Too good to be true (again)

Hi everyone:

Patty just called the pharmacy to confirm the availability of her Zofran prescription, and was informed that it had been declined by the insurer yet again. Patty pushed them to investigate this, because there should be a new override in place. We are now in a holding pattern yet again.

How many times do you think we need to endure this circus before the insurance company actually follows through? How many times can we erroneously report that this problem has been solved before we look like gullible idiots?

I think it's time for me to talk Patty into a walk; the fresh air might make this nonsense seem more amusing.

Love,
Brian

And the beat goes on and on and...

Hi everyone:

Now that the Zofran problem seems to have been resolved, we naturally need a new hassle with insurers. The insurance company is now questioning the necessity of infusing Patty with IVIG, on the basis this treatment may be considered, by some, to be "experimental." The administration of IVIG along with plasmapheresis is considered by many doctors to be among the best (and perhaps only) means to reduce a high PRA -- hence the name, "high PRA rescue."

Not only are the insurers not providing approval for future treatments (including the ones planned for this week), but they are balking at paying for the $67,000 in such treatments that have already been completed. Needless to say, we're hoping the insurance company comes around on this. Our hope is that when our doctors provide more evidence of past successes with such approaches, the approval will come through. Do you suppose they have better solutions to the challenges Patty faces? I just don't understand why they are so resistant to give their blessing for the only solutions that appear to offer a shot at success. What's forgotten through this process, I think, is that the insurance company only loses money; the patient has so much more to lose. It's exasperating, discouraging and even frightening, because there really is no turning back on this journey.

While Patty relaxed in our family room last night, a full-scale Nerf Reactor Blaster battle broke out in our backyard. The combatants included Connor, his friends Alec and Noah, and yours truly. It got pretty ugly, with plenty of ambushes and close-range aggression. Of course, after about 10 minutes of running around as the preferred target, I conceded defeat and went inside.

Both PJ and Kelly had sleepovers at friends' homes last night, and Connor hosted his two friends. Tonight, PJ has his homecoming dance. Patty and PJ have been working hard at making a mask for the dance; we'll try to get pics of him in costume. Amid all this chaos of medical appointments, insurance company approvals and the like, it's rewarding to see the kids distracted and happy.

Love,
Brian

Connor and his posse

An observation

Hi everyone:

Patty and I went for a brief walk tonight, just to keep our streak alive (we're at 4.) While we were walking, Patty mentioned that it was chilly, and then did two quick blows of the air to see if her breath would show. I didn't immediately clue into what she was trying to convey, so I immediately felt anxious, squeezed Patty's hand and demanded of her, "What's wrong, what's wrong?" I realized that even when we are engaging in relaxing activities, it takes very little to be jerked into this heightened state of worry. It's a bit embarrassing, really, whenever it happens.

Love,
Brian

My pride and joy

Zofran -- the sequel????

Hi everyone:

Okay, okay, this time it's official -- Patty has finally been approved by her insurer for 30-day supplies of Zofran (the drug that mostly keeps her from throwing up.) Between MaryBeth, who has worked tirelessly to guide Patty through the insurance/disability quagmire, and Danni, a liaison between Patty's school and the insurance company, I think Patty is feeling like she's surrounded by guardian angels these days. What's more, Danni was able to help get the ball rolling on some new medical coverage for me -- thanks also to our friend Chuck for the suggestion. Of course, we are both grateful to everyone else who seems to have our backs at every turn.

Last night, Kathleen brought Patty a book about sisters, and brought me a pumpkin pie (my favorite.) Today, Patty's colleague Heather visited with her young daughter Skyler. We also had a second visit from the photographer from the Aurora Beacon -- this time to capture some candid shots of our family in action. An article about Patty and the family will be published within a few weeks. Patty seems to be enjoying several rounds of Warhol's "15 minutes of fame."

Connor enjoyed reading the comments about his blog entry, and has hinted that he may want to craft another submission. I think we should let him...don't you?

PJ and Patty worked today on a handmade mask for the masquerade ball that is part of his school's homecoming. Had Patty been well enough to work this school year, she would have had PJ as a student; I think this at least gave her a taste of that experience.

So, all in all, today was relatively uneventful -- nothing wrong with that.

Love,
Brian

Maskbuilding 101



Patty loves these pics of PJ and Connor -- two lucky shots in one day

Some thoughts from the patient

Hello to all:

When I read what Connor wrote earlier this evening, I was deeply touched, and took a few extra moments to reflect upon how much this blog has come to mean both to me and to Brian. When Kevin suggested that Brian pull this together months ago, neither of us had any real appreciation of what the blog would ultimately mean to our family.

We scrolled through the blog tonight, and noticed that there were several pictures of me in which I am visibly ill; to be honest, just looking at some of them gives me the creeps. I know that Brian has mixed feelings about such shots – on the one hand, they are painful reminders that there is only so much he can do to alleviate the specific situations in which I find myself, which I know kills him at times. On the other, he wants to be sure that he never loses an accurate perspective, and I support this view, even if I don’t find the photos (or the descriptions) very flattering. For my part, I hope to be able to look back on all the rougher moments with a sense of triumph, when all of this insanity is in the past. I know that sometimes Brian wants to show me as a wolf, and at others he wants to show me as some variant of Lady Frankenstein. Believe me, I do want to censor him from time to time, but I can’t really tell him not to be himself. He’s my biggest fan, as sappy as that sounds. Besides, I think it's all pretty funny, and part of the gift.

