Tuesday, June 30, 2009
Patty is still experiencing discomfort that runs the gamut between bad and nasty, with brief respites granted from time to time by sleep. She has vomited several times--although, since she's had only popsicles and apple juice, the volume is nothing Exorcist-like (and you'll get no complaint from me about this.) When she's awake and the pain eases back for a few moments, Patty has seemed chatty, if not entirely coherent (partly because her mouth keeps drying out, and partly because of the one-two punch of pain and pain medication). In true Patty fashion, she was barely awake after her surgery when she asked me to check her work e-mail to see if her AP art students had received scores on their portfolios.
Over the past hour or so, a headache that started out as a twinge has grown into yet another pain to manage; Patty's nurse gave her Benadryl, though, which within 30 seconds transported our patient to La-La-Land. All in all, I would say that Patty is doing okay, all things considered. She enjoyed visits from Neil, Emily and Kristen this evening. Dr. Costanzo dropped by, as did Maryanne Spencer, who has always made sure the folks at Edward are on their toes in looking after Patty.
All afternoon and evening, Patty was doted over by Kelly. At one moment, Kelly both surprised me and filled me with pride at her maturity; at the next, she seemed so vulnerable and frightened I wanted to conceal her under my arms and hide all of this from her. She's been a great help, as has Kathleen, who is clearly downplaying her own discomfort so she can be here for Patty. She's been invaluable many times. Sometimes, when I'm in the presence of Patty and Kathleen together, and I think about how sick they've each been and may be in days to come, the order of things seems anything but orderly. Bad things sometimes do happen to good people. Okay, enough of the home-brewed philosophy...back to our patient.
Patty has had one incident of blood pressure dropping to the point nurses needed to intervene with additional IV medication (and tons of fluids), has complained of feeling uncomfortably warm (although she's not febrile), said about an hour ago that her heart felt like it was racing and, as mentioned, has been dealing with pain and vomiting. Still, if she can tough out the first day or so, and I know she can (easy for me to say, no?), I think she'll come through this just fine.
I'll provide an update tomorrow sometime...I'll try to actually wait until there's something of any consequence to report...unlike today's 30-minute vignettes that really said little.
I'm staying over at the hospital tonight, so if anything of consequence comes up during the night, which I don't anticipate, this is the place to check. Speaking of which...if you text me or call and I suggest you visit the blog, I'm not trying to avoid a conversation; it's nice to hear from people. I just think I do a better job recalling the details when I sit in front of a screen than I do with a phone to my ear, so reading the notes here is the best way to ensure I'm not overlooking too many important details.
Patty's still in a fair amount of pain, but it isn't nearly as intense or consistent as it was two hours ago. She falls asleep for a moment here and there, but has mostly been awake for a while and is being a reasonably cheerful--albeit uncomfortable and weary--patient. She's quite talkative for one with a sore throat and the rough equivalent of a stab wound in her side. If there's more to report, I'll let you know. If you don't hear anything for a while, presume that things are pretty much status quo.
Well, we finally got in to see Patty, and I'm not sure we were quite prepared for what we found. I sure as hell wasn't. It's official...when it comes to this sort of thing, I'm a wimp.
Patty is in a great deal of pain; even the simplest movement, like scratching her nose, brings tears to her eyes. It's so hard to see her hurting like that with no ability to bring any relief. Patty said that just breathing really hurts all the way from her shoulder to her hip, and that her first waking memory was of bursting into tears. She, of course, thinks she's being a baby, and has insisted we have the TV on with the volume up so she doesn't "have to listen to (her) own whining."
As you can see, she's covered in wires and tubes, and she's also surrounded by machines, the whole effect of which transforms alarming into deeply unsettling. For most O'Maras, who have all summered in Hell, this might not be all that severe or frightening. For me (and Kelly, judging by her reaction), this is somewhat new and wholly unpleasant. Kathleen even looks a little lost, and she's been through some wars herself.
