Kevin's Journal

today is my 1 year anniversary of getting a ring around my mitral valve (I don't remember that verse in the kid's song)!! I went in not too ill, so my recovery was very smooth. By the end of the cardiac rehab (Tufts Melrose), I felt like I was getting in better shape than I had been even before the heart problems. Even so, my recovery was still in progress.  At 7 months I was still always ready for a nap. but by 9 months that has passed, and I'm not napping very much. I feel pretty much back to normal.

The one thing still lingering - my scar can get irritated. Without a pad on the seat belt, it would get annoyed after an hour driving.

I still can't believe I went through that surgery,

6 weeks post-op

I continue to be grateful how smoothly my recovery has gone. My walks now include some of the minor hills in my neighborhood. I can get up and down stairs easily. The MAZE procedure seems to be having an effect, I haven't noticed afib or an elevated heart rate for a week or more. It is still uncomfortable to sleep on my side.

Surprises:

- sneezing or coughing (which I am not doing much of) still hurts. Not as much as it did, but I thought maybe 6 weeks would be a magic number

- my chest muscles are sore. I guess this is because I am doing things, but they were sore less often back on week 2

- getting body hair shaved is a recovery all its own. I have a lot of chest hair. At first, my shirt would catch on the regrowing hairs. Now that I am driving, the seat belt aggravates select patches. I think I am almost done with this as it gets longer, but it wasn't something I expected to be a noticeable issue.

today is 4 weeks post-op
I'm recovering very well. Up and around and able to do things around the house. showering, dressing, making lunch. Cooking dinner involves things I can't do, like moving big pots around. Picking stuff up off the floor is a challenge, it makes my chest feel stretched (so I mostly don't do that). I can walk a mile on the flat, but going up hills slows me down. One flight of stairs is OK, but 2 flights is a bit much. I'm not desperate for a mid-afternoon nap every day, just every other one.

My electrical system is still wonky. I'm going in to afib regularly, sometimes for a few minutes, sometimes a few hours. I just had a monitor from my cardiologist for 48 hours, we will see what that shows and what it might mean. He did say the MAZE procedure can take 2 or 3 months to settle in and have full effect. At this point the elevated heart rate from the afib is getting in the way of trying to recover my stamina

3 weeks post-op

Things are going very well. I am very grateful to have had such a recovery. All the holes they poked in me are healing as they should. My lungs are clear. I am able to walk on the flat a fair ways (I did a mile one day, but I don't always feel up to that). I still have to be careful when I first stand up to wait 30 seconds before heading off. 

I am not quite over my cold, and so not quite over the coughing. It is very minimal now, still enough to get in the way of good use of the spirometer.

My revised set of heart drugs are keeping my heart rate "low enough" but I am still having bouts of afib. It is hard to do the physical work (like walking on anything but flat) when the afib means my heart rate will climb faster than normal. 

Minor annoyance: all the hair they shaved on my chest is coming back. It is still short enough to get caught on my shirt and pull. Sometimes if one is caught just wrong it is like getting poked with a pin. 

Day: 13

Was it really two weeks ago when this happened? Everything seems to be healing up the way it is supposed to. The difference since I came home is just mind boggling.

Talked to my cardiologist again today. We are adjusting the meds to try to keep my rate in a reasonable range. Today again I went up in the hundreds and it took some hours to come back. I learned that the MAZE procedure, which disrupts the excess electrical signals by creating scar tissue, can take 3 months to really take effect because the scars have to fully form.

I think I will stop the daily posts, and only post if something different happens. I did make it to the end of the block and back today (6 houses)!

Day: 12

Got a decent amount of sleep last night, so today started out good. Still coughing from the cold, but it is clearly waning. 

I went almost to the end of the block (5 houses) twice today! I'm going to have to start traveling to someplace for the walk, after that it is all hills. (actually, I'll work up to twice to the end of the block before going elsewhere)

Day: 11

Cold is diminishing. Made it 5 houses today.

Had another AFib event this morning, heart rate bouncing between 120 - 140. Fortunately, I had discussed this possibility with the surgeon's PA.

First, let say that for me, AFib does not feel awful, no shortness of breath, no dizziness. I feel like my heart is knocking around in my chest. Sometimes when I get that feeling, I check my heart rate and it is 90 and nothing is going on (my best guess is this has to do with gas in the digestive system). Other times are like today.

So I talked to the on-call at my regular cardiologist. I am switching from all Metoprolol (75) that the surgeon had me on, back to what I was doing before the surgery (when I had AFib 100% of the time and we had to keep the rate down). That is a mixture of Diltiazem and Metoprolol.

I am crossing my fingers that the MAZE procedure they did while fixing the valve will eventually have more effect. Time will tell. Where did I put that barrel of patience? I think it is running low...

Day : 11

Took a walk this morning: 4 houses! Getting out of chairs and beds has gotten a little bit easier. I'm getting stronger and my technique is getting better. 

