Monday, July 31, 2006

Devin's radical weight loss program

Hi everyone:

We're missing Devin this summer. He shared these before-and-after photos of his new, McDonald's-approved haircut:


A rough day

Hi everyone:

Patty is definitely not having a high-energy day. Of course, she has the standard headache and nausea. In addition, she has bouts of dizziness, seems to be retaining fluids (as is evidenced by swollen fingers), and her breathing continues to be somewhat compromised. It would seem that even air conditioning cannot fully take away the effects of this brutal heat and humidity.

The rash on Patty's forehead, chest and back is still itchy and sore, and it stands out against her skin because she's pale. We're not taking many pictures these days that pass the test for posting on the blog ("Honey, can I post this?" "No, you're NOT posting THAT!") In spite of all of this, Patty smiles through much of the malaise. She even let me drag her outside for a moment just so I could get a more favorable photo for today's blog entry.

I took a brief break from working today to play with the kids in the neighbors' pool. They're getting bigger, and I'm getting older and weaker, so only Connor and Kelly get to be thrown around anymore. Other than for pool time, though, it's just been too warm to expect the kids to keep active outside.

Patty was not able to visit friends yesterday because our friends' daughter had a runny nose. One of the unfortunate realities is that exposure to a sick child could compromise Patty's ability to get a donor heart, so we cannot take chances. We've had to take a pass on social activities on more than one occasion for this very reason. I think this aspect of Patty's condition bothers her more than much of the rest of it. Colin and I did visit, though, and had as good a time as we could without Patty.

My brother Dave is planning to drive down for a very brief visit this weekend. We have not yet hosted Dave in all the time we've lived together, so this is a bit of a special event. Please keep your fingers crossed that the weather gods smile upon him starting Friday afternoon.


Sad news for Cindy and family

Hi everyone:

Our thoughts this morning are with our close friend Cindy and her family. They are mourning the death of Cindy's father, Daniel, who passed this morning after suffering an extended illness. We offer our deepest sympathy to all who feel the pain of his loss.

Patty, Brian & Family

Sunday, July 30, 2006

The family expands

Hi everyone:

Yesterday was a busy day for Patty. We started out with a client meeting downtown at 1:00 pm, picked Neil up at his restaurant at around 2:45 pm, dropped in on Aunt Sue for lunch at Costa's around 3:00 pm, visited with Neil for the balance of the afternoon and met our son Colin at O'Hare at 8:15 pm. We have Colin until August 16, at which time he'll return to Canada. This time always goes very fast. Unfortunately, we may not see Devin at all this summer -- he starts his job at McDonald's early this coming week.

The day was a pretty good one for Patty, except at those times where she was outside for a couple of minutes -- then her breathing became labored. Fortunately, we stayed pretty close to air conditioning for much of the day. Today, we are planning to visit our friends Heather & Ryan for a cookout, and should reacquire the rest of our brood (sans Devin) later in the evening.

Patty has a mild headache this morning, and says her breathing is a bit strained even indoors today, but she seems pretty cheery and energetic. More soon...


P.S. Here are a few other pics from recent activities:

Friday, July 28, 2006

Dear Mom & Dad


Having heard the email from MB that makes up the previous post (Brian read it to me and it brought tears to my eyes), I became introspective about my Mom and Dad, and wanted to express some of my thoughts to them and to all of you who have so affected my life (and my family's) in the past months. Here it is:

Dear Mom & Dad:

Well, 50 years is quite a milestone. I still count them, though, because you are, after all, celebrating them together. Some would look at the past five years without either of you as somewhat troubled for us kids. We've lost Ellen and Carrie, and have had many other challenges and heartbreaks. Having said this, I feel that the culmination of all this is the best example of the lessons you taught us and still to this day we learn.

If you were here, I know that you would be bursting with pride at the love, generosity and capability that all of your children have demonstrated. My feelings about all of my brothers and sisters have taught me that I am really not without my parents after all; they are living the life you taught us and have thrown a safety net around us all that is inspiring to all who come across it.

I have a great husband and kids, and wonderful friends, and I know that is what is the most important part of a good life, if I've learned from your example. Having Ellen with you guys must be awesome for you...but I miss her almost as much as I miss you. The gift of Sue, of Joan, and of Maryann is something I know that you helped to give us. And still, I miss the both of you. The smiles on those faces are irreplaceable, and I really, really miss you. I hope you two are dancing together right now. I hope you take pride in the legacy you left. I am forever grateful to you. I love you both.