Anyway, I want to get back to Patty, so I'll sign off for now. They've added more pain drugs to her mix, so hopefully she'll soon get some sleep. I'll try to provide another update later today.
In case anyone needs the info, she's in room 6604 (sixth floor) of the cardiac intensive care unit of Edward Hospital.
I hope she feels better soon, because I'm wishing she hadn't done this...at least for now.
We just met with Dr. Cziperle, the surgeon who implanted the Heart Net device in Patty. Most of the time Patty has been away from us has been devoted to prepping her--and whatever the hell the "after" counterpart of prepping is (desurgerizing?). The actual surgery took 58 minutes. We were told that Patty's vitals were fine throughout, and that the device was placed without any major problems. The woman leading the study for Edward Hospital told me that the echocardiogram (a down-the-throat version instead of the typical, ultrasound-like device) showed that Patty's heart really still hadn't been pumping very efficiently, so the Heart Net really should help improve her heart function. Further evidence, it would seem, that Patty has done remarkably well with her crappy heart.
We've been told that Patty is in her room right now, is conscious, and is working with nurses to get her pain management right. Apparently, Patty's first words in coming out from anaesthesia were, "It hurts," which made me feel a strong and sudden sadness, and an equally strong and sudden urge to see her. I was hoping instead to hear something along the lines of, "She feels great; she's ready to go home." We'll be able to see her in about 45 minutes; the wait is of course irritating me, because I know they're keeping me away because they don't want a husband barking, "Do something for her," when that's precisely what they're trying to do.
So all who have worried about Patty can breathe a sigh of relief. Of course, after a procedure some time ago in which "everything went fine", Patty told quite a different story than the doctors. So, once I have a chance to talk to Patty and get her take on things, I'll post again. For now, at least, it sounds like very good news.
Patty's surgery is wrapping up, she's still doing fine, and I'm starting to relax, which is good, because I've peed three times in the past hour. We'll be hearing from the surgeon shortly...I'll provide details when I have them.
Well, they just took Patty away, and I have to admit that, in spite of all assurances from doctors, nurses and Patty herself, I'm terrified. I couldn't admit this to Patty in words, but my expression betrayed me, and I feel a little ashamed that I can't always succeed in being my wife's "rock". If there's one thing we've learned along the way (and I think we can in fairness say we've learned more than we had ever hoped), it's that Patty is anything but a "typical" patient. The whole medical crew has been very good this morning about making sure we have a clear picture of what to expect. As much as knowledge is always valued, each new piece of information forces speculation about any little thing that could go wrong.
Kathleen and Kelly are with me. We have been given a pager, through which we will receive updates about Patty's condition. I asked the surgeon if I'd receive any updates if complications arose (because if the sky isn't falling I have to pull it down upon myself), and he said, "Well, I'll tell you this. If you receive a message that says, 'It's over,' you can presume the surgery is finished, and not your wife." Nothing breaks the tension better than a little macabre humor, especially from the guy who's punching a hole in your wife's torso. Were that not enough, Patty's wristband has the letters "RIP" on it, which also gave us a second of pause.
Patty is in good spirits and looks pretty even without a speck of makeup. Last night, she was feeling somewhat anxious, mostly about post-surgery pain, but also because she couldn't recall what color of hospital gowns Edward Hospital provides. Without this information, she wouldn't have a clue what earrings to pack to accessorize her hospital ensemble. I'm not lying. Overwhelmed by this fashion uncertainty, she barfed.
I think some of this anxiety returned this morning when Patty was told she wouldn't be receiving an epidural for pain, as had been suggested, because her Plavix had been discontinued too close to the date of her surgery. Instead, she'll receive an IV that will allow her to self-administer pain relief as needed. Aside from unease at this change in plans, she seemed ready --and perhaps even a tad impatient--for things to move along.
