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

An unsettling morning

Hi everyone:

Patty's early morning was a bit disconcerting; she was feeling profoundly nauseous when she awakened, and her heart was racing. An hour or so later, the symptoms had abated, and have not returned, so perhaps any worry is without merit. Often, we wonder if what she is feeling is an "under-the-weather" day like anyone can have, or if her symptoms are related to heart failure. Even when she's feeling well, which seems to be the norm rather than the exception most days (knock on wood), an unexpected sniffle or ache in the leg always gets our attention.

Patty has been a homebody today, as has been the case most days this past week. Between the oppressive heat and the excessive swarms of biting insects, we've found little incentive to venture out on walks lately. Given that Patty's swelling and breathlessness have both been at bay for a few days now, we have thought it better not to look a gift horse in the mouth.

The most exciting aspects of this coming weekend will be Devin's arrival and Patty's birthday, both of which will take place on Sunday.

Love,
Brian

Battling bureaucrats

Hi everyone:

Patty spent part of her day dealing with issues associated with her return to work. Although the official start of school is the final week of August, Patty cannot start until September 1, because she would compromise her eligibility for disability benefits if she had to take time off work during the school year (such as, for example, if she received a donor heart.)

Our patient has had a pretty decent day, overall; aside from some fatigue and a little swelling, she was just great. We probably will opt against a walk again tonight, because the heat and Patty don't really get along.

Love,
Brian

A visit from Nora and MB

Hi everyone:

Patty has stayed indoors all day today, so her swelling and shortness of breath have not been factors as in days past; we may opt against a walk tonight so as not to tempt fate. MaryBeth dropped Nora off for a visit, and is joining us for a pasta dinner that Patty has been preparing. Other than a short run to the library, and some fun next door in our friends' pool, we've had yet another mostly uneventful day. More chills and thrills soon...

Love,
Brian

Slow Sunday...

Hi everyone:

Patty continues to experience mild swelling in her hands, and some challenges with her breathing, but otherwise is faring well. We went to the local pool today, and for a walk this evening; Patty is trying to be as active as possible in the hopes of improving her stamina before returning to work. We still have heard nothing back from doctors, so the future of Patty's treatment is uncertain.

I'd share more, but, well, there just isn't much worth mentioning.

Love,
Brian

A day at another park

Hi everyone:

Patty, the kids and I were the guests of our beloved White Sox on Thursday; what's more, the Sox were kind enough to pull out a ninth-inning victory over the Tigers (and a third victory in the five-game series.)

As you can see, the club was very kind to Patty. We were given really good seats, and Patty received items signed by A.J. Pierzynski and Jermaine Dye, her two favorite Sox players. PJ was not able to attend, because of a commitment at school, so Kelly's friend Allison came in his stead.

We had a great day. The only downside was that the heat and humidity were a bit hard on Patty. Her fingers were swollen for some of the time, and we even had one scary moment -- when the Sox won the game, Patty jumped up to celebrate, and sat right back down because she thought she was going to pass out. She had no further complications, but it was a bit unsettling to observe.

Yesterday, Patty continued to have mild swelling in her fingers, and has had some challenges with her breathing. For now, we're chocking this up to the heat and humidity, although I hope this is a short-lived situation and not an indication of heart failure progression.

With MB's help, Patty has been sorting through some confusion surrounding her return to work. There has been some odd administrivia around Patty's eligibility for disability payments when she returns to work (to make up for the fact Patty is not fit enough to work full-time,) along with the protection she can expect if she has to go back on disability in the future. Insurance companies and retirement/disability programs, it would seem, are not in the business of being the friends of their members.

Please post comments when you get a chance; Patty still checks for them on a regular basis, and loves to hear from those who visit the blog.

Love,
Brian

Colin, Connor & Patty at the game

Mediocre meanderings

Hi everyone:

As before, our home continues to be a theatre of the mundane. Most days, Patty alternates between resting and tackling chores around our house; she continues to do well much of the time, although she still needs sporadic naps to get through the day. I have been trying very hard to drum up new information design work, but have been frustrated lately by how much things have slowed down; hopefully, I'll find myself atop another wave very shortly. For my work, summer and year-end always seem to be slower than the spring and fall months.

Patty is looking forward to her part-time return to work in a month; we can certainly use the break on the health care premiums. I know Patty will be happier when she's teaching again. I still worry about her stamina, but I know she doesn't want to be home-bound if she feels she can be productive.

PJ continues to work on the school summer play, and Colin and I have grabbed an hour here and there to catch up on months of missing each other. Kelly and Connor are still camping, and are happy today that some of their Krawczykowski cousins are joining them. We will have these kids back on Wednesday. Devin arrives on Patty's birthday, August 5, but can only stay for nine days.