What I thought was allergies is actually a cold. some extra coughing, a bit of a sore throat. I'm doing all my little cold "remedies" and applying a heaping of patience. It will pass, they always do.

I have learned the obvious: if you are laying flat on your back, clutching the cough pillow doesn't help. There needs to be some way for the ribs to expand, so I need to roll to one side.

Day: 10

Took anti- allergy meds yesterday, which may have resulted in my best sleep since getting home. Feeling pretty capable today. Took a walk outside: 3 houses down and back!

Day: 9

Had an AFib event this morning, heart rate somewhere in the mid hundreds. extra beta blockers seem to have that sorted. It certainly consumed a lot of my attention today.

My allergies are causing a lot of post nasal drip, which can trigger a cough reflex. Mostly I'm catching  it with some throat clearing. I am very thankful for the people on here who explained how to use the pillow! The hospital never said word one about it, it was just there.

The allergies also give me a bit of a sinus headache, which puts me in a fog. So not the best day for forward progress on all those little tasks the PT keeps assigning...but not a bad day. 

Day: 8

is it really one whole week post surgery? it feels like yesterday, and like a month.

Appetite is back, my energy is decent. I have to keep changing seats, my lower back complains after a bit. Trying to keep up with the list of little todos of recovery: hit the spirometer, walk a little, do some PT, spirometer, spend some time with my legs elevated, spirometer, walk a little.....

I am doing well, and I am very grateful I am doing well. It is clear from the posts on this site that we go through much in common, but there are also very different challenges and hurdles for different people. I hold you all in the light, that your journey's may be as straight and quick as they can be.

Day: 7

The big things are going well, the small things are annoying.

I had the most bizarre experience last night of laying in bed, feeling very comfortable, and just not going to sleep for about 3 or 4 hours. I did sleep after that, and am in a good place today. 

I can get up and all of my holes and bruises and scars seem to be improving bit by bit. Food is interesting, and I'm getting my digestive tract back in proper order. I was sufficiently clear headed for the morning that I was able to tilt at some bureaucratic windmills (nothing major).

I have minor edema in my feet, and while I can get comfortable on the couch with them elevated, getting off the couch again is a major feat. everything is just too low. My tailbone was complaining when I had my feet up in a seated position, and the PT assured me it wasn't high enough to do any good anyway.

My middle back goes in and out of soreness. I am in the process of trying different combinations of chairs and pillows to find what works.

The weather is beautiful, the flowers are blooming.

Day: 6

my appetite is starting to come back, I'm sure the better food helps. I'm back on my pro-biotics and that seems to be addressing the diarrhea. Yesterday my digestive system was making gurgles suitable for a horror film about eels!

The second day of showering was easier, although it is still a two person job. We should have skipped the tub when we remodeled the bathroom a few years ago and done just a shower. I'm still getting used to all the holes, bruises and scars on my body.

I had a bit of a freak out about a hematoma on my thigh (from one of the many things they stick into you). I didn't remember it, or at least not that way. But my wife did. Fortunately, this was day 1 of the Visiting Nurse. Who showed up about an hour later and reassured me that however hideous it all was, it all was ok.

I have a strong psychological reaction, and can drop my blood pressure to nothing just by thinking about things (which is why I can't give blood, the thought of getting stabbed makes my BP too low for them to allow). After all this, I don't know if that might be different.

On a positive note, a neighbor came by with fresh baked blueberry muffins, and a friend brought over her frittata which I am looking forward to for dinner. (now back for a nap on the couch)

About coming home:

I came home on Saturday, day 4 post surgery. Coming home is complicated.

It was a relief to get out of the hospital, with the extra blood tests and 4am blood pressure readings and the confusing changing schedules and having to ask for help with things that didn't seem to need help anymore. And random people coming and telling you things that you weren't sure if you needed to remember or not.

It was stressful leaving the hospital, where there are experts to ask about anything that is worrying you or doesn't make sense. And there aren't a lot of distractions to just trying to take care of yourself.


And then the actual process of the last day is just tiring. Was the last clearance the PT seeing me do a flight of stairs, or one more set of blood tests? I was too keyed up to relax at all, afraid I would miss one of these sign off events and then get stuck for another night. If I wanted a nap, I wasn't getting one.

At home, where my wonderful wife had set up things, there were still odds and ends to adjust (there still are 2 days later). So everything took longer getting in to bed at the end when I was wore out was more of a process than I'd like. But it happened. 

And it was so nice to be home.

Day: four
Evening
I am home! After the usual bumpy ride on the hospital bureaucracy to get everything signed and signed off and retested and approved the retest:I’m home!!



The simple swaying of the car on the ride home was a surprising challenge that I didn’t expect. But relatively minor all in all. Well, we have many things set up, there are still things to figure out what works, and where it should be, and then what room.
We’ll get there, just have to keep remembering it’s one day at a time. 

Day: four
Early morning.
Woke up much more with it today. Got bigger chunks of sleep like three or four hours instead of two. I can still hear my digestive system gurgling away but it’s been quiet overnight.
I have to snag the PT and get signed off on stairs so I can go home.