A remembrance

With MaryBeth's permission, Patty is sharing this message from this morning:

Today is Mom and Dad's 50th anniversary. What a legacy they left for us. I think it is because of their example and vision that we were able to be so successful for Patty last week. What a gift. It's very sad that they couldn't celebrate this milestone with us; I'm sure they are celebrating it together. Love, MB

A minor medical detail

Hi everyone:

When the phone rang this afternoon and the caller ID said "University of Chicago Hospital", Patty thought perhaps she was getting THE call. Alas, it was not to be. It turns out that Patty's white cell count is far too low. Patty's count is 2,100 cells per microliter...normal is between 4,500 and 10,000. Apparently, doctors would prefer that her count be on the lower side of normal, but hers is too low. The low count is almost certainly a direct result of her being on Cytoxan. To bring the WBC count back up, doctors have reduced her dose of Cytoxan from three times to twice per day.

It's important to understand that what we are hoping to reduce is antibodies, not white cell count. So this is not good's not necessarily bad news, either, but it's not good news. The problem here is that Patty is immunosuppressed, and therefore more vulnerable to illness, but her antibodies are more resistant than doctors had at first hoped. A reduced dose of Cytoxan may mean it's even harder to drive down the antibodies.

Patty was feeling pretty rough last evening, and isn't ideal today, but she's doing okay.

Today, we had the ignitor on our oven fixed -- we've been microwaving for two weeks. Our lawn mower needs some minor repair because a bolt popped off. Our dryer was making funny noises last night that we can't really explain -- they just stopped. We need to fix the turn signal on our car, and our oil pressure was wonky yesterday. Do you suppose there's some force in the universe that makes machinery break down out of empathy for an ailing owner?


Thursday, July 27, 2006

One more thing...

In case you were wondering why Patty looked so happy and energetic beneath the comment "A bit rough on Thursday" -- that picture was from last night. Here she is today. It looks like someone went at her with a tire iron. I'm kidding, I'm kidding....Love, Brian

A bit rough on Thursday

Hi everyone:

Patty felt pretty energetic last night, so we went out for a little socializing with our friends at Kicker's, after watching Taps with the boys at home. Patty danced (with me and by herself), compared medical supplies with Joe (another club member) and kicked my butt at a game of pool.

Several people asked Patty how the fundraiser went. It took until the third or fourth time telling the story before she could pull it off with dry eyes.

Our friends at the club are hoping to host a low-key get-together for Patty on August 5, her 45th birthday. I know you're not supposed to ask or tell a woman's age, but she looks hot for 45, so the number can be shared.

Of course, whenever we go out for an evening, the next day tends to be a bit rough for Patty in terms of her energy levels. Today, she has an upset stomach and nausea, and is just generally pooped. In fact, she really wasn't awake much before midday.

Last night, we had some fun with the camera -- here are the results:

More later when there's more to report.


Patty with Chuck & Dolly -- she of the fun Thursday comments

Wednesday, July 26, 2006

A calculated risk

Hi everyone:

Over the time I've known Patty, we've shared our feelings with each other, at times, by means of our respective creative pursuits. Patty has made several drawings and a beautiful oil painting to capture moments in our life together. I've written dozens of poems, some fun and lyrical, others dark and brooding. I'll never make a living as a poet, but it is cathartic at times to set some of these words down.

When I've shared my poetry openly in the past, I've offended some people and been criticized by others, so I'm a bit gun-shy. Having said this, Patty regards this blog as a gift to her, so I would like to include some of the more personal material as well. We'll see how it goes...