In spite of all of this, I know that Brian will find ways to cope. For some reason, when the kids write, I find myself becoming a wreck. I worry, at times, that I cannot live up to the standards Connor and Kelly have painted as my day-to-day performance record. Certainly, they are seeing me through rose-colored glasses…but God I love them all so much.

Love,
Patty

A few housekeeping details

Hi everyone:

Connor's blog entry is certainly going to be a tough act to follow, so I'm going to try to keep this brief. As for his comments, suffice it to say that Patty and I both struggled against tears, and are so proud of this fine young man.

Patty had a mediocre day today, with a fair amount of nausea in the morning. She's quite pleased with herself that she's mustered the strength to go on brief walks for two consecutive days. Also, generally, her appetite seems to have become more consistent over the past short while. So, these are the smaller blessings we have come to embrace these days.

Tomorrow and Thursday, we will have more visits from the reporter and photographer from the Aurora Beacon. On Monday, Patty will have her blood drawn for the next PRA test. On Tuesday and Thursday, she will have plasmapheresis as an outpatient at UCH, and on late Thursday and Friday she will receive her next rounds of IVIG at home. Unfortunately, the insurance company is also starting to balk at the IVIG infusions, because they regard this treatment as non-essential. The bottom line here seems to be that insurance companies are pure businesses, and their customers are statistics rather than flesh-and-blood. Don't get me wrong -- I believe they have a right to earn money -- but to make so many choices based on poorly but rigidly defined parameters seems foolish on many fronts.

Wow, I'm so impressed with Connor right now. I'm amazed by all my kids. I'm amazed by my wife. And, man oh man, do I wish I could be impressed with the White Sox -- next year, perhaps?

Love,
Brian

A note from Connor

Hi:

My Mom is going through some hard times, but she is very strong, so I know she can do it. I have been feeling sad a lot, but she is there to comfort me. My Mom is very fun and loving; she is doing good a lot--that's because she is so tough. She is the best person at making jewelry that I know in the world. She is also the best person at making up fun stuff to do.

I like to help my Mom however I can. As you can see in the picture, I am helping her clean out her catheter. There are so many things to do with that -- it's so hard.

She is very active for what she is going through. She is the best person I have ever met and she always will be. The things that I am most sad about are the fact that she has to get a new heart and that her heart got shocked and everything else. But, like I said, she is always there to comfort me. My big question is why did it have to happen to my Mom? I also think that everybody else thinks that, too. She is the best Mom in the world and I'm glad she's mine. She always feels up to everything and she's so nice. She loves music and she has almost every song. There are so many more things about my Mom, but this is all I can think of for now.

Love,
Connor

P.S. LYF

More statistics, anyone?

Hi everyone:

Patty commented tonight that my picture "never" appears in the blog. So, of course, I checked. If I counted properly, I appear either directly or indirectly 31 times. To argue a point that I should appear more, Patty then said, "Yeah, but how many times do I appear?" Correct me if I'm wrong, but...

Love,
Brian

Statistics, anyone?

Hi everyone:

From time to time, I visit the website for the United Network for Organ Sharing (UNOS), which is the body responsible for distribution of all donor organs in the U.S. The site includes a comprehensive database of statistics on all transplants performed (or to be performed.) I derive some comfort and optimism from seeing evidence that things have worked out for other people, even if in this instance the proof is in numerical form.

Often, friends ask us, "Where does Patty stand on the list?" Unfortunately, there is no easy answer to that question, in large part because Patty's antibodies are a huge factor in her candidacy for transplant. To be honest, unless Patty's PRA comes down, she could be #1 on any list and still wouldn't be a viable transplant candidate.

That doesn't mean, however, that we aren't inclined to research some of the numbers at play. So, for those of you who may be interested, here's some of what we dug up this evening:

• currently there are 2,865 people awaiting hearts nationwide; 932 are Status 1B, which is the same as Patty. More than half on the list are presently inactive, so the first number is somewhat bloated
  
• 261 people are awaiting heart transplants in this region, which includes Illinois, Minnesota, Wisconsin, North Dakota and South Dakota. This is the region from which Patty's heart would likely come; in fact, with the need to perform a crossmatch on any prospective donor (because of antibodies), it is likely any donor she would get right now would be limited to the Chicagoland area
  
• of the 261 candidates in the region, 50 are in Patty's age group, 35-49, and 24 have blood type B; Patty is one of 7 females in the entire region who is type B
  
• of the 261 candidates, 11 people have a transplant need status of 1A, 34 are Status 1B (like Patty) and 92 are Status 2
  
• of the 34 who share Status 1B with Patty, 10 are female
  
• currently, there are 10 people awaiting a heart at University of Chicago -- five male and five female
  
• each year in this region, approximately 175-200 donor hearts are made available
  
• in 2006 so far, 99 hearts have been donated in this region -- 27 were from motor vehicle accident, 12 were from homicide, 6 were from suicide and the rest were from other reasons
  
• the University of Chicago Hospital has performed 173 heart transplants since 2000, of whom 38 were women and 29 were blood type B (6 of the 38 women were type B)

There is only so much that one can really draw from statistics, since each person's circumstances are somewhat unique -- and Patty's seem to be more unique than most. But it's still a way to pass some time while waiting for a heart.

