A nice day out

Hi everyone:

Patty started the day with some nausea and headache, but is still finding Cytoxan to be more tolerable than CellCept. Later in the afternoon, we drove to Evanston to attend the engagement party of our nephew Luke (and his fiance Nicole.) Of course, through much of the party we watched the Sox vs. Sox finale that dragged on for 19 innings; fortunately, Tadahito Iguchi came through in the end. When Ross Gload made an error in judgement that cost the White Sox a run, Patty, who usually chastises me for being too emotional about the Sox, grumbled harshly: "Ozzie should yank Gload into the dugout and bitchslap him for that." That's the spirit, honey.

We collected PJ, Kelly and Connor after their weekend with Peter and Rachel -- and, for good measure, we added Caleigh and Tommy (Joe's children) for a sleepover.

By the end of the day, Patty was getting pretty tired and not tolerating the heat and humidity very well. This pretty much goes with the territory these days.

I took a few more pictures during the party today -- here they are:

Ben and Emma



Brit (Joe's daughter)



Patty's brother Neil is ambushed by Luke (the groom-to-be) and PJ



Emma (I could do a blog just of pictures of her)



And the best looking, most amazing person ever -- working on the blog

More pics from the kids' weekend

Peter and Rachel shared these photos from the weekend:

A much better day

Hi everyone:

Patty is having a much better day today, after two days pretty much out of commission. She seems to be tolerating Cytoxan well, has been eating more-or-less full meals again, and even started into cleaning-the-house mode before I insisted that she ease the pace. We've been out of the house for a couple of hours on errands, and have even started to make sense of the tangle of mail that had up to this point seemed pretty daunting to both of us.

We're feeling pretty badly that Colin's graduation from grammar school a couple of weeks ago came and passed without much mention from this side of the border, although we're looking forward to seeing pics and video of the event. Our original plan was to pick the boys up in Canada at the start of the summer (and to attend Colin's graduation in the process) and drive them back as a family at the end of the summer. In retrospect, what seemed to be an entirely reasonable plan a couple of months ago seems entirely wishful thinking today. Colin, if you're reading this, we'll celebrate when you visit.

In just a moment, we're going to tackle a short, slow-paced walk, just to get some fresh air after a couple of days pretty much cooped up. We've always enjoyed our walks together, so on the rare occasions when they're still possible, we usually jump at the chance.

I read a quote recently that made me think -- from Lewis Carroll:

"There is no use trying," said Alice. "One can't believe impossible things." "I dare say you haven't had much practice," said the Queen. "When I was your age, I always did it for half an hour a day. Why, sometimes I've believed as many as six impossible things before breakfast."

More later...

Love,
Brian

P.S. To the anonymous writer who queried about the status of our freezer and its contents -- as it turns out, the freezer's circuit breaker had blown -- so, although we lost a bunch of food, the freezer itself (and some stuff at the bottom) were saved. Whew...

Kids having fun

Hi everyone:

Peter and Rachel shared several photos from the kids' visit. Here are a few:

Kelly with Sam (Peter & Rachel's new baby)



Connor with Ben (Peter & Rachel's other son)



PJ and Sam

A bit better today

Hi everyone:

Day one of Cytoxan seems to be a little better than was day one of CellCept, although it's only been a few hours. Patty is still feeling pretty miserable, but is a little less nauseous than yesterday. She was even able to stomach more than half of a DQ Butterfinger Blizzard, and has hinted that she might eat a bowl of chicken noodle soup later on. As you can see from the picture, Patty had a brief visit from our neighbor Denise, who is working on a stained glass piece as a fundraiser item. Our neighbors Jim and Trish are going to help with painting our house so that it's fresh (and sterile) for when Patty finally gets a heart. If you've been to our home recently, you'll see the work Jim has already done on our behalf.

As most of you know, Patty's siblings are hosting the fundraiser on her behalf on July 21 at Molly Malone's in Forest Park. Patty is looking forward to this evening -- so much so, in fact, that she asked her doctors to hold off on her next IVIG treatment until the following week. As part of the evening, items will be offered for auction and/or raffle; some will also be offered via silent auction. To see some of what will be auctioned, and how you can participate, please visit the Heart for Patty site. Please check back for updates, as I understand several items will soon be added.

That's it for now. I'll post more when there's more to share. Again, as always, thanks so much for your support.

Love,
Brian

Yep, it's official...CellCept really blows

Hi everyone:

As you can see, today was a less-than-stellar day for Patty. Less than 24 hours after being put back on CellCept, the drug was discontinued yet again. Patty spent the day in bed with fever, terrible headaches, nausea and vomiting.

