Thursday, August 31, 2006

A new look?

Hi everyone:

Okay, you need to understand that Patty and I are determined to find ways to laugh at all of this nonsense that is going on with her right now. If you haven't read the earlier blog posts from today, you'll need to read them for context. So, when I heard "lupus", this is what I imagined:



The best part? Patty didn't even know what I was going to use the picture for, and she still made that face, at my request, without question.

Love,
Brian

If you're planning to visit...

Hi everyone:

If you're planning to visit Patty in the hospital, and you're dentally challenged, please keep the following in mind (click on image to enlarge):



There are many other delightful, clip-art-enhanced notices throughout the hospital -- you should stay here sometime and check them out...kidding...

Love,
Brian

Another setback?

Hi everyone:

Today ended up being a pretty emotional day, although we're still not exactly sure where we stand. This morning, dermatologists told Patty that the initial results from yesterday's biopsy of her rash suggest that she has some form of lupus (a chronic autoimmune disease that attacks human tissues, and which, in its most severe forms, can attack vital organs.) Although this can be a serious (but rarely fatal) disease, it can also be more of a nuisance in its less severe forms. Our best guess right now is that Patty's condition would fall into this category.

Some other doctors seem a bit skeptical about the results, in part because Patty had been tested for lupus months ago and the results were negative. Others feel that more testing needs to be done before any conclusions can be drawn. So, now we're back in a holding pattern while doctors do more tests and try to come up with some hard data. To those who were thrown into a fresh state of worry about yet another disease to manage, we apologize -- in the interests of keeping people current, uncertain info may arise from time to time. Please stand by...hopefully we'll have the details soon.

On the positive side of things, we now have online access from the hospital! A friend of Luke's very graciously shared her access info with us. I would thank her by name, but I'm afraid that would leave us open to getting cut off. Thank you, Luke and unnamed-but-much-appreciated person. This morning, Patty was actually in tears because she couldn't read the blog and the comments people post in response; she's smiling now.

More potentially positive news -- one of Patty's cardiologists suggested that if they can get the catheter in place (most likely tomorrow), she may be able to go home for the weekend and return for plasmapheresis next week. We're really keeping our fingers crossed for that one, because we've already been here much longer than we had first thought. Overall, we've had moments of frustration this week that the wheels seem to be grinding slowly, but we have acquired some answers, so I guess we shouldn't really complain. Also this week, Patty's cytoxan dose has been reduced by a fair amount, so this may ease her nausea somewhat and also bump up her white blood cell count.

More soon...

Love,
Brian

Patty wanted some candy, so I brought her a big tub of it -- she's now pretty popular with the medical staff



MB during her visit yesterday



Fine dining with white linens (yesterday)

Wednesday, August 30, 2006

Mostly a non-day

Hi everyone:

Patty remained in the hospital today, and not much happened. MaryBeth, Jeff, Joe and Kathleen visited, as did the three kids who live with us. At one point, the plan was to implant the catheter under Patty's clavicle on the right side. However, once doctors realized that Patty had a PICC line on that side and an ICD on the other, they determined that they would need to do a more permanent line that requires attention in the operating room. This procedure will most likely take place tomorrow, which means plasmapheresis would likely not begin until Friday, at the earliest. We're a bit disappointed about this, because it means we'll probably be spending yet another long weekend in the hospital.

Initial results from the culture studies came back negative; I'm not sure exactly what this means, since the results are just "initial", so as soon as I have a more complete answer, I'll be sure to share it.

After I send the kids off to school tomorrow (Kelly with purple hair -- temporary), I'll be joining Patty again. I hope to have more to share tomorrow or Friday.

Love,
Brian

Tuesday, August 29, 2006

A longer stay than we thought

Hi everyone:

This has been a pretty long day, so I apologize if my thoughts are a bit muddled as I attempt to relate the events of the day and their implications going forward.

The original plan for the day was to have Patty speak with a dermatologist about her rash (which seemed to have abated but came back with a vengeance), and then to place a catheter -- much like her PICC line -- in her chest in preparation for plasmapheresis. Two dermatologists, both of whom were a treat, visited with Patty to discuss her situation. They took swabs for cultures from the rash, and then opted to biopsy two of the freshest sores (my apologies for the gross-out factor here.) This involved cutting two confetti-sized pieces of flesh from her back and shipping them off in a tube for analysis. We should get results tomorrow. Based on the dermatologists' initial assessment, the transplant team decided to wait before placing the catheter for plasmapheresis. The worry here is that whatever is causing the skin condition -- most likely either impetigo or pemphigus foliaceus -- could represent a threat if it were introduced into a surgical wound. As much as we were hopeful things could move along more quickly, we of course don't want to put Patty at any greater risk.

Once the rash issue is resolved, the plan is then to proceed with a couple of rounds of plasmapheresis. Ultimately, we are guessing that Patty could spend as much as a week in the hospital. This is a bitter pill to swallow, but I think we're going to need to accept such sacrifices as the nature of the beast going forward.