Love,
Brian

P.S. The photo has no relevance to the topic of this blog entry, other than that Patty took the photo while I was drafting this entry and she wanted it on the blog.

An evening of catching up

Hi everyone:

Last night, we were treated to dinner by Theresa Nugent, a college friend of Patty's. We saw Theresa at the fundraiser a couple of months ago, but this was the first opportunity for she and Patty to get caught up. When several years elapse between discussions, many things can have changed, and this certainly was the case with the stories shared last night. We had a nice time, and hope we'll be seeing more of Theresa in the near future.

Not much has happened so far today. Patty will be taking magnesium supplements for the immediate future, because blood tests revealed her levels were on the low side of normal, which could be a factor in causing irregular heart rates. Patty tried again to get answers on the Zofran issue, and I wrote a letter to executives of the insurance company also pushing for a suitable solution. We'll see what happens.

If anything of note transpires, we'll be back...

Love,
Brian

Also from yesterday...

Hi everyone:

Although the ICD incident was by far the most significant event of our Friday (details are in the previous post), we did want to share a couple of other things that happened. Mariska, Patty's home health nurse, taught me how to flush Patty's Quinton catheter lines -- a process that should be done daily. Being able to do this makes me feel like I'm a contributor to the care of my wife, albeit on a small level. I'm sure many of you have been through situations where someone you care about is very sick, and are thus aware of the feeling of helplessness that seems to go with the territory much of the time. I'm learning all of this for the first time, so feel free to share insights.

While I was learning the ropes, a photographer from the Aurora Beacon took photographs to support an upcoming article about Patty. She also snapped some shots of me working on the blog, and plans to visit again next week to get some pictures of our routine (such as it is these days) with the kids. As I write this morning, Patty is sleeping, and I believe her plan for the day is "to just lay around." That works...

Love,
Brian

P.S. I noticed this morning that since we started counting in late July, there have been more than 2,000 discrete visits to this blog. Patty loves that people are visiting and commenting. Please keep dropping by...

Update on Patty's ICD incident yesterday

Hi everyone:

As discussed yesterday, Patty's internal cardioverter defibrillator, or ICD, delivered a shock to her heart at around 11:30 am. In the afternoon, we visited Edward Hospital, where they interrogated Patty's ICD -- that is, they read the data recorded on the device to interpret what had happened. They also did blood tests, the results of which we have not yet heard. I was able to get a copy of the strips generated by the device, and can try my best to explain them here. To get a closer look at the chart, please click on it -- you should then see an enlarged version.



If you look at the straight line of dots running from the left of the screen, you'll see what Patty's heartbeat is like when everything is normal. Patty was applying makeup upstairs in our bathroom at this time.

You'll then see that the pattern of dots becomes erratic. At this point, Patty felt a sudden wave of extreme dizziness, and felt like her heart suddenly was beating far too fast. As we learned, it wasn't really beating at all at this point; instead, it was fluttering at more than 250 "beats" per minute. This situation is known as a ventricular tachycardia. When Patty felt this sensation, she started toward her knees because she felt herself losing consciousness. Often, when you hear of athletes suddenly collapsing, they have experienced a similar event.

Patty's ICD recognized that her heart had adopted a dangerous rhythm and, after waiting for four seconds for her heart to restore a normal pace, delivered a 20.1-joule shock to her heart. This is the same sort of process as when doctors apply paddles to a person's chest -- except in Patty's case the "paddles" are wires that extend directly into her heart. Shortly after the shock, Patty's heart again settled into a normal rhythm (as you can see to the right of the strip.)

From initial detection, to shock, to restoration of a normal heartbeat, the process lasted 18 seconds. As I mentioned yesterday, Patty is hoping this never happens again. Although the shock lasted less than a second, it was apparently very painful.

The ICD maintains records of every second since its last interrogation, so doctors can tell what was going on with Patty's heart at any given moment -- although they cannot always tell why. When technicians checked the ICD, they discovered that Patty had experienced a similar tachycardia a week previous (Friday the 15th), but that Patty's heart had resumed a normal rhythm on its own.

I don't really have any more to share about this at this point. We're hoping to hear back from Edward Hospital today with the results of the blood tests, which may be able to provide some answers as to why her heart adopted an odd pattern. We did know that milrinone (the IV drug that Patty carries around with her portable pump) can cause unstable heart rhythms, although it is pure speculation on my part to suggest this may have played a role. More later as we learn it...

Love,
Brian

Patty's first zap

Hi everyone:

Just moments ago, as I was finishing the last blog entry, Patty received her first jolt from her defibrillator. She was applying makeup when she suddenly felt dizzy and her heart began racing. Just as she leaned over the sink to support herself, the ICD delivered a shock. Patty screamed; I hope I never hear that again. I'm pretty sure, from Patty's description of the event, that she also wants to avoid it ever happening again. She said it felt like somebody touched an open electrical cord to her chest. Immediately after the event, though, her heart settled into a normal rhythm.

