Patty's still going strong

Hi everyone:

As I've mentioned in previous posts, no news is good news as far as Patty is concerned -- ergo, I've had nothing significant to report for some time. Patty continues to do incredibly well. In fact, she has even been able to increase her beta blocker and ACE inhibitor dosages to levels desirable for heart failure patients; you may recall that previously this was a problem because of Patty's unusually low blood pressure.

Patty's last echocardiogram and ICD interrogation were both very positive (although Patty's ejection fraction remains at around 25%.) Patty remains the mystery patient, the miracle case, the against-all-odds poster girl.

Last night, Patty modeled in a fashion show for Edward Heart Hospital, along with Dr. Costanzo (her cardiologist) and a number of other patients who can share compelling heart stories. Patty was a natural, and she looked amazing.

Patty continues to teach part-time, and hopes to return at a full-time level for the start of the next school year. The kids are doing great. All is well with us, knock on wood. If anything changes, and perhaps even if nothing changes, I'll try to write again soon.

Love,

Brian

Just a quick note

Hi everyone:

Just thought I should poke in for a moment to let everyone (or at least everyone who still visits) know that Patty is still going strong. She very much enjoyed a much-needed break from work, and had a wonderful holiday with our kids. Her medical reports continue to be incredibly positive. Wow...it's still hard to believe.

I'll try to post some recent photos soon. Happy New Year, everyone.

Love,
Brian

A bit short of breath today

Hi everyone:

Patty has had some minor struggles with her breathing today, and is feeling a bit run down. Of course, in this season of colds, the flu and such, this could mean nothing at all, but it does inspire a degree of anxiety. I've grown quite accustomed to a life with Patty that really doesn't include hospitals, home health nurses and the like anymore; I'm hoping we'll go a good long time before Patty again has any need for such interventions.

We have been slowly preparing our home for the holidays. Our inside lights and decorations are finished, and I've been gradually working through the outdoor lights. We are looking forward to the arrival of Devin and Colin on December 26; Devin will return to Canada on Dec 31, and Colin will stick around for another week.

That's about it for now; please keep your fingers crossed that our patient has a symptom-free holiday season.

Love,
Brian

Still going strong

Hi everyone:

Well, it's been nearly a month since I last posted an entry. Patty is still doing well. On Saturday night, she had a pretty strong arrhythmia -- her first in weeks -- which we both found a bit unsettling, in large part because such symptoms have truly become anomalies. Other than this one blip, Patty has enjoyed a nearly spotless record of good health for many weeks. She still needs her afternoon nap most days, but otherwise has energy levels similar to what she enjoyed before she became sick. Doctor visits usually include some head-shaking on Dr. Costanzo's part; she still finds it hard to believe that Patty has experienced so complete a turnaround. We're keeping our fingers crossed that this positive turn will last for years. Again, thanks to all for your prayers, for your kindness and generosity and for your continued good wishes.

Love,
Brian

Three years

Hi everyone:

Thursday of this week (November 8) represents the three-year anniversary of Patty's heart attack. You may recall that she had the attack on the first day of the new term, before she had a chance to greet a single student. Needless to say, even the passage of time has not greatly diminished the freshness of those memories. In many ways, though, we've moved forward, particularly with Patty doing so well of late. Although the sound of a siren still fills me with dread, I'm learning to resist the urge to call the school each time I hear the sound in the distance. For her part, Patty has promised not to finish any photocopying if she has similar symptoms in the future. The kids are doing just fine; even Connor, our resident worrywort, rarely has problems settling at night.

Yesterday, Patty started a new term, and I was of course nervous, even though logic would suggest I had no good reason to worry more about yesterday than about any other day. She returned home in one piece, and in pretty good spirits, although the start of a new term almost always has its associated frustrations.

We are still amazed at this gradual but steady transformation within Patty--from a person who could barely walk a block without gasping for air to a more-or-less normal person again. Based on what we've read, heart failure patients sometimes stabilize; they don't typically improve, and certainly not so dramatically. I'm not complaining...just knocking on wood a tremendous amount.

Love,
Brian

Checking in

Hi everyone:

Patty continues to impress with her health rebound. We visited Midwest Heart today, and they were able to again titrate Patty's dosage for her ACE inhibitor and beta blocker, and are shortening the timeframes between the increases. Provided Patty continues to tolerate these bumps in dosage, they will keep increasing the amounts until she is in a desired range. With the beta blocker in particular, Patty is a long way from the ideal.

