But along with the visit to the shower meant removing the bandages from my chest and being in front of a mirror in the bathroom. I finally got to see my chest scar for the first time and it was definitely worse than I’d expected. It was redder, thicker and longer, and there were a number of other cuts all around it. Plus the additional incision sites where the chest tubes and pacemaker wires had been. The doctor didn’t use stitches or wire, but there’s some kind of glue that they actually use to hold it all together, and the glue is watertight. It’s ok to get the incision site wet in the shower, they said just make sure I don’t scrub at it. That really wasn’t a problem as at this point, anything making contact with the incision site hurt, a lot. Even water dripping over my shoulders and running down my chest hurt. So I sure wasn’t going to scrub it. This pain lasted about three days and now I can put soap directly on it, albeit gently, and let the shower wash it the site directly.
Finally on Tuesday, I got the official word, I get to go home! My surgeon visited around 9:30 am and said he’d just needed one last chest x-ray and I can go. They must have been pretty backed up in the radiology department as I finally got down there at 4 pm and was being wheeled out of the hospital at 5 pm for the ride home and a night’s sleep in my own bed! My sleep schedule was still a little messed up and I was still a bit sore at home, so the first night in my own bed was far, far better than any in the hospital. I think the last couple nights, I only got 3 hours sleep each because I was off the heavy medications and the bed just wasn’t comfortable. But my first night home, I think I slept four hours, one hour awake, one hour sleep, 3 hours awake, two hours asleep. But now I have been about to get that much closer to a solid 8 hours through the night with just a little bit of awake time.
I will say that I went into this underestimating the impact of the surgery on me. I’d been running upwards of five miles in a day and thought, why will I be so tired afterward to even walk 10 feet? I understood that they would literally open up my chest and perform an operation on my heart (twice), but I still underestimated it. So now I’m just sticking with the plans they give me which is currently to walk around for 10 minutes, 3-4 times a day. Yep, that’s all they want me to do. So that’s what I’ll do. Here’s to the recovery!
I may continue to update this post as I progress through the summer.
Update 5/30/2022: Every day is feeling better. I’m doing a lot of walking, usually around the neighborhood. It’s at a pretty slow pace, but I’m doing anywhere between 10 and 20 minutes up to three times a day. I think that’s making a lot of difference. I’m also using this spirometer device, which helps to re-expand my lungs.
I still have a little bit of a cough and the visiting nurse said the bottom part of my lungs aren’t fully awake yet, but it’s getting better. I think this was in part due to being on the respirator for about 24 hours and I need to be a little gentle with coughing.
Another thing that I’ve noticed is I’m more temperature sensitive now. I feel like an old man because I’ll need a sweater if it’s 60 degrees out. When I was in the hospital, I thought they were doing a bad job of temperature regulation in my room. I felt like there were 10 degree swings where I’d go from shivering to sweating in a short period of time. I’ve since learned that it wasn’t the hospital, it was me. I know this because I still do it at home, when I have full control of the temperature. I can see there are no wild swings, but the same thing is happening, especially at night, before bed.
When I came out of surgery, I’d gained 17 pounds of fluid weight. When I first checked in to the hospital, I was 170 pounds. My first weigh-in after surgery was 187. They put me on Lasix to help drain that out, and it’s worked. Fortunately, they told me that I’d likely even go 5-10 pounds below my normal weight before I start putting weight back on. My home scale is generally a couple pounds lower than others, but today’s weigh-in was just under 160, a full 10 pounds down from my pre-surgical weight. Time to do some eatin’!
Update 6/1/2022: Still going well, wound is healing well, there’s not a lot of pain if I stay on Tylenol and even without Tylenol, it’s a dull ache. Just had one min-scare yesterday as my right arm had pins-and-needles tingling for a few hours, and a little numbness. One of the post-surgical concerns is a brain clot, leading to a stroke, and one of the signs is numbness in an arm. Fortunately, I did not have any other signs of a stroke. I called the visiting nurse who came over, did some tests, reported back to my surgeon’s office. The physician’s assistant said that is a relatively common thing involving nerves in the shoulder. This also made sense considering I had a lot of upper-back/shoulder pain when I was in the hospital. For now, the tingling comes and goes. Off to do another walk!