Tomorrow, she'll try Cytoxan, another chemotherapy drug, in the hopes she'll find it more tolerable than CellCept. I sure hope so, because Patty is really quite miserable.

Patty's sister Kathleen and brother-in-law Don bought Patty a TV to replace one of the two televisions that were destroyed by a power surge last week. Patty was really thrilled, especially after a long afternoon in bed without access to Judge Judy. For some reason, the lesser problems like appliances breaking down seem like insults added to injury.

The kids are visiting with Peter and Rachel until Sunday, at which time we hope to join the engagement party for our nephew Luke.

Hopefully tomorrow will bring better health to Patty.

Love,
Brian

P.S. Now we REALLY think someone's gunning for us. We just went outside and discovered that our freezer also had fallen victim to the lightning storms of a couple of days ago, and all the food inside is now garbage. We just can't seem to catch much of a break these days.

The power of a smile

It's late. I just spent a few moments scrolling through the photographs in this blog and noticed how easily Patty smiles under almost any circumstances. Perhaps she's just tolerating my quirks and annoyances, or perhaps she's just determined to be happy no matter what falls in her path. I don't care about the reason -- I just love the outcomes. That's the thought I'll hold on to as I go to sleep tonight. Okay, I'll also think about the fact the Sox won again -- but I will also certainly think about that smile.

Not much news...but an eye-opener for me

Hi everyone:

On this afternoon's menu for me was a sizeable helping of humble pie. There really have been no major developments -- except in my understanding of Patty's situation. It turns out that I have been laboring under a fairly significant misconception this last little while. Patty did not have the same misconception. I feel a bit foolish, and I also feel more than a little distraught. I also worry that I've misled others about things, so I apologize now for any information I've offered in error. I'm hoping this time I can get the facts straight.

This afternoon, we had the opportunity to ask some questions of one of Patty's key cardiologists, Dr. Costanzo. Our conversation focused on the antibody issue and alternatives that might arise in the future. As I've reported previously, tests of Patty's blood against a sample of 100 donors yielded two results -- first, 65 percent of the sample was killed by antibodies in Patty's blood. Then, 100 percent of the sample was killed by some form of cellular reaction. I had interpreted these results to mean that Patty would be a viable candidate for 35 percent of donor hearts, and that she could anticipate some form of manageable rejection challenge regardless of what heart she received (hence, the 100 percent.) As it turns out, of the 100 hearts they tested Patty's heart against, ZERO would have been in any way viable for her -- in essence, she rejected 65 percent of the hearts on two levels! When I asked the doctor what the likelihood is of them finding a heart without successful immunosuppression, Dr. Costanzo said, "It's not impossible." So my weekend "hunch" was a bit more of a long shot than I had previously considered.

How's this, though, for an against-the-odds plot twist? Even though Patty's blood rejected 100 percent of the test sample according to that second indicator, the crossmatch did not reject the potential donor heart from last week on this second indicator. Unfortunately, the 65% issue did rule out this potential donor, but there's at least a glimmer of optimism in this, don't you think?

Our energies, then, need to be focused on how Patty's antibodies can be driven down, because that should significantly expand her potential pool of donors (in relative terms, anyway.) If the immunosuppression at 90 days shows limited or no change, doctors will consider either repeating the cycle or trying other approaches, which could include plasmapheresis or, as was offered today, total body irradiation. I asked for the likelihood of success in reducing Patty's antibodies and Dr. Costanzo said, "There's no way of predicting."

Dr. Costanzo said that she has had success keeping transplant candidates going on IV milrinone for up to two years -- so, as long as Patty's heart doesn't pull any more sudden tricks, she should have time to find a good match.

If Patty's antibodies are never reduced by chemo and/or other treatments, the odds of her finding a viable heart donor could be pretty slim, and she might later need to consider a left ventricular assist device, or LVAD, as a solution. The problem with the LVAD is that it too would further increase Patty's antibodies, so the vicious cycle would continue. As we've mentioned before, another wrinkle in all of this is that hearts transplanted in those with powerful immune systems may wear out more quickly than in others.

Doctors decided to put Patty back on the CellCept medication today; the drug had been discontinued because of blood pressure and fever concerns, but doctors feel it was more likely the IVIG than the CellCept at the root of her problems. She will receive her second dose of the IVIG after the fundraiser. She will continue these and other immunosuppressive drugs up to and beyond her transplant. As Dr. Costanzo explained, "We are shooting for accommodation more than outright tolerance with a new heart."