We called Edward Hospital. They are having Patty come in this afternoon to have her electrolyte levels checked, and to interrogate her ICD. The incident isn't considered an emergency unless it happens multiple times. With a computer and a special sort of mouse, they can review the event to determine what happened. As soon as we know more, we'll share the details.

Patty is walking very daintily right now, and is feeling very scared. I just wish so much that she could catch a break. I wish I could take some of the pain, some of the nausea, some of the fatigue...just something that would make it easier for her. This just isn't right...

Love,
Brian

Zofran problems redux

Hi everyone:

Well, last night and today have thus far been pretty frustrating for Patty. We had been led to believe by Patty's insurer that she would be covered for two Zofran doses daily if she agreed to receive the pills via mail order. Last night, we received a letter from the mail order pharmacy saying that they could not process the order because the insurer would only cover 30 pills at a time, which is less than the 60-day minimum needed for mail order. This of course left Patty in tears, because this whole process seems to have become an enormous albatross.

Patty is going to call the insurer again, to see if there was some mistake that can quickly be resolved. If that doesn't work, I'm going to write a letter to executives at the insurance company. There is a point at which a comedy of errors ceases to be amusing, and I think we've reached that point. The most absurd aspect of all of this is that Patty's doctors have told her that the next best solution would be to hospitalize her, which will cost far more than the $90 per day these pills cost.

On Wednesday, I went with PJ and his girlfriend Kelsey to see five bands at the House of Blues. The show started at 5:45 pm and still wasn't finished when we left at 10pm. Although I wasn't a huge fan of any of the bands, and I felt pretty ancient compared to much of the audience, I really liked to see PJ being relaxed and happy. He jumped pretty much non-stop for the last hour we were there; you can't get kids to exercise that much, otherwise. Our original plan was to head for home at 9pm, but that would have meant the kids would not have seen Sugarcult, the headline band. We arrived back in Aurora at 11:45pm -- pretty late for a school night, but okay for an exception. I'm not sure I'll be signing on for many more such nights, but I do like to spend time with the kids on their terms, sometimes.

I have made a commitment to myself, and to Patty, not to watch the remaining White Sox games this season. I get so wound up watching the games that I'm pretty much unbearable to be around -- so, unless there is some minor miracle that puts the Sox in the playoffs, I'll take a break for now and recharge my enthusiasm for next season. As silly as this sounds, I am really blue that they didn't perform better down the stretch. Based on the result of last night's game, I'm thinking my new plan reflects some good judgement.

In case you're wondering about today's photo, here's the deal -- every time PJ takes pictures of Kelly, she strikes this "glam" pose. I asked Patty to try to replicate the pose; I think she did pretty well, no?

We don't have the kids this weekend. Patty is hoping to be foreman while I do some of the garden clean-up she's been wanting done for some time. We may pop out to do some karaoke tonight, depending on how our patient feels. Other than that, I think the plan is to just take things easy. More soon...

Love,
Brian

Patty took this picture of me at lunch yesterday

A mediocre Wednesday

Hi everyone:

Patty has been having a "typical" day -- more nauseous in the early morning than later on, but mostly able to function if not thrive. She awakened twice during the night with stomach troubles, so I imagine she'll run out of steam sometime this afternoon. She is being fairly active today. To some extent, this is a good thing, because she has been encouraged to move around; however, Patty does get winded pretty easily, and doesn't always heed my admonitions to take a break. Please feel free to give her a hard time.

Late this afternoon, I'm going to travel into the city to attend a Sugarcult concert at House of Blues with PJ and his girlfriend Kelsey. I'm not sure it will be the thrill that the Snow Patrol concert was, but we'll see what happens. Patty will relax at home with Kelly and Connor.

If anything else happens, I'll be back in touch.

Love,
Brian

Better safe than sorry

Hi everyone:

Not much to report today, really. This morning, we noticed that the skin at the site of Patty's Quinton catheter (the port used for plasmapheresis) was red, and that some clear pink liquid had filled one of the lines. We also noticed that her hands and feet were unusually cool and damp. As a precaution, and at Dr. Costanzo's request, we visited the doctor at her office within Central DuPage Hospital in Winfield. As it turns out, our concerns were entirely a false alarm. We were quite relieved that this was the case, because we really didn't want to add yet another hospital to the list of medical places where Patty is a known quantity.

Dr. Costanzo asked Patty how the kids were faring. Patty expressed to the doctor her worry that she isn't being strong enough or, more simply, "there" enough for our kids. The doctor told Patty that she thought she was doing far more than anyone would ever expect of her; I'm inclined to agree. She also shared with us that the class of antibodies that is most troublesome in terms of post-transplant rejection is the one that Patty has very few of at this point -- so we can realistically afford to hope that a heart may become available in the foreseeable future.

What else? After much back-and-forth, we finally consented for PJ to go to an early evening concert in Chicago on Wednesday, and we took Kelly tonight to an information meeting about pom tryouts later this week. Connor's day was a typical Connor day -- lots of play outside and not much else, which we see as the best therapy for him most days. Me? I watched part of the Sox game, and felt many of my few vestiges of hope fading away. If they win tomorrow it may be another outlook altogether, but for now I'm really rather blue about it. I know people say it's just a game, but for some stupid reason I'm taking it all more personally this season.

That's it for now. Sleep well...