Update 6/5/2022 Had my first post-op follow-ups with both my surgeon’s office and my cardiologist.Both said I’m progressing well. One very reassuring thing to hear was in the surgeon’s office (I met with a PA) who asked at one point, “Ok, so what are all the weird things you’re feeling?” and then went on to list some that were right on point. Things like decreased appetite, not being able to eat as well, slight nausea after eating, and the one that I brought up is frequent ocular migraines. I’ve always gotten these, but it might be months in between each one. If I ever got two in a week, that felt extremely frequent. Since I’ve been home, I get 3, 4, 5 a day. I was told that this is common and that the PA had just met with someone else who noted the same thing, or even frequent “floaters” which are just seeing things pass through your field of vision. Sometimes they might look like a little bug flying by, sometimes they flash like a meteor. I was also told to continue with the spirometer, even though my lungs sound clear and full, but I do still have the lingering cough. This cough is an indication that there is still a little more fluid deep in the bottom of my lungs. I put more effort into using it yesterday and after some coughing fits (sorry to be gross) I could feel more fluid come out and my breathing did feel better. My cardiologist did add a new medication because my heart rate, at rest, is a little high. That’s weird to see because I remember some surprise one night in the hospital when my heart rate was between 49 and 53. Now it’s 85-90, even while just sitting or when I first wake up in the morning. Lastly, when I got up today and lifted my shirt, it looked like a snowstorm. There’s a lot of skin flaking off now, not just from the incision sites, but from my whole torso. I’m guessing that’s due to a combination of all the tapes/adhesives that were on me for about a week and the alcohol that I’ve used to try to remove all the adhesive residue. My weight hasn’t come back yet, but I can see that as tough to do when I’m eating less and doing a lot of walking. I think my walking mileage per week might even be higher than my weekly running mileage before the surgery.
Four weeks post-op. I got discharged from home physical therapy visits and home nursing visits. The glue on my incision is almost completely gone. I don’t need daily naps, but I still get pretty tired and naps are occasional. I am still on the Tylenol, every 8 hours, and my chest reminds me when I forget to take it. I’ll notice an overall ache and soreness. I’m also impatient. Originally, the doctors said I’d be doing well after 3 months and back to normal by 6 months. I thought that to be pretty quick, but here I am 4 week out and want to feel all better. But at least I’m on pace to be cleared to drive again in 10 days. I’ll still have the “no lifting more than 10 pounds” restriction until the very end of July though. In general, things are going well, doing 2-3 miles of walking per day, back to work at my job (a home desk job) and able to sleep pretty well at night. Still have a little bit of a cough and I might need to see a dentist as there’s something in my mouth that feels like a nerve is exposed. It’s has felt the same since the hospital and I just always thought it’d get better. I also still have some surface numbness in my neck, around where one of the IVs was. My temperature swings are better, though I do still get cold faster (maybe it’s the blood thinner), which isn’t a bad thing in the summer.
Update 6/30/2022 Six weeks post-op today. Had my last follow up with the surgeon and got clearance to drive. Started cardiac rehab on Monday and I’ll be doing that twice a week for a couple months. In my first visit, they only had me walk on the treadmill. Hopefully that picks up soon. Today is my third day in a row that I’ve gone with no pain medicine. Sunday (June 26) was the last time I took any Tylenol. I’m able to sleep through the night and my chest mainly feels tight, not painful. Incision/scar is also looking good. And in the last update above, I mentioned something my mouth that felt like an exposed nerve. I figured that one out. A few days ago, something sharp was sticking out of my gum. I thought it was a scab or something. Turned out, it was a piece of a tooth that got broken off during surgery and embedded in my gum for 5+ weeks. So that’s weird.