I will try to provide an update as soon as possible after Patty comes out of surgery. From what I understand, it could be up to three hours before she'll leave the O.R., in large part because she'll be wired every which way. And so the wait begins...
Stay tuned...and thanks for caring.
P.S. Since Patty's heart attack, every morning during the school year I kiss Patty goodbye and say, "Be careful." Sometimes, she'll respond, "You don't have to worry every day; I'll be fine." This morning, the last thing I said before she headed for the O.R. was "Be careful," and she again responded as in the past. Sure, I don't have to worry, but I will. And while there's always risks with these procedures, Patty's always been honest with me, so I'm trusting her to be fine.
Monday, June 29, 2009
I just wanted to pop in one last time to say that, barring anything unforeseen, Tuesday's surgery is still a go for Patty. We need to leave our home tomorrow by 5:00. In the morning. Yuck.
Patty is feeling the first tendrils of mild anxiety about what's to come, mostly because the pain during recovery is said to be intense. Still, I know she's confident this procedure will help her, so I think she's also looking forward to getting this over with. I'm still nervous on her behalf, but confident she's tougher than anything doctors can throw at her.
Please send good vibes in Patty's direction. I'll try to update the blog as soon as possible after her surgery; if I can't access the blog at the hospital (as was the case last time), it may take me until Wednesday sometime to provide an update. I will also try to answer any emails at firstname.lastname@example.org.
I unintentionally created some confusion in one of my earlier posts or e-mails--so, to clarify: Patty welcomes calls, emails, text messages or visits during the week. You shouldn't feel any pressure to visit, nor any reservations about stopping by. Of course, if you'd prefer not to watch Patty sleep (even though she's an adorable snoozer), you may want to call first to get a sense of whether she's staying conscious or just dozing the days away. As for me, I'll probably be sleeping and eating most of the time; if you'd like to watch me doing these things, you're more than welcome to do so.
Wednesday, June 24, 2009
Patty and I found an interesting, high-level overview video of the procedure Patty will be undergoing next week:
Every time I see the HeartNet, I keep thinking about the green mesh sleeves that Binny's Beverage Depot puts around my bottles of liquor so they don't bang against each other and break. Something tells me the HeartNet costs a little more than those mesh sleeves (and more than all the liquor I drink in a year).
I don't know if this sounds twisted, but there's a part of me that really wishes I could watch the procedure, because it seems fascinating. Having said this, I had to leave the room once when Patty was having bits of glass removed from a cut in her hand, so I'm not sure I'd make it through the surgery without passing out. What's more, it is Patty, so seeing her with a hole punched in her side might also be a tad unsettling.
I tried to find photos of the procedure online (for anyone with as much of a dark fascination as mine), but all I could find were pictures of the device along with some manga character (who I presume has no relation to this whole deal).
We found out this morning that Patty needs to report to Edward Hospital next Tuesday at 5:30 a.m. -- so she'll probably have to go alone and we'll catch up later.
Tuesday, June 23, 2009
This morning, Patty visited with Dr. Cziperle (zipper-lee), yet another in a long line of doctors with unusual but oddly profession-appropriate names. A previous surgeon involved in Patty's care had the surname Slaughter (okay, not so much appropriate as ironic). Dr. Cziperle will be performing the insertion of Patty's HeartNet device early next Tuesday morning at Edward Hospital. PJ, Kelly and I went along to listen and to ask questions. I'm not sure we have all the details 100% correct, but I think we recalled enough to provide a general overview.
The doctor said that the procedure lasts approximately one hour from first cut to final stitching, with an extra half-hour of preparation before surgery. The prep includes a right heart catheterization (to measure pressures in the heart), a wrist catheterization (to measure blood pressure), an interior echo (down the throat, to visualize the heart) and an epidural catheter for pain management after the surgery. As to the latter, the surgeon explained that this pain is likely to be legendary (among the very worst), because of the sensitivity of large nerves that run along these ribs. In 95% of cases, this pain subsides over the course of several weeks; in the remaining 5%, this pain does not subside, ever, and the nerve endings have to be, for lack of a better word, killed. I'm not thrilled about the idea of Patty hurting like this, but the prospect hasn't scared her off, so you'll still find me at the front of her cheering section (I'll be the one with the deer-in-headlights look on my face).
