Madeline’s doctors say that she is showing positive progress. She is still heavily sedated with pain medication, but was awake and responsive a few different times yesterday. Because she’s still intubated, speaking is impossible, but when she’s awake she’s communicating through facial expressions and “lip syncing.” She even gave a thumbs up yesterday morning when she awoke to news from her nurses that the Patriots are going to the Super Bowl.
Jim, Colleen, and Mike sat with her for most of the day and during the few minutes when she was awake, shared with her just a sampling of the thoughts, prayers, and well-wishes that are being sent her way. She was visibly overwhelmed by the amount of support from all of you. Yesterday she was weaned off of some medication that was helping to control her blood pressure. She was seen by her transplant pulmonologist, the transplant surgeon, and a physician's assistant whom she had seen during her appointments last Tuesday. All were very happy with the progress that Madeline has made so far. Right now, she is back in the OR where they are cleaning out her chest cavity and closing up her incisions. Jim, Colleen and Mike are hoping to see her later this afternoon.
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After six months in Pittsburgh, Madeline got the call. The team at UPMC successfully completed her double-lung transplant at 3am this morning! Jim remained at the hospital for most of the night, and Colleen and Mike flew in and arrived at the hospital by 11am. While heavily medicated, Madeline opened her eyes and gave a smile to acknowledge that they were all there. The surgery was long and complicated, but Madeline did well. Because of her scleroderma, Madeline’s “old” lungs had extensive scarring which added some complexity to the procedure. Typically during a double lung transplant, one lung will be removed and replaced while the other provides needed oxygen to the patient. In Madeline’s case, her lungs had deteriorated so badly that a single lung would not be able to sustain her. As a result, she was put on artificial lungs for a portion of the procedure to provide oxygen to her body until the new lungs were in place. And because of the scarring and bleeding, the doctors decided to not fully close the chest incision at the end of the procedure. Madeline will be going back to the OR – probably Tuesday – so they can make sure everything looks OK before fully closing her chest. Despite these issues, Madeline’s new lungs are functioning well. She is still breathing with the assistance of machines for the time being and will remain in the Cardio Thoracic Intensive Care Unit (CTICU) for the next two weeks. In total, she will be in the hospital for another three to four weeks before being discharged. But hopefully, she’ll be back in Rhode Island by April or May and is looking forward to seeing her wonderful friends and family that have been such a tremendous support though this challenging time. Madeline still has a long recovery period ahead of her, but she’s looking forward to getting home! And for the record…spending six months in Pittsburgh hasn’t turned her into a Steelers fan. GO Pats! After a bit of a holiday hiatus, it’s time for one last blog post to close out 2016. For better or worse, everything remained status quo in Pittsburgh throughout the holiday season. Madeline is still waiting patiently to get the call that new lungs are available.
While there’s little to report in terms of Madeline’s wait for new lungs, the holiday season brought a much-needed break from the regular routine that she and Jim settled into after their move in July. Thanksgiving was a great start to the holiday season thanks to a fun-filled visit from their grandchildren (oh, and Mike, Megan and Colleen were there too!). Since then, they’ve enjoyed driving around their adopted city to see all that Pittsburgh has to offer during the Christmas season -- from Light Up Night, to the Gingerbread House Display at PPG Place, to the Winter Flower Show and Light Garden at Phipps Conservatory. Getting around to see these things isn’t the easiest with a wheelchair and oxygen tanks, but that hasn’t stopped Madeline. She loves life, people and new experiences -- these are the things the keep her going and will be even sweeter in 2017 with new lungs! While 2016 has had its challenges, the outpouring of support, well-wishes and prayers from so many of Madeline and Jim’s friends and family -- and in many cases, even strangers -- has been a tremendous help. Thanks to everyone who helped Mad For Life in any way during the past few months. See you in 2017 -- it’s going to be a great year! If you weren't able to attend the Mad For Life Kickoff in October, here's the slideshow that was playing in the background during the event. Last weekend Madeline's friends and family came together to show their support and raise funds to help pay for her double lung transplant. With more than 250 people packing into the Canonchet Clubhouse in Narragansett, the event was a great success and a testament to all the wonderful people pulling for Madeline. Thank you to everyone who donated auction items, raffle items, food, drink and the time and energy it took to make it such a great afternoon!