Well, that's it for now. Sorry for any confusion I may have caused. Please continue to have good thoughts for Patty. She's everything to me, and I'm sure she means a lot to all of you.

Love,
Brian

P.S. In spite of all of this, I did end up with a few pics, which to some extent belie the somber nature of the afternoon. These were taken before many of the questions were asked and answered.

Dr. Costanzo (perhaps the happiest, cheeriest doctor ever) and Patty (well, her head, anyway):



Patty with what she'd like for her birthday (August 5):

Fourth of July passes without event (bummer)

Well, my hunch that Patty would get a call for a heart this past weekend bore no fruit. Our Fourth of July was mostly uneventful. We visited our friend Barb at Moon & Star in Sandwich (a very cool store...you should check it out if you're in the area), watched a bit of the drubbing the White Sox administered on the Orioles, and spent a couple of hours in the evening with our neighbors Jim and Trish.



Patty has been doing remarkably well since her dose of IV milrinone was ramped back up. Her breathing has been almost normal, her headaches have not been nearly as bad, and she just generally seems to be faring better than in days past. Today, Patty has a routine appointment with her cardiologist at Edward Hospital, Dr. Costanzo. If anything new emerges from our discussions, I'll be sure to add a post.

We've been reading the blog that chronicles the transplant journey of Peggy DiNunzio, a heart transplant recipient with whom Patty has been exchanging emails. We're slowly making our way through it, and I've found myself already choked up several times. Some of my emotions, I think, are from understanding, and some are from anxiety -- it really sounds like they've been through a great deal. Lately, Patty has expressed some fear about the future, and about the changes that will inevitably accompany her medical travails. Still, all things considered, her strength has been pretty inspiring.



We're hoping to bring Devin and Colin down within the next couple of weeks, so that our whole family is together (even if for just a while.) Normally, we would have brought them down earlier, but this is no normal year. Patty's heart was warmed by a comment Colin left on the blog a few days ago, and I think it made us miss the boys even more. PJ, Kelly and Connor returned late last night from a long weekend with Steve, and will again be on the move later this week -- they plan to visit Peter, Rachel, Ben and Sam for this coming weekend. We're grateful to everyone who has helped keep them happy and active this summer.



Please keep your fingers crossed that a new heart will come soon.

Love,
Brian

Misplaced optimism?

Hi everyone:

For some reason, I've been convinced all weekend that Patty would be getting a call for a transplant, even though the odds against it are pretty significant. Given her track record of needing to be hospitalized on or around holiday weekends, I thought for sure this holiday would be no exception.

In any event, Patty has had a pretty good weekend, although she did sleep for much of the day yesterday (Sunday). We visited a bead shop and a garden center near our home, watched two Sox games (one good, one not-so-good) at a local restaurant/bar and attended a party hosted by Greg and Sandy, our neighbors. We even made $2 bets on a couple of off-track betting long shots -- based mostly on names that seemed relevant -- "Wait a while" was one that seemed especially appropos for these times.

Patty has suggested to me that blog visitors are probably getting tired of seeing picture after picture of her doing day-to-day things. I realize this might be silly, but I feel compelled to have mementos of almost every activity these days, and a trip to the store together seems like a special occasion. So please bear with my obsession -- imagine how Patty must feel with a camera constantly in her face.

On the health front, there isn't much to report. Patty's blood was tested and showed an abnormally low glucose level -- so low, in fact, that nobody believes it is accurate. Her blood will be tested again within the next couple of days. We did find out that doctors won't even test her antibodies for at least 90 days, so we're not too optimistic about her getting a transplant over the summer. Then again, I still keep having this feeling about this holiday, and it's not over yet...

Love,
Brian

P.S. If you don't want to see the pics, you could leave the site now:

Side effects to come

Hi everyone:

I've been reading a fairly horrifying book about transplants that offers an extensive and frank description of the potential side effects of the drugs they prescribe to transplant patients. Based on my reading, this is roughly what Patty should look like in the weeks immediately following her transplant:

The quest for roast chicken

Well, two things happened last night. First, Patty's breathing improved dramatically, which did wonders for her energy levels; she even danced later in the evening when I sang Bizarre Love Triangle at karaoke. Second, she had a very specific food craving -- roast chicken -- which we indulged by visiting Hugo's Frog Bar in Naperville. To my surprise, there aren't a lot of places out this way that have roast chicken on the menu (insert joke about rural communities here.)

