Questions about Madeline's disease, transplant procedure or fundraising efforts? Here are some answers.
Q: What's Scleroderma?
Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease.
There are two types of scleroderma – localized and systemic. Madeline has systemic scleroderma which can involve the skin, esophagus, gastrointestinal tract, lungs, kidneys, heart and other internal organs. It can also affect blood vessels, muscles and joints. The tissues of involved organs become hard and fibrous, causing them to function less efficiently.
Pulmonary fibrosis, as a result of Madeline’s scleroderma, is what has made it very difficult for her to breathe and get the oxygen she needs.
For more detailed information, visit the Scleroderma Foundation.
Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease.
There are two types of scleroderma – localized and systemic. Madeline has systemic scleroderma which can involve the skin, esophagus, gastrointestinal tract, lungs, kidneys, heart and other internal organs. It can also affect blood vessels, muscles and joints. The tissues of involved organs become hard and fibrous, causing them to function less efficiently.
Pulmonary fibrosis, as a result of Madeline’s scleroderma, is what has made it very difficult for her to breathe and get the oxygen she needs.
For more detailed information, visit the Scleroderma Foundation.
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Q: How long has Madeline had Scleroderma?
About 12 years ago, Madeline started to feel pain throughout her joints and body so she started to see a local rheumatologist in Rhode Island. After a few blood tests, Dr. Virginia Parker diagnosed her fairly quickly with scleroderma. This was happening in the spring of 2004, just before Colleen (her daughter) and Gerard got married. After a couple years, Madeline’s condition continued to worsen so Dr. Parker referred her to a rheumatologist in Boston who specializes in scleroderma. Since that time, Madeline has been seeing Dr. Robert Simms, Rheumatology Section Chief at Boston University School of Medicine. Once it became clear that Madeline’s lungs were getting worse, she started to also see a pulmonologist – Dr. Harrison Farber, better known to patients and colleagues as “Hap.” Trips to Boston to meet with Hap and Dr. Simms increased in frequency over the years, involving multiple day trips per month and in some cases, even overnight hospital stays. In June 2016, when Madeline’s breathing was clearly continuing to deteriorate and her oxygen intake reached critically low levels, Hap finally made the recommendation in his patently casual style: “You need a transplant. I’ll call Pittsburgh.” |
Madeline and Jim at Colleen's wedding in 2004.
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Q: Why do Madeline and Jim have to go to Pittsburgh? Aren’t there hospitals closer to home that can perform lung transplants?
The short answer is that Madeline is going to UPMC because Hap recommended it. There are certainly hospitals closer to home that do lung transplants, and Madeline could have applied for their transplant programs. But because of Madeline’s scleroderma and the complexities surrounding her underlying condition, Hap’s advice was to not waste precious time running through tests and screenings with other hospitals.
Hospitals are selective in who they admit into transplant programs because they want to ensure that they maintain a high rate of success with their patients. As a leading physician and researcher in his field – who has numerous patients awaiting lung transplants at any given time – Hap recommended UPMC as the best option. It has one of the largest populations of patients with scleroderma who have received lung transplants.
Q: How long will Madeline and Jim be in Pittsburgh?
It’s hard to say. At a minimum, it would probably be about six months, and on the longer end it could be a year or more. It all depends on how long Madeline waits for a pair of lungs to become available and where she is on the transplant list.
There’s a lot that goes into where someone is placed on the transplant list based on a person’s need. In other words, it’s not “first on, first off.” In addition to placement on the list, the “right” lungs have to become available in terms of things like blood type and chest cavity size. For these reasons, there’s really no way to know how long the wait will be.
Once the transplant does take place, Madeline and Jim will have to stay in Pittsburgh for at least three months for frequent checkups and observations post-surgery. When the transplant team is confident that Madeline’s body has accepted the new lungs and that she’s well on her way to recovery, they’ll be headed back to Narragansett. But she will have to make trips back to Pittsburgh regularly – every two months to start – to be seen by her lung transplant doctor.
Q: How much does a lung transplant cost?
Putting an exact dollar amount on the procedure is difficult, but based on research and estimates it will probably be somewhere in the million dollar range. The actuarial and consulting firm, Milliman, published a very comprehensive report in 2014 about the costs of various tissue and organ transplants in the U.S. It estimated the cost of a double lung transplant to be $1,037,700 (page 3).
The report also has some other very interesting statistics, such as the average length of a hospital stay for double lung transplants (29.5 days in 2014) and the number of double lung transplants performed in the U.S. (1,229 in 2014).
Click through if you’d like to see the report.
Q: How can I donate to help Madeline?
There are two ways you can donate. The easiest way is to click over to the donate page right now, where you can donate via credit card. The other option is to write a check and mail it to us. Credit cards are definitely easier for everyone, but we welcome checks too because they do not incur any processing fees. If you want to send a check, you can mail it to:
Mad For Life
P.O. Box 2113
East Greenwich, RI 02818
Please make checks payable to the Mad For Life Fund.
Q: Are my donations tax deductible?
Unfortunately, they’re not. We looked into seeking non-profit, 501(c)(3) status with the IRS, but found out that could take six months or more. We don’t have that time.