Update 7/28/2022 Ten weeks post-op today. This is a milestone as the surgeon told me that I could not lift more than 10 pounds for 10 weeks, so now I’m in the clear. I’m sure I had a couple slips along the way and did lift more than ten pounds, but all restrictions are off. Just as an update, still have the numbness in my neck/jaw that I previously mentioned. I still have some occasional random pains around my sternum. I think the doctors said that is nerves regenerating. If I push on my sternum, it is a little sore, and I did notice that my sternum itself isn’t as smooth as it was before surgery. It’s slightly lumpy now, which is probably just the bone healing. The scar looks good, it’s actually a little shiny. I’ve been taking photos of it each week, to see the progress. I have a whole bunch of those kinds of photos, but I’ll share this one. It’s from shortly after I woke up in the cardiac intensive care unit. I kinda remember it but not super clearly. I do remember shortly after waking up and talking with the nurses for a little bit, asking one of them if she’d take a picture of me, just so I could later see how everything looked. Here it is:
Some of the fun stuff in there is the IV line up in my neck. That’s where I can still feel a little bit of a lump, which might be a scar. The black box to my side is the pacemaker. It had wires that were attached to my heart. A few days later, those wires were pulled out from my heart and through my skin. On my legs are just some compression thingies (medical term) to help with swelling. I think the splint-looking thing on my right hand is because I had so many IVs in, they were being held in place, but I don’t totally remember. And the pillow in my lap is my heart pillow. When you get open heart surgery, you get a heart pillow. Normally it’s shaped like a heart with the name of your hospital on it, but my hospital had run out that day. The purpose of the pillow is for when you need to cough or sneeze, you hold it tight against the incision and it makes the pain of coughing/sneezing a little bit less. Even to this day, 10 weeks later, sneezing is not pain-free and I do brace myself for it.
It’s been one year since Erika was taken from us. One year ago today.
This post is a long one, apologies for that.
It’s been a really long, tough year. I want to share with you many of the things that have happened. Since the moment Erika got sick last year and asked me to keep her family informed, I’ve grown closer to them. Gotten closer to her father Ray, her mother Marion, her sister Nancy, her brother- in – law Don and our niece, Violet. Erika’s family has treated me like family the entire time. They’ve been there for me every step of the way, each in their own way and we talk frequently. I’ve been welcomed to dinner in Marshfield with Ray and Marion, in the house where Erika grew up. The dinner repeated something that I’d done many times before, but always with Erika. It was quite different this time with just the three of us. I talk with Nancy on the phone, as she’s always there to talk or even just listen. A few weeks ago, she and Violet came to visit, so I could give them some of Erika’s belongings. I look forward to this fall and winter when Violet will be wearing Erika’s hoodies. Don is also a runner, so he and I will often swap stories about our training. There have been other things that we’ve done together, like figuring out Erika’s estate and creating the scholarship non-profit organization.
I spent about nine months of the year in therapy. I knew right away I’d need it and I tried a group session with others, but it wasn’t a fit for me. I found a really good local therapist and we met weekly, then biweekly, then every three weeks. Now I’m on an “as needed” basis. I felt like I was running out of things to talk about and I’ve learned how to handle some of the feelings. But the process continues, one where I’m constantly learning. I have some new friends who have also been through this type of loss and the resulting grief. I have learned from each of them. Some of the things you go through are the same for everyone and some are pretty different. I feel like I still don’t understand it all, and one thing that I learned is to not be surprised by what hits you. Just when you think you’re doing better, a trigger will lead to a really bad day. Fortunately, I’ve learned some of my triggers and while I can’t and don’t want to avoid them, I can often anticipate how they’ll make me feel. And for those who have never experienced this kind of loss, about all I can say is that it’s far worse than you can expect.
I had some local friends who offered advice early on about grief, and I often didn’t immediately believe what they were saying. I’ve shared some of it on Twitter and retweeted some of the good ones. Early on, I did think that grief was something that you, “get over.” I’ll never claim to fully understand it because it keeps surprising me (not in a good way) but I do at least now understand it’s something that you live with forever. Grief and loss change you. Another of the things that I learned is summed up in this Mitch Albom quote: “Death ends a life, not a relationship.”
Losing someone like Erika is nearly impossible to explain. To me, one thing is certain, we don’t just, “move on.” We carry it with us. This Nora McInerny TED Talk explains it so well.
More than a few times, including just a few weeks before she died, Erika said to me, “I really like our life right now.” I, too, really loved our life together. After I got divorced a number of years ago, my life was turned upside down and everything felt chaotic and jumbled. It took some time to get things settled again. Erika was a huge stabilizing force. She helped me when I was a mess, was patient in many ways and we were finally settling in. We bought our house in 2017, we got a dog, a couple cats and were just enjoying our life. We were both working from home during the day and then sitting together on the back porch or on the couch together at night. Just when things were finally all right, this tragedy happened. This just adds to the frustration, the anger, the unfairness.