The photo to the left was one of many I took of Patty during a recent field trip to Silver Springs State Park. I was so pleased to see Patty in action again, and I know that she feels most complete when she is teaching. She has wished aloud that she could teach full-time again, but I'm pleased that she is phasing back into these demands...no sense tempting fate. Having said this, if her health continues to stand up, she should be able to take on a full schedule next school year.

All things considered, our family is seeing 2007 as a pretty good year...knock on wood.

Love,
Brian

P.S. Please feel free to share comments, even if the postings here aren't coming fast and furious...Patty still gets excited every time she notices there's a comment.

Overeaters Not-So-Anonymous

Hi everyone:

Tonight, Patty and I celebrated the wonderful news about her improved condition by sharing a special bottle of wine Patty had purchased as a gift for me three years ago. We had been saving the wine for a very special occasion, and decided that there really aren't many circumstances that could be regarded as more special than what would seem to be a new lease on life. With no chemotherapy or other nasty drugs in her daily medicine regimen, Patty has gradually regained an appetite that had long been compromised. We ate a fairly substantial early dinner tonight, and then whipped up a potato/leek/thyme/gruyere cheese pizza about half an hour ago (trust me, you WANT this recipe.) Patty, who typically is a fairly light eater, scarfed back six good-sized slices without hesitation! All is well...

Love,
Brian

P.S. As I am reading this draft back to Patty, she will almost certainly be worrying that I'm making her sound like a pig. If this stays in, you'll know I was right...

Something that wasn't supposed to happen

Hi everyone:

Patty had a telephone conversation with Dr. Costanzo on Monday afternoon. Based on the results of the exercise stress test, the echocardiogram and Patty's latest visit to the doctor, Dr. Costanzo has taken Patty off the transplant list for the foreseeable future. In fact, the doctor is recommending no further action be taken at this time other than increasing certain medicines that should protect Patty's heart going forward. Patty has somehow moved from a near-critical case to a simple heart failure management patient. How's THAT for an update?

Dr. Costanzo said that she had never seen a situation like Patty's before, where someone was so severely ill and then rebounded so completely. Almost all medical literature suggests that once heart failure begins, it typically gets worse and rarely gets better. The doctor won't even really guess why this has happened. Patty credits her mother, father, Ellen, Carrie and others for playing the role of guardian angels. I'm not sure what I believe, but I am very happy to hear some good news for my wonderful wife. We're realistic, of course -- Patty still suffers from fatigue, and she could have problems in the future -- but for now our patient is choosing to regard this as a miracle.

With this news, the infrequent postings may become even less frequent. I will pop in with a note from time to time, because I'm sure there will be other news to share along the way. I will certainly pick up the pace again if Patty's health slips at any point, but we're hoping that will never be the case. I cannot tell you how much it means to us that all of you have been checking in and pulling for Patty and our family. She is remarkable, and I again look forward to a long life with her.

Love,
Brian

One from the patient

Hi everyone:

This weekend is one filled with activities surrounding our high school's Homecoming. As we're the parents of a 14-year-old freshman (and a 16-year-old junior), we decided to immerse ourselves in Homecoming activities -- we did so in part because I have obligations to the school, and in part because we're being mother hens.

Tonight we all attended the football games, because I was hosting a face painting booth at which Patrick and several other NAHS students were working. PJ worked like a dog the whole time, and displayed a level of maturity that both surprised me and made me beam with pride. It was a successful evening -- we made a surprising amount of money, especially considering we were charging two dollars per face.

Tomorrow's festivities include the Homecoming Dance, which both Brian and I are chaperoning, and PJ and Kelly are attending. The preparation for said dance will likely be as exhausting as the evening.

I've been feeling just great these days, which is fortunate, because these activities are exhausting to everyone; I'm surprising myself and others by how well I am faring.

That's all for now; thanks for continuing to read this blog. Sorry this is such a boring entry to the collection; however, I've come to believe that BORING = GOOD, at least as the content of this blog is concerned.

Love,

Patty

PJ at work (the first of many customers)

Mr. Jumbohead

Three faces of...

A few funny heartbeats, more meds, etc.

Hi everyone:

Patty met with a nurse practitioner at Midwest Health (Edward Hospital) this afternoon. I had mentioned previously that Dr. Costanzo was attempting to increase Patty's dosage of both beta blockers and ACE inhibitors; this appointment was a check-in to evaluate whether further increases were possible. Last time, Patty's ACE inhibitor (lisinopril) dose was upped; this time, she's been asked to take a larger dose of her beta blocker (metoprolol). We will of course continue to monitor her blood pressure, but so far, so good.

