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

Connor's thoughts

This summer was the best summer I ever had. My favorite part was when we went to Florida. We did a lot of other things, too, and my Mom got to do most of them with us. My Mom is doing so much better; she can do a bunch of stuff with us now.

I will tell you my favorite parts about Florida: we went snorkeling and we stayed at a really nice hotel. But my absolute favorite part was when we went on the airplane. That was my wonderful summer with my family.

Love,
Connor

Yup...more of the same

Hi everyone:

Little of consequence transpired today. Patty tackled some domestic chores (the cleaning that I don't even realize needs to be done, mostly), and then cooked a from-scratch dinner for the kids. She really enjoys cooking for the kids when she can, although I think her efforts are underappreciated at times. I alternated between expanding a mailing list for our business and continuing a bitter monologue about what needs to be done to restore the Sox to glory, or at least a semblance of decency. The kids are all doing well. Wow, could my blog entries be less interesting? I'm actually embarrassed.

It seems like such a long time ago that we were sharing what seemed to be an endless stream of frets and worries. We would happily have gone without all that mess, but the events sure provided some intriguing copy for a while. Patty and I have both noticed that the thoughts of hospitalization, advancing heart failure, transplant and such are becoming more and more abstract and remote as weeks and months pass. These days, I usually think of Patty as a very sleepy version of the pre-MI Patty, but I seldom mentally connect her fatigue with an illness anymore. Do you suppose that's healthy, or foolish? In my sunnier moments, I imagine that Patty's heart really is recovering, and that a transplant may no longer be necessary; that would be wonderful.

Tomorrow, we're heading to Evanston for the Chicago-side version of the Luke/Nicole wedding celebration. On Tuesday, Patty will start week two of her school year. I think she's having to shake out some work cobwebs that are a bit frustrating, but she really does seem happy to be back to work.

Love,

Brian

P.S. I did not end up with the MegaMillions jackpot ($330 million) last night. I was pretty sure I was going to win.

Catching up...on the run

Hi everyone:

This week has been a hectic, crazy one across the board. Patty and the kids are back in school, and I have been working on a project. Patty has been finding the days tiring, and she has little in the tank when she gets home, but I think she's happy to be back at work nonetheless. Most of our evenings end much earlier than in days past; our opportunity to be nighthawks has now moved to the weekends.

On to health matters: Patty's heart seemed to be beating fast this morning, and she was shaky; this was disconcerting, but it seemed to pass quickly and without any ongoing problems. Other than that, the only health concern was a recurrence of the sore right foot -- a problem that was painful enough to keep Patty awake one night. Mostly, though, she appears to be doing pretty well.

Love,
Brian

A new driver

Hi everyone:

We have been having a relatively uneventful weekend. School starts for the kids this coming Wednesday, and for Patty day one arrives tomorrow. I think she's excited; her plans for the coming weeks have been a frequent topic of conversation. I will of course worry about her incessantly, but she has promised to pace herself and ask for help when needed. I know that students and colleagues are happy to see her back at work. I hope she has a long, healthy stretch.

On the topic of worrying incessantly, PJ passed his driver's exam this weekend, and promptly went off on his first solo drive (as we held our breath.) So far, he has proven to be a pretty responsible driver. This, of course, does little to ease the cold terror.

That's all for now.

Love,
Brian

A medical update (of sorts)...at last

Hi everyone:

Patty is having a less-than-stellar day today; her stomach is upset and she is shaky. Her original plan was to attend a faculty event this evening, but the combination of her condition and the brutal heat are likely to keep her home.

We did finally get some response from Patty's doctors. They want to do an exercise stress test and a right heart catheterization to evaluate the condition of Patty's heart. The thinking is that if her heart seems strong enough to endure for some time without a transplant, they may be able to stop focusing on as-yet-unsuccessful attempts to reduce her panel reactive antibodies. Instead, if Patty later has a downturn, they may attempt an experimental procedure whereby they would transplant both a heart and a piece of the donor's liver; the thinking, I believe, is that they may be able to trick Patty's body into accepting an otherwise less-than-ideal organ. This all sounds a little scary, but there don't seem to be an abundance of other viable options. We are so fortunate that Patty seems to be doing much better than anyone expected.

Love,
Brian

S-A-T-U-R...D-A-Y...Night!!

Hi everyone:

And tonight's trivia question is -- who performed the song with the lyrics from the subject line? If you got it immediately, you're getting on in years.

This is certain to sound like a broken record, but again I apologize for the stretches between blog entries. Patty's mind and energies have been focused on her part-time return to work (just two weeks away), and I have been working crazy hours trying to drum up new business; in fact, this writing is a quick break from developing marketing materials. My slump these days is akin to that of the White Sox; hopefully, we'll both have a strong finish to the year.

On the health front, there's not a lot to report. Patty is still tired much of the time, and continues to need her naps through the day. Tonight, she is experiencing some unpleasant cramping in her stomach. From time to time, her hands are shaky, and she experiences some dizziness if she moves too suddenly; otherwise, she's still mostly holding her own. We do worry about how well she'll fare when she goes back to work; I really hope that Patty can let herself fall back on others for support when needed.

We are both frustrated with the holding pattern Patty seems to be in; although we're grateful that she isn't obviously declining right now, we worry about a scenario in which she may need a heart immediately, when her antibodies remain a hurdle (one that nobody seems concerned about addressing anymore.) We both dream of a day in which health, financial and other issues can take a back seat to just getting the most from life.