I'll write again soon...take care.

Love,
Brian

Long time, no see

Hi everyone:

I think this may be the longest stretch without a new blog entry, simply because there has been almost nothing worth sharing. For the most part, Patty is doing well. One day, she may be very tired and sleep for many hours at a time; on the next, you would be hard pressed to believe she has a heart condition at all. We have been enjoying Colin's visit, and are looking forward to Devin's arrival in a couple of weeks. Kelly and Connor are camping with Steve; PJ stayed back because he is doing makeup for a summer play at his school.

My friend Rocky recently left a message citing some interesting research into the repair of damaged hearts using a special treated patch. We had asked Patty's doctors about similar, innovative approaches in the past (for example, some success has been realized in letting a damaged heart "rest" using a special mesh sling); unfortunately, Patty's doctors have said that her heart is too damaged, and too much time has passed, for such approaches to work. I always find this surprising; I keep thinking, "If her heart is such a mess, then why is she functioning as well as she is?" This is a question we keep asking her doctors, too.

Please keep the ideas coming, though...perhaps one day we'll find an answer that will work for Patty. You can find information about the patch at MedicineNet.

Love,
Brian

A day at the park

Hi everyone:

I haven't had much opportunity to write lately, because we seem to be especially busy, and there hasn't been a single thing of import to report on the medical front.

We went to Great America on Friday, courtesy of Jim at Six Flags. Patty was able to go on a couple of the tame rides, and the kids went on just about everything. I'm a coward about most rides, so I mostly logged a lot of miles walking around the park carrying backpacks and water bottles. I have some other funny stories to share, but I'll save them for when I can write at length.

The kids, except for Colin, are with Steve for a summer break. PJ will be back on Wednesday because he is starting work on a summer play; the other kids won't be back until later in the month. More soon...

Love,
Brian

Healing blizzards

Hi everyone:

As you can see, we pulled out the big guns yesterday in the hopes of bringing Patty around -- a medium Butterfinger Blizzard from DQ. This was, of course, a standard part of the early chemo regimen, and remains a fairly reliable standby for those days in which Patty's stomach betrays her. The treat, along with a few bites of chicken noodle soup, represented the sum total of Patty's meals yesterday.

Patty never really bounced back yesterday (even with the treat), but she's much improved today. Her hands are pretty shaky, and she still feels weak, but she is far less nauseous. We are still waiting to hear back from her doctors about next steps; I suppose we should regard the lack of urgency in responding as a good thing. Days like yesterday do bring back much of the worry that had been set aside for quite a while.

Have a good Thursday.

Love,
Brian

Colin is here, Patty is miserable

Hi everyone:

Yesterday was a nightmare day, in some respects. Patty, Kelly, Connor and I arrived at O'Hare just before Colin was scheduled to arrive, at 3:45; unfortunately, Colin's plane didn't land until 10:19pm. In the midst of this wait, we needed to make a trip back to our home for Patty's meds, so we made two full trips to the airport yesterday. Having said this, our day wasn't nearly as grueling as Colin's -- he sat on the tarmack for two extended periods, the first of which was more than four hours. We were relieved, though, that Colin did ultimately arrive, and I have been thoroughly enjoying having him around. He has grown since his last visit, and is now only an inch shorter than me. He and his cousin Danny share a January 11 birthdate, and also seem to share body types...I wouldn't want to meet either of them in a dark alley.

Today, Patty is feeling miserable. She is congested, very nauseous and weak. She managed to make the move from our bedroom to the family room sofa, but has no energy for anything more ambitious. I checked her blood pressure, which was normal. She is just having one of those crummy days; fortunately, she doesn't have them often.

Love,
Brian

Neil away, Colin on his way

Hi everyone:

Neil left this afternoon after visiting for two days; his visits are always a special occasion for us. Patty overdid things a bit over the past couple of days and evenings (as is her wont), so she spent much of today resting. All in all, though, she still seems pretty strong; I hope this streak just keeps going and going.

Colin arrives tomorrow afternoon. When he's here, our household will be 6/7ths complete, at least for a while. The time always flies when the boys visit, and it seems like no time at all before we're saying goodbye again.

I'm sorry the blog entries of late are few and far between; there just seems to be very little of consequence to share. Perhaps we'll soon have the best and most hopeful of news to share; until then, we'll just keep pulling for Patty's stretch of good fortune to continue.

Love,
Brian

P.S. My ladderball skills are still sorely lacking...both Neil and Patty triumphed over me many times yesterday. I had my revenge when we played Trivial Pursuit.