One of the side effects of Patty's medications, it would seem, is that many foods don't taste right anymore. She actually threw out several food items from our fridge the other day, thinking they were spoiled, before realizing that perhaps the problem was her sense of taste. When she does crave something specific, I try to find a way for her to have it, because her appetite is unpredictable these days.

Today (Saturday), we are going to drive around and do some window shopping, perhaps in Sandwich, IL.

Sorry there hasn't been much of substance in our postings of late -- don't worry, I'm sure there will be more than enough drama in the weeks and months to come. Go Sox!

Love,
Brian

P.S. Happy Canada Day! (insert joke about me here)

Around the house

Here are a few more pics from today:

Dinner and a movie

Hi everyone:

Here are some photos from yesterday's lunch with Patty's Aunt MaryAnn and her cousin Mary:







After lunch, we took the kids to see Superman Returns in IMAX 3D. Patty continues to struggle with shortness of breath. Keep your fingers crossed...Patty has a bad track record of ending up in the hospital on long weekends.

Love,
Brian

Struggles with shortness of breath

Hi everyone:

Patty has been struggling with shortness of breath over the past couple of days. For some reason, I always find this to be the most unsettling symptom of her heart failure. Her doctors have again increased Patty's dosage of milrinone, which they hope will increase her heart's efficiency and help ease her breathing. Unfortunately, the increases will likely also translate into more headaches, which Patty is regarding now as the lesser of two evils.

Patty's home health nurse drew blood today, which will be tested to see if Patty's antibodies are responding to chemotherapy...please keep your fingers crossed. Patty is thrilled that her nurse Mariska was able to draw blood from her PICC line, saving Patty from at least one stick.

Our family is meeting with Patty's Aunt MaryAnn and her cousin Mary for lunch today. It's so nice to have so many visitors -- I think it boosts Patty's spirits. We had a wonderful dinner with Patty's brother Mike, his wife MaryKate and three of their five kids two nights ago. Their daughter Emma is such a beautiful, fun baby.

As noted, this is Emma...a beautiful, fun baby (sorry the pic is a little blurry)



And this is Patty, a beautiful, fun babe -- checking blog comments



More soon...

Love,
Brian

June 27 -- The first false alarm

Hi everyone:

The University of Chicago Hospital called this morning to check on Patty's health, and inquired specifically if she had a fever -- she did not. They then said not to get her hopes up, but they were cross-matching her against a potential donor heart, and we should stand by for a call.

Five hours later, they called back to inform us that the donor heart under consideration was a positive crossmatch, which means that Patty's body would reject that donor heart, perhaps immediately. It had seemed much too good to be true -- a heart within three days of being listed -- but we did build up some level of anticipation and anxiety. Patty was much more calm about the whole situation than I was. She relaxed (mostly) while I paced, fretted, complained and sighed endlessly. Oddly enough, the person who called to tell us about the crossmatch said, "You'll be relieved to hear that we found out the heart was a positive crossmatch, so you won't need to come down here today." Bizarre...

Last night, Patty and I updated the links to the right of the page. We've removed details about the Dor procedure (not an option), and added more links to pages with good information about transplants, immunosupression and other relevant issues.

Keep your fingers crossed...perhaps the next call will yield a more positive outcome.

Love,
Brian



This photo captures Patty's angst shortly after receiving the "no-go" call.

Fundraiser information

Article written by Kevin O'Mara for the Ascension Dome:

Last year, Patricia O’Mara-Croft, of the Ascension parish O’Mara family, suffered a near-fatal heart attack while working as a teacher at Oswego East High School. While she survived the initial heart attack, her heart was so severely damaged that her functioning has deteriorated dramatically, especially the past few months. At this point, her heart is operating at 15% of normal rate, which simply will not allow her to survive much longer. To this end, she is on the heart transplant list at the University of Chicago Hospitals, and hopes to receive a donor heart soon.

Patty and her husband Brian, together with their children, are hopeful that this transplant will finally bring some normalcy into their chaotic, stressful lives. One of the huge stresses has been the mounting financial burden of countless tests and procedures necessary throughout this ordeal. The O’Mara siblings (Patty is one of eight children, all Ascension alumni) have decided to hold a fundraiser at Molly Malone’s on Friday, July 21st at 7:30PM. The fundraiser donation of $50 includes a full dinner, open bar and raffle chances. The fundraiser could not have been possible without the generosity of parishioners Molly and Mike Riley, owners of Molly Malone’s.

If you would like to be invited to the fundraiser, please see Kevin or Sharon O’Mara or call them at 848-6871. If you would instead like to make a donation, please go to www.aheartforpatty.com and click on the “donate” button.