For the most part, Patty is pretty tolerant of my picture-taking, although from time to time she'll playfully resist being photographed if she feels she's looking too rough around the edges. Yesterday was one of those days. Her attempts to resist inspired the following verse:


Why would you guard your essence
From my camera's yearning eye
As it begs to author a history?
In every frame a narrative
An instant of you, your presence
An emotion, a realization, a moment
A frozen whisper
Selfish, I blur out the periphery
Keeping the shadows gently from focus
Only this, for now, to grace my lens
This hint of then, of this, of what
Of chapters unwritten, images unseen
Of cautious promises of you

For Patty
July 25, 2006

Just a Wednesday

Hi everyone:

Well, Patty survived her second round of IVIG without major complications. Last night, she was feeling more-than-typical shortness of breath and was very pale, and this morning has a moderate headache, but we've seen no evidence of fever or other nasties. The only unsettling situation from the past 24 hours was that Patty woke up during the night because of a dream in which she was having trouble breathing; it could have just been a dream, of course, but it could also be a symptom of her heart failure. We'll be watching this closely over the next little while.

This morning, Patty's nurse instructed Patty on how to change her milrinone bag, which means she will soon have less frequent visits from her home health care nurse. It will also mean that Patty will need to carry around twice as much milrinone at any given time.

Kelly is with Peter and Rachel this week, and will return tomorrow just in time to head off for the weekend. Colin will arrive on Saturday for a two-week stay. More soon...


Mariska the teacher, Patty the student



(see previous post)

Hope springs eternal

Hi everyone:

I'm not much for believing in precognition, but I've been having a hunch all evening that we would get a call about a heart sometime before morning. I realize this is very unlikely, but I did want to have an official record in case it pans out -- it could very well turn into a talk show opportunity. I'll be back with you tomorrow.

Sweet dreams,

Tuesday, July 25, 2006

Men are from Mars, Patty's intravenous

Hi everyone:

Catchy title, huh? I almost opted for something else, but Patty thought it was funny, so it stuck.

Well, Patty seems to have come through round two of IVIG in much better shape than the first time around (knock on wood). She's a little tired and nauseous, but only a little more so than on days without IVIG. The biggest challenge today? Every time Patty started to doze off, her IV pump would start to beep because of air in the line. Patty's nurse taught me how to correct the problem, which I did about 30 times over the course of the afternoon. Every time, Patty would apologize as though somehow it was her fault.

Thanks to all who have followed up from Friday's evening with emails and blog comments. It seems that everyone agrees the night was really something special.

There's not much else to report at this moment...keep the comments coming, as Patty asks me daily, "Anything happening on the comments front?"


P.S. Am I the only one who, in watching the Sox games, frequently uses all the words George Carlin claimed you could never say on television? Sigh...Go Contreras, Go Sox.

This is half of the IVIG supply this time around

Mariska preps the Benadryl shot

Monday, July 24, 2006

Here we go again...

Hi everyone:

Patty is starting her latest round of IVIG (intravenous immunoglobulin) in the ongoing attempt to knock back her antibodies. Two nurses will stay with Patty in four-hour shifts today and again tomorrow -- Jennifer first, and then Patty's regular nurse Mariska.

Patty is somewhat anxious about the side effects, which can include severe headache and fever. The last time she received IVIG, she had a rough go of it. However, at the time she was also taking CellCept, so we're not sure if the IVIG alone will be hard for her to tolerate or not.

Starting the day, Patty was again feeling some shortness of breath and nausea. The breathing issues always make me nervous, because they have previously suggested a progression of her heart failure. Of course, in this instance, they could mean nothing, other than that I'm being a freak. We'll keep a close watch on her.

As I write this, Patty has fallen asleep after receiving an injection of Benadryl (as seen in the photo above.) This injection is given to help prevent an allergic reaction to the IVIG. Before she fell asleep, Patty was feeling dizzy from the Benadryl; my understanding is that this is a typical reaction. Our son Connor came into the bedroom a moment ago, took a look at his mother and offered, "It looks like she could wake up and puke at any moment." I didn't see this, but I found it amusing.

I'm hoping Patty will come through this round of IVIG with flying colors, and that it will be wildly successful in beating down her PRA. I will try to provide an update later today.


P.S. Bill Osetek and Peter O'Mara -- I'm still laughing at that joke from Friday night.

Sunday, July 23, 2006

Back to earth...and back to business

Hi everyone:

Diane Goryl (a.k.a. Diane from Milwaukee) posted a question this morning about whether or not Patty lasted for the whole event Friday evening. The answer is...almost. We stayed until the poker game was underway and most of the lingering party maniacs had ventured to the bar downstairs. Patty was running strong for most of the evening on adrenaline, I would guess, and settled into sleep on the high of a special night.