Neil's visit

Hi everyone:

Neil is visiting. He and I went shopping this morning for Mexican food ingredients, in response to a stated craving of Patty's. Later, we plan to go to the local batting cages for a while. Patty is fatigued today, after staying up pretty late with us last night; by "fatigued", I actually mean still in bed at 12:15. Other than that, there's nothing new to report.

Love,
Brian

A fun Fourth

Hi everyone:

I hope everyone had a fun and safe Fourth of July. We enjoyed the company of many of our neighbors, with whom we fashioned a low-key, pot-luck barbecue dinner. Neighbors near and distant had invested in some pretty good fireworks, so we enjoyed a free show. We also played bag toss and ladderball -- my aim was way off, so I lost every game I played (Patty fared much better.) This picture was taken at around 11pm, after much of the crowd had gone home.

All through the day and evening, I kept thinking that perhaps a donor heart would come through for Patty, but the call never came. As always, I have really mixed feelings when I hope for a new heart for Patty, because I know what that means for another family. I wish doctors and scientists could make more pronounced strides with artificial hearts, so that tragedy doesn't have to be any part of this process. Patty said that she doesn't feel like she desperately needs another heart just yet, so to her the wait is just fine for now.

Patty had a mild, nagging headache yesterday which seems to have lingered into today. She also had an irregular heartbeat for a short time yesterday; it didn't persist, but every time it happens we find it a bit disconcerting. All in all, though, we really can't complain about how she's faring; in many ways, it seems like a mystery (and even a bit of a minor miracle) that she seems to be as strong as she is.

When Patty gets up this morning, I think her plan is to take Kelly to the mall so that Kelly can spend some of the money she has been saving from her birthday and graduation. Connor is at his friend Alec's. PJ will likely leave soon after he gets up so that he can spend time with Kelsey. With any luck, I'll have a very quiet house in which to work. Thanks for keeping Patty in your thoughts.

Love,
Brian

P.S. Colin is arriving next Tuesday, July 10, and will be staying for just over a month. Devin will arrive in early August for a nine-day visit. We're so excited.

Recharging batteries

Hi everyone:

Over the past couple of days, I have been starting to look at airfares for Devin and Colin to visit this summer. As this photo suggests, Devin has been keeping himself occupied with creative pursuits. I didn't think anyone even used clothespins anymore; I stand corrected.

Patty has been struggling with sporadic grogginess and fatigue since our return from Florida. I suspect she's just needing to recharge her batteries after an ambitious stretch of activity-packed days. I didn't help things yesterday by asking her to go to Ribfest in Naperville for a few hours. The Psychedelic Furs, one of my all-time favorite bands, were performing; they still put on a great show after all these years.

We are still waiting to hear from Patty's doctors about next approaches for trying to reduce her antibodies; perhaps it's time for me to drop them a follow-up note.

More soon...

Love,

Brian

Colin & Devin

Back to normal (mostly)

Hi everyone:

This morning has been largely devoted to unpacking from the trip to Miami for Luke and Nicole's beautiful (and touching) wedding. This was an ambitious trip for Patty, to be sure, but she held up very well throughout; only occasional fatigue would betray that she has a heart condition. Aunt Sue hosted our family in her room, which had breathtaking views of both Coconut Grove and of the ocean.

This trip was, in part, a celebration of firsts: the kids snorkeled for the first time (while I suffered my first-ever bout of seasickness); PJ and I ate beef intestines and sweetbreads (for the first and quite likely the last time); I played Wii for the first time, with Mike and Kevin, and discovered that I'm a big fan; and the first of the O'Mara grandchildren was married, thus confirming once and for all that our generation is starting to get old.

Below, just a few of the many photos we snapped during our trip:

The newlyweds' first dance



Just before the wedding



PJ, Myles, Mike and MB



Tommy and Connor getting ready for snorkeling



Eww...



One view from our balcony

Back...but tired

Hi everyone:

We're back in Chicago, with a bunch of stories and a ton of pictures; tomorrow, once I've had a chance to sort things out and collect my thoughts, I'll catch you up. Patty is doing great.

Love,
Brian

Miami

Hi everyone:

We arrived in Miami last night for Luke and Nicole's wedding on Saturday. Things were somewhat chaotic as we tried to balance kids' excited requests with our desire to get settled. Today, we are supposed to join a group for snorkeling, if the weather cooperates. I have a slow Web connection here, so I will sign off for now.

Patty is doing pretty well, although I suspect our schedule may make her weary.