Please keep Patty and her family in your prayers.

O’Mara Family

Home again...and on the list at last

Hi everyone:

Patty arrived home from University of Chicago Hospital yesterday evening. As of Saturday afternoon, she was officially listed as a transplant candidate, which seems like the best kind of good news amid a sea of not-so-great news. Her category is 1B, which means that she requires constant IV medication (milrinone) to be able to function outside the hospital. A classification of 1A is the highest transplant category, and is reserved for those whose condition is so advanced they cannot leave the hospital, or who require some form of mechanical assist device to survive. Our hope is that Patty will receive a transplant before her condition can deteriorate to that extent.

To prepare for her colonoscopy, which was the final test prior to being listed, Patty had to drink most of a gallon-sized bottle of a liquid called GoLytely, which she described as "salty, soapy water". You can tell she's thrilled.



Many family members visited Patty in the hospital, and even brought her oysters and sushi, which are among her favorite foods. She filled her time with conversation, movies, an occasional test and lots of sleep. On one night home, I visited friends at Kickers, a club of which Patty and I are members. It was a great comfort to be surrounded by people who are all pulling for Patty; at more than one point, I was overwhelmed by everyone's concern.

As we shared previously, Patty's wait for a donor heart may be much longer than for most people, because her antibodies would reject many hearts. To help reduce these antibodies, she has started her chemotherapy, which has proven to be an unpleasant experience. She has been running fevers and suffering through some powerful headaches. It seems unfair, really, that she is enduring this pain on top of everything else, but she's being very strong.

One of her chemo drugs, CellCept, costs $770 for a 30-day supply; thankfully, with insurance, it's only $15 out-of-pocket. I discovered yesterday that her intravenous medication, IVIG, costs about $3,000 per infusion; Patty had two infusions. It's amazing how expensive these things are -- thank God insurance is absorbing a big portion of the hit so far. Patty will undergo blood tests in a couple of weeks to see how effective the drugs have been in reducing antibodies. If they drop significantly, the pool of potential donors increases.

If you would like to visit with Patty, you have a couple of options. You can get in touch with me (omara_croft@yahoo.com) to arrange to visit at the house. Of course, Patty has good days and bad days, so you'll need to be somewhat flexible. Health permitting, Patty will be attending the fundraiser at Molly Malone's in Forest Park on July 21. For details, please contact Patty's brother Kevin at komara@ridgenet.org.

As always, thanks to everyone for everything you've done for Patty and our family. There are already so many people to whom we owe huge debts of gratitude.

Love,
Brian

More fun and games

Hi everyone:

Well, as many of you by now have heard, Patty is back in the University of Chicago Hospital. Over the past couple of days, Patty has been struggling with headaches and nausea. Yesterday, when her blood pressure dropped, we worried enough to call Patty's cardiologist at Edward. Apparently, a drop in blood pressure is often a sign that cardiac output is decreasing, and, therefore, heart failure is progressing. As a precaution, we were encouraged to go to U of C Hospital so that Patty could be evaluated. Originally, after checking Patty's vitals and doing some preliminary blood work, doctors suggested that perhaps Patty could come home. Upon further reflection, however, Dr. Fedson asked that Patty stay for a couple of days. The goal during this period will be to expedite all pre-transplant testing, formally list Patty for transplant consideration, and start her chemotherapy to (hopefully) knock back her antibodies.

Patty has been in remarkably good spirits, in spite of her continued travails. She enjoyed visits today from Sue, Peter, Neil, Joe and Kathleen -- feel free to visit if you're in (or have a chance to come to) the neighborhood. Patrick, Kelly and Connor are visiting with their cousins at Patty's sister MaryBeth's home. Many others have called. Kevin and his (and now our) friend Dennis worked very hard behind the scenes to ensure Patty secured a private room -- thanks very much.

Patty had a CT scan today, to rule out any possibility that her headaches could be from a different cause than a side effect of medication. We haven't heard results, but we're not concerned. We met yet another new cardiologist today. Dr. Anderson explained to Patty that they want to cover all the bases in making sure her future transplant is successful. He used what I thought was a thought-provoking metaphor. He said, "You've had to face tigers to get where you are today, and you know of many of the tigers you'll have to face in the near future. So, the last thing we want to do is to accidentally pass a tiger on the path, and have it bite us later on." (Of course, it turns out that the Tigers were trampled today, and with the Sox again handing the Cards their a**, the Sox are within one game of first place.)

Thank you again for all of your kind thoughts, words and gestures. I've learned from all of this that if anyone can come through this with flying colors, Patty is the one...and I live for this belief.