One interesting thing (well, interesting to me, anyway) is that Patty has experienced a handful of minor arrhythmias over the past few days, after a fairly long stretch without anything that felt irregular. Unless I'm mistaken, increasing an ACE inhibitor or beta blocker dose will typically reduce the number of arrhythmias. Interesting...not necesarily meaningful, but interesting...

Patty and I are planning to chaperone the first-ever OEHS Homecoming Dance this Saturday, much to the dismay of our daughter, who finds the prospect "embarrassing." Patty noticed last night that she has plans for Thursday, Friday and Saturday nights, in addition to her workday. I suspect that Sunday will be a major decompression day. Patty has more endurance than in the past, but she still has her limits, so we'll just have to see how things go.

Only about five months now until Spring Training...Go Sox (sigh).

Love,
Brian

Update? Well...no...not really

Hi everyone:

I just wanted to assure everyone that if I'm going for long stretches without writing, chances are that everything is just fine. Whenever there is anything meaningful to report, I'll do everything in my power to provide updates here. We have not yet heard back from Dr. Costanzo about the stress test results, so we still don't have an official position about whether or not Patty will remain on the transplant list.

As usual, I have little to report. The most exciting thing that has happened around here is that I jokingly said I was going to flick a piece of popcorn off my hand into Connor's mouth about six feet away -- and then fired it directly onto his tongue. PJ, who had a perfect view of the action, almost fell off his chair.

We have been homebodies most nights; we recently saw The Wind that Shakes the Barley (very good) and Bug (very bad). The kids are gone for the weekend with Steve, so we'll probably get caught up on some other films we've wanted to watch. There, now you're completely up to date.

Love,
Brian

Again, little to report

Hi everyone:

As has been the case for some time now, it seems, there's little to report. Patty is busy, I'm busy, and the kids are busy. On the health front, Patty still seems to be holding her own quite well; she seems pale some days, and tired others, but that's to be expected. All in all, things are going pretty well right now for our patient. More as we hear it...

Love,
Brian

Blah, blah, blah...ahem...blah, blah

Hi everyone:

We exchanged emails with Dr. Costanzo yesterday. We enquired about the results from the stress test and echocardiogram; she replied to let us know she was at a conference and would get back to us on Thursday. So, for the time being, I guess no news is good news.

Patty continues to do well; fatigue seems to be the only recurring theme these days, and even that seems manageable. On a typical day, Patty leaves for work at 6:45 am and gets home just before noon. By 1:00pm most days, she dozes off on the sofa. Some days, she needs to go back to the school, so her nap is abbreviated to an hour; otherwise, she'll rest a little longer. Our evenings typically end now sometime between 9pm and 10pm, much to the amazement of our kids, who had been conditioned to consider us nighthawks.

On a good day, we sneak away from the kids for 2o minutes and go for a walk in the neighborhood; this photo is from Monday.

More soon...

Love,
Brian

Good news

Hi everyone:

Congratulations to Rachel, Peter, Ben and Sam on the latest addition to their family...baby Anna. She arrived at 10:29 pm yesterday, and weighed in at 7lbs, 10oz. I'm pretty sure this is the 100th grandchild of Joan and Patrick...give or take.

Love,

Brian

P.S. Other than some slight dizziness associated with the increase in Patty's ACE inhibitor dose, Patty has been just great lately.

Dancing again...

A somewhat surprising doctor visit

Hi everyone:

Patty had her routine appointment with Dr. Costanzo yesterday, although "routine" turns out to be a huge misnomer. The doctor said that based on Patty's present condition, she is re-evaluating whether or not Patty should stay on the transplant list; in her words, "I think you're too healthy for a transplant right now." Without using words like "miraculous", she did say that she continues to be truly surprised at how remarkable Patty's turnaround has been since last year. Her heart sounds relatively normal through the stethoscope, and her lungs sound clear. Dr. Costanzo needs the results from Monday's stress test and from an echocardiogram scheduled for this Friday before she will make concrete suggestions to the doctors at UCH.

So, if thoughts of transplant are moved to the back burner for a while, what's next for our patient? First, they want to increase her dosage of beta blockers and ACE inhibitors, two classes of drugs that have positive effects on damaged hearts. Historically, Patty has not tolerated these drugs very well -- they have caused her blood pressure to plummet. She is going to be monitored very closely, and the doses will be increased very slowly. Patty has also been given the blessing to do aerobic exercise (walking, inline skating, etc.), but no weight training, sit-ups or crunches. Patty hopes that exercise will give her more energy to tackle her work days.