Love,
Brian

A fun night

Hi everyone:

Last night was, in a word, amazing. Both bands -- Augustana and Snow Patrol -- were incredible performers. You can record my official position on this right now -- Snow Patrol will very soon be the #1 band in this country, just as they are now in England and Ireland. Within a year, they will be bigger than Coldplay. Gary Lightbody, their lead singer, has an amazing voice, as do the band's backing vocalists. The band's lyrics are moving, and their performance of them just adds to the impact. For some time, I have admired their musical talent. Now, though, I have reason to admire them as people.

Tom, who plays keyboards, talked to me like I was a friend he had missed. Nathan, the lead guitarist, made a special point of shaking Patty's hand both when he met her and when she was about to leave -- in fact, he told Patty to shake his hand before she left. Gary declined Patty's offer of a handshake, and instead gave her a hug and a kiss on the cheek. Neil, their tour manager, clearly made an effort to make sure the Riviera Theatre knew that Patty was a special guest of the band. We didn't stay long, but I actually felt a bit disappointed that we won't likely have another chance to hang out with them -- they really seem like good guys.

I am so happy that Patty had a good time. I am also so happy, and touched, that so many people keep doing everything they can to make Patty's struggles seem like less of a burden. Sometimes, she even gets to feel spoiled...and, under the circumstances, that's okay with me.

Love,
Brian

Remember me?

Hi --

I haven't written in some time, but I did want you to know that your visits here, along with your comments, are much appreciated both by me and by Brian. To be honest, I've been in a bit of a slump, emotionally, over the past week or so. It seems, at times, like all of this is an uphill battle against a hill that keeps getting bigger and bigger. My constant struggles with the insurance company, after so much time in the hospital, left me feeling somewhat hopeless. Ultimately, it seems like some progress was made, so I am counting my blessings. Among those blessings I count most important are the kind thoughts and gestures of all of you.

Through the blue moments, one thing that kept me feeling excited was the plan to attend the Snow Patrol concert with Brian -- although my health concerns made me worry that I wouldn't be able to attend the show. Everyone who knows me well knows that I'm a worrier who frets over details, so I also worried that something would make things not work out as planned. Now, though, I know I fretted without reason. Brian made sure that every single detail of the evening was covered so meticulously that I was able to just relax and enjoy the night. We were given VIP treatment from the moment we arrived to the moment we left.

Wonderfully, Brian has spent a lot of time this year looking for opportunities to make life special for me and the kids without incurring a lot of expense. I am also so grateful to everyone else, including family, colleagues, friends and even new acquaintances, who always seem to come through with overwhelming demonstrations of kindness. Last night, though, I consider a special, romantic gift from my husband -- just like this blog.



Now, for the details. Snow Patrol was amazing in concert, and both the band and their managers are incredible. Neil, their tour manager, was very accommodating and warm. Tara, from their management company in London, was a sweetheart. Each member of the band -- Gary, Nathan, Jonny, Tom and Paul -- was very gracious and conversational, although Jonny was just getting out of the shower when we arrived at their dressing room. You'll see, in the pictures, that he's in the background, without a shirt. The band signed a CD, and gave us a set of drumsticks with the band logo on them. I even got a kiss on the cheek from Gary, the lead singer, which seemed very genuine. When we left the concert, I felt like there is goodness in all walks. Brian and I could have stayed for the aftershow party, but I was ravenous, and wanted to make sure I could eat before bedtime.

All morning in the hotel, and for much of the later afternoon, I slept. The Allegro Hotel was very generous with us as well, in part by giving us an incredible room for next to nothing. In addition, they did not balk when we asked for a later check-out time. Well, I'm going to get back to my Sunday evening with Brian. Please keep visiting the site, and please keep sharing your thoughts. I'm a regular visitor here, don'tcha know...

Love,
Patty

Snow Patrol with Brian



Snow Patrol on stage -- amazing! (click on the pics to see larger versions)

Briefly...

Hi everyone:

We'll be writing with all the details later, but we did want to drop a note to say that we had a wonderful Saturday evening, and we're having a nice relaxing Sunday morning. Patty is feeling a bit nauseous this morning, and weary from yesterday, but is otherwise doing pretty well. More later...

Love,
Brian

Zofran the Magnificent

Hi everyone:

So far--and this is said with much knocking on wood--two doses of Zofran a day seem to be doing the trick in helping to manage Patty's nausea. Although she still experiences moments of queasiness, she has not been battling the constant urge to throw up.

Today, Patty has been doing some light laundry and other domestic tweaks, and has been putting together an extensive list of items she absolutely must have for a single night out on the town. To give you an idea, among the items on this list are complete clothing choices for both Saturday and Sunday, detailed right down to the underwear. She has even reminded herself that for Sunday she will need socks. This commitment to lists is perhaps the only reason Patty hasn't yet added Altzheimer's to her ever-growing list of ailments.

I spoke yesterday with the road manager for Snow Patrol's current U.S. tour. Barring any major unforeseen complications, we're on for tomorrow night. We're both pretty excited--this is a big event for us these days. Although the special events like the concert tomorrow are wonderful, we have really enjoyed taking advantage of any moment in which Patty is feeling well. It's funny, but when Patty is able to join me on an errand, such as a trip to the grocery store, it now seems like a date.