Love,
Brian

Problems posting?

Hi --

We've been informed recently that some of you may have been having trouble posting comments in response to the various entries. I'm not sure why this would be the case. The first thing you need to do is select the "X comments" line from the bottom of each entry. When you get to the screen below, you first type your comments in the box (1), then you select who you are -- if you have a blog of your own, you use the first choice; if not, use other or anonymous (2), then click on the "login and publish" button (3). I don't know why it says "login", specifically, but it seems to post the comment anyway, even if you're not logged in.

If you still cannot get a message to post, you can click on the envelope icon and send Patty email directly. Please let me know if you're having a problem posting, though, and I'll keep looking for answers.

Brian

A few mostly good days

Hi everyone:

We haven't been writing much because there hasn't been a lot happening, at least on the medical front. We visited with Patty's cardiologist at Edward; she discussed with us the issues with Patty's antibodies, and expressed that it was her belief that Patty could wait a while before a suitable donor heart could be found. This isn't news, but it still sounds unsettling every time a doctor shares it with us.

Both Patty and I made sure we were on the donor registry with the State. If you live in Illinois, and want to be sure you're on the list, visit https://www.ilsos.gov/organdonorregister/

Patty finished up a couple of tests, and is now waiting on a colonoscopy. When that's complete, she'll be listed for a transplant. She will soon begin her first rounds of chemotherapy; we should have more details on this next week. She seems to have good days and bad days. The bad days usually involve nausea and fatigue. My bad days usually occur whenever the Sox lose -- this also usually involves nausea and fatigue. On the good days, Patty seems to have few limits, and I just love to see her energetic and happy. I take a camera with me almost everywhere we go, much to Patty's delight. Here are a few pics of our activities recently:

Patty relaxes at her brother Mike's home, during a party to celebrate Myles' and Elizabeth's graduation. The food, from Pizza Capri (Patty's brother Neil's place), was amazing.

Connor, Kelly and Patty before going out to a family lunch.

Patty in Morris. We went out to do some window shopping, and Patty came away with this hat. I have already made several off-color jokes about it. Feel free to share yours by clicking the "comments" notation below.

Patty faces her fast-food drive-thru demons. You'll have to ask her the story...it all seems pretty bizarre to me. She was so excited about the picture that she tried to grab the camera, presumably so she could take the photo herself.

In the early evening, visiting with friends at Kicker's:

And, finally, the things some will do for others' enjoyment:

More soon. Thanks for everything.

Love,
Brian

p.s. Go Contreras; go Sox.

Tuesday morning

Average cost of a heart transplant:
$200,000

Average annual cost for medication post-transplant:
$25,000

Patty's facial expression as she drank a bottle of barium before a CT scan:
Priceless

Just another day

Hi everyone:

There's not much going on again today, which is just great. Patty has had two pretty strong days after a slew of weaker ones. Aunt Joan, Patty's cousin John and his two young daughters dropped by. We had some laughs, of course at Patty's expense, which helps sometimes to take a bit of the edge off of things. Some of us may never look at a red paper plate the same way again...chew on that. This evening, Patty had a telephone chat with her friend, Kathy Smith, while I watched the Sox win. In some subtle way, I think Patty let me know that I had forgotten to add Kathy to the email list 18 months ago...so sorry, Kathy, and I'm glad you're back in the loop.

Kevin and Sharon have hosted PJ, Kelly and Connor for two nights now. We know they're hurting about all of this, but are also happy that they're spending time with people who can perhaps keep their minds off of things. Devin and Colin still have a couple of weeks of school before summer break. We hope to have them visit for much of the summer, although perhaps we may not be able to have it all be in a single stretch.

If you are reading this particular post with a gripping-the-edge-of-your-seat level of anticipation, you might also like Lake Wobegon Days, by Garrison Keillor. To be honest, I'll be forever happy if I can write like this every day for a long, long time.


Love,
Brian

p.s. Jose Contreras was amazing today.

Nice visits on weaker days

Hi everyone:

Yesterday, Patty had a day of visits, first from our Aunt Sue, and later from our sister-in-law Sharon and her three children -- Amanda, Jake and Declan.

Sue has been a regular visitor to our home, and has proven to be somewhat of a guardian angel to us, with her boundless optimism and warmth toward each member of our family. After Sue left, I read a card that she had left for me, and was deeply touched by its sentiment and its accurate assessment of my state of mind and heart these days. Patty has the most remarkable aunts, all of whom clearly love Patty and worry for her.