We could have also worked with non-profit organizations that accept donations on behalf of a patient, and then promise to basically earmark any funds raised to pay for that patient’s expenses. But those organizations take an administration fee on top of the credit card processing fee which, altogether, adds up to about 7-8% of each donation. Plus, we didn’t want to ask friends and family to donate and give their personal information to a charity which could use that information to continuously solicit donations for other campaigns.
By forming our own organization, we keep more of the donations for Madeline and control any personal information (such as the names, addresses and phone numbers of our friends and family who are generous enough to donate).
Q: Is there anything else that I can do?
Yes! A wonderful way to honor Madeline and help others like her is to register to be an organ donor. According to both the
U.S. Department of Health & Human Services and Donate Life America, every 10 minutes someone is added to the organ transplant waiting list which currently includes approximately 120,000 people. An average of 79 people receive new organs on any given day, but sadly 22 people per day die while awaiting transplants. However, just one donor can impact 50 different lives. The United Network for Organ Sharing, which oversees transplants in the US, also provides information on organ donation.
We will be forever grateful for Madeline’s donor. Please keep that person and his or her family in your thoughts and prayers as well.
The short answer is that Madeline is going to UPMC because Hap recommended it. There are certainly hospitals closer to home that do lung transplants, and Madeline could have applied for their transplant programs. But because of Madeline’s scleroderma and the complexities surrounding her underlying condition, Hap’s advice was to not waste precious time running through tests and screenings with other hospitals.
Hospitals are selective in who they admit into transplant programs because they want to ensure that they maintain a high rate of success with their patients. As a leading physician and researcher in his field – who has numerous patients awaiting lung transplants at any given time – Hap recommended UPMC as the best option. It has one of the largest populations of patients with scleroderma who have received lung transplants.
Q: How long will Madeline and Jim be in Pittsburgh?
It’s hard to say. At a minimum, it would probably be about six months, and on the longer end it could be a year or more. It all depends on how long Madeline waits for a pair of lungs to become available and where she is on the transplant list.
There’s a lot that goes into where someone is placed on the transplant list based on a person’s need. In other words, it’s not “first on, first off.” In addition to placement on the list, the “right” lungs have to become available in terms of things like blood type and chest cavity size. For these reasons, there’s really no way to know how long the wait will be.
Once the transplant does take place, Madeline and Jim will have to stay in Pittsburgh for at least three months for frequent checkups and observations post-surgery. When the transplant team is confident that Madeline’s body has accepted the new lungs and that she’s well on her way to recovery, they’ll be headed back to Narragansett. But she will have to make trips back to Pittsburgh regularly – every two months to start – to be seen by her lung transplant doctor.
Q: How much does a lung transplant cost?
Putting an exact dollar amount on the procedure is difficult, but based on research and estimates it will probably be somewhere in the million dollar range. The actuarial and consulting firm, Milliman, published a very comprehensive report in 2014 about the costs of various tissue and organ transplants in the U.S. It estimated the cost of a double lung transplant to be $1,037,700 (page 3).
The report also has some other very interesting statistics, such as the average length of a hospital stay for double lung transplants (29.5 days in 2014) and the number of double lung transplants performed in the U.S. (1,229 in 2014).
Click through if you’d like to see the report.
Q: How can I donate to help Madeline?
There are two ways you can donate. The easiest way is to click over to the donate page right now, where you can donate via credit card. The other option is to write a check and mail it to us. Credit cards are definitely easier for everyone, but we welcome checks too because they do not incur any processing fees. If you want to send a check, you can mail it to:
Mad For Life
P.O. Box 2113
East Greenwich, RI 02818
Please make checks payable to the Mad For Life Fund.
Q: Are my donations tax deductible?
Unfortunately, they’re not. We looked into seeking non-profit, 501(c)(3) status with the IRS, but found out that could take six months or more. We don’t have that time.
We could have also worked with non-profit organizations that accept donations on behalf of a patient, and then promise to basically earmark any funds raised to pay for that patient’s expenses. But those organizations take an administration fee on top of the credit card processing fee which, altogether, adds up to about 7-8% of each donation. Plus, we didn’t want to ask friends and family to donate and give their personal information to a charity which could use that information to continuously solicit donations for other campaigns.
By forming our own organization, we keep more of the donations for Madeline and control any personal information (such as the names, addresses and phone numbers of our friends and family who are generous enough to donate).
Q: Is there anything else that I can do?
Yes! A wonderful way to honor Madeline and help others like her is to register to be an organ donor. According to both the
U.S. Department of Health & Human Services and Donate Life America, every 10 minutes someone is added to the organ transplant waiting list which currently includes approximately 120,000 people. An average of 79 people receive new organs on any given day, but sadly 22 people per day die while awaiting transplants. However, just one donor can impact 50 different lives. The United Network for Organ Sharing, which oversees transplants in the US, also provides information on organ donation.
We will be forever grateful for Madeline’s donor. Please keep that person and his or her family in your thoughts and prayers as well.
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Q: Who created the Mad For Life logo?
The artwork is courtesy of Madeline’s grandson, Jack. He just turned eight on July 20 and he’s always had a passion for drawing and art. When we asked if he wanted to create a logo for Mad For Life, he sat down immediately and five minutes later, came back with the logo. First try! Q: What’s the address of this site? Since you’re here already you probably already know, but it’s worth the reminder so there’s no confusion. We’re at www.MadForLife.org. Remember – dot ORG. Spread the word! |
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