Our neighbors Jim and Trish visited briefly last night, and invited us -- their treat -- to join them for a night at a bed-and-breakfast in Naperville in late October (Thanks, guys.)

That's it for now. The kids are leaving for the weekend shortly, so I think we'll opt for an early night so that our patient preserves her energy.

Love,
Brian

New and improved?

Hi everyone:

Patty started the morning feeling under the weather and depressed but, after taking Zofran early in the day for the first time, describes her state now (10am) as "a million times better than yesterday." Not too many people would count "not too sick" as a good day, but we have to play with the cards we're dealt for now. I want so much for doctors to discover just the right mix of meds to make Patty truly comfortable and energetic. I can see the toll the sickness has been taking on her, emotionally, even though she largely succeeds at masking it from others.

Patty's blood was drawn today, so that doctors can check her white blood cell count, which had been low over the weekend. I'll share the results when they come in. Her PRA will not be checked until late in the month. Of course, we're both impatient and somewhat apprehensive about that result.

We're looking forward to the weekend, and hope Patty's body doesn't betray her before the concert on Saturday. We're like teenagers in our excitement about this night out; it's really rather pathetic. Our plan is to really take it easy on Friday night, so that Patty's batteries are fully charged.

Today, we have some errands to run and a reporter visit in the early afternoon; other than that, I'll just work on keeping Patty from wearing herself out.

Love,
Brian

Apparently, lupus runs in families

Hi everyone -- I know I'm milking this, but...

Why digital cameras should not be left within kids' reach

Another pic from the fundraiser

Hi everyone:

Here's a picture we really like from the fundraiser -- shared by Heather Stanich, a colleague of Patty's and a friend of ours. We wish Devin and Colin could have been there, but it is a good pic of the five who live here full-time -- and it's a pleasant memory for all of us.



Love,
Brian

More of the same, unfortunately

Hi everyone:

In the documentary Super Size Me, Morgan Spurlock threw up after eating one of many meals at McDonald's. In a classic reversal of this formula, Patty requested a meal from same as a means to relieve her nausea. For the most part, and so far, the Big Mac, fries and a chocolate shake have worked. I think we should get some free meals for the plug, and for the photo full of product shots. Patty's skin tone might not be much of a product ad, though. She's been pretty pale these days.

I didn't write yesterday...my apologies. To be honest, it's hard to write some days, when all that transpires is nausea and vomiting from morning to night. All this does is highlight how helpless we are in helping our patient. Besides, I try to explain to Patty that on the days that the Sox lose, her problems seem to pale by comparison. Okay, okay, settle down...what I meant to say is that her problems are similar by comparison. Tough crowd...

Patty felt ill yesterday and even worse today. She started her morning with what I've heard Kevin refer to as "yawning in technicolor." As you might imagine, Patty is becoming quite frustrated by the constant battle with her digestive system. The most discouraging aspect of this is that we know she will need to stay on many of these drugs for a very long time, if not the rest of her life.

Patty's insurance company has been hard to sway on giving Patty enough of the antiemetic Zofran to keep her stomach under control. We think Patty may have made some progress on this front today, by working out a mail-order-drug arrangement. Having said this, if anyone out there in the medical field has samples of Zofran kicking around the office, please send them our way...at $45 per pill, they're not cheap.

With every passing day, I admire Patty more and more. She can spend an entire morning and most of an afternoon struggling non-stop against gastrointestinal distress, and still finds enough strength to be warm and pleasant with the kids when they get home from school. Through all of this, she continues to be a wonderful mother, wife and friend. I'm a lucky guy.

Love,
Brian

P.S. That last segment sounded a bit like one of the old ads for Enjoli -- remember? Go Garcia, go Sox...

Feeling just well enough to socialize briefly last night



Is it the most vile, frightening and evil force in the universe -- or is it just Kathleen? You be the judge... Love ya, kiddo...

Monday, Monday

Hi everyone:

Patty has had a fairly rough day today, all around. I awakened her at 5:30 am with yet another nightmare, and we never went back to sleep. Patty started the day with a headache and nausea, and by mid-morning was vomiting. By later in the afternoon, she started to feel a bit better, and even mustered up enough energy to make a bead necklace of which she was really proud.

This weekend, we are going to see Snow Patrol in concert, and plans include an opportunity for Patty to meet the band. Snow Patrol is #1 on the pop charts in England and Ireland, and is really catching on here in the U.S. Their music is great.

Also, the Allegro Hotel has offered Patty a deal too good to refuse on a room Saturday night, which will save her from doing a bunch of travel after a long evening. Patty is very excited, and is really hoping she'll have a great day, healthwise, on Saturday. I hope everything goes smoothly.

Other than that, we don't have a whole lot to report. More tomorrow...

Love,
Brian

Home again

Hi everyone:

Just a short post this time -- Patty is home. She left the hospital last night at around 6:30 pm, and had a really fun first evening back in her own space. She has been mostly taking it easy today, after running some errands with me this morning. She probably would have napped more this afternoon had I not screamed my head off at the Sox. I'm being far less venomous about the Bears (at least so far.) More when there's more...

Love,
Brian

Release day?

