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.