Selma's Heart Valve Journal

One year, one word: gratitude.

For the past few days, for some reason I've been thinking about my surgery a lot and I popped back over here to read some recent journal entries. That prompted me to go back and read my own and I realized that a year ago today, I wrote my first words on HVJ. It's been quite a year!

Today, I watched happily as Brenda and Sophie found one another. Sophie's a week out and Brenda is having her surgery tomorrow; both at Mt. Sinai (I was there, too). It reminded me how wonderful it was to have had Nancy and Mitch and Bob and Val and Cindy (may she rest in peace) and Kate and Paul and Linda and Karen and Regina and so many others walking the walk along side me. In Bob's case, literally!! We walked the halls of 7 West together. What a wonderful community this is.

At one point in my journal, I told the folks who'd gone before how great it was for those of us in the waiting room to hear their success stories. So I'm reporting in, a year later to tell you that I feel GREAT! :-)

Selma

It's ticking a little faster than before and I'm having some PVCs, but most of the time it's hard to believe that 9 months ago, I was shuffling around the seventh floor of Mt. Sinai Hospital with various tubes and wires hanging off of me.

The incision has healed well except for about 2 inches that look like there's a little worm under the skin, otherwise known as a hypertrophic scar.

There really *is* a good life on the other side of this surgery and it's amazing how fast the memories of the discomfort recede. Good luck to everybody in the waiting room.

At nearly 3 months after surgery, I feel like I'm kind of late to the party as far as cardiac rehab goes but my cardiologist put in the referral, and today was my first day. It's a hospital based, monitored exercise program and I think it's going to be good for me .... it feels like a safe way to try to get myself in shape. At 61, I'm probably the youngest person in the room which is kind of funny since I feel like I'm one of the older members here on HVJ. In any event, I'm going to do the 3 times a week and see how it goes.

Well, 2 months ago today I was off in la-la land, splayed open on a table with a number of people messing about in my heart. Today is my birthday, and I give thanks to Dr. David Adams and his team for doing their best to insure there will be lots more birthdays ahead.

Love to all of you who are in various stages of the process ("process" doesn't begin to cover it -- more like "freight train") of getting your heart fixed.

Selma

Once again, my fellow Spring of 2012 surgery graduates are sending me concerned messages, wondering if I fell off the earth. Clearly, it is time for an update. Dual valve surgery (mitral and tricuspid) was May 11 and I was released from Mt. Sinai on May 18. I finally got back to New York for my post-op appointment with Dr. Adams’ team last Wednesday. The headline is, everything looks great and healing is proceeding well.

The first person I saw was a Nurse Practitioner, whose first question was, “How much are you walking?” Not, “How are you feeling,” or “How’s your pain,” but “How much are you walking.” Much as I wanted to lie and tell her, “Oh, about an hour a day, uphill” I didn’t. I explained I really couldn’t do much walking, save for around the house, until I was cleared to drive, since I have to drive to a place I can walk safely. My hill is much too steep for me at this point. They told me I could drive and, man, what a feeling of liberation. There are beautiful, relatively flat walking places a short drive from where I live, and ever since I was cleared, I’ve been trying to get in a decent walk or slow swim daily.

They next did an EKG, and when she said “Normal sinus rhythm,” I felt like crying. First time EVER I heard those words. They finished up with a chest xray and I figure since I haven’t heard anything to the contrary, that must be okay, too.

My incision is still sore, which is to be expected, but I’m off the pain meds with the exception of Advil and that’s not even for the surgery – I have a lousy lower back disc which has been acting up.

The staff had copies of my surgery report, discharge report, and hospital echo, which were interesting reading. I was on bypass for 100 minutes, which I guess is pretty average for the “garden variety” repairs I had done. They even had before and after pictures (seriously weird to see the inside of your heart looking like some kind of mutated bivalve sea creature).

I asked about the large lump above the incision and learned that while the skin incision is about 4” long, they somehow get under there and saw another 2” of bone above the skin incision. Others who have the same lump tell me that it gets better.

They told me to take it easy and wait another week before going back to work, and then, take it slowly. I have over an hour commute each way and the doc thought that, on top of a full day, it might be too much. I plan to go back on the 9th for 3 days a week to see how it goes.