The actual procedure, as we understand it, involves:
- placing a breathing tube down the throat
- collapsing the left lung (breathing is controlled and monitored by the anaesthesiologist)
- making an incision between two ribs somewhere on the lower left side (location to be determined by where the lower tip of the heart is found, which isn't a slam dunk because the tip of Patty's damaged heart may not be where one might expect to find it)
- making another incision, this time through the pericardium (the sac surrounding the heart)
- grabbing the tip of the heart using a suction device and pulling it into a more elongated (or correct) shape
- placing the HeartNet device (a special metal alloy mesh) around the lower part of the heart and releasing it in position so that it holds the shape it had been suctioned into
- making sure the device has no bunches or folds, which would require that it be taken off and replaced (not because Patty would have a problem it looking unflattering, as you might anticipate, but because it wouldn't function properly)
- reinflating the lung
- closing the incisions
- that's all, folks
If you'd like to see more about the procedure, a number of web sites have illustrations and/or news reports. Just Google "Paracor HeartNet" and you should find a bunch of stuff. Anything you read about the HeartNet-D, while really cool and just a little sci-fi, is irrelevant as far as Patty is concerned. Patty's just getting the garden variety mesh bag.
Patty will be in the cardiac intensive care unit (CCU) for 2-3 days after her surgery and, if all goes well, should be home within a week. While she's still in hospital, a drainage tube at the incision site will allow the lung to heal and drain effectively, and the epidural will be kept in place to control pain. After she's home, she will be restricted in her activities, including being barred from driving for a month, in part because of the side-to-side motion, and in part because she'll probably be stoned out of her gourd with pain meds.
Some of the more common risks of this procedure are infection, bleeding, air leaking from a lung and arrhythmias. Less common are more severe complications, including death (two cases in all study participants to date). The vast majority of participants have done very well, and most report significant improvements in quality of life (including measurable improvements in ejection fraction). Given Patty's relatively young age, we're hopeful she'll come out of this ready to run the Chicago Marathon, or at least extend her healthy years by a great many. Specifically, Patty's hope (and mine) is that this surgery will prevent the need for a transplant, ever. Dr. Cziperle agreed that this was a good goal, and suggested that it seemed much more possible with the device than without, although researchers only have two years of history with the device to measure successes and failures. The early results are very encouraging.
Edward Hospital has liberal visiting hours, even in the CCU, and I'm sure Patty will welcome company once she's out of the initial post-surgery groggies. However, you may want to check in advance on the condition of our patient, so that your visit doesn't involve an hour of watching Patty snore, snuffle and drool (I'll post pictures of this, anyway). If you don't have my cell number, send an email to email@example.com and I'll share it with you.
Please continue to keep Patty in your thoughts and prayers.
Friday, June 19, 2009
Friday, June 12, 2009
When teachers are lucky, the summer break affords some respite from what for many was a grueling stretch of months. If you've ever met anyone who tells you that teachers have it easy because they have summers off, tell them to follow those teachers around during the school year. Their eyes will be opened. Through this past school year, Patty worked every weekday from 6:45am to at least 4:00pm, and devoted countless evenings and weekends to other activities related to her students. To be honest, I was surprised (and impressed) how well Patty held up to the rigors of a full-time schedule. I was also a little worried, because everyone who knows Patty also knows that our patient would not cut herself any slack for limitations imposed by her health. Fortunately, she made it through without too many battle scars.