Patty's day also included visits from neurologists, who were there to address the issue of Patty's recurring headaches. This was mostly a routine follow-up, we think, because we believe all involved parties regard the headaches as a side effect of the milrinone.

Patty was tired when I left her this evening, and perhaps a bit blue, but was otherwise faring pretty well. Kathleen spent most of the day with us, and Kevin and Sharon visited this evening. I'm going to bed soon, and will head down in the morning with the kids after I've dealt with some domestic matters. I'll update you again as soon as I can.

Love,
Brian

P.S. Is there any lead that White Sox hitters can generate that our pitching this year can't make a nailbiter? Oh, never mind...I forgot my blood pressure medicine at the hospital, so I'd best not get started.

Monday, August 28, 2006

Stranded...can you help?

Hi everyone:

Patty and I have a favor to ask of anyone who can help. The building in which Patty is housed does not have public wireless (WiFi) access. Only hospital employees, or students of the University, have usernames/passwords they can use to access the Internet. Even Comer Hospital, which I had been told has public access, also requires authentication.

As a consequence, I cannot access important, work-related files, and will not have the same freedom to stay with Patty that I would if I had access. For example, I am posting this message from home because I needed to be able to check for client files. Otherwise, I would have been able to stay tonight. This isn't an untenable hardship for one night, but it could be a real problem when Patty is transplanted and has a longer hospital stay.

If anyone knows a University of Chicago student, or an employee of either the school or hospital, who could periodically log into the Internet and provide me with Web access during the time I’m here with Patty, I would be hugely grateful. Of course, I would in no way betray this trust -- I just need to be able to get to email and transfer work files. If you can help, please email us at omara_croft@yahoo.com or call me at 630.788.2005.

Love,
Brian

A pain in the neck...with a purpose

Hi everyone:

Patty underwent a right heart catheterization this afternoon to measure the pressures in her heart. If I understand correctly, this procedure involves inserting a straw-sized sheath into an artery in the neck and then feeding a Swan-Ganz catheter through the sheath into the heart. While in the heart, doctors can explore the fluid pressures and assess the extent to which those pressures could be contributing to symptoms of heart failure. Based on what they find, doctors can then make adjustments to medications to focus on specific findings.

In Patty’s case, they discovered that she had pretty severe dehydration; this was really no surprise, since Patty has been taking in limited food or drink because of her nausea. They delivered two bags of IV fluids, and then measured her pressures, which were then much improved. Doctors also suggested that Patty’s cardiac output is pretty good, all things considered, and that perhaps she has compensated well enough that interventions like VADs and the like may be further off than we might have thought. Keep your fingers crossed...

At 5pm, Patty was transferred from the cath lab holding area to Room 503 in the Mitchell Building. She’ll hold tight for this evening and will likely begin rounds of plasmapheresis tomorrow. As I mentioned in previous posts, this process is similar to dialysis. Patty’s blood will be drawn out of her body through one line, antibodies will be removed, and then the antibody-scrubbed blood will be fed back into her body via another line. Sometimes, several rounds are done over a few consecutive days. Soon, doctors will draw more blood from Patty to see if her PRA (panel reactive antibodies) have declined. Plasmapheresis, in combination with Cytoxan, has been demonstrated to be successful in reducing antibodies, at least over the shorter term. There is some chance, however, that antibodies will come back, which means more rounds of plasmapheresis may be needed in the future.

Generally, our patient is feeling pretty good, although her neck is pretty sore from the procedure, as might be expected. The skin on her neck is blue from the disinfecting solution they use. If and when there’s more to report, I’ll be sure to be in touch.

Love,
Brian

Sunday, August 27, 2006

Gearing up for a hospital visit

Hi everyone:

Last night, Patty and I joined Kathleen, Don, Sean and some of his extended family at Walter Payton's Roundhouse to celebrate Don's 50th birthday. Don chose the Roundhouse because that is where we celebrated Patty's 40th. It's a really nice, really huge restaurant, and better than most places in the area. Patty looked and felt great last night, making for a pretty nice string of more-or-less good days.

I don't know if you've noticed, but Patty is a pretty good sport when it comes to going along with my bizarre photo staging. I suppose that the fact I'm willing to beg until I get what I want could be a contributing factor.

Here's a funny -- or at least ironic -- story. On Friday night, I was using an ATM and some of the buttons weren't functioning properly. I would hit the keys and nothing would happen. Finally, the ATM screen asked, "Need more time?" I turned to Patty and said, "YES...we do."

This afternoon, I'm doing work (and watching the Sox -- 6-1 as I write this) and Patty is pulling things together for her hospital visit tomorrow. The plan is to do plasmapheresis to help reduce antibodies and a catheterization to check Patty's heart pressures. Our guess is that Patty will come home late Tuesday, although if they decide to do multiple rounds of plasmapheresis we might be staying longer. Patty is not at all looking forward to being in the hospital again, although this time it's not for an emergency.