In the hotel on Saturday morning, before we packed up to head home, we had visits from a home health care nurse carrying a large doctor's bag, and then received a delivery from a medical supply service -- an IV pole, pump, box, bag and cooler full of medicine. We wondered what kind of looks these people were subjected to as they made their way through the hotel lobby.

After a pretty good week, healthwise, Patty is again experiencing more pronounced heart failure symptoms. Her breathing is somewhat labored, her rings are snug on her fingers, she's fatigued and she's nauseous. On top of this, she seems to be catching a cold. After we arrived home yesterday, Patty slept most of the time from the late afternoon until noon today. This sleep wasn't uninterrupted, I say with some regret. At some point early in the morning, I was having one of my many recent nightmares and, in perceived self-defence, almost shoved the cardiac patient out of bed...twice. I've been forgiven.

If all this weren't enough, Patty is scheduled for her second round of IVIG (intravenous treatment) starting tomorrow. This will involve a nurse being on hand for eight hours tomorrow and again on Tuesday.

The results of Patty's PRA (panel reactive antibodies) test came back. Her Class I antibodies are now at 44 percent (65 before), and her Class II antibodies have dropped from 100 percent to 95 percent. These reductions aren't as significant as doctors had hoped for at this stage, but we're choosing to regard any progress as a step in the right direction.

Please continue your positive thoughts for Patty -- I have a feeling the next couple of days may be a bit rough for our girl.


Saturday, July 22, 2006

More photos from last night

Hi everyone:

Kevin shared a link to several additional photographs from last night -- and included the Picturetrail set I mentioned earlier. So, to see the entire collection as it stands, point your browser here.

A little night magic

Hi everyone:

Last night was a magical evening, for Patty and for our family. Patty was able to bask in the warmth of family and friends, and to just relax and not worry about health or anything else. Kevin reports that it was also a tremendous success, far exceeding his initial expectations. Thanks ever so much to everyone who had a hand in making it so successful and such a pleasant diversion from so many serious days and nights. We cannot even begin to fully acknowledge Patty's siblings and their families for their commitment to making this a beautiful night for Patty and all the other guests. Although Patty is weary today from such a busy day yesterday, she is feeling very loved.

If you would like to see the 54 pictures captured on our camera last night, please visit and visit the omara-croft album. My apologies in advance for those photos that did not turn out as hoped. If you took pictures during the event, please email them to us so that we have as complete a record of the evening as possible. Our email is

We were somewhat surprised and very thrilled to learn that so many of you have been visiting the blog with some regularity. Many of Patty's friends from school came forward to say that they check in every day. As always, Patty loves to read comments, so please don't be so quiet in the future.

Patty had prepared some of her comments for last night in advance, because she knew she would be nervous and was afraid she would misstep if she tried to speak extemporaneously. So, for those of you who were unable to attend, or who would like to relive the moment, here are her words:

Hi everyone:

I’m very nervous, and very moved, so you may be hearing some of this through a voice that’s not so steady. Please bear with me. I think everyone here will agree that this evening is a wonderful thing, both in its scope and in the love so obviously behind it. I would like to thank all of those directly responsible for this night, and to thank so many others who have extended other gestures of selflessness, charity and love. I know all of my siblings and their families played an important role both in this event and in helping our family cope with some real challenges.

First and foremost, I want to thank Kevin, who clearly must have made many compromises in his personal and professional life to pull all of this together. Marybeth and Sharon, I know you have put in many hours and many dollars to make sure that all of the finer details have been special for this night. Joe obtained a great many wonderful and – let’s just say it – incredible items for both the auction and raffle. Marybeth and Jeff, Kevin and Sharon, Peter and Rachel and Joe have all taken our kids for extended stretches and entertained them such that they’ve been able to turn a summer that could have been awful into one that will be forever special. Peter and Rachel have provided incredible medical and legal advice at a price we simply couldn’t refuse. Neil and Kathleen have called daily to check in on my well-being and needs, and have provided Brian with much-needed companionship during my hospital stays. Neil, I won’t get into specifics here, but you know what you’ve meant to us when we’ve needed a shoulder. Mike has somehow found the time to visit with me several times this summer even though he lives several hundred miles away. So, to all my siblings, all their spouses, and all of their families, thank you.