Love,
Brian

P.S. The photo is actually from other night; Patty had laughed herself into tears at her witty retort to something I had said. I just love when Patty cracks up like this.

A quick late note

Hi everyone:

I was mortified to find a typo in yesterday's post; of course, fixing it became a priority. Feel free to mock me any time you notice an error; I'll dwell on my failure for the rest of the day. Patty had a pretty good day today.

Love,
Brian

Under the weather

Hi everyone:

Devin and Colin returned to Canada this morning; of course, we're a bit blue to see them leave. Kelly seems to be especially affected by the departure; she and her brothers from Canada have become pretty close. Kelly and Patty accompanied me this morning to take Devin and Colin to the airport.

Patty is feeling under the weather today, as she was for much of yesterday. She has been feeling nauseous and tired, and has experienced some minor swelling in her hands. She did, however, muster enough energy yesterday to visit the zoo. Such visits must necessarily be restricted in length because of Patty's stamina, but I know the kids are happier when our entire family is together. We took several photos of the kids goofing off at the zoo; they really all seemed like a bunch of happy little kids for those few hours.

As I write this, Patty is taking a nap (her second of the day -- see, I told you she was tired.) I am working on marketing for the business while also watching a huge pot of pasta sauce I've been working on. And that's our day so far.

Love,
Brian

From the zoo

Another uninspiring update (sorry)

Hi everyone:

As has been the case with most of my updates, I don't have much to share. Patty continues to fare pretty well, all things considered. Her hands get a bit swollen from time to time, and her face also seemed puffy yesterday, but she hasn't had many overt symptoms of heart failure recently. When she worked at the school the other day, she experienced dizziness when she stood up quickly, but these are small matters compared to what we've seen in the past.

When Patty's ICD was interrogated the other day, the reports suggested that since the last time the unit was checked, she has had no situations in which the ICD was close to delivering a shock. Let's keep our fingers crossed that these good times last, because it doesn't seem we're any closer to getting a new heart for our patient. We don't even hear back from most of Patty's doctors anymore, even if we write to them directly.

We have been enjoying Devin's and Colin's visit, although the time seems to be slipping away very quickly; their return flight is on Tuesday morning. We would have liked to have done more as a family during their stay, but any activities for seven people get pretty expensive during tighter times. We did use some passes we had been given for Wizard World Chicago, a huge comics/anime convention held near the airport (Neil came in Patty's place), and we plan to go to Brookfield Zoo tomorrow. On other days, we make at least one foray over to our friends' pool, or play ladderball or catch in the yard. All in all, it's been a memorable visit for all of us. I just wish time could stand still for once.

Love,

Brian

Making the most of our summer

Hi everyone:

My apologies (yet again) for not writing over the past couple of days. The boys have less than a week of visit left before returning to Canada, so I have been trying to juggle time with the five kids and the pursuit of client projects. With so little happening on the health front, the blog sometimes gets pushed aside. Please know that if anything important happens as concerns Patty's health, I will do my best to post it here promptly.

Speaking of health matters, Patty does have an interrogation of her ICD (defibrillator) scheduled for this afternoon; this doesn't usually yield anything surprising. Other than that, Patty has been doing well. She has had some inexplicable aching in the bones of her right foot, and some patichiae on her legs, but neither seems significant as regards her heart.

On Monday, our family visited the Museum of Science and Industry, and then the kids sat with Patty in a fast-food joint while I met with a couple of former colleagues about a small potential project (please keep your fingers crossed.) Since then, we've focused primarily on staying cool, with thanks to our friends who have been generous with access to their pool. Today, Patty, Devin, Patrick and Kelly are at the school getting Patty's classroom ready for the start of the fast-approaching school year.

From time to time, I have joked on the blog about Patty's neatness/cleaning habits. I think we've found the new prime example of this: on Sunday, when our family had finished lighting birthday candles and was singing Happy Birthday, Patty briefly walked away from the cake to rearrange a couple of towels and wipe a surface. We actually stopped singing for a moment to ask her just what she thought she was doing. Crazy...

More soon...

Love,

Brian

Colin & Brian plotting next steps at the museum

Birthday girl (seconds after the towel position was fixed...whew)

Happy Birthday to Patty

Hi everyone:

Today is Patty's birthday. It wouldn't be appropriate for me to discuss specifics of her current age, but if you look back on the blog exactly one year, you'll see that on that date she had just turned 45. Our patient has been relaxing for much of the day; the humidity is so brutal that she wouldn't even think about heading outdoors.

We (me, Colin, Kelly & Connor) picked Devin up at the airport this afternoon. His flight was a mere 45 minutes late -- a much better outcome than Colin's 10-hour nightmare a few weeks ago. It is so nice having all seven of us together, even if the visit will only be brief. I am still the tallest person in our immediate family; I suspect this will be the last time I'll be able to make this claim.

Our plan is to have a nice dinner at home for Patty tonight, along with some birthday cake.

Late tomorrow afternoon, I have a meeting downtown (one that will hopefully lead to some work.) Patty and the kids are planning to come along, so that we can take in some family activity prior to the meeting.

That's it for now. I'll try to get some pictures of our patient scarfing down some chocolate cake.

Love,
Brian