More later...

Love,
Brian

Don & Kathleen



Kathleen & Patty

My beloved


Saturday, August 26, 2006

Anyone for Canadian whine?

Hi everyone:

Perhaps we’re flogging a dead horse, and perhaps we’re feeling unduly sorry for ourselves, but Patty and I are still feeling raw that anyone would caution us about the content of this blog. The whole issue has been our prime subject of conversation since yesterday afternoon.

In a way, it feels like an emotional rift has been introduced between us and the people we most need to trust right now. We understand that the litigious nature of our society has the medical community forever looking over its shoulder, but we also feel a bit slighted that these worries would be directed toward us. I went back through the blog last night, and our earlier entries seem like an advertisement for the medical community. Are we missing something here?

The bigger problem is that we are now wondering if we’ve offended others by being so free to share our stories in a public place. So, if you’ve seen your name or picture here, and would rather it not be posted, please let us know. Our hope is that most people understand that we are just celebrating each and every day, good or bad, and want to be as candid as possible. Okay, enough on this.

Patty and I went out to visit with friends for a couple of hours last night, and then came home to have some quiet time together. My favorite evenings are the ones where we just talk and talk; we’ve had a few of these recently because Patty has been feeling better than usual. Over the years, I think we've come up with solutions to pretty much all the world's problems.

Today, Patty’s feeling a bit nauseous and her stomach is somewhat unsettled, but she anticipates she’ll have a decent day. Put it on the board -- three days in a row. We’re starting to think that perhaps she’s over a hump in terms of the day-to-day nausea.

I’m going to do some work on a client project this afternoon, and Patty plans to just take it easy. If she’s up for it, we’re hoping to join Kathleen and Don at the Roundhouse in Aurora tonight to celebrate Don’s 50th birthday. If more happens over the course of the day, we’ll be sure to be in touch.

Sorry for the whining.

Love,
Brian

Friday, August 25, 2006

More medical clarification

Hi everyone:

Patty and I had a long conversation this afternoon with another of Patty’s health care providers (we won’t name him, but we do trust his opinions a great deal.) This individual was encouraged that Patty’s antibodies had dropped, even if one of the classes of antibodies continues to be at a high percentage. He suggested that progress on these numbers could continue over time, and even if they ultimately needed to transplant against crossmatch, they could be doing so with a less positive crossmatch (or, in other words, a heart better suited to Patty, if not ideal.) He added that although transplanting against crossmatch is not an ideal situation, they have done it successfully several times in the past.

He mentioned that if Patty’s condition were to worsen significantly, an LVAD may be the best option, although he would prefer to avoid this middle step, which involves major surgery and is not without complications and risks. He added that Patty would likely need an external VAD, such as the Thoratec, because the implanted HeartMate would be too big for Patty.

This doctor wants to focus on getting Patty’s antibodies driven down further. Patty will be admitted to the hospital on Monday and will undergo plasmapheresis in an attempt to “scrub” her blood of antibodies. Antibodies can come back, however, so this is not a sure success. Doctors will also perform a catheterization to check how well Patty’s heart is pumping blood. The goals here are to make her a better transplant candidate and make her feel better in the interim.

Doctors may ultimately opt to use total lymphoid irradiation (TLI) as a means to reduce antibodies. The doctor explained that this procedure involves using low radiation doses specifically focused on lymph nodes. Generally, this process does not result in hair loss, illness or other symptoms commonly associated with radiation treatment. However, its effectiveness has not been as extensively documented as other approaches.

Ultimately, the doctor shared that although Patty’s situation is severe, they will be paying close attention to the evolution of her heart failure and will be there to take the next steps whenever they are needed.

Love,
Brian

A different sort of dilemma

Hi everyone:

We are finding today that we are facing a new and unexpected dilemma, and for once it doesn’t directly concern Patty’s health. When we started this blog, our intent was to chronicle Patty’s experience in as complete detail as possible. In part, the goal was to provide information to a number of people in an efficient and appealing fashion whenever they wanted, without loading everyone’s inbox with email about Patty’s latest pedicure. In part, our intent was to illustrate our respect and admiration for those who provide medical and other care for Patty. It has also been a record of Patty's relationships with family and friends. More than anything, though, and more than I would ever have anticipated, this blog has become my personal tribute to my wife and best friend. Patty considers it a special gift. As foolish as this may sound (and I can’t believe I’m sharing this), I feel like as long as I keep writing Patty will always be alive.

Now, to the dilemma. Some of the medical professionals caring for Patty have expressed anxiety over how candid I am being in presenting their views, actions and photographs within this blog. I was perhaps being na├»ve, because I somehow always thought people liked to be recognized for what others admire them for. I certainly don’t want to make people uncomfortable or to embarrass anyone – except perhaps Patty, and she chooses to be with me anyway. What I was told, though, was that some of these professionals may choose not to be as candid and complete in their answers if they feel they will be quoted publicly. This is a risk we cannot afford to take, because good information is what helps preserve our sanity in these situations.