I’ve felt such an outpouring of affection and warm wishes here tonight. I want to thank everyone who has played a part in this evening, with donations, with raffle tickets, with auction bids and your presence here. I guess I don’t know really what to say, other than to say I’m overwhelmed and really, really grateful.

There are many of you who I haven’t acknowledged here, because to acknowledge everyone individually would take all night. Clearly, if you read the blog, you know that I probably don’t have the energy to deliver a speech all night. Some of you I would like to thank personally rather than publicly. So, for this time around, I’m focusing more on those who have been involved in pulling this night together directly, but please know the rest of you are in no way forgotten.

Lastly, I need to mention the kids and Brian. PJ, Kelly and Connor look after me and worry about me constantly, just as Brian and I worry about them. They are strong, nice kids, and will pull through just fine, based on all evidence thus far. Devin and Colin send heartfelt wishes from afar, occasionally posting funny messages on the blog, and making me laugh. And Brian bears all this right along with me, and never complains or falters. I love you so much, and I thank you so much.

I know that my life is going to be a bit of a struggle moving forward, but I also know I’m going to be fine. Knowing that this many people are pulling for me makes all the difference in the world. Now please go back and have a great time. Thank you.

Again, thank you all so much for your continued love and support.

A wonderful night ...initial observations

Hi everyone:

We're not in a position to offer a complete commentary on the evening's happenings -- there is really so much to share -- but for those who visit frequently, I felt it was important to share just a few of the images from the night. Please trust that the selection of images is mostly random...we just wanted to get something on the blog. I know that Patty, right now, is feeling like she's been exposed to something magical. Please bear with us and we'll share more, much more, tomorrow and in the days to come -- we took many pictures and have many memories to share. This is just a sneak peek at what proved to be an incredible experience, for which we will always be grateful.


Friday, July 21, 2006


Hi everyone:

Only an hour or so to go until Patty's party. She's nervous but radiant and beautiful. Sharon, Marybeth, Kevin and Kathleen worked like maniacs this afternoon making the venue look elegant. There has clearly been a tremendous amount of elbow grease expended in pulling together what promises to be an exciting event. I'm certain Patty will be blown away. Below are a couple of pics from the last couple of days. As early as possible tomorrow, I'll be sure to post photographs from tonight's festivities.


Thinking about her words for the fundraiser

Patty's last-minute nail appointment

Finishing touches

Brian & Patty pre-party

Kiddo (Kathleen) & Patty

Thursday, July 20, 2006

A note from Kelly

My Mom is a wonderful person. She will stand by you even if you're puking. I know -- grossss! But that's what I love about her -- she'll stay with you constantly, if you're sick or injured. Enough with all the ooey, gooey stuff. She's great at dancing, great at singing...well, she loves to sing. Just kidding...she's good. She is a wild fashion diva. But she's my mom, and I love her with all my heart...until I die.


Oh-so-guilty pleasures

Hello everyone:

Patty and I watched the latest Sarah Silverman stand-up DVD late this afternoon. It was nice to see Patty laugh so freely, even with a camera repeatedly jammed into her face. The second-to-last image in this sequence was the kind-but-firm warning to stop taking pictures.

Patty is a bundle of emotions today. She is feeling overwhelmed and awed by the number of people who have signed up for her fundraiser, and by the many others who have contributed to it in so many ways. She is feeling a pride and admiration for her family and the many things they've done for her. She is feeling jittery and nervous, because she's afraid she "might make the wrong impression." At the same time, she's feeling excited about seeing old friends and making new ones. I asked her, "Are you feeling like you're going to the prom and you've already been told you're the queen?" She nodded between tears. I could not love her more.


A lazy, rainy Thursday

Hi everyone:

The weather is miserable, so Patty is pretty much just laying around watching Food Network and building up some reserves of strength for what promises to be a long, but fun evening tomorrow. We had a huge thunderstorm last night, with claps of thunder that sounded like bombs hitting the ground around our home -- but at least we didn't lose televisions or frozen food this time around.

Patty does seem to have settled into a bearable pattern as regards medicine tolerance. She's still bothered by the itchy bumps; doctors at UCH took swabs yesterday and hope to have some conclusion soon. My guess is that they're a side effect of medication...but my guesses are often wrong.

If anything of note emerges during the day today, I'll be sure to post again. Here's a photo from earlier this morning of Patty with Mariska, her nurse.