Love,
Brian

Just a quick update

Hi everyone:

Patty is still doing pretty well, although the humidity has kept her inside for much of the time. While we went for a short walk yesterday, Patty experienced some swelling in her hands and had some difficulty breathing; these are just signs that she needs to exercise some caution.

For much of the day today, we have been preparing for the trip for Luke and Nicole's wedding. The kids are excited; we're of course stressed by the details, but will certainly have a good time once we're there. Hopefully, Patty won't have any health challenges while we're away from home, and we won't receive a call about a heart while we're out of range.

Other than that, there's really very little to report.

Love,
Brian

P.S. Go Sox

Parties, Patty posting and passports

Hi everyone:

Yesterday, we attended our nephew Sam's first birthday party. There was quite a crowd in attendance, on what evolved from an overcast morning into a pretty nice, sunny afternoon.

Sam seemed to enjoy my holding him from time to time; I suspect this is is at least partially because my stomach provides a comfortable seat. Starting next week, I'm going to work harder on getting rid of that "seat."

Patty stopped into the office at school today to facilitate a mailing to some of her advanced placement students. I can tell she is enthusiastic about getting back to work, and that this eagerness is increasing week by week.

I'm happy for her, but still a little worried about her stamina. She seems almost as strong as she was early last year, and I really hope she can keep this streak going for a very long time. She has promised me that she will pace herself at work, and will not hesitate to ask for help. Kelly and PJ will both be in the school next year, so Patty should be able to fall back on them as well.

Great news -- Colin called this morning to confirm that both he and Devin just received their passports, so they'll be able to visit this summer. Tammy in the office of Tom Cross has now earned hero status in our home; she pushed and pushed for answers until they finally started to come.

Patty and I are both relieved and excited about the passports -- this will be the longest stretch ever that we've gone without seeing the boys. Kelly asks almost daily about when the boys are coming down; I think she misses them nearly as much as I do. I think I've mentioned this before, but things just seem more "normal" when all seven of us are together, even if they are admittedly more chaotic.

Joe seems to be making a steady recovery after his surgery, although not without some pain; please keep him in your best thoughts.

More soon...

Love,
Brian

One year and counting...

Hi everyone:

Before I discuss the significance of the title for today's entry, Patty and I wanted to share our best wishes for a speedy recovery for Joe, Patty's brother, who underwent an appendectomy last night. I'm pretty sure an entire season of ER could be crafted around the medical travails of the O'Mara clan.

One year ago today, while in the hospital, Patty was added to the UNOS heart transplant list. It seems like so much--both bad and good--has happened since then. It also seems like the wait may continue for a while.

If there's bad news in this, it's that Patty doesn't seem to be any more viable a candidate today than she was at the time she was listed. When Patty's panel reactive antibodies (PRA) were first measured, the results were 65% and 100%. At last measure, they were at 59% and 100%, even after the many interventions that have been undertaken to bring these numbers down. I'm pretty sure the blood of the monster in the film Alien (you know, that burned through flesh and metal?) was borrowed from Patty; she's an antibody machine.

Do you suppose doctors will be able to solve the PRA riddle? Do you think another good heart will come along, in spite of the odds? How will Patty handle the drug regimen after a transplant, when she seems so prone to negative side effects? Are the kids going to continue to keep their chins up? These questions, and several others, remain on our minds. We've long ago resigned ourselves to the likelihood we will always have questions; it just may be that the questions will change from time to time. C'est la vie...

The good news is that Patty seems to have managed surprisingly well for someone whose heart was so severely damaged--as a result, the doctors aren't pushing panic buttons just yet. As long as Patty doesn't have another sudden downturn in her health like she did early last year, and as long as she ultimately does receive a donor heart, this wait may ultimately seem like a blessing, because life after transplant seems like a big scary unknown. Of course, it's easy to adopt the "life is good" mantra right now, because Patty isn't being subjected to chemo at the moment; we'll see if my commentary betrays more anxiety when the next wave of interventions comes along.

Today, we are going to the home of our nephew Sam, who is celebrating his first birthday (Sam is Peter and Rachel's second son). Everyone is waiting on me to wrap this up so we can get going, so...bye.

Love,
Brian

Not much going on

Hi everyone:

Patty continues to fare pretty well. We have been hosting Cindy and her kids for last night and tonight. We went to see the film 1408 today -- I think I was the only one who didn't care for the flick. Connor is already hoping for a sequel. I'll catch up with everyone tomorrow. There hasn't been much to report. More soon...

Love,
Brian

Not even enough substance for a title

Hi everyone:

Patty had a pretty good day. She had a late start (11am), but is still going pretty strong at 11:30pm, and this without a nap.

Kelly's blog entry was nice, don't you think?