As absolutely crushed as I have been for the last year, and as sad as I am for my loss, I realized that I’m actually even more sad, frustrated and angry for Erika’s loss. She was cheated out of so much. There’s no question that in her 46-plus years, she lived life to the fullest, but she still had so much more to do. She touched so many people, she helped change people and things for the better. There was so much promise on the horizon. I’m sad that she didn’t get to do that. I’m sad for all the people who didn’t really get to know her and all the things she wanted to do. Just as one small example: Erika wanted to go to law school to be a lawyer. In our discussions about that pretty major life change for her and for us, getting a law degree didn’t make financial sense. But that didn’t matter. She was tired of seeing injustices and wanted to jump in and use her skills to fix them, even if it was on a volunteer basis. Making money wasn’t the motivator for her. Doing what is right and helping others was. Her loss is our loss.
Back on March 20, we held a memorial service for Erika that was streamed online. We had more than 30 speakers that day who told stories of their memories with Erika. We were joined by people who knew Erika from high school, from college, from her days in Baltimore and Russia and of course, lots of Rhode Islanders. It was a nearly three-hour event and it was recorded, so if you missed it and would like to watch it or even just to rewatch parts of it, I’d be happy to share the video with you.
Maybe a month or two before Erika died, she and I were at home having dinner. One of the things that we talked about was the lessons we were learning about trying to become anti-racist. Among those lessons was to do what you can with the resources that you have to help those affected. We came up with the idea to create a college scholarship for Black Rhode Island students. We had no idea how to do it, but we agreed to figure it out. We thought we’d fund it for the first year and then start asking friends and family to contribute. She didn’t get to see it through, so a few months later, Erika’s family and I created the Erika Niedowski Memorial Scholarship with myself, Erika’s parents Ray and Marion Niedowski, Erika’s sister Nancy Welsh and Erika’s brother-in-law Don Welsh, as the committee. In August, we awarded scholarships to two amazing students, Felmara Greene and Lydia Nkrumah.
Next weekend, we’ll have a bicycle ride to honor and remember Erika. Most of you know that Erika was an avid cyclist. She loved being out on her bike and she also enjoyed riding with John Marion. Last August, Erika and John rode together either out to or nearly out to the Connecticut border as she wanted to get John’s opinions on law school. Since then, John decided he wanted to put together a ride to remember and honor her, and put together an organizing committee of Matt Netto, Liza Burkin and James Baumgartner. We’ll be “Out Riding” on the Blackstone Valley Bike Path on Saturday, Oct 9 starting from the Stop & Shop in Cumberland on Mendon Road at 9 am. Everyone is welcome to join us. No registration needed and it’s free.
I’ve always kept a very small circle of friends, but in the last year, that circle has grown. People have reached out to support me, and I am appreciative of each one. I won’t name them for fear of forgetting someone. But I am thankful to all the people who came over for fire pit nights or brought me food or periodically checked in with a, “How are you doing?” Also to the new friends who shared their experiences dealing with grief and tried to prepare me—I didn’t usually believe you, but you were always right. And I am grateful to the widow who I spoke to often as we were frequently going through and feeling the same things.
In some of my blog posts, I’ve shared some private things, like photos from inside our home. I want to do that again now. Some of these might seem really mundane, but I can also explain how each has meaning for me or helps me to still feel connected to Erika.
Let’s start with an obvious one. Erika’s bike:
That’s her bike, exactly where she left it after her last ride on September 19, 2020. Her cycling shoes and arm warmers are still right there, as if waiting for the next ride. It was the last day before she started feeling any symptoms.
These Lincoln photos:
I think Erika bought these at Frog and Toad in Providence, shortly after we moved in to the house. We jumped in with both feet, immersing ourselves in our new town. We also made frequent trips to Lincoln Woods and it was a site for our “Winter Walking” adventures. She really liked specific or even kitschy things. When she found something interesting or was happy with something she did, she had a slightly different smile and look on her face. It was a mish-mash look of self-contentment, pride and also a fulfillment of curiosity. She had that look the day she brought those home and hung them up. We were home. This was our home.