From Colin, another original work -- this entitled Poetry Slam Devin -- hey, it's a slow day:

Wednesday, July 19, 2006

Visit to UCH

Hi everyone:

Patty and I made the trek to University of Chicago Hospital today for Patty's routine check-up with her cardiologist, Dr. Savitri Fedson (with Patty, left.) "Dr. Savvy" is fun, friendly and looks like she's about 20 years old. Patty could not be happier with her doctors -- except perhaps if she had the option to never see them again.

As part of our discussions, we learned that Patty has been crossmatched against two hearts, neither of which was a good option. Dr. Fedson agreed that it would be a really long shot at this point to find a negative crossmatch (or, in other words, an ideal heart candidate.)

If I'm understanding correctly, after 90 days, if Patty's PRA (panel reactive antibodies) have not declined, the plan would then be to transplant her against crossmatch. This would mean that Patty would be transplanted with a heart of the same blood type, but not tested for its reaction to antibodies. This is a far-from-ideal situation, in part because they will need to watch Patty much more closely (and frequently) to watch for rejection episodes. In addition, she will likely need greater amounts of some pretty unpleasant anti-rejection drugs. On the plus side, however, Patty would likely not wait very long to receive a donor heart. Let's all still keep our fingers crossed for a reduction in antibodies.

Patty's blood was drawn today to test her PRA again, and to make sure there is a sufficient supply for future crossmatching. Although the results will be shared with us, Dr. Fedson cautioned that she does not expect the levels to have changed as yet.

We were told that if Patty's heart undergoes another significant decline, she will most likely require a balloon pump to keep her going until a heart would become available. That need would also mean that the timetable for transplant would need to be accelerated, regardless of crossmatch issues. A left ventricular assist device, or LVAD, is another possible option, although Patty would need an external LVAD because of her size. Dr. Fedson assured us that they would do everything possible to avoid an LVAD placement. When I asked, "Is this because Patty's antibodies would increase?" Dr. Fedson smiled wryly and said, "I don't really think Patty's antibodies could get much higher."

Patty is very much looking forward to the fundraiser this Friday night. Of course, she has planned her outfit and her jewelry, has made arrangements for a manicure and pedicure, and is trying to decide when to color her hair. Of course, I've done no such planning. We had a chance to look at the list of auction/raffle items and the list of attendees and were, quite simply, blown away. Clearly, Patty's siblings have gone all-out to make this evening a success, and we cannot thank them enough.

Here are some other pictures from her trip:

Patty with the transplant team social worker, Rina Murao

Patty with Nurse Roz

More soon...


More errands

Hi everyone:

Patty and I are leaving shortly for a "routine" appointment at University of Chicago Hospital with Dr. Fedson, one of Patty's cardiologists. If there's anything to report, I'll be sure to create a new post later today. In the meantime, here are some photos from yesterday. As you can see, we ran a couple of errands. Later, Patty worked on jewelry while I did some marketing for my business. Trish dropped by in the evening. Check back tonight...


A quick bite of lunch

Checking things out at Costco

Patty and her big jugs at Home Depot (oh, c' had to be said)

Patty noticed something about what Trish and I were wearing -- this wasn't planned

Monday, July 17, 2006

A creative Monday

Hi everyone:

Patty had a slow start to her day (nausea again, along with some stomach discomfort), but after a DQ chocolate milkshake in the later afternoon, she's seeming much better heading into the evening. We often make mini-trips to gather very specific "craving" items, because so few foods have much appeal at any given point in time.

She was thrilled to finish the necklace and earrings she has been designing and creating for the fundraiser party this coming Friday. A picture of the newly finished necklace is posted below. We're planning to settle in with TV or a movie this evening. How's that for a mostly uneventful existence?

We spent a bit of time this afternoon gathering additional research on the whole area of antibodies, rejection and transplant. At times, the messages seem encouraging, as is the case when they describe better-than-average success in reducing antibodies. At other times, the messages seem more ominous -- such as when they describe a "very high total PRA level" as being 10-20 percent, while Patty's PRA, when tested, was at 100 percent. It's so frustrating to realize that they won't even check to see if Patty's antibodies are reduced for 90 days, and we're not even 30 days into that wait yet.

That's it for now.


Patty working on her garnet necklace