Last, but not least, something we rarely talk about here on HVJ – the bills. I am (thankfully) covered by health insurance and was told that as I’m using an in-network provider, I would have little or no out-of-pocket expenses. Great. But then the bills started coming. $10,000 here, $800 there, mostly from doctors whose names I didn’t recognize. I got everything straightened out with the insurance company but was really upset about how many mistakes were made in billing. Please, please, please, review your bills carefully. Save EVERYTHING. Question things that are questionable. They DO make mistakes.

Finally, happy belated Canada Day to our friendly neighbors to the north, and happy Fourth of July to the US-ers among us and greetings to everybody else out there.

Though I’m guilty of not posting often, I love answering questions, so feel free to write and pick my no-longer-addled brain.

Selma

Taking a break from watching dark Swedish mystery films to update.

I've had this really annoying dry cough for weeks and decided to err on the side of caution and get it checked out. As I suspected, it was a response to the irritation of the vent (which was in there for something like 9 hours) and nothing to worry about. As the PA was listening to my chest, she heard my "murmur less" heartbeat for the first time and grinned. I appear to be fixed! Lungs are clear, heartbeat is strong, blood pressure is perfect. Maybe when I return to the surgeon, I'll be able to be weaned off the Metoprolol? Sure hope so.

Wow, I've been a baaaad HVJ poster. My surgery buds have been reduced to e-mailing me, asking me if I'm okay! So, here's a check-in. My surgery was the 11th of May and things have been slowly getting back to "normal" (whatever THAT is!) since then. The dizziness is gone, the flashy lights are gone, I no longer have to count to 5 before moving my head and 2 nights ago I actually slept in my own bed.

Public Service Announcement for people who are anticipating surgery: there are a bunch of folks who seem to come through valve repair and are out running marathons in what seems like weeks. Trust me. I am not among them. You may not be among them, either. It's okay. We all heal at our own rate.

The incision is a bit tender but looks great and seems to be healing well. I'm walking daily -- strolls around town, walks down the driveway to pick up the mail -- nothing too ambitious. I haven't napped at all since I got back from the hospital and am finally sleeping through the night.

Things that are weird: I don't recall reading anybody else reporting that their skin was flaking off? For real, it's like a sunburn peeling but we are talking about places that do not see the sun! Maybe it's some kind of reaction to the betadine wash? Anyway, it's strange.

Still have numbness and tingling in my right thumb.

Heart beat is a little elevated -- used to run around 60, now it's up around 80.

I guess I'll get a full report when I return to Mt. Sinai at the end of the month.

Best to all who are recovering, and to those in the waiting room!

Selma

Thanks to you all who wrote and encouraged me to have the wonky ECG sent to Dr. Adams' team in NYC. As one of those "I don't want to be a bother" patients, I needed the kick in the butt. The Mt. Sinai contingent couldn't have been nicer -- they compared the ECG with others they had on hand and reassured me that everything was fine. What a relief!

Things continue to get better. The dizziness is nowhere near as bad as it was, I'm walking more, still sleeping in the recliner though.

In my journal reading this morning I was reminded about something that helped a lot with the shoulder/neck discomfort. Here's what I wrote to Vel, whose surgery is coming up soon:

--------------

I was reading someone’s journal and was reminded about microwaveable neck pillows. GET ONE!!! This is the curvy thing that sits on your shoulders. You put it in the microwave for 2:30 and it comes out warm and steamy and feels SOOOOOO good on your shoulders. For me, the neck/shoulder pain was far more annoying than the sternum pain. And with the neck pillow, you just flop it where it hurts, hit the recliner, and sigh. :-)

-----

I received one from a friend and she couldn't have chosen a better gift.

Selma

It's been 10 full days since the surgery and I'm feeling better every day. Breathing is improving, appetite is back, pain is manageable. The yuckier bits of the hospital stay are receding in memory and those first horrible 48 hours are looking much better through the rear-view mirror.

The effects of recovery are cumulative. At first, I was afraid to do pretty much everything for fear I'd break. But day to day, I'm feeling less and less fragile. Mostly.

My breathing is getting better (it was fine, really, but I want to keep pushing the spirometer). Right now, my most annoying symptom that I can feel is dizziness. I tend to move fairly quickly and sometimes even moving my head to look at something causes a major episode of the wobblies. Other weirdnesses include numbness in several places and the occasional ocular migraine.