We had dinner at our home with Patty's colleague Heather (another art teacher), her husband Ryan (yet another art teacher) and their two young children (art teachers to be?) We also watched several innings of the Sox game...but enough about that.

The one-year anniversary of Patty being listed for a transplant is fast approaching, and I feel like we're collecting questions without getting much closer to answers. I have written and rewritten this paragraph several times, in the hopes I might add some brilliant observation. I gave up -- I just want Patty to get her new heart.

More tomorrow...

Love,
Brian

P.S. Patty just chided me for writing about her late start but not noting how productive she was today -- she went for a walk, did all the laundry, did some cleaning, helped cook dinner and was an enthusiastic host. Boy, was SHE busy!!!

Kelly speaks

Hello:

As you all know, my Dad writes almost all of the blog entries; today, I thought it would be appropriate for me to write one, since I haven’t written one in about eight months. This year I will be a high schooler, and I’m extremely excited that my Mom will be back teaching at the same high school that I will be attending (Oswego East), along with my older brother P.J.

My Mom has been doing well for the past few weeks, without much nausea, serious trouble breathing, or any other “heart attack symptoms.” This is a very good, yet rare, situation and I think I’ve been trying to take full advantage of these days.

We have been doing a lot of things this summer – for example, we saw “The Color Purple” a couple of weeks ago, and Mom saw Stevie Nicks. On the days that we get to do something special like that with my Mom, I forget she even had a heart attack and feel like there’s no possible way anyone could ever separate us. Sometimes, though, I feel overwhelmed by the preparation of my Mom while she waits for a new heart, and I pray at night that it will happen soon. On other days, I just feel really sad that all of this has to happen to her; why couldn’t it be someone else?

It’s not all sad, though. If Mom never had a heart attack, and never needed a transplant, how else would the family get such great gifts like tickets to “Riverdance,” tickets to all different kinds of concerts and sometimes even being able to meet the bands? I think it pretty much all evens out.

This has been more my diary than a blog entry, so sorry to anyone reading this and thanks for listening.

Love,
Kelly

A bit of a rough start

Hi everyone:

Patty is battling both a headache and an upset stomach this morning, and has had moments of dizziness upon standing over the past couple of days. We're presuming these symptoms are more about fatigue than anything else. Thankfully, the episodes of memory loss seem to have been fleeting; since I wrote about them, they don't seem to have happened again.

Yesterday for Patty was split between watching three movies, taking a very long nap (so long and so deep that I checked her pulse a couple of times), and visiting with Jim and Trish.

Love,
Brian

Patty wins the corn-eating challenge

Hi everyone:

Yesterday afternoon, we crossed the street to the home of our neighbors Denise and Kevin, and didn't leave for many hours. We chatted on the patio, cooked burgers and dogs and swam in the pool.

When things wound up at Denise's at midnight, Patty was still feeling social, so we then visited Jim and Trish next door for a couple of hours. Kelly and Connor had three sleepover guests, so we had a full house.

When we got home, Patty was still alert, and I was barely able to keep my eyes open. Needless to say, our patient has been doing some pretty solid napping today.

Patty is normally a pretty light eater. You can imagine my shock yesterday, then, when Patty scarfed down two sausages on buns, a small piece of fish and a cob of corn for dinner and then later ate two more ears of corn and a baked potato. I was amazed. I will say, though, that she was pretty energetic; she even made two trips into the pool. I love to see her feeling like a real person, even if she needs more down time the next day.

In the category of "not sure if it means anything," we were suprised several times over the past 24 hours by Patty's inability to remember details of conversations and events that happened just an hour or so before. I'm sure I'm making it sound more dramatic than it really was, but I will say that we both found it a little strange and unsettling.

We found out yesterday that Patty's most recent PRA numbers, from blood drawn a couple of weeks ago, are unchanged at 59% and 99%. We're not really surprised. Hopefully, one of the few remaining options will bear fruit.

Today, Patty is tired but otherwise faring well. More soon...

Love,
Brian

Denise (who is intimidated by NO trench)



Kelly (who by some strange coincidence got MY good looks)

Dr. Costanzo visit

Hi everyone:

All the photos I was taking of Patty this morning were unflattering, so we decided to try a somewhat different approach--hence, the picture you see here. The mask was crafted around my enormous melon, so Patty's mouth is actually in the nose area somewhere.

Patty had an appointment with Dr. Costanzo yesterday afternoon. The doc agrees that the Rituxan/Cytoxan combo may not be working in reducing the panel reactive antibodies (PRA), but feels it is important to keep trying other options (rather than simply waiting and hoping for a perfect heart.) Dr. Costanzo thinks that total lymphoid irradiation (TLI) is the next logical choice. As always, we heard that this treatment is "generally well tolerated." We shall see...