Sharon gave Patty a beautiful candle arrangement for our coffee table which has, of course, been immediately pressed into service. Sharon too has been a regular at our home, as have many family members and good friends. There are too many people, and too many situations, to include sufficient thanks in this space -- rest assured, though, our gratitude is huge.

Although Patty felt poorly for much of the day, she did seem to catch something of a second wind as the day progressed. Our friend Jen spent some time with us later in the day.

Today was a low-key day. Patty snoozed for much of the afternoon while I did my best not to be too loud while watching the Sox game. She continues to struggle with fatigue and, to a lesser extent, water retention. As she becomes better informed about transplant, recovery and the associated drug regimen, she has started to feel some anxiety -- although I am routinely awed by how strong she is.

This coming week will be a busy one, so these low-key days are a welcome respite for Patty.

Love,
Brian

Tests, more tests, but not much else

Hi:

Patty finished two more of her pre-transplant tests today. The first was a meeting to discuss her upcoming colonoscopy which, according to Patty, "sounds like a picnic." The second was a doppler of her carotid artery and her lower extremities. If all goes well, she should be on the transplant waiting list within the next couple of weeks. Patty has been feeling especially tired lately, and took two full naps today. Thanks, as always, for your love and concern.

Love,
Brian

Pics of Patty

Hi everyone --

For anyone who is SO interested in everything going on with Patty that you want to see photos, you can see a bunch of recent snaps at www.picturetrail.com -- enter omara-croft for the album name. I will try to keep this more or less up-to-date. I don't know if I'll have time to add captions to the photos (although the photo below is of Patty and her fellow teacher and friend Heather.) Most of these recent pics are from a party with Patty's teaching colleagues and from a gathering we hosted for Patty's students.

Cheers,
Brian

From Kevin re fundraiser

For those who are interested in making a donation on Patty's behalf via PayPal, you can do so by clicking on the following link, which now also appears in the "links" section to the right:

(Posted for Kevin O'Mara on June 7/06)

Some good news

Hi everyone:

Well, as the title suggests, we heard some encouraging news today. Patty had a conversation with Dr. Fedson of the U of C transplant team, and was given the rundown on their plans for her. Patty has a handful of tests scheduled which, when completed, will make her eligible for the transplant list.

Once Patty is listed, doctors will start her on chemotherapy, which she will need to continue for the rest of her life. The drug they are hoping to give Patty is called Cellcept. The good news? Patty should be able to take the drug orally, rather than via I.V., so she should spend far less time in the hospital. For some time, she may also need to go to the hospital for one day each month for intravenous doses of a drug called IVIG.

After two months on the drugs, doctors will evaluate how well the drugs are working in reducing Patty's antibody levels. Dr. Fedson feels that, regardless of the result, they will be able to find Patty a donor heart within a reasonable period of time. Patty will likely still need one session of plasmapheresis, just before she receives a transplant.

Patty hosted a group of students, teachers and friends for a cookout this evening. She looked happy, healthy and gorgeous, and I could tell she was having a great time. It's nice every now and then, I think, for Patty to forget the challenges and just enjoy the moment. It was so, so nice to see her smile.

PJ, Kelly and Connor returned today from a three-day rafting and resort trip with Patty's brother Joe. They had a great time, and we feel they enjoyed a much-needed break from all the confusion. Devin and Colin still have the rest of the month before school is out for them; we hope they'll be able to join us for some of this sure-to-be-chaotic summer.

Love,
Brian

The waiting game

Hi everyone:

Patty has discovered that inactivity can at times be as frustrating as those moments that are more dramatic. We are still waiting to hear from U of C Hospital about what the next steps will be. Each time the phone rings, we hope it's a call from a doctor, as strange as that sounds.

This morning, we went for a short walk, which Patty found very tiring. She seems very weak at times, which still seems surreal, given the levels of energy she so often had in the past. Really good days and equally bad days go with the territory, it would seem.

Patty is hoping to go to her school's final faculty meeting this morning, just to say goodbye for the summer to several of her friends. Tomorrow, we're planning to host a few of her NAHS students for a cookout, weather and Patty's energy permitting. Other teachers and students are welcome to drop by, as well -- please give me a heads-up by end of day today, if you can, just so I make sure I buy enough hot dogs. Our email is omara_croft@yahoo.com.

Friends and family visit with regularity, which helps keep Patty's spirits up.

Not much to report -- just staying in touch.

Love,
Brian

A few new details, and a new friend

We had an opportunity yesterday afternoon to ask a few questions of the transplant coordinator at U of C Hospital, which helped add some clarity to our understanding of Patty's condition.