This bookshelf sits, maybe, ten feet away from me all day, right outside my working space at home. Everything in it is Erika’s. From the tourist knick knacks on top, to the entire set of Seinfeld episodes that she bought while living in Russia so she could watch some American TV. Some of her favorite books are in there, too. There’s Team of Rivals, a book on beekeeping and one that was the subject of an ongoing joke, The Children’s Blizzard. After she finished it, I asked how it was and what it was about. For some reason, she was at a loss for words, but just said it was sad. I asked, “Is it about children who die in a blizzard?” It was just one of those had-to-be-there things that hit her as being funny in how clearly it summed up the book.
Speaking of kitschy:
There’s a hip-swinging Elvis. She always had this around, connected to a string and a suction cup, often swinging from the bathroom mirror. I asked her about it when we first started dating as I saw it in her apartment’s bathroom. She said she got it on a trip to Vegas with her then-husband Chris, and I remember the little pang of jealousy I felt at that moment, to hear her talk about being with someone else. Every time I see it, I recall that conversation, and Elvis still hangs in the bathroom by the mirror.
Here’s another one that we laughed about quite often.
This is her stuffed animal collection. Or at least part of it. It used to be a larger collection, but some are in other parts of the house. One, Erika’s absolute favorite, a brown bear named Fred, found a new home with Violet, to be loved every day and night. This menagerie wasn’t always displayed on top of the dresser though. Oh no. They were in the bed with us. All of them. And they took up space to the point where sometimes we’d have conversations about whether I could borrow a little space from the avocado. (His name is Guac). There’s also a sloth, a couple of turtles, a moose, her elephant from when she was little named Friendy. And then there’s the dog on the far right— “Baby Jaro,” —that looks a little like our dog, Jaro. That was the birthday gift that I gave to Erika on her first day in the hospital. Her birthday was just two days after she died, so we had made plans to celebrate and I’d already gotten her this as a birthday gift. I was on the fence about bringing it into the hospital, because I kept telling myself we’d celebrate and I’d give it to her when she came home. I’m really glad I didn’t wait. She wasn’t feeling too well, but when she saw Baby Jaro, she got a really big smile on her face and kept it right by her side. Every few minutes, she’d pet it and just whisper, “Baby Jaro.” It made her happy during a really terrible time. I’m glad I decided to bring it to her.
The shower caddy and supplies.
This is another one that might seem pretty mundane. It’s a few bottles of shampoo. But to me, it’s been so much more. Like her bicycle, sitting right where she left it, these are also hers, right where she left them. When going through this experience, this grief, it really can be the little things that make your person seem still with you in some way. This was one of them for me. I’d look at them every day when I’d get in the shower—her special shampoo for curly hair, her charcoal face wash, which we called “face dirt”—and could still feel like she was here.
Maybe this one is a little gross, but I don’t care. What is it? Well, many of you know that Erika loved cheese. All kinds of cheese. So I’d often buy bags of mozzarella cheese sticks for her snacks, which she’d sometimes eat while reading in bed. Sometimes when I’d open the drawer in a night table and see one of these wrappers, it’d lead to a playful argument. I’d give her a scolding look, like a parent does to a child. She’d start laughing at the ridiculous look on my face and the silliness of the fact that she put the wrapper in the drawer instead of the trash. In the last year, there have been many sad, lonely nights, when I’d go through something of Erika’s to remember her, whether it was her closet or her drawer of T-shirts. One sad evening, I opened the night table drawer to look at things Erika had put in there. And there was a cheese stick wrapper. My mood broke and I just burst out laughing. It felt like it was one last joke that she’d left behind for me, to make me happy. Anyway, it’s still there. I didn’t put it in the trash either.
These are some of the things in our home that have helped me to remember her every day for the last year. I see them and I remember these stories and many more. Virtually everything in our home has a story attached. I remember conversations that we had around each of these things and I can vividly recall her face as we talked about them. The memories attached to those things in the house also bring me some sadness. The sadness of knowing they were hers and she will not get to see or use any of them again. I recently realized that another reason I hadn’t moved any of those things was because I subconsciously thought that she still needs them. That she will be back to use them, so I can’t do anything with them. Or that when she does come back, she’ll ask, “Why did you move or get rid of my things?” As silly as that sounds, I believe that’s what my subconscious was thinking, because it doesn’t make sense. Once I understood that, I also realized that it’s time for me to move her things. Other than more-than-year-old cheese wrappers, I won’t be throwing them away. I’ll just be putting them away. I think it’ll be time for me, and it will be ok.