Dr. Costanzo also noted that Patty's difficulty in tolerating Cytoxan and CellCept presents some interesting challenges after a transplant, because one or the other is typically part of the protocol. Instead, she may have to use one of the "old" immunosuppressive drugs. I am feeling nervous on Patty's behalf, because I don't want her to go through the whole process of transplantation only to find that the drugs she needs post-transplant only make her miserable.

Much to Patty's disappointment, Dr. Costanzo advised Patty against riding on roller coasters or other thrill rides. The issue is not one of fear or excitement being harmful, but a worry about sudden changes in blood pressure that could lead to other hardships. So, if we end up at Six Flags at some point, Patty will be joining me in the observer role.

We're still waiting on news about Colin's passport. The waiting is agony.

Love,
Brian

Worries -- real or unfounded?

Hi everyone:

If you've been reading this blog for some time, you know that I've adopted the belief that any symptoms that Patty displays, however benign they may seem, bear watching. Although she seems to be doing surprisingly well, especially in comparison to this same time last year, I keep fretting whenever Patty experiences shortness of breath or any other odd twinges.

Last night, Patty was bothered by soreness in her legs, even though she had not been especially active. This morning, she is very fatigued, and is still in bed even after a full night of sleep. Perhaps this is just her body telling her it's time to recharge the batteries after a busy weekend. Still, I worry...

Tomorrow, Patty has her regular appointment with Dr. Costanzo. If anything emerges from that meeting, I will of course share it here.

Love,
Brian

Back down to earth

Hi everyone:

After an action-packed weekend, we've settled back into our normal life, at least for a day or two. Patty felt a little nauseous upon awakening this morning, but improved quickly and seems pretty energetic. The kids were returned to us at 1pm, and are out enjoying the sunny day (except for PJ, who I would guess is sitting in front of a TV at Kelsey's house.) I've suggested that I'll get a bonfire going for the kids tonight; with luck, I'll be able to coax Patty outdoors for a while. Kelly is excited because her cousin Amanda plans to visit within the next couple of days. And that's pretty much our whole story for now.

I continue to receive calls about Colin's passport. The latest I've heard is that the Canadian Consulate here in Chicago doesn't think the request made by the passport officials really makes any sense. I'm inclined to agree. Our state representative's office continues to call with updates. Hopefully, this will all be resolved soon.

Love,
Brian

Special weekend Part II

Hi everyone:

Well, Part II of the weekend didn't turn out to be as exciting as Part I, although it was still very fun. Patty, Cindy and I attended the Roger Waters concert at United Center. Originally, we had been told that a short meet-and-greet would be possible, but later found out that they had decided against it. Instead, Patty was given a tour program signed by Roger, and some great complimentary tickets to the show.

The weekend was starting to get a bit long for Patty, so we didn't stay for the full show, although the staging was outstanding and the music was both familiar and well-performed.

Today, we visited Cindy's house for Caleigh's graduation; Caleigh is a wonderful girl, and an amazing student. We had a very nice visit, aside from my new-found phobia about cicadas, to which I was being exposed up close and personal for the first time. I will celebrate their departure. Of course, I was grateful to Brit for showing me that cicadas weren't anything to be afraid of, in the most horrifying and nauseating manner possible:

I am certain I will be plagued by nightmares for a very long time.

Patty's well today, but tired.

Love,
Brian

Special weekend part I

Hi everyone:

Tonight's blog posting isn't going to be about Patty's medical condition (okay, I will say that she's doing well today), about our recent passport woes, or even about the joys and trials of parenting. There isn't even going to be a film review. Tonight was all about fun -- remember the exciting weekend I mentioned? So, for those to whom we didn't blab about our plans tonight, here's a quiz for you.

Is the person Patty is hugging in the photo below:



(a) our daughter Kelly
(b) our friend Cindy
(c) Stevie Nicks
(d) none of the above

Did you guess?

If you guessed (c):



For the longest time, I don't think I've seen Patty dance as much, or smile as broadly, or seem so utterly thrilled with her evening as she did tonight. Patty was treated to a concert by Stevie Nicks (with the kind efforts of Stevie's assistant and her publicist), and then invited backstage. We waited there for a moment--sitting on a sofa in the middle of a parking lot (a bit surreal, to be sure.)