I got a quick check-up at a local cardiologist today. The incision is healing nicely but my EKG was a little wonky and that's a bit nervous-making. Maybe someone can shed a bit of light. When the doc said the EKG was "abnormal" I asked him to indicate in what way. He said it looked like the EKG of someone with coronary artery disease but, in checking my records, he saw from my pre-op cath that my arteries are clean as a whistle. If he'd just met me, he'd have ordered a cath. He didn't seem the least bit concerned and I suppose I shouldn't worry. But...... that feeling that something might break? That fragility after surgery? Hearing about an abnormal EKG kind of threw me.

There's something to be said for the security of being monitored 24/7 at the hospital, knowing that even as I sleep, someone is keeping track. Now that I'm home, I'd be lying if I said I wasn't a little scared about the words "abnormal EKG."

If anyone has any advice about moving through that place of post-op anxiety, I'd looooove to hear it.

That said, I really AM feeling much, much better.
Selma

Added a few pictures, including one of me with my fellow HVJ Mt. Sinai Alumnus, Bob. Bob and Betsy were great role models for Stewart and me -- Bob was a few days ahead of me and a super cheerleader! They're back home now doing the recovery dance, too. Tasha, my MIL's dachshund, found the heart pillow irresistible. The "beauty shot" was taken 8 days after surgery. And the indoor nest is where I go to chill. The past weekend was so great, I spent most of it outdoors, listening to the birds and enjoying the beauty of the Catskills in spring.

Incision at 8 days

Who Stole the Heart Pillow?

Indoor Nesting

Selma and Fellow HVJ-er Bob

So many random thoughts going through my head, this second day home. In no particular order, just want to get them down.

-- Feeling really grateful for my mother-in-law, who tended the home fires while we were gone. We came home to a clean house, stocked with good food and love. And sunshine.

-- I kept walking around the house, sniffing, and saying "Something smells horrible." It was me. My body is issuing forth medicinal smells that scare my cats. I don't blame 'em for running.

-- Only 1 narcotic pain killer yesterday and 2 Advil.

-- I slept pretty much 10 hours (interrupted by pee breaks) in the recliner. No finger pricks. No vitals. No EKGs. It was heaven.

-- That first shower. Oh. My. God. You know how great the ice chips were in ICU? The shower was even better.

-- My appetite. Not so great yet. OK, I spent the whole week bitching about the food at Mt. Sinai, but really, even good food hasn't got much appeal. Yet.

-- Large black cats and large red heart pillows are both very effective sternum protectors. But large red heart pillows don't purr.

-- How long do these DREAMS last????? This is better than quitting smoking!

-- Right up there with the ice chips and the shower? The first cup of decent coffee in 8 days.

-- Sadness over Cindy. We worked through the lead-up to our surgeries together. I still can't believe she's gone.

-- Hard to believe I'll just be hanging out for the next several weeks, with my only responsibility that of getting better. Wow!

7 days ago, I was in surgery. Now we're heading up the Thruway on the way home. What a week.

1). Dr. David Adams who fixed my heart and thus won himself a perpetual place therein. He and his Fellows just stopped by and declared that I "looked great.". OK, how could I not love this man? I look like a blimp.

2). An unobstructed view of the sunset over Central Park.

3). Nurses and medical staff and housekeepers and patient care associates of Mt. Sinai Hospital.

4). Turkey picatta.

Ok not turkey piccata.

5). Adam Pick and the entire HVJ community.

6). But really #1. My dear partner, Stewart. Love you

I'm getting a little weepy.
Every second of this week was worth it to be here now.

Just got busted out of 7-W and am now part of the "gen-pop" on 6. With ..... Wait for it .... A WINDOW with a view of a TREE!!! OK, it's kind of an oblique view but I'm back to having a quiet, pleasant roommate and not the small bundle of strange body noises who talked to the voices in her head for the past 24 hours. I'm not being mean , well, maybe I am but holy crow, there are SICK people here. I shall miss the silverfish in the bathroom but I may get out tomorrow. And if I'm REALLY lucky, they'll deliver dinner to the wrong room.
Love you guys and love getting your notes.
Selma

Possum Primavera. Now with more possum!!
Oh. Sorry. It's PASTA primavera. Coulda fooled me!