I’ve shared a lot of my thoughts about my life with Erika and my loss of Erika. I’ve told stories in the last year but going forward, I don’t know if I’ll write any more. I certainly will if I feel it, but I don’t know that I will. If anyone ever wants to hear stories, I’m more than happy to tell them. Just let me know.
Erika made so many of us better for having known her and wanting to be like her. In closing, thank you for being here, thank you for reading this and your support, thank you for remembering the great person that was Erika Niedowski.
Many people have said, “A person only dies when they are forgotten.” If that is true, Erika will live on forever.
In just another four days, it will be eight months since I last saw Erika. The last time I spoke to her. The last time I heard her voice. The last time I saw her smile. I’ve said this before, but I’ll say it again. I’m really happy that on my last visit to see Erika, I brought her an early birthday present, which was a stuffed animal replica of our dog, Jaro. In spite of how bad she was feeling at the time, it did make her smile. Also, in spite of how terrible she felt and being in and out of sleep when I had to leave the visit, her final words to me were “I love you” which I also said back to her. To me, there are no better final words that a couple could say to each other. And I do mean literally those were the last words we heard from each other.
Since then, I’ve been going to counseling and learning about grief. Let’s just say in the beginning, I knew nothing about it. I’m still learning more about grief as I go and learning a lot more about myself. I’ve been fortunate in that I’ve been able to meet and talk with other widows and widowers, and share stories of our experiences. It really helps me to hear the similarities. I have one such friend where every time one of us messages with something like “I’ve been feeling like this lately”, nearly 100% of the time, the other says “Me too!” But I also remember very on in the process, one person who has experienced this kind of loss said to me, “Your life has changed forever. You a different person now. You’ll live with this for the rest of your life.” Honestly, I thought they were just being dramatic or trying to make me feel better in the moment. I thought nahh, this will be a few months and I won’t feel the same way anymore. Which has also led me to one understanding of grief. (Again, I’m not claiming to know all there is, just that I’m learning.) It’s that everyone has experienced grief in some way. Everyone has lost a person that is important to them. Everyone has lost a pet, or a grandparent, or a distant cousin, or maybe even a celebrity that meant something to them. And they grieved, they were sad for a period of time, but then we “get over it.” We “feel better” and we’re “doing ok now.” My realization is that there are different levels of grief. This isn’t to minimize those but I do think that when someone loses a child or a spouse/life partner, it’s stronger, it’s deeper, it’s life changing.
There are good days and bad days. I’ve referred to them as waves. You can feel the tide go up and and down. Over time, the amplitude of the waves is less, and the bad days are less frequent, but they do still happen. I might go a week or two of all good days and I start to think that I’m doing ok. Or at least that’s how I used to think, but then I’d have a bad or sad day out of the blue, and realize that this is with me. This isn’t leaving me, and I’m not asking for it to leave me. It’s just the realization that this is a part of me, including the occasional down day and the occasional really down day.
It’s also led me to think about all the things I miss about Erika. Every day, I process memories in my head, replaying them over and over. Sometimes it’s even from before our first date, like the day I first saw her whisk into the Statehouse press conference. Or the coy, nervous smile she gave me while driving home from our first date. Or seeing her on her bicycle, riding past my office window, waving to me even when she couldn’t see inside. Or seeing her on the ice, playing hockey. Or our Friday nights, sitting in either her apartment kitchen or our house kitchen, working on a bottle of wine together. Unfortunately, the final days often seep into my head and I hate that. I hate having those memories of her, which is a big reason I keep replaying the older, happy memories. To see her happy, healthy, enjoying life. Doing things she should still be doing today. There are so many days like today, a rainy Saturday afternoon when I don’t have too much to do and I meander around the house a little bit, missing her. Knowing she would be taking her mid-afternoon nap. I miss the comfort of us together.
It’s one of those things you don’t really know the depth of what you have until it’s gone. I always knew I could fully trust her, and I always knew that we were a true partnership together. A great couple. It’s when it’s gone that you miss it so much. I think what also makes it hard is that it was ripped away so quickly. I just miss everything about her.
Last night, I had a realization. I’ll explain. One that hit me like bricks.