Hi everyone:

Patty had a minor upset this morning when nurses told her she wouldn't be starting her second round of IVIG until six o'clock this evening. She called the transplant coordinator, who called the cardiologist, who then came to tell Patty she would start her infusion at 11am. Barring any unforeseen events, we should be leaving the hospital by early evening.

Yesterday, Connor punctured his foot on a piece of metal in our backyard. Our neighbor Denise once again proved how much of a great friend she is -- she handled all aspects of getting him checked out at the doctor, on a day that was already pretty rough for her. Denise also made a beautiful stained glass window for the fundraiser, and has consistently been there to help. What is truly amazing is that she's such a great person, and yet she's a Cubs fan. Some of life's mysteries will never be solved, I guess.

Fortunately, Connor did not need stitches, and should be just fine. Of course, the whole experience brought out the maternal side of Patty, who was a wreck because she couldn't be there to comfort Connor. We're pretty proud of PJ, who really stepped up in a big brother role.

On Thursday night, Cindy stayed overnight with the kids, and Neil is spending the day with them today. We're very fortunate to have so many wonderful friends and family members.

One of the transplant team members shared with Patty that she's a bit worried about the whole lupus issue. Although all of the recent tests came back negative for systemic lupus, there's a very real chance it would be masked because of the cytoxan Patty takes. Rheumatologists want to test Patty without cytoxan to confirm a diagnosis, but the cardiologists feel strongly that Patty should stay on the drug because of its antibody-fighting qualities. So, for now, we know that Patty has some form of topical lupus, but we may be waiting for some time before we get a clear picture of whether she has a systemic variant of the disease.

Patty's white cell count is low right now, which doctors attribute to the plasmapheresis of the past few days. She'll need to go to Edward to have it checked sometime next week.

I have some work I need to get out the door in an hour or so, so I will sign off for now. If there's more to report later, I'll get back with you.

Love,
Brian

Round two of plasmapheresis is complete

Hi everyone:

Patty finished her second round of plasmapheresis today -- which took 77 minutes in total. We find it somewhat amazing that the machine works so fast to move blood out of and back into the body.

Unlike yesterday, doctors transfused Patty with some additional human plasma, which made her feel a little queasy. I was reassured by the blood bank doctor that the plasma is free of antibodies and is therefore no cause for concern as regards Patty's PRA.

Patty experienced a common, temporary side effect of the process -- tingling around the mouth -- which apparently is a consequence of some lost calcium. Her blood pressure is a little on the low side today, as well, which is also pretty common for patients undergoing the process. I should be back to you with more details after the transplant team does its rounds.

Love,
Brian

TGIF? What the hell difference does it make?

Hi everyone:

Friday, Monday...whatever...half the time we can't even tell what day it is.



As I write this, we are waiting for the plasmapheresis folks to arrive for Patty's second go at the procedure. She has been receiving heparin shots to keep her blood from clotting during the process; as you can see from this photo, she's collecting a few bruises on her torso from all the injections, which Patty describes as "the most painful shots I've ever been given."

Unfortunately, the heparin has worked so well at thinning Patty's blood that they will likely need to transfuse some plasma as part of the procedure. This, of course, immediately made me panic a little about introducing new antibodies into Patty's system. I guess we need to invest a little faith, here, though; I presume this plasma has been stripped of antibodies. I can worry about just about anything, though, when it concerns Patty; hopefully, it doesn't become a burden to others too often.

Patty is having a pretty good day, although it started out a little rough. The pharmacy here still seems to be brutally out of sync with Patty's meds regimen -- as a consequence, Patty threw up early this morning. If the plasmapheresis starts soon, we may be able to start IVIG infusions later today and could be out of here sometime later tomorrow. Of course, we've learned many times now that getting too excited about leaving this place usually leads to disappointment.

More soon...

Love,
Brian

Tackling some work from my new UCH "office" -- thanks again, Luke



We're still finding ways to laugh and goof off these days

The Adventures of Mulva the Nurse

Hi everyone:

For the past three days, Patty has been cared for by Katie, a wonderful nurse with a warm personality, a great sense of humor and a genuine concern for Patty. When we first met Katie, Patty was convinced that she looked exactly like "some actress", but we could not figure out which actress Patty was picturing. Finally, we came up with it. In our opinion, Katie looks a lot like a younger Susan Walters, who played Priscilla Presley in a miniseries but who is most memorable as the girlfriend whose name Jerry could not remember in a famous episode of Seinfeld. So, without further ado, we bring you...Mulva...er, Dolores...er, Katie.

Seriously, though, one of the few ways to take away the unpleasantness of being stranded in a hospital is to be looked after by someone who really excels. For Patty, Mulva is that nurse.

More on Patty in a few...

Love,
Brian

A really good day

Hi everyone:

I forgot to mention this in the last entry -- Patty is having a really good day. You don't hear that from us too often.

Ho hum

Hi everyone:

There's not much happening today -- just sitting around, mostly, and of course eating and eating and eating. Round two of plasmapheresis takes place tomorrow, followed by IVIG and, with luck, a release sometime Saturday evening or Sunday. We're hoping that this will mark the end of hospitalizations for a little while.

MB visited for a while this morning, and Kathleen is here as well. Patty is happy to be on the third floor, instead of the fifth, because the amenities seem more current. The nurses are wonderful, and are gracious enough to laugh at most of my bad jokes.