The test that came back with unsettling results is called a "panel reactive antibodies" (PRA) test. Patty's score was 65% Class I, and 100% Class II. I believe this means that out of every 100 potential heart donations, 65% would be rejected by Patty within a very short period of transplant, and she would likely have longer-term complications with any transplant. As we mentioned previously, the most likely course of action will be to use chemotherapy to kill the antibodies that would reject a donor heart; Patty would need to receive these treatments until the transplant and for a short time post-transplant. We were assured that the chemo drugs they would use (most likely IVIG and/or Cytoxan) are not harmful to the heart, although they do have some potentially nasty side effects and will increase the risk of infection. Along with the chemo, doctors will likely do plasmapheresis, where they will attempt to "scrub" antibodies out of Patty's blood. Although there are no guarantees that the treatments will reduce the antibodies to a sufficient level, doctors are hopeful, and have assured us that there are alternatives should these steps not work.

Today, Patty is not feeling very well. Along with her typical heart failure travails, she has a very sore throat and is somewhat miserable. As a bright point, though, Patty enjoyed a 45-minute conversation with Peggy DiNunzio, a friend of the extended family who received a heart transplant 19 months ago. Peggy clearly has fought a huge battle, and was inspiring to Patty. Patty and Peggy have agreed to keep in touch, and Patty seems very pleased to have someone she can draw upon for information and first-person perspective. A blog for Peggy was maintained throughout her ordeal, and was a source of strength for her and her family. Patty also visits this page often, in the hopes of staying in touch with people. So please keep the comments coming (click on the "X comments" link below.)

Have a great weekend, everyone.

Love,
Brian

Some words from the patient

Dear friends and family:

I apologize for not having posted anything personally before now. This latest news (see Brian's entry below) has left me somewhat blue and introspective, so I wanted to let people know how much I truly appreciate everyone's kind thoughts, words and gifts of generosity throughout all of this. On the positive side, the medication I receive through my PICC line has been a wonder drug in terms of how I feel day to day. Hearing this latest news, however, without further information to understand it, has left me fearful and worried. I guess it goes with the territory.

The meals everyday have been invaluable and the sentiment behind them heartwarming. Those who have pitched in with looking after our kids, and helping us navigate the complexities of this protocol, have overwhelmed us. Our kids continue to display great strength while at the same time showing us how much they need special care right now. My siblings' outpouring of kindness and support has been essential to our coping with this.

To all of our friends, who have provided moral, financial, logistical and other support, I thank you so much. To my colleagues at work, thank you for assuming the extra load you've had to bear in my absence. My husband Brian has been an unbelievable source of strength, always adopting a positive attitude regardless of the obstacles we have faced, and looking after me tirelessly. Because of all of this, I feel like one of the most blessed people in the world. I'm lucky enough to have experienced this outpouring of so much from so many.

Please know that I read all of the comments people leave on this blog, so please keep them coming. It makes me feel closer to all of you.

Thank you all.

Love,
Patty

p.s. Wanna see something nasty? This is what my PICC line looks like:

More challenges

Hi everyone:

We received a somewhat disconcerting call today from University of Chicago Hospital. While reviewing blood tests, doctors determined that Patty has a rare predisposition to generate high volumes of antibodies. This means that she would have a much higher-than-average chance of rejecting a donor heart. The doctors have suggested that Patty will likely need some pretty aggressive treatment -- most likely with chemotherapy -- to kill these antibodies and make her a more viable transplant candidate.

We don't know many specifics yet, but the most likely course of action will be to admit her to the hospital for these treatments for one full week out of every three weeks until a donor heart becomes available. There is a small chance that she may be able to receive these treatments on an outpatient basis, but this would mean she would need to go to the hospital each day for treatment. The doctors are investigating whether or not Patty could receive these treatments at Edward Hospital, which would of course be more convenient for our family.

Another unfortunate wrinkle that goes with this discovery is that she must now have a direct blood-type match with a heart donor. Originally, she may have been able to accept a heart from someone with either O or B type blood; now, she would only be considered for a heart from someone with B+ blood (approximately 9 percent of the population.) The doctors have suggested that Patty may now face a much longer wait for a donor heart.

If all of this wasn't enough, Patty also has a urinary tract infection, which she needs to get rid of before she can complete her pre-transplant eligibility tests. She has had a low-grade fever for the past few days, which doctors want her to monitor closely, because an infection in her PICC line could be dangerous.

Thanks yet again for all of your support. This is just another hurdle Patty will overcome.

Love,
Brian