Last week was a big week for Mad For Life. Following Sunday's kickoff event, Madeline's son Mike was on the Rhode Show on WPRI TV (channel 12) Monday morning to help raise awareness for Scleroderma, organ donation and Madeline's fight for new lungs. Thanks to all the great people at WPRI for having us on the show!
Thursday, September 29th marked 75 days since Madeline was first activated on the lung transplant list. She and Jim have now been in Pittsburgh for 11 weeks, and other than Madeline’s twice-weekly pulmonary therapy sessions and occasional meals out, life in Pittsburgh is has been pretty routine. Just a lot of waiting. However, day 75 on the transplant list marked another important day on the calendar - Madeline’s birthday. Madeline’s “brother like no other”, Walter, and her “SIL” Janet flew out to Pittsburgh to celebrate. The day started with pulmonary therapy at UPMC, just like the previous 11 Thursdays. But this time Jim and Mad were accompanied by Walter and Janet. (Click on the pictures to see them in more detail.) Much of the rest of the day was spent showing the Boyles around Pittsburgh. Later that night Jim and Mad celebrated her birthday along with their extended Pittsburgh family. Together, Madeline and Jim “blew out” the unlit birthday candles (oxygen & flames don’t mix!). Madeline also received a Terrible Towel in homage to her new temporary home. But don’t worry! Although she may have a newfound appreciation for Pittsburgh and the Steelers, she’s still a New Englander and a Patriots fan through and through! “For better, for worse, for richer, for poorer, in sickness and in health.”
As someone who has gotten to know Mad and Jim well over the past few weeks shared with Colleen on her visit to Pittsburgh, you really have no idea what those words mean when you say them, or what the future holds. But Jim and Madeline live those words every day. “They really are the epitome of marriage,” he said. Forty-four years ago today, they said, “I do,” but their story begins long before that. First as neighborhood playmates at ages 5 and 6, then as high school sweethearts. After Jim graduated from college and Mad was still in school, he was stationed first in Germany and then Vietnam. When he finally returned they were married in their childhood parish, St. Augustine’s in Providence, RI. They both worked hard - for the community and for their families. For the most part, Madeline took care of things at home while Jim built his law practice. Until recently, she used to joke, “Jim, do you even know where the kitchen is?” That has all changed. He now makes her coffee and her sandwiches exactly the way she likes them. He even bought himself a cookbook! (So far, he’s attempted the recipe for scrambled eggs. Stay tuned for further developments.) They’ve been the perfect team -- officially now for 44 years. Colleen and Mike have always known that their parents were extraordinary role models. And to reinforce what they already knew, others frequently remarked to them about the amazing strength and love behind Madeline and Jim’s relationship -- comments that have been made much more frequently over the past few years. Jim & Mad, you inspire us all. Happy 44th anniversary to an absolutely amazing couple! Madeline and Jim welcomed the first visitor to their temporary home in Pittsburgh this week when their daughter, Colleen, flew out from Rhode Island. Here are a few quick highlights and observations from her trip:
Madeline and Jim have been in Pittsburgh now for just over three weeks, and they’re doing a whole lot of… waiting. Now that they’re situated near UPMC and are officially “active” on the lung transplant list, their biggest and most important job is to wait for the call that a pair of lungs is available.
In the meantime, Madeline’s doctors have her on a twice-a-week regime of pulmonary rehab. It’s a good distraction that gets Mad and Jim out of the house every Tuesday and Thursday morning and keeps Jim busy in "retirement." (Well, it gets him away from his new work life as a telecommuter, anyway) But it’s also much more than that. Increased physical activity now, before the transplant, will help Madeline gain strength that will be much needed to help in her recovery. Over the last couple years, Madeline’s physical activity has been severely restricted by her lack of oxygen intake, causing her to lose some of her strength. To compensate for her lack of oxygen and help her gain that strength back, she wears an oxygen mask during her rehab sessions. A heavy flow of oxygen through a mask – which ensures that more of the air makes it to Madeline’s lungs – enables her to do more physical activity than she’d be able to do otherwise. The 90 minute rehab sessions consist of a number of exercises, such as riding a stationary bike and taking walks through the halls of the hospital. In just a couple weeks, Madeline’s been able to increase her physical activity slightly – like walking 30 feet before resting instead of 10 – but every little bit helps! And as always, Madeline is doing all this with a smile on her face! Here she is on one of her “journeys” down the hall. |
Keeping CurrentAs often as possible, we'll try to update this page to let you know how Madeline is doing and where she is in her fight for new lungs. Visit often! Archives
August 2018
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