Going forward, I will continue to try to provide a full picture of what is going on, without specifically naming the sources of that information, or sharing pictures of them at work. There’s a part of us both that finds this really unfortunate and sad, because we admire these people, and putting them on the blog makes us feel like we’ve adopted them within our circle. It’s funny – Patty and our family cope pretty well with the harsh reality of her situation, but we seem to fall apart over stuff like this.

Love,
Brian

Okay, this is kinda good news

Hi everyone:

This doesn't hold the same excitement value as a call for a new heart, or winning a lottery, or a White Sox repeat in the World Series, to be sure, but...

Patty has felt well for two days in a row!

For the first half of yesterday, Patty relaxed in bed while I worked at my desk in our bedroom. Mid-afternoon, we briefly toured the Oakbrook Shopping Center before joining Aunt Sue for dinner at Costa's -- thanks, Sue. The conversation and the meal were wonderful. On our way home, we stopped for a brief traffic escape at Kevin and Sharon's in Oak Park. When we arrived home, we lit some candles and a fire, watched the penultimate episode for this season of Rescue Me, and chatted for a couple of hours about Patty, our kids, our years together, our extended families and our future. Through all of this, Patty felt pretty energetic and rarely sick.

As I write this, Sharon and Patty are chatting in our family room. Patty has felt very little nausea or headache today. In a couple of hours, the kids will be gone for the weekend (Six Flags tomorrow, if the weather cooperates), so we should be in for a mostly quiet, low-key weekend. Or, maybe, we'll get that call we've been waiting for...

Love,
Brian

Patty, Sharon & Connor today



Connor snapped this pic of Dad & Mom at Sue's yesterday

Our chat with Dr. Costanzo

Hi everyone:

Yesterday morning, I spent the better part of an hour crafting a blog entry to share highlights of a phone conversation Patty and I had with Dr. Costanzo, Patty’s cardiologist and heart failure specialist at Edward Hospital. Just as I was preparing to post the entry, my PC froze and the message was lost. My tirade, while brief, was legendary, and I just couldn’t bring myself to start afresh. I’m calm now, so we’ll start again.

Dr. Costanzo’s call was in response to an email message we sent to our doctors at both Edward and UCH. We have not yet heard back from UCH, which is a bit frustrating, because we want all perspectives and now feel like we’re stuck in limbo.

Dr. Costanzo is wonderful. We can tell that, on a personal level, she is unsettled by the challenges Patty is trying to overcome, and we sense that she’s worried about Patty’s long-term prospects. She said that as she considers what would be best for Patty, she imagines the advice she would offer to a daughter or spouse. She also said to Patty that, if she could, she would “go out and buy a heart.” It’s nice when you sense doctors see your loved one as much more than a paying client.

We shared the PRA numbers with Dr. Costanzo, and she sounded fairly defeated. I think she had anticipated, or at least hoped for, better outcomes from the chemo. She thinks that plasmapheresis (scrubbing the blood of antibodies) and/or total lymphoid irradiation (TRI) may offer some ray of hope to reduce the antibodies. Although there are no guarantees of success, and the procedures themselves have some associated risks, the doctor feels these attempts are a much better option than proceeding to a transplant against crossmatch.

Dr. Costanzo feels that a transplant against crossmatch is too much of a gamble for Patty. She would prefer to continue to focus on reducing antibodies and to use other interventions, as necessary, until a suitable donor heart is found. This could mean that Patty might need a left ventricular assist device, or LVAD, as a means to survive until a transplant. Unfortunately, an LVAD implantation could further increase Patty’s antibodies, particularly if they need to transfuse blood during the surgery. Our hunch is that, if Patty gets an LVAD, she may never get a heart.

Dr. Costanzo worries that a transplant against positive crossmatch (in other words, with a heart that isn’t an ideal match) could result in acute rejection and/or chronic rejection episodes, which at best could translate into a poor quality of life and at worst could mean no life at all. Doctors at UCH feel more confident about Patty’s chances if we go this route – hence, our desire to hear back from them.

On the issue of heart failure symptoms, Dr. Costanzo said that we should not attach any false hope to the fact Patty seems to display few of the “classic” symptoms of heart failure, which include severe lung congestion and tissue swelling. She said that Patty’s heart failure is every bit as severe, and less treatable, because it reflects drastically reduced cardiac output. In essence, Patty’s heart is getting tired out and will ultimately just wind down and out.

I’ll soon post another entry to share details of how Patty has been feeling, and of what she’s been doing. As you might expect, we’re feeling some distress over the answers we’re getting, and we had a few crying jags yesterday. We’ll continue to focus on the positive, though, and on making sure our patient keeps fighting the good fight.