When Stevie emerged from her trailer, she walked over to Patty and then immediately said, "Oh my God, you look just like Meryl Streep...and that's a good thing." They chatted for a brief moment, and then Stevie gave Patty a very special, thoughtful gift that touched Patty deeply. When Patty asked Stevie for a hug and they embraced for nearly a minute, I felt like I was observing one of those Mastercard "priceless" moments. Stevie signed a T-shirt for Patty, and we were on our way.



I would give anything if Patty's every day could be as utterly magical as her night tonight. And she has another special night tomorrow. More soon...

Love,
Brian

P.S. One more moment to share -- Chris Isaak, while performing as the opening act for Stevie, walked around the entire venue, interacting with fans. His keyboard/accordion player also wandered around. At one point, he walked up behind Patty and asked her what flavor slushie she was drinking. When Patty said "Lemon lime -- would you like to try it?" the musician said "Sure" and took a chug. It was both surprising and funny.

Frustration part II (amended)

Hi everyone:

Well, the huge storm we were supposed to get last night turned out to be more whimper than bang; we saw a lot of lightning, but I don't know if we received even a drop of rain.

I just discovered this morning that the easing of the passport restrictions, which has now been enacted, will apply only to U.S. citizens wanting to travel to Canada or Mexico. Canadian citizens (like Colin) will still require valid, current passports. Frustrating...

Patty's not up yet. More later...

Love,
Brian

P.S. Since I posted this message, I received a call from an assistant to State Rep. Tom Cross, who had in turn been in touch with Denny Hastert's office. Although they don't hold much sway over Canadian authorities, it was nice to hear we have their support in investigating options. The regional reps in Canada are also in touch with the Foreign Affairs minister for Canada. I've copied the Candian consulate on our messages. I'm starting to feel somewhat hopeful that this can all be sorted out. Thanks to anyone who is pulling for us on this. Love...B

Frustration across the board (well, pretty much)

Hi everyone:

Today, day one of summer vacation (sort of), was a bit of a frustrating day. The chaos associated with full-time requests from kids is going to take some getting used to. PJ had no school, and Kelly and Connor came home after half-days. Kelly is hosting her friend Allison (she of the photos with Kelly last night) for a sleepover. Connor must have opened and then slammed the front door two dozen times today, each time allowing entry to a fly the size of a chickadee. Ahhh, summer!

I received upsetting news today. Apparently, getting Colin's passport renewed isn't going to be the piece of cake I had presumed. They are wanting documentation that doesn't exist, for reasons I cannot fathom. As things stand, I have only two choices: drive to Canada twice this summer, to pick up and to return Colin (the same passport rules do not apply to ground-based travel) or wait until Colin turns 16 in January before I have him visit (a prospect I cannot even think about.) The former would have some appeal under normal circumstances, but not with Patty waiting for a transplant. Devin is not an issue, because he is already over age 16.

I wrote the Member of Parliament in the region in which Colin lives; hopefully, he may be able to intervene on our behalf. Also, I saw some suggestion that the U.S. government might relax these rules in the near future. Please keep your fingers crossed. Or if any friends from Canada feel like visiting, and don't mind an extra passenger, we'd be happy to give you a comfy bed (okay, an air bed) and fine dining experiences (all the exotic forms of Hamburger Helper) if you'll bring the boys along.

The Sox games are making me insane, to the extent that Patty basically pleads with me not to watch. More and more, as much as I hope against hope for a turnaround game, I am heeding her wishes. Sigh...

On the positive side, Patty and I have an exciting weekend planned. I'll provide the details as soon as I can.

Love,
Brian

Kelly (the high-school student)

Hi everyone:

Kelly graduated from Plank Junior High last night. Here are some pics:

Miserable morning

Hi everyone:

Patty is experiencing some fairly profound nausea today, and may well stay in bed for much of the day. I think that some of her meds do not mix well with some of the food she eats, and the combination wreaks havoc with her system. Fortunately, she does not have the added whammy of the chemo drugs to try to tolerate.

Yesterday, we watched the DVD of The Secret of Roan Inish, an Irish fairy fale. Although the film had been around since 1994, neither Patty nor I had seen it. It tends toward the saccharin at moments, yet overall it is a very enjoyable family film.

Tonight, Kelly graduates from junior high. All through the year she has approached her schoolwork with tremendous energy and enthusiasm (and even a little frustration on those occasions when the grades didn't synch with her effort.) Many times, she worked on projects until late in the evening, and I don't think she passed over the opportunity to complete a single extra-credit project. As of this morning, she has "A" grades in several of her classes. We are so proud of her.