My daughter is a teen and from what I hear, a pretty typical teen. She loves to stay in her room and chat with friends on her phone. But I also like spending time with her, so I try to find reasons for her to do things with me. One of those things was family game night. I’d periodically claim “Tonight is game night!” and let her pick out a game. We had a few that we liked to play including Balderdash and Exploding Kittens. Even better, Erika would often join in too. Here’s one night with Exploding Kittens:
It was often my responsibility to read the rules and explain them to everyone else. But, on this night, I might have cheated with that a little bit. When I was reading the rules, I noticed that there was the “Cone of Shame” clause. It says that if anyone loses track of whose turn it is and asks whose turn it is, they must wear the Cone of Shame that comes with the game. Well, I wasn’t totally unfair, I offered to let McKenna and Erika read the rules for themselves, but they both declined. I might have umm, forgotten to explain this rule. So after one of many distracting side conversations Erika wanted to get back to the game, she asked whose turn it is and excitedly, I invoked the Cone of Shame rule and pointed it out in the rulebook.
Balderdash is another fun game where someone reads a pretty obscure word, sentence or phrase on a card and everyone else writes down what they think it means. Then everyone votes on the one they think is correct. Well, we had a lot of fun with the game and lots of silly answers, so we created our own “Balderdash Hall of Fame”, keeping those answers and posting it on our refrigerator:
Last night, I was walking past the refrigerator and looking at the Hall of Fame as I sometimes do and reading the answers. One of the answer cards on there is from my daughter, two others are from our niece and the last one, the TFOA was written by Erika. That’s when it hit me and I had the realization. I was requiring these family game nights so I could create memories with my daughter. Family time that I could remember forever long after she’s grown up and moved away.
But what it also did was create fun and happy memories with Erika that I will remember forever.
During Erika’s celebration, so many people had so many great things to say about her. It was really incredible to hear every speaker talk about the Erika that they knew. When it came to my turn, I didn’t want to reiterate any part of that, so I talked briefly about the Erika I knew.
I recently watched the movie Good Will Hunting with Robin Williams and Matt Damon. I watched it because I knew of clips and that I thought sounded similar to my experience with Erika and I wanted to know the full context. Yes, it was just a few weeks ago that I watched the 1997 movie for the first time in its entirety. I learned that those clips were spot on to my experience, so I included them. I only used these first two during her celebration, but I talked about the third, and I’m including it here. Here’s the first one:
I never believed in soulmates or that there was one person for me. I never believed two people could really mesh together so closely. Then I met Erika. Then I got to know Erika. Then I learned, just how close we were. I’m not someone who truly trusts people very easily, I’m not someone that opens up to people. I fully trusted Erika. I was totally vulnerable with her. There were so many things we’d talk about and be able to say “You’re the only person in the world that I can say this to.” She was my angel put here for me, because she did rescue me. One half-joking phrase that we’d sometimes use for each other was “You’re a little bit of a disaster right now, aren’t you?” and when she and I met, I was definitely a bit of a disaster. She patiently helped me through that and showed that I could trust her through anything and was always there for me.
I think people can relate to this one:
I really love this clip because it is about the imperfections. There were times when Erika would be in some mood and she’d ask me “Am I being annoying right now?” and I’d say no. She’d respond, “Well, I’m annoying to myself right now.” and then look at me like she wasn’t convinced with my answer. I knew at that moment, I’d have to say something, so I told her “No, you’re not annoying, these are your ‘cute quirks.'” Because they weren’t annoying to me. Annoying is way too strong of a word. They really were little quirks about her, and those quirks were what made her Erika and among the many things I loved about her.
We also had this hanging in our house and something we’d remind each other:
This last clip is one that I only described. So if you haven’t seen the movie, here it is. Just a warning, they use some bad language in here.
This clip sets the context for our first date.
In late 2013, I was coming out of a divorce from a few months prior, so I had weekly appointments with a therapist. Those were helpful. Among the topics during my therapy appointments was dating. I’d been dating one person (not Erika) and while my therapist thought it was too soon, she was ok with it as long as it didn’t seem unhealthy for me. Eventually I realized the relationship wasn’t good for me, so it ended. I went to my weekly appointment and told my therapist. She was relieved. Now I could simply focus on me and getting myself mentally healthy again.
Fast forward one week, to my next appointment. I told my therapist there’s someone else. Someone I want to go on a date with. My therapist let out an exasperated “Nooooooooo!!!” and I just said “I know, I understand and I even agree, but trust me, she’s different. She is the one. This one is special.” And of course, this was Erika.