Anybody else have issues with v-tach after mitral valve repair? There were 3 separate short episodes. A little scary.
Thanks.
Selma

I'm sorry, the surgeons may be great but man, the food could not be lousier. They must take our old valves and bread them and call them 'baked fish.'. Disgusting, but that stuff bore no resemblance to any fish I've ever met, living or dead. I'm living on fruit salad, apple sauce and juice which at least were once found in nature. Still don't know when I'm getting out.

Kate Rooney is up on the ward now. I think her husband will be checking in.

Until later.
Selma

Yippee!! They just pulled the last drainage tube. Hooray! I saw Regina, another of Dr. Adams who is on HVJ Kate Rooney had her surgery today here and should be up in the ward tomorrow. Party time!!
Selma

Oh. My. Goodness. I am fat as a house! I look like I might explode. They put me on some pee pills, quit the insulin, and I think I just get one more shot of heparin. Yesterday the pacer got disconnected and the larger of the 2 chest tubes, the foley and the PICC line all came out. I'm walking a lot, have taken Bob's spot as the floorwalker of 7 west. The plan to take the last chest tube out today and hopefully, I'll get sprung on Wednesday thanks for all your nice messages -- I've read every one!!

They got me up to a room last night -- 7 west. Just had a nice walk and spent some time with Bob and Betsy. Bob is probably leaving today, Lucky duck! I'm eating a yogurt and hanging out with Stewart. I'm hoping tonight I'll actually get some sleep! More later -- thanks for all your great messages.

Hi sweet friends,

Things are better today, but it will be a long journey. Best news is that the breathing tube came out last night along with the drainage tube and Selma is more comfortable and can talk. But, well, it was a big surgery and I truly wish she was feeling great but there is a ways to go. It's only about 36 hours ago after all. I don't wish to discourage anyone who anticipates this procedure! Selma has an amazing time ahead. For now there is some pain and finding a position in bed that gets the whole body feeling good. Her back and shoulders hurt which is not unusual. She is tired which is also not unusual. I think maybe tomorrow or the next day she will turn the corner. She is stubborn and impatient in a very positive way - these are the greatest motivators. Hopefully, she can get out of the ICU tomorrow, but one step at a time. The doctors are encouraged by how she tolerated surgery and think she is doing very well.

I will keep you updated. Thanks to those of you who have emailed. I have printed emails out and she will get them tomorrow. When Selma starts getting hungry and can't wait to get out of bed, we will have hit the homestretch. I'll be sure to let you know.

xxxPamela
pamdraper@aol.com

Hi, dear Friends of Selma;
I'm Pamela and will be posting for Selma while she has surgery today and while she recovers in New York City. First, surgery went very well today and Selma went off to the hospital for a 5:30 AM admission with her usual spunk, good humor and wonderful good common sense. Surgery lasted an hour and a half, with the prep work lasting before and after a good five hours.

I saw her from about 1:45 to 5:30 PM in the ICU. She was very sedated and poor kid, had a lot of tubes to moniter her. Most of all, she disliked the breathing tube, which prevented her from talking. The struggle for the next several hours it seems will be the struggle between breathing on her own and the rest she needs that requires sedation that makes breathing on her own difficult. They have to find a balance. She is stubborn and a fighter though, wants off the tube, but is tired. Finally Stewart and I saw one of the doctors who told us the surgery went extraordinarily well. They repaired the posterior mitral valve and the tricuspid valve, which upon inspection, also needed repair. The doc said Selma's heart was strong and was optimistic she would possibly be out of the ICU by sometime tomorrow.

Right now, while she recognized both Stewart and me, I think she really needed the rest. She has so loved all your support and good wishes and I think tomorrow, I will see a completely different Selma. The best news of course is the that the surgery went beautifully and the prognosis is excellent. And that the anticipation is over!

I will keep you updated. Selma:one brave lady!

Best Regards,

Pamela
pamdraper@aol.com

Fingers and toes crossed that I don't get bumped for tomorrow. I am meant to call between 2 and 4 to find out what time they've scheduled me. The lists are made, the bags are packed, and we're going to be leaving for New York in a couple of hours.

I made the bed, washed the dishes, and cleaned the cat box for what will probably be the last time for WEEKS! Yay!!! The recliner is awaiting my return and I'm stocked up on old movies.