So, in theory, Patty should be kicking back now and taking a breather for a while. Alas, no. Instead, her summer break to date has been a sea of medical appointments for various reasons. Let's do a rundown:
- Patty recently completed the first diagnostics that precede her possible inclusion in the Paracor heart study. These included a treadmill test, a six-minute walk test, bloodwork, urinalysis and an echocardiogram. Based on Patty's results, she would qualify for the study. Her results on the treadmill were not weak enough to justify transplantation (let's keep knocking on wood for that), but not strong enough to exclude her from the study. Her echocardiogram confirmed that Patty's ejection fraction (a key measure of heart function) remains in the neighborhood of 15-20 percent; a normal heart functions at about 55 percent. However...
- Patty may have to re-do all of those tests in the near future, because the blood tests revealed that Patty had elevated white cells, which is typically indicative of some form of infection. Patty did all of these tests while feeling poorly; she had started the morning with a low-grade fever. What's troubling about this latest bug is that Patty had just finished a full round of kick-ass antibiotics for an earlier infection. Patty is visiting a specialist this morning to see if we can get to the root of this problem. The doctors and nurses leading the Paracor study may be forced to exclude Patty if this issue isn't understood and resolved. What's more, doctors are concerned that these infections may be responsible for Patty's recent dips in blood pressure, which have caused her to experience heart failure symptoms of varying severity. Of course, worrywort that I am, I'm a bit uneasy about my wife participating in an invasive procedure involving the heart, given her seeming propensity toward infection, but I know that Patty's heart failure specialist loves her and wouldn't take a risk that wasn't warranted. But wait...there's more...
- Remember I wrote a while ago about Patty's back injury? Well, it turns out she also has some problem related to her right shoulder. Why? We have no idea. Patty has limited range of motion in her right arm, and has been experiencing pretty significant pain both while lifting her arm and, at times, at rest. She visited an orthopaedic doc yesterday. Her X-rays showed nothing amiss, so nobody seems to know why Patty's in pain. The doctor gave Patty a cortisone shot that so far has done nothing to alleviate her discomfort. We suspect we'll be revisiting this problem again in a few weeks. But that's not all...
- Patty still needs to make an appointment to find out why her foot seems to be hurting, off and on, for no apparent reason. Oh, and she has an appointment scheduled to see if there's anything more that can be done about her back, which is still bothering her.
- Other than that, Patty's doing great.
I'm sure I'm overlooking something. So, truly, this has been a whirlwind start to Patty's summer. Hopefully, we'll soon have answers to address all of these oddities and, with luck, our patient will finally have a few moments of R&R before gearing up for the next school year.
More soon as we learn it...
P.S. Our condolences go out to the great many people who will miss Mary Ann Sittinger, Patty's aunt, who passed away this week. This family has lost too many truly wonderful people over the years, and Aunt Mary Ann and her late husband Bob were among this group. The personalized stocking she knit me as a welcome to the O'Mara clan will always be a cherished gift.
Wednesday, June 03, 2009
Based on our visit with Patty's heart failure specialist this morning, it would seem I'm worrying more than is warranted. Dr. Costanzo checked Patty's blood pressure, listened to her heart and found no cause for immediate concern. She adjusted some of Patty's meds (further reducing Lisinopril and Metoprolol) and asked that she follow up within a couple of weeks. Patty has actually shown some improvement since the last reduction in her meds. She still experiences dizziness and fatigue, but is not feeling completely wiped out by minor activities (as was the case a week ago).
Patty will be evaluated next week for the procedure I discussed previously in this blog. However, based on Patty's ability to exercise at a steady level for up to an hour each day (with the full blessing and encouragement of her doctors), she may be excluded from the study because she's too fit. More on this later...
So there's the update. I'm a freak, Patty's mostly fine, and I'll keep you posted.
Monday, June 01, 2009
No sooner do I pour out my anxieties than Patty calls to tell me that, all in all, her day at work today has been much better than the weekend days, in terms of how she's feeling. She's still symptomatic, but not as severe...so maybe she's on the mend after all. I'll let you know...and I'll be sure to post after her doctor appointment on Wednesday morning.