Dr. Costanzo also wants to make the case for upgrading Patty's pacemaker to a biventricular device, so that it more evenly regulates the motion of the right and left ventricles. Biventricular pacing has been shown to reduce the amount of heart remodeling that takes place. Finally, Dr. Costanzo is considering Patty for a study that could involve wrapping a section of Patty's heart with a Paracor HeartNet (http://www.paracormedical.com/ourTechnology01.asp), a mesh device that reinforces the walls of the heart. This could later be removed if a heart transplant again becomes a priority.

The hope with all these activities is to postpone the need for a transplant as long as possible, at which time doctors may be in a position to approve the heart transplant with accessory liver transplant (I discussed this briefly on an earlier date.) Dr. Costanzo is very enthusiastic about the promise of this as-now experimental treatment.

I then presented Dr. Costanzo with a "what if" -- what if we receive a call over the next couple of days telling us they have a heart for Patty; in essence, she said, "What have you been doing with all the calls you've been receiving so far?" Point taken.

We are cautiously optimistic about all of this. Comparing the Patty of today to the Patty of last summer is a night-and-day proposition; she really is doing remarkably well. We are inclined to be a bit guarded in our hopefulness, though, because we witnessed Patty doing very well before, only to see her condition take a sudden downturn. For now, though, this seems like the best possible news, so we'll take it as a real plus and go from there.

Thank you, everyone, for everything you have done and continue to do to help our family. Patty, the kids and I could not have made it this far without your kindness. I'm happy for my wife and friend; she totally deserves this good news.

Love,
Brian

In the spotlight again

Hi everyone:

Patty picked up an additional 15 minutes of fame this past Sunday; the Aurora Beacon News printed a follow-up piece that updated the stories of three people in our area, one of whom is Patty. If you look closely at the picture to the right, you can see the large photo of Patty working with one of her students; below the fold was a fairly detailed update on Patty's status. You can access the story online HERE.

Patty has her exercise stress test today, and appointment with Dr. Costanzo tomorrow; I'll catch you up if there's anything to report.

Love,
Brian

More tests

Hi everyone:

On Monday after work, Patty will be undergoing an exercise stress test at Edward Hospital to evaluate the current condition of her heart. Patty hates this test, so she's not especially thrilled. I presume we will hear results on Tuesday when Patty meets with Dr. Costanzo.

If the stress test suggests that Patty's heart is holding its own -- that is, it shows no further signs of deterioration -- doctors may be able to indefinitely postpone activities designed to reduce Patty's antibodies. Since these activities have thus far done little other than to render Patty sick, we're hopeful about this outcome. Dr. Costanzo may also opt to do a right-heart catheterization, to further evaluate Patty before making decisions.

If I understand correctly, the plan would then be to continue to hope that a negative crossmatch would become available for transplant; in the interim, we would continue to keep our fingers crossed that Patty's heart will sustain her. Given her recent track record, I'm encouraged.

Patty and I were interviewed yesterday, and Patty was photographed today, for a short follow-up article in the Aurora Beacon News. I'll let you know when the article comes out.

Love,
Brian

Holding up

Hi everyone:

We're half-way through Patty's second week of work, and she's holding up pretty well. Fatigue continues to be a factor, but as long as our patient gets a nap during the day and heads off to bed relatively early at night, she seems to have sufficient stamina to manage two blocks of school. Patty teaches Patrick in her first class each day, and I've been impressed by the work he's been producing; I'm not sure if the laurels are more deserved by teacher or student, so I'll just say that I'm proud of them both. Kelly and Connor seem to be adjusting very well to their new schools -- he to junior high, and she to Oswego East (with Mom.)

I've been trying to find some information about the most recent possibility posed by Patty's doctors -- that of transplanting a section of liver (an accessory transplant) at the same time as a heart, even if a positive crossmatch was evident. I presume the intent here would be to somehow fool Patty's body into thinking the heart was appropriate because of the presence of the liver segment; of course, I'm just guessing. The UCH team has cautioned us against putting too much stock in this right now, because they are only now starting to consider its viability. There is no research posted on the internet that I could find. To be honest, the prospect of this is terrifying to me, although I want them to make Patty truly well one day. I'm so happy that she has been so tough, because that seems to give her (and her doctors) time to come up with possible answers.

Patty has an appointment with Dr. Costanzo next week, at which time we should have additional insights to share. Thanks for sticking with us...it's nice to know there are people out there pulling for Patty on a day-to-day basis.

Love,
Brian

Some pics from Luke/Nicole Wedding Celebration: The Sequel

Sam & Neil


Yours truly


Kathleen & Valerie