I finally asked Erika on a date with just the two of us. We were headed to a now-closed steak place on Federal Hill in Providence. The date would be on November 12, 2013, a Tuesday. But then fate intervened. The day before our first date, I was working in Boston. I’d just started at that company about three months prior. It was Veterans Day, and not many were in the office. Erika just so happened to have a job interview in Boston that day as well. She and I were text chatting through the morning. After her interview, she went to lunch with her mother, who also worked in Boston. I noticed that the Bruins had a 1 pm game that day, so I messaged Erika, “The Bruins are playing at 1.” She immediately replied “Let’s go!” As soon as I figured out she was serious, I quickly and quietly left the office, got on the subway over to the Garden, bought a couple tickets and met her at the Bobby Orr statue. We watched the entire game without either one of us ever leaving our seats. The best first date and one we’d refer to often. Here’s one of the tickets from that day:
After the game, I had to go back to work. I took the subway, quietly and quickly went back to my desk, as if nothing had happened. But, being Veterans Day, not many were around and no one had noticed that I was gone. I don’t know what I would have done if someone had noticed, but I’d like to think that I would have said “I had to see about a girl.” Because I just knew. She was the one. She was special.
Erika’s memorial celebration was, as her father Ray put it, “a time for remembering and for healing.” It was incredible to have so many people join us both as speakers and telling of their experiences and memories of Erika but also so many people who attended. So I wanted to say thank you.
Here are six tweets that I read that summarize the day extremely well:
I think it was in 2014 that I heard an advertisement on the radio by the Pawtucket Red Sox for Valentine’s Day. Have their mascot, Paws, deliver flowers to your Valentine. I thought this would be fun and Erika would like it. Well, she loved it! So I did it each year.
Here is Paws visiting Erika in the Associated Press newsroom in Providence. Erika said she was speechless the whole time.
I don’t have a picture of Paws from 2015 but here’s a Winter Walking picture in Lincoln Woods Park.
In 2016, Paws came to visit at our apartment in Providence! One little thing that Erika really loved about this visit is that Paws petted her cat Yukos. She always remembered that.
In 2017, there was some bad timing. Paws came to our house again, but Erika had just run out to the store or something. Paws always comes with a helper as well.
We made up for it by getting a meat and cheese plate later that night.
In 2018, I sent Paws to Erika’s office at the Acadia Center. Paws spent some time wandering around “The Arcade” in Providence, which is actually across the street from her office, but he found her eventually.
Paws had better luck finding her office in 2019.
In 2020, Paws got to visit our house in Lincoln, as Erika was working from home then.
The team was moving from Pawtucket to Worcester, so we knew 2020 would be the last time we’d get to see Paws bringing flowers to Erika. We didn’t know it’d be the last time I’d get to do anything with her on Valentines Day. Thanks for all the happiness and great memories, Paws!
This weekend, I finally took a little bit of time to go down to our basement and look through some of Erika’s things she had packed away. Unfortunately, it’s only about two small boxes in large part due to a terrible landlord she had in Providence. While living on North Main Street, she had put boxes of her possessions in the building’s basement. This was many of the things she had obtained while overseas, mainly while in Russia, but also from her years at Georgetown and while living in Baltimore and DC. One day, the landlord decided to clean out the basement and without warning, threw away everything in there, and most of Erika’s history was gone. She was always angry about that happening and unfortunately, there really isn’t too much left from that time.
But in my search, I found this pink hat that she wore:
But I have also since determined that she wore it better:
I found some really old looking thumbdrives from when she covered the 2008 Presidential campaign as a reporter, as well as her Blackberry. The Blackberry seems to have a camera on it, so hopefully I can power that up and see if there are any photos on there.
But best of all, I found her stash of copies of one very special Baltimore Sun article. Erika was a finalist in 2004 for the Pulitzer Prize in Explanatory Writing. She wrote a two-part article about Josie King, an 18-month old girl who died in 2001 at Johns Hopkins University hospital due to medical errors. The hospital worked with Josie’s family and her mother, Sorrel, who then created the Josie King Foundation in Maryland.
Here is the layout of her story in the Baltimore Sun, dated December 14-15, 2003.