Friday, June 30, 2006
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
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
Thursday, June 29, 2006
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
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
Tuesday, June 27, 2006
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.
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.
Monday, June 26, 2006
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
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
Sunday, June 25, 2006
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
Wednesday, June 21, 2006
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
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
Monday, June 19, 2006
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
Saturday, June 17, 2006
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.
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, June 13, 2006
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
$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
Monday, June 12, 2006
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.
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.
Saturday, June 10, 2006
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
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
Thursday, June 08, 2006
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
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
Wednesday, June 07, 2006
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
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:
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
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
Tuesday, June 06, 2006
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
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
Saturday, June 03, 2006
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
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
Thursday, June 01, 2006
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
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