Love,
Brian

Wednesday, August 23, 2006

PRA update

Hi everyone:

Patty received a call moments ago from Cathy Murks, the transplant coordinator at University of Chicago Hospital. The latest round of PRA results came in. Although the one class of PRA has dropped from 44 to 7 percent (and from 65 originally), the other class has only dropped to 92 percent (it was 94 last time, and 100 originally.) So, although there has been some progress, it has not been the slam dunk we had hoped for as yet.

The transplant team plans to test Patty's PRA again in two weeks, in the hope the IVIG and Cytoxan will have established a more meaningful dent in the higher number. Cathy speculated that Dr. Fedson would want to hold off on advising about transplanting against crossmatch until after those PRA results are available.

Patty is feeling fairly sad and discouraged about these results, as am I. I feel terrible for her, because I know that much of the suffering she's endured for weeks and weeks relates directly to the medications designed to bring these numbers down. To have only very slightly opened the door to a possible transplant is a somewhat bitter pill to swallow.

Keep your fingers crossed.

Patty continues to feel pretty ill and fatigued today, although she is grateful not to have vomited so far.

Love,
Brian

P.S. This really, really, really blows.

Letter to Patty's doctors

Hi everyone:

Patty and I composed an email to her doctors this morning, out of a desire to have as complete a picture as possible of their thinking about future options. We want to be as open and thorough as we can with those of you who are reading the blog, so we share below the letter. We'll keep you posted as to what, if anything, we hear back.

Love,
Brian

Drs. Costanzo, Fedson & Anderson:

We wanted to write a note to express some of our concerns, opinions and questions about Patty’s current condition and future care. Before we get into specifics, we did want to say that we’re entirely grateful for your efforts on her behalf so far. The sense we get is that you are aware of Patty’s needs as a person as well as her needs as a patient, and for this we are most appreciative.

We understand that there are dilemmas that may affect future decisions, particularly if Patty’s PRA levels remain high. We have done a fair amount of research, both on the Web and through conversations with doctors and nurses in our family, and are trying to put together as complete a profile of Patty’s options as possible. We know that, sometimes, a little knowledge can be a dangerous thing, because it leaves open the door to misinterpretation. We’re hoping you can confirm and/or clarify our understanding.

Option One – Stay the course?
If we’re getting this right, one option would be to try other methods to reduce Patty’s antibodies, and just try to hang on through the wait. For example, Dr. Costanzo offered that total body irradiation could be considered as a last-ditch attempt to reduce antibodies. As part of this wait, we might need to consider other means of support, including a balloon pump and/or LVAD. The concern here would be that these devices might increase her antibodies even more, putting a viable transplant further out of reach. Are we accurate in our understanding of this? The skeptics within us are inclined to believe that an LVAD would end up being the last real intervention we could make on Patty’s behalf. When we last met with Dr. Costanzo, she had suggested that Patty may not live much longer with the heart she has, without some form of significant assistance.

Option Two – Transplant against crossmatch?
Another option, if we’re clear on things, would be to transplant Patty against positive crossmatch, if needed, and focus then on finding the right combination of drugs to protect her against rejection episodes. Our biggest worry (and question) here is – if Patty has a history of faring so poorly on many of her medications, including CellCept, are we likely to encounter a problem that we cannot turn back from? Is it possible that we could do some sort of a trial run with samples of these post-transplant medications, just to see how Patty tolerates the drugs? Our biggest fear about this option is that Patty will succeed on the operating table but fail miserably when she starts taking the drugs that will protect her future. This worry would be compounded, then, if she needs to take significantly higher doses of drugs because of transplanting against crossmatch. Are we accurate in our description?

As we think about these options, it seems like we’re collectively facing some sort of medical Catch 22. We hope that you will always be brutally honest with us about the potential outcomes of any of these choices. In other words, if you’re having conversations behind closed doors where you’re saying, “This doesn’t look good,” we don’t want you adding a positive spin when you’re speaking with us. We trust your judgment, but always want to be a part of the conversation.

We have heard doctors from both venues suggest that Patty may need to be hospitalized for an extended stretch in the near future, if her nausea does not abate. For many reasons, we would very much like to try just about anything else before we come to that conclusion. This latest combination of drugs seems to have had some modicum of success in reducing the nausea, so we’re hopeful we can keep tweaking this mix until we find just the right solution.

And now for a somewhat morbid inquiry. From much of what we’ve read, it sounds like most people who are dying from heart failure experience profound edema and lung congestion. Neither of these symptoms have been significant through Patty’s travails. If none of the solutions we are discussing end up being viable, should we anticipate these problems to be in her future? In other words, is Patty not profoundly sick at this point? Or is it possible that her heart could just basically, for lack of a better term, “wind down?” What we’re going for here, we guess, is a ballpark estimate of how long Patty will likely sustain without major interventions, along with markers we should be looking for along the way to suggest the problems are getting worse.

If there are other factors concerning all of the above that we may not have considered, could you please share them with us, so our understanding of the situation is as complete as possible? Again, thank you so much for all you’ve done, and for all you’ll be called upon to do in the weeks and months ahead.