I want to thank everybody here for all their support and help. I truly do not recognize the person who is going to be having heart surgery tomorrow. She's so calm and centered!

Thinking good thoughts for everybody waiting and all my surgery buds from this week and next week. See you on the other side!!

Love,
Selma

Had the pre-op at Mt. Sinai on Friday -- we took the train down and back, which was lovely and relaxing, with a gorgeous view of the Hudson.

The actual appointment was pretty routine; chest X-ray, blood and urine, lots of paperwork, hearing the risks, signing the consent, a whirlwind visit with an anesthesiologist, and a nice visit with Dr. Adams' PA who happened to be helping out in the pre-op section and who might actually be present in the OR next week. We walked back across the park to our friend's house and ate a seriously NOT heart-healthy dinner.

I've been waiting since December and didn't think there would be any more surprises, but I am a little baffled that this still feels so unreal. I suppose it will be all-too-real in six days.

Thinking good thoughts for everybody who's recovering and the group who are hitting the OR next week.

Nine days until surgery. It seems like there are a bunch of HVJ surgeries coming up next week which means that many more successes I can tick off on the list. And I'll get to meet Betsy and Bob in New York.

Told my mother about the upcoming surgery this past weekend. Glad to have put that to rest -- she was fine.

Last night I pinned down a couple of friends and did my Living Will. I thought it would be really hard but we ended up joking and laughing our butts off, which was exactly what I needed.

I'm finding my emotions are kind of leaking out in strange ways; I've been thinking about my Dad who passed away a few years ago; I've been wishing I had stayed closer to extended family and wishing my mother and sister were not so far away. But while I have no family around, I'm fortunate to have a fabulous partner and some really good friends who are going to hang in there with me.

Pre-op this coming Friday. The weather's supposed to be nice and there's something to be said for having the hospital right on Central Park.

Nancy, start sharpening your poetry pencil.

Another week closer to my May 11th date with Dr. Adams. Things that are going through my mind:

1) Still haven't told my mother -- can't find the right words to tell her I'm having OHS yet at the same time reassure her and have her not worry....but part of me wants to tell her since, well, she's my MOM and even when you're 60 and she's 96, sometimes you still want your mom! And believe me, I know how lucky I am to still have her!

2) My refrigerator door is really heavy. I mean REALLY heavy. Too heavy for me to pull open after surgery. I gotta find a cooler so I can eat during the day!

3) They're gonna let me drink coffee....aren't they?

4) There is SO MUCH to do before leaving work for 4-6 weeks. And I don't feel like doing any of it.

5) $@&*&$)& breathing tube.

Tick tock

There's a man who posts over on another board for heart valve patients who really got me thinking today. He's several weeks post-op and is having a relatively smooth recovery. He said he was sitting around and all of a sudden, had this bolt-from-the-blue moment of, "Oh. My. God. I had open heart surgery." He was musing about how something so routine these days still maintains that aura of Really Big Deal.

I totally understand. Sometimes I feel like half the world (my HVJ friends and other folks who are dealing with Big Health Stuff) is verging on being positively cavalier about the whole thing, and the other half are ready to plan my eulogy! The truth, I think, lies somewhere in between.

I know that for me, when I'm kind of joking around about how much I'll enjoy the time off or how much reading I'll get done, or oh, yippee, maybe I can finally lose some weight, I feel fundamentally better than when people are being ever-so-serious and telling me how "brave" I am. I was at a board meeting recently and one of the people there outed me as a soon-to-be OHS patient. I know people were truly concerned and acting from a caring place in their hearts in offering up good wishes and prayers, but the fact that they made the whole thing so "heavy" didn't work well for me. I didn't really want that reminder about how this was a Really Big Deal. In fact, I was kind of anxious and depressed the next day, after weeks of keeping my anxiety at bay. That's not good for me as my surgery date gets closer. I really need to stay upbeat and positive. (I'm MUCH better now).

I think part of the whole "OHS OMG" factor, as I call it, comes from the fact that people of my generation and older were alive before OHS started happening. In the 60s and 70s, it *was* a big deal. It was HUGE. Now, not so much but that memory remains.

I'm blathering. Back to work for me!

OK, I am officially sick of waiting. I wish heart surgeons were more like dentists. "We have a cancellation. Can you come in later this morning?"
One month, two days.