A bit nervous about going home psychologically physically everything seems OK but now I won’t have experts to ask what’s happening. The hospital experience has been kind of strange. It does feel like everyone is 25 but everyone here has been very positive and upbeat, even in preop and elsewhere , I might post later if I get home.

Day: 3

 slept better last night, despite diarrhea every 3 hours. But that is my system’s specialty: going too fast. 

still little interest in food, but eating hasn’t felt disgusting. I think I got ten grapes in me. Have done a lap of the ward three different times.  They are talking of sending me home, but that won’t happen until I can do a flight of stairs 



i feel crummy in ways I hadn’t expected. But today does feel better than yesterday, by a little tiny bit. I take comfort in all of your stories of your slow but steady as advances

Day: two
Slept very badly last night sort of two hours stretches even though it was from 6 PM to 5 AM.
Had the catheter wires and drainage tubes removed this morning, which makes it a lot easier to get around.
No interest in food. It just doesn’t seem appealing. I’m not really nauseous.
Meetings with PT and OT. I don’t know how much of any of that. I’m going to remember, but I think they will repeat all later.

Day: one everything went fine a little long in the anesthesia, but I tend to that anyway I couldn’t post earlier because my wife accidentally took my phone home. Surgeon says I’m doing good. I am moving to out of the ICU today. I’m still learning to use the spirometer. And well, my chest is sore. I only really hurts when I try to do things like move to a chair.

Day: -1

Hard to picture that 24 hours from now I will be in an alternate reality, in the OR. Did a little last minute grocery shopping, so we don't have to hit the store again for the big stuff too soon.

What I am planning to take:

phone, charger, long cord, bluetooth headphones, corded earbuds(in case bluetooth is a mess with all the machines), note book (for doodling and notes), pen

eye mask, some ear plugs, electric razor, toothbrush, extra pair socks, extra underwear, case for glasses

I'll be wearing: sweat pants (expandable enough to handle being full of fluid on the way home), front opening shirt, thin front opening fleece, crocs (easy on/off)

phone has music, podcasts, audio book

I expect it will be hard to get much sleep tonight, but then I'll be out for much of the day tomorrow.

Day: -2

Still in denial ... I mean staying in the present moment. Baked some bread today, continue to not be freaking out.

The Hibiclens (anti-bacterial skin wash) is weird stuff. It looks like light machine oil, or maybe Campari. Feels very odd to use as soap. And it is so light and runny, it keeps flying around. I have managed to use most of it, and not just decorate the walls. 

Someone suggested I get some silicone scar tape, supposed to keep the scar from getting too pronounced. Has anyone used that?

Day: -3

Woke up borrowing trouble. Why did I agree to get in this car crash? Oh, that's right, it's better than not. Once I got up and moving that all faded. My pseudo-aneurysm (which has been fixed) from the cardiac catheterization is gradually bugging me less. It's on my right wrist, so doing things with that arm "felt" wrong for much of the last month. But now more minor, which is a good thing since I'm trying to get some things done this weekend. 

I realized I need to check with the hospital on how to get in at 5:30am. I don't think the parking garage connects to the ER directly (the ER was what I was told was the way in at that hour). Well, that's what Monday is for. Relatively small thing to worry about, but better that than the big stuff.

Day: -4

Last day of work. Spent some time dealing with the bureaucracy of short term disability leave - I'll keep my fingers crossed that is sorted out. 

I'm going to spend this weekend doing some things that won't be possible for the next 6 weeks - some gardening, get some plants on the deck. Oh, and cut my hair extra short so it is one less thing to deal with.

Still in a good mood, avoiding borrowing trouble about Tuesday.

Day: -5

Surgery scheduled for next Tuesday. I am finding myself much more calm about this than I was a month or two ago. I think having everything set and in motion, there aren't decisions to fret over. Still somewhat incomprehensible to be choosing to go for a lot of hurt, even if it makes rational sense. I have very minor symptoms, but an enlarging heart. 

Surgeon says I have a long torso, so he will be able to cut only the bottom 2/3 of the sternum, not the whole thing. So that's a plus. In addition to the mitral repair, they will also be doing a MAZE, so that adds 20 or 30 minutes. I'm not much worried about what is going on when I will be under, it is the before and after. 

Had a good pre-op chat with the Physicians Assistant yesterday, all my questions answered, at least as best they can be. Off to do the anti-bacterial nose swab, which I have to do twice a day from now on.

I've seen several people strongly recommend a recliner at home, and it makes sense - I'll just have to find room for it. Any people not using recliners? how is that going?

Had a call with Tufts Medical Center today, setting the dates for the surgery as well as the pre-op. They have no one prepared to talk about recovery, saying the physician's asst will cover that in pre-op. Which I doubt. And that is less than a week before the surgery, so leaves little time to go buy anything useful. 

Will I need a larger size of pants just to get home?