Regards,
Patty & Brian O’Mara-Croft

Confusion?

Hi everyone:

Just a quick note -- our last entry was date-marked for Tuesday, when in fact it is Wednesday's update. I had drafted the Snakes on a Plane comment last night, so that date stayed with the message. My apologies for any confusion. To clarify-- it's Wednesday, and Patty feels like crap. See?

Love,
Brian

Tuesday, August 22, 2006

Snips, snakes and more

Hi everyone:

By comparison with most other days, yesterday was a very good day for Patty. She felt very few waves of nausea and, other than fatigue, had few of the symptoms that have plagued most of her recent days and evenings. In the afternoon, we stopped briefly into Patty's school and went for a much-needed haircut. In the evening, our neighbor Mike Williams (left, with Patty) dropped in for a visit, and our nephew Scott Shepard arrived; he'll be visiting until Thursday.

In the afternoon, Patty had a conversation with Cathy Murks at UCH, who said that doctors from both UCH and Edward are now putting their heads together to determine the next best course of action for Patty. The feeling is that Patty can only go so long feeling sick almost every day, and a game plan needs to be formalized.

Last night, Patty and I agreed that we want to be active participants in that decision-making process, so we will be spending some time today crafting a letter outlining our concerns and expectations. For example, we are worried about how Patty will respond to post-transplant drugs, given her problems with tolerance of the meds so far. To be honest, we're uneasy with each of the possible courses of action, but want to know what provides the best odds of (a) living, and (b) living well.

Late yesterday afternoon, Patty was feeling a need to relax and I was feeling a need to spend some quality time with the kids -- so what better way to expand the minds behind our future than with...Snakes on a Plane. If you're expecting a good movie, you'll probably be disappointed. If you're okay every once in a while with something a little more campy, you won't feel you've wasted your money. The kids liked the flick, so...mission accomplished.

Let's fast-forward to today. Our beloved patient has returned to status quo -- fairly pronounced nausea, sore stomach and shakiness. I suspect our next entry won't be as full of activity.

Love,
Brian

P.S. Still waiting on the new PRA stats -- we've been told not to read too much into them, as they tend to be less dependable when taken immediately after an IVIG infusion, for some reason. Having said this, we'll share what we find out.

No nausea so far...knock on wood



Hi everyone:

It always seems like I speak too soon about Patty having a good day, and then things deteriorate shortly thereafter. So, with some reservation, I'm announcing that Patty is feeling pretty strong today -- knock on wood. She does not feel nauseous, which is almost unheard of these days, and the mild headache with which she started the day was tackled with painkillers. Patty discussed her nausea and medications with Edward Hospital today, and is hoping they'll give her some new solutions that don't involve hospitalization.

We have placed a call to the University of Chicago Hospital to see if they have the results from Patty's latest panel reactive antibodies (PRA) test. As soon as we know, we'll share the numbers. Please keep your fingers crossed that this number will be greatly reduced. Patty is feeling pretty emotional of late, so I keep hoping that some of these closed doors will start opening for her. Besides, aren't these postings getting a little dull? It's all puke, puke, sleep, go out for two hours, puke, puke, sleep.

More soon...

Love,
Brian

Monday, August 21, 2006

...Or did I speak too soon?

Hi everyone:

Patty and I went for our short walk. It turned out to be even shorter than we had planned -- about 15 minutes in total. Patty's nausea and fatigue came roaring back, so we abbreviated our route. We had to stop mid-route for Patty to catch her breath. We passed a woman who had marveled months ago about our rollerblading excursions...and wondered what might be going through her mind as Patty shuffled along with tubes all around her.

Patty described her current state as "like a baby" -- short periods of wakefulness amid many hours of sleep. Five minutes after our walk, she was fast asleep. I'm really getting worried. More later...

Love,
Brian

Patty now

An unusual sighting -- Patty's smiling!

Hi everyone:

Sorry I've been remiss in posting updates -- nothing since Saturday morning represents a near-drought for me these days. To be honest, this weekend was sufficiently terrible, for the most part, that updates would just seem depressing.

Patty vomited much of the day Saturday, and gagged, coughed and slept most of Sunday. Her attempts to be active for short periods seemed to make matters worse. A 30-minute visit with the neighbors pretty much drained Patty of all her energy...and this after a four-hour nap.

We both worry that we're approaching a crossroads, where Patty may require more constant medical care and perhaps hospitalization -- and yet we're also hopeful that this is just a phase. The prospect of extended hospital stays seems mostly untenable, at least while there's any other options.

Early this morning, I thought we were in for more of the same, but Patty has seemed to make a more-or-less miraculous recovery over the past hour or so. It's funny -- Patty has now adjusted her expectations so that a day of feeling queasy and weak is a good one. I have business calls today, and Patty wants to tackle thank you notes, and we've even entertained the idea of going for a short walk. We don't want to push things too much, but I can understand why Patty wants to take full advantage of the rare times when she escapes the malaise.