We are grateful that our children are holding up so well at a time in which they could have called for us to cut them some slack. Connor is moving on to junior high this year, a prospect that has us noting how old we're getting. Devin has been working during many of his outside-school hours, and earned a raise just weeks into his job; unfortunately, this same job will restrict the amount of time he can visit this summer. PJ is looking for summer work, and starting into some speech team activities. Colin keeps me up-to-date several times a week on the latest indie music, and still dreams of leading Canada one day. We miss Devin and Colin desperately.

Hopefully, our patient will soon make a rebound, because I can't imagine even wild horses making her miss the graduation ceremony tonight.

Love,
Brian

Some minor breathing struggles

Hi everyone:

Patty is having a less-than-stellar day in terms of respiration, after a night in which her legs were inexplicably aching; the former happens from time to time, and I'm not sure how to interpret the latter. The day before, Patty had some mild swelling in her legs; if this continues, this is a symptom that bears watching. We just got back from a 20-minute walk around neighborhood streets; Patty struggled with her breathing for much of our trek. All symptoms with Patty promote some degree of worry, at least in me; Patty still seems to take most of this in stride. I think she finds it easier to deal with the inevitable symptoms of heart failure than with the illness brought on by chemotherapy and other interventions.

We watched The Italian on DVD last night. I thought the movie was amazing. PJ liked it a lot. Patty was less impressed. My opinion is the accurate one.

Love,
Brian

P.S. Go Sox.

Another busy (and fun) weekend

Hi everyone:

Sorry for missing a couple of days in writing; things have been pretty hectic as the school year has been winding down. On the health front, there's little to report -- Patty still seems to be faring pretty well. She needs to go to Edward Hospital on Wednesday for bloodwork (lipids, etc.), but otherwise has little on the schedule in terms of medical commitments. Based on our last exchange with doctors, I think the plan for now is to just wait for a new heart and hope that Patty's existing heart continues to keep her going. So far, so good.

We had pretty late nights over the weekend, and Patty seemed to come through them without compromising entire next days. On Friday, we took Kelly to get a dress for both graduation and for Luke's upcoming wedding; thankfully, we were good bargain hunters and came away with something nice for relatively cheap.

On Saturday, we visited our friends and neighbors Denise and Kevin; after some coaxing, I spent some time in the pool tossing kids around while Patty relaxed and chatted. Yesterday, we grilled burgers and hot dogs while we hosted Patty's former student Emily, her girlfriend Amanda and PJ's girlfriend Kelsey for a visit. We played ladderball (fun game, at which Patty seems to be an instant pro) and then watched Pan's Labyrinth (first time for them, fourth for me.)

Patty and I set out for a walk early this afternoon. When we left our house, the sun was shining; twelve minutes later, we were running through a torrential downpour to get back to the house. I was surprised that Patty moved so quickly, and with minimal struggles to catch her breath when we arrived home. Without the chemo, perhaps Patty can enjoy a day here and there that, aside from taking a dozen pills, seems "normal."

Love,

Brian

Emily, Patty, Connor (with latex glove "balloons")

Amanda

Info from the docs, and a night out

Hi everyone:

Patty is doing well today after a busy night yesterday. She awakened with some nausea, but her meds pushed these symptoms back by late morning.

We heard back from University of Chicago Hospital late yesterday. One of Patty's doctors gave her blessing for our patient to discontinue the Rituxan/Cytoxan treatments, at least for the time being. As you might imagine, Patty was pretty happy to hear this, because it means she'll likely dodge some major nausea.

The doctor also confirmed that she is receiving specific PRA antigen specificity information each month. If I understand correctly, this means that she is looking deeper than the 59%/99% number into the specific antibody types that are problematic. As she explained, she is trying to see if certain antigens have decreased, either in number or in strength. She feels encouraged by the fact Patty has fared well without the milrinone (the continuous IV she used to lug around,) and by the fact she seems "clinically stable" for now. She seems optimistic that if Patty can continue as she is presently, she has some time to wait for an appropriate donor heart. I keep worrying that we'll have another downturn like last year, and the timetable will become much more tense. Still, I guess the doctor's take is good news, so we'll focus on the positive.

Last night, Patty, the kids and I were the guests of the organizers of The Color Purple at the Cadillac Theatre (thank you, Jennifer.) Everything about the show--the sets, the music, the humor, everything--was amazing. By some strange coincidence, we attended on the same night as a group of teachers and students from Oswego High School, so Patty was able to catch up with a couple of former colleagues.

Before attending the show, we stopped at Parky's in Oak Park, which Patty insists has the best french fries in existence. While I will agree that the fries are good--the massive oil stain seeping through each paper bag will attest to that--I won't go so far as to say they are the best I've ever had. I will say, though, that their burger is pretty noteworthy.

More soon...

Love,
Brian