So last night a new friend who is also dealing with heart issues gave me a copy of Drs. Gillinov & Nissen's Heart 411. Between that, Adam's book, a book Nancy F. shared with me, this website, and Dr. Adams' videos, I could probably do this surgery myself. Whad'ya think? DIY valve repair? Take THAT, Martha Stewart!

Just learned that a dear friend and former band-mate will be dealing with chemo about the same time I'll be recovering. We figure we can spend the spring getting healthy together. She's just entering the "information overload" stage herself -- we can captivate one another with details.

Soon it'll be April. Then there will be just a month and a half to wait. Aiiiiiii!

Can I just say how happy I am that people who have had successful surgeries continue to come back and report on how they are doing? Today was a day full of good-news posts and every time I read one, I feel better about my decisions. If you ever feel that the "I'm doing great" posts aren't worth posting, think again. You have no idea how much they help those of us working our way through the process.

I haven't posted much because there's not much to report. Still in wait mode -- at this point, I've read so much about what's going to happen that there probably won't be any surprises. It's really helped to have watched so many fellow HVJ-ers walk the walk before me and come out swinging on the other side.

Either I'm in total denial that this is even happening, or, more likely, I've just gotten used to the idea over the past couple of months. Either way, I'm feeling remarkably calm and I can talk myself through the occasional moment of anxiety.

I'll go into surgery prayin’ and hopin’
The doctors are planning to cut me wide open
If I have to travel so far from my home
I sure hope that Nancy will write me a poem.

Not the bad ones, the Blue Cross/Blue Shield ones. Just heard from Terry that I'm officially authorized, certified, approved, stamped, sealed and cleared for a 4 day vacation at the lovely Hotel Mt. Sinai, with a review to occur on Day 5 if necessary. What are they gonna do, kick me out, tubes and all? I can't believe that the person who needed drugs to get into an airplane in the past is laughing her way to OHS. Go me!

So....Chuck threw down the gauntlet yesterday and said "There's not a question you could ask that hasn't been asked before." That's quite a challenge! So, here goes: I have a herniated disc in my back that makes the traditional position on an operating table pretty much unbearable. When I had my cath, they very kindly shoved a rolled up something or other under my knees, which helped a LOT. Will I be laughed out of the operating room if I were to ask for such an accommodation? Anybody been there?

I received some really nice welcome notes from people here. It *is* tough to lay all this angst at the feet of my nearest and dearest and the folks here have the benefit of the delete button if they get sick of me. :-)

Not a good night for sleep last night, since I read a lot of journal entries before bed and my thoughts and feelings about the surgery were all super-activated. I read about a beloved member of the community not making it through her surgery and that was hard to get past.

I thought I was pretty much asymptomatic until I realized that every day when I get home from my decidedly not-strenuous job, I feel the need to get horizontal. Maybe after the surgery I'll be able to stay up past 9:00? Ya think?

I haven't told my soon-to-be 96 year old mother that this is in the works, though my sister, with whom she lives, does know about the surgery. My mother is in great shape, mentally, but I'm loath to worry her. Is that stupid? When I was a kid I remember her calling me at college, saying, "Well, dear, we didn't want to worry you but your Dad had a heart attack. He's FINE now." Payback time....

Not sure what took me so long to start a journal here ....I've always resisted blogging, as I'm a fairly private person. But part of me feels like some sort of voyeur, reading other people's stories and not participating. So...here goes. I'm extremely grateful to Adam and to the HVJ family, as well as Dr. Adams and his team for the amount of research they have collated and made available to the "heartsick." The last month or so has been dedicated to learning everything I can about MVP, the available options, the surgery, and the recovery process. Many of you have unwittingly helped me in my evolution as an educated patient and I thank you.

Having had all the preliminary tests, first and second opinions, I've decided on Dr. David Adams (whose surgical coordinator, incidentally, gave me Adam's book upon our first meeting). I had my consult on February 21 and unlike some, I had the "luxury" of scheduling my surgery fairly far into the future. My pre-op will be May 4 and the surgery will be May 11 at Mount Sinai. I'll be traveling from a small town about an hour and a half away and, thankfully, have friends across the park from the hospital where I can spend that lovely night before.

Half the time I wish I'd just gone ahead and gotten it over with sooner -- this waiting is no fun. Looking forward to getting to know the folks here and walking this path together.