Well, perhaps in my last post I was a little too cavalier about Patty's low blood pressure, and as a consequence left Patty open to the whims of the fates, furies, gremlins or any other forces that toy with the well-being of seemingly "recovered" heart failure patients. Or perhaps I'm just being a worrywort again, and crafting colossal molehills. But as I sit at my computer this morning, I'm fretting about Patty's health.
I'm always on the lookout for signs the sky is falling, and have worried too much about too little in these matters in the past. Yet this is the first time in years that real tendrils of worry are starting to creep in. We've promised to keep everyone in the loop, so welcome to my tendrils. Patty, thus far, is not as worried as I am, so please don't read too much into my take on all of this.
For several days running now, our patient has been under the weather--functioning, but with few reserves of energy. To a certain extent, this was to be expected. As mentioned in my last post, she (and Levaquin) have been doing battle with a kidney infection and, although I've never had one, I've seen them enough and they don't appear to be a lot of fun. However, Patty responded quickly to the antibiotics and, based on what we've seen with her and previous infections, she's showing none of those symptoms anymore. Here's where my worry comes in.
For the past week or so, Patty has been showing symptoms of heart failure--symptoms that we hadn't noticed in a very long time. She has been breathless, especially after climbing stairs. When she lies flat, she starts to cough. Whereas for several weeks she was feeling energetic, she's now sometimes so fatigued after minimal efforts that she needs to sit down to recharge. She can grab a nap in the afternoon and then struggle to stay awake early in the evening. The muscles and joints through her shoulders, arms, back and feet ache regularly and, at times, intensely, even though she's done nothing to aggravate them.
She is sporadically nauseous. At times, her hands shake. Her blood pressure has dipped so low at times that she's dizzy even when sitting down, and she seldom rises from a chair without some concern about passing out. At one point yesterday, her blood pressure reading was in the 55/35 neighborhood, which is ridiculously low even for Patty. She spent most of the day and evening yesterday on the sofa. To be fair, she's not faring so poorly that I think she needs to be hospitalized, but she is certainly showing me enough that I'm watching her like a hawk.
The most unsettling "symptom" is one that I think only I see, and therefore could just be imagining. When Patty struggled with heart failure before, she bore what I call the "crazed rabbit" look--her eyes seemed less alive, her skin had an unnaturally pale tone and her mouth was positioned differently, with more of her upper teeth showing. I realize this all probably sounds stupid, but I don't think I've ever pointed out the look without Patty admitting she was feeling especially poorly at that moment. I hadn't seen the look in several years; I've seen it a handful of times over the past week.
At first, we thought that Patty's lifestyle changes might be the culprit; she's been cutting back on calories, and exercising often, so we thought she might be missing out on some vitamin or mineral, or that she was experiencing some symptoms of overtraining. We also considered the possibility that a long, busy school year, worries about Kathleen and the stresses of today's economy were taking a toll. However, over the past several days she's been eating more, taking a daily multivitamin and not exercising at all, and none of the symptoms have improved. And this has been a happy week for Patty, in part because P.J. just graduated from high school, so her current stresses are certainly not overwhelming. So we're perplexed.
Patty has an appointment with her heart failure specialist on Wednesday to try to find some answers--or, as Patty says, so they can "just fix it." In the meantime, her doc down-titrated some of her medicines that lower blood pressure (lisinopril and metoprolol), with little effect.
Our hope is that these recent symptoms are a temporary residual effect of either her back injury or the kidney infection, and that doctors will be able to prescribe something that will magically restore her to better health. I don't really think this is an unreasonable hope, given how long Patty has been faring well. I'll even happily pillory myself here for causing such a fuss over nothing, if it turns out I'm wrong. But until I see her better, it's in my nature to anticipate the worst.
Anyway, thanks for reading this. It keeps you in the loop and is good therapy for me. Keep your fingers crossed. I'll keep you posted.