If there's more to share later, I'll be sure to write.

Love,
Brian

From Saturday -- feeling terrible



From Sunday -- battling the tubes

Saturday, August 19, 2006

A better night, a not-so-great morning



Hi everyone:

After two days of IVIG infusions that kept Patty pretty much tethered to an IV pole (she did fine), she was up for some activity last night. We had envisioned a more low-key evening, but ended up with one much more exciting.

Mike and Mary Kate invited us to join them at the GooGoo Dolls / Counting Crows concert at Midwest Bank Amphitheatre in Tinley Park. We were in a VIP box, which proved to be a mostly comfortable environment for Patty -- she could sit without being jostled, and had food and drink within reach at most times. She did well, although the heat and humidity ultimately wore her down somewhat. We left the show about 2/3 of the way through the Counting Crows' performance, and unfortunately became snagged in some horrific traffic that made our drive home take two hours (instead of the one it took to get there.) All in all, though, we had a really nice evening -- thanks Mike and Mary Kate. Turns out that even though I prefer the Counting Crows' music over that of the GooGoo Dolls, the latter seem to have a better stage presence.

This morning, Patty is feeling fairly nauseous and has a pretty bad headache, so I suspect we'll be settling in for a low-key day today -- some movies, perhaps, and junk food in bed. If more happens as the day progresses, I'll be back in touch...

Love,
Brian

As you can see, Patty was looking amazing and healthy

Thursday, August 17, 2006

Looking at photos on the site

Hi everyone:

I'm not sure who likes to look at the photos we post on the site -- they're mostly pretty inane stuff -- but I discovered the other day that you can click on the pictures to see an enlarged version. Just FYI...

Love,
Brian

IVIG -- The Sequel

Hi everyone:

Patty has started her third round of IVIG this morning. They start with a shot of Benadryl, which almost immediately knocks her out. Hence...



If one pans back, though, could there be a different story?



Oh, come ON... she would WANT me to do it.

More later...

Love,
Brian

Wednesday, August 16, 2006

A few pics

Hi everyone:

Here are a few random shots from the past few days. I've become an expert, I think, at finding fun things to do with the kids at a time when those activities cost the least and are least disruptive to a work day.







See, it's not ALL about vomit and despair. Sleep well, everyone.

Love,
Brian

A terrible day, all things considered

Hi everyone:

Today was by no means a banner day, healthwise, for the O'Mara-Croft clan. Patty started the day vomiting profusely, and pretty much felt well below the weather for the balance of the day. I didn't want Patty to feel centered out, so I threw up in the O'Hare parking garage when I brought Colin for his flight back to Canada. It made me realize, to some small degree, what a nightmare it must be for Patty to feel this way almost every day.

This afternoon, Patty had her periodic appointment with Dr. Costanzo at Edward Hospital. We were told by the doctor that the nausea is a concern, both from a physical and psychological perspective. She suggested that if the problem persists or gets worse, Patty may need to be hospitalized 24/7 until she can be transplanted. This, of course, was not the kind of message we were hoping to hear. Patty has been prescribed Ativan to supplement her Zofran, based on advice Dr. Costanzo procured from an Edward oncologist. Please keep your fingers crossed that Patty can tame the nausea, because it would really be sad if she ended up imprisoned in a hospital.

Dr. Costanzo also seemed somewhat surprised when we mentioned that the University of Chicago Hospital was suggesting they would transplant Patty with a positive crossmatch if the Cytoxan failed to lower her antibodies. Dr. Costanzo expressed her worry that Patty might develop acute rejection episodes soon after transplant, and cautioned that there would be a greater risk of chronic rejection. She seemed to think that a VAD (ventricular assist device) of some form might be the logical next step. We asked the doctor how long Patty would be able to go without a transplant or other significant intervention, and she answered, "Not long." We'll keep you posted as we sort out what the next steps may be.

Patty will be undergoing her third course of IVIG starting tomorrow morning, so she'll be pretty much tethered for the next two days. On Friday, they will draw her blood again and test both her panel reactive antibodies (the number we really want to drive down) and her white blood cell count, which was still a bit low when it was last measured. We inquired about total body irradiation as an option for reducing antibodies. Dr. Costanzo had mentioned this as a possibility in a previous discussion, but today shared that it was really a last-ditch alternative because it dramatically increases the risk of infection.

We were sad to see Colin leave, after a much shorter summer than usual, and we miss Devin a great deal, because we have not seen him since Spring Break.

We took the three kids who live here to pick up their school supplies at Target this evening. Dennis Sobieski and Angela Zotos gave the kids gift cards to pay for the supplies -- thank you so much.

I'm sure there will be more to share soon, so I'll cut this message off before it reaches epic lengths.

Love,
Brian

P.S. What's the deal with the Sox -- I thought we were over the hump!