I had a brief conversation this morning with a reporter from the Aurora Beacon. She will be visiting us at home next week to discuss a possible story about Patty's situation.

The highlight of the past 24 hours, I think, was the full-speed piggyback run down the hospital hall last night -- hey, you have to fill the hours somehow.

Love,
Brian

More conversations, more answers?

Hi everyone:

Patty came through plasmapheresis with flying colors -- enough so that doctors are talking about letting her do future rounds (once a month) as an outpatient. Of course, we know nothing about outcomes as yet, but at least the process went fine. She is eating a hearty lunch of soup, fruit and bread as I write this. Patty will undergo a second round of plasmapheresis on Friday, and then will be hit with another dose of IVIG.

Patty's PRA was tested based on a blood draw late in her hospitalization last week. Her antibodies had not dropped. The cardiologist is hopeful that the combination of plasmapheresis and IVIG will be enough to start to move the numbers down; another PRA test will be taken shortly. Doctors have speculated that Patty is experiencing something of a "double whammy" -- where her antibodies are not only attacking the cells of strangers (as the PRA test shows), but also her own cells (hence, the rashes.) This is somewhat of a mystery doctors hope to solve.


Rheumatologists shared with us that all but one of the tests for systemic lupus have been completed, and thus far the results have been negative. This is good news, in a sense, because it means that the form of lupus Patty has is more manageable with topical treatments. However, a diagnosis of systemic lupus might have provided some answers as to why all of this has happened to Patty. Here's the other wrinkle, though -- because Patty has been on cytoxan for some time, and cytoxan is a treatment for lupus, it's possible that Patty has some form of systemic lupus but it may have not been measurable because the cytoxan may have driven it back. The bottom line here is that we continue to have more questions than answers. Ultimately, though, the approach they would take to address the lupus is the approach they're already using to address the antibodies -- with doses of cytoxan.

We don't expect to hear much more today. I'll be sure to provide an update when we learn more.

Love,
Brian

Plasmapheresis...LIVE!

Hi everyone:

I'll provide details later, but here are a few VERY recent shots of Patty's plasmapheresis; she's cold, but is otherwise doing just fine.

About half the plasma that will be removed:



Patty being plasmapherised:



A close-up of the machine

The waiting game again

Hi everyone:

After a day in which we were more-or-less on standby, we learned at 5pm that a hospital bed was available for Patty. If you haven't been reading earlier postings, shame on you (just kidding) -- but Patty knew she was coming back to the hospital for treatment and more testing this week. We struck out on the 75-minute drive, and were finally situated in the room around 8pm.

I'm learning that I presently lack the requisite patience to be the spouse of one needing more extensive care and hospitalization. I pretty much expect that from the moment we arrive, Patty should be getting answers and receiving treatment. Again and again, Patty has reminded me that my thoughts and wishes are just that -- wishful thinking. As I write this, at 9am, not a lot has happened so far, other than two blood draws, a heparin shot (photo above) and relentless rounds of explaining of Patty's medical history. We did find out, just this moment, that Patty is scheduled for plasmapheresis at some point today -- that's all we know for now.

To be honest, the biggest event since our arrival was probably my no-holds-barred, flailing and shuddering nightmare at 3:30 am. Patty was relieved that I was sleeping in the gibbet (they call it a "cot") rather than in bed with her. I'd have been pretty embarrassed if nurses came running and found me in the bed and our patient in a crumpled heap on the floor. I'll be sleeping at home tonight, so you can take comfort in knowing that my night terrors will victimize the kids rather than Patty.

Patty seems to be in pretty good spirits for the most part, although she has been experiencing headaches and nausea that we suspect are a result of her medicine regimen getting thrown out of whack.

That's it for now. More soon...

Love,
Brian

Making the most of the weekend

Hi everyone:

Patty has had several ups and downs in her health this weekend. As I write this, she is feeling nauseous, shaky and weak, but is mustering the energy to spend some time with the kids and to socialize with friends. Her cardiologist suggested that salt consumption isn't a problem -- in fact, for Patty, it may be a benefit -- so Cindy and I stopped at Farm & Fleet to make sure Patty was covered off on the salt front. The picture captures Patty's excitement about the gift.

Today has been a bit rough for our girl. Patty vomited this morning, and has been running a low-grade fever, which we think might be symptomatic of the newly diagnosed lupus. Yesterday, though, she felt pretty energetic for much of the day and evening. Regardless of her condition, though, she was happy to be in her own home.

Today, we have the kids around the house and are being close as a family. With daybreak we expect another round of hospitalization, provided the hospital can find a bed. With any luck, we'll soon have more information about lupus as it relates to future plans for Patty. Also, with luck, we'll see the antibodies make a departure.

Connor came home for a visit on Saturday and went out for mini golf, batting cages and go-karting with his Uncle Neil and I. It provided a nice diversion for a little guy who is having a rough go these days, although there was an injury -- Neil redirected a 65 mph fastball into the top of his foot, causing a delightful blue hematoma. I'm planning to try to come up with something fun to do with all of the kids today -- perhaps more go-karting at another place?

Things are a bit chaotic around here right now, so perhaps I'll be back with you later on.

Love,
Brian

Sharing a laugh Sunday evening



Connor the speed demon -- he knew which car was fastest, and proved it