Tuesday, August 15, 2006

On the mend?

Hi everyone:

Patty is feeling a little less nauseous today, and is awake and perhaps even a little energetic (at least in relative terms.) She hopes to go to the school for a while this afternoon to help new teachers get ready for the coming academic year. I've pleaded with her to take it easy.

Tomorrow afternoon, Patty has a follow-up appointment with Dr. Costanzo at Edward Hospital; we don't expect any news to come from that visit, but you never know -- we've had surprises before. At a minimum, perhaps we can find a better solution for Patty's nausea.

Sorry for the boring posts...there just hasn't been that much going on these days. If anything new happens, I'll write again.

Love,
Brian

Monday, August 14, 2006

For lack of a better word (or non-word)...a pukey day

Hi everyone:

Patty is still feeling pretty miserable -- the almost ever-present nausea is here in full force, and of course she has a headache. The worry is always that Patty will lose important medication if she's ill at an inopportune time...not that there's usually a "good" time to barf.

It's 1:30 pm and Patty's just getting out of bed; on her last attempt, I thought she was going to throw up on her way back from the bathroom. Other than that, there's very little to report...and, based on her current condition, it seems unlikely there will be much for an update later.

On the positive side of things, Patty does seem to be winning the war against the rash on her face, back and chest. It's a small thing, but it does feel like one for our side, for a change.

Love,
Brian

Sunday, August 13, 2006

Colin's graduation

Hi everyone:

Better late then never -- we are proud of Colin's graduation from grammar school, and today received pictures from the event. Here are a few:





Crappy day, better evening, crappy morning

Hi everyone:

Patty had a pretty rough Saturday in terms of fatigue and nausea. Colin and I ran errands while Patty rested, and then I slaved for hours making a homemade pasta sauce. It always seems that Patty isn't feeling well on the days when it's nice enough outside that you would otherwise want to be out and about.

By the evening, Patty was feeling well enough to go out with me for a couple of hours, and we had a wonderful time together.

This morning, Patty's again feeling nauseous. It's hard to say whether the nausea is just a side effect of the medications, or a symptom of her heart failure. I'm hoping it's the former, although I worry.

Today, I am going to make lasagna with the sauce I made yesterday. I'll post more if and when there's more to report.

Love,
Brian

Patty eats brie and olives



Patty the athlete



A nice conversation



One from Friday

Friday, August 11, 2006

Crimes of the Heart ... yuck!!!

Guys:

Don't ever let any woman convince you that Crimes of the Heart isn't a chick flick. I'm dying here. Please, please, please -- somebody come and get me out of here.

Love,
Brian

Reflections on a fun week

Hi everyone:

I'm not sure if anyone else has kept count but, as of today, Patty has been on the transplant list for 48 days. If you read back to the earliest days of this blog, you'll see hopeful references to the 4-6 week "typical" wait for a heart. We've already exceeded that wait, and anticipate a much longer one. Patty and I both believe she won't get a heart until well after the 90-day Cytoxan treatment period ends. We're not distressed about this -- it's just that if you're waiting, you may as well make some game of things. So, for the record, Patty's guess is that she will get her new heart on Day 129 (Halloween), while I more optimistically forecast that she will be transplanted on Day 105 (October 7). Patty kidded this morning that perhaps we should start a pool.

While we wait, Patty seems to take it all in stride, which I find to be pretty amazing considering she has felt nauseous for at least part of each of those days. Of late, her appetite seems to be better than in the past, and she makes the most of the time when she's able to function. All in all, I find her to be a pretty remarkable person. Of course, I may have a bit of a bias.

With a great deal of help from family and friends, our kids have enjoyed a pretty nice -- and mostly active -- summer. For the most part, they seem very happy and (thankfully) distracted. From time to time, we see chinks in the armor, but they're holding up pretty well, all things considered.

Below are a few more pictures from the last couple of days, including our trip to Mayan Adventure at Holiday Inn Elmhurst. More soon...

Love,
Brian

Mom & Dad at Colin's "graduation" lunch



Patty, the video bowling champ



Mayan Adventure -- the slides are fast and fun (especially at night)


Colin and Kelly on the double tube



PJ's self-portrait


Thursday, August 10, 2006

Fun Wednesday (& Thursday)?

Hi everyone:

I don't want those who visit daily to worry, so I'm dropping this quick note to mention that Patty and the kids are doing fine, all things considered.

We're at the Holiday Inn Elmhurst where we were given complimentary accommodations and waterpark passes (of which we've taken full advantage.) Colin, Kelly and Connor have spent almost every possible moment in the water. PJ has split his time between play and relaxation. And Patty has just been taking it slow and easy -- although I know she wishes she could do the slides with us.

Patty has been tired and has had some of her typical symptoms (shortness of breath, etc.), but she has also been very happy to see the kids having fun. She beat me handily at a game of video bowling last night. As a write, she slumbers.

I'll write later with more details and photographs.

Love,
Brian