Critical lung surgery - Dempster
Donation protected
Angela has been diagnosed with an extremely rare disease called Diaphragmatic Endometriosis. It results in a high potential for Catamenial Pneumothoraxes – which is when air leaks into the tissue around the lung leading to painful lung collapse. Endometrial-like tissue has eaten through her diaphragm and into her lung cavity, where it responds to monthly hormones, expands, and then bleeds into her lung cavity. It is so rare, that only 1 of the 30 or so doctors Angela has seen in the last 2 years has heard of it, let alone treated it. One ER doctor this past October, joked that attending physicians should have Angela sign autographs for giving them the opportunity to see something so rare. ;)
For Details on Diaphragmatic Endometriosis
Five times now, Angela has left home to get an x-ray, and not come home for over a week because she is taken straight to Calgary's thoracic unit. The next time she sees her kids is with tubes sticking out of her side and a suction machine following her around. Dozens of other times she has sat in ER or been taken by ambulance to ER with her kids along, wondering if she will get to go home that time or not. She has had 3 CT scans and over 80 chest x-rays in 2 years. She had thoracic surgery (VATS) in Calgary 2 years ago, and has been on strong hormones ever since, but it has not prevented the collapses and she continues to have them. The anxiety of what is next, and physical pain from the collapses and tubes and surgery have been severe, but it is the impact on her family, and her quality of life that have been the hardest. Matt and Angela have three children - ages 9, 7, and 5, and being in the ER, visiting the thoracic unit, hearing their mom gasp for air, or try to talk to them only to end up in a huge coughing fit - is such a frequent occurrence in their life, that the kids often blow bubbles with their gum, and then pop it and say "Mommy's lung has collapsed again". After her 2nd last collapse this summer, she had to drive her children 8 hours home from the US to get to ER in Canada, with a full 10cm right sided lung collapse. Her 7 year old daughter did not eat for 3 days, and became extremely anxious about everything.
Surgery is the gold standard for the treatment of endometriosis worldwide, but in Canada there is only 1 endometriosis specialist who with thoracic surgeons treat this rare form of the disease. Angela had great hope of being able to see him, but her referral was recently rejected - he is not taking new patients, he is booked until 2020. In the meantime, her lung has now collapsed five times. Her last collapse was 10cm - only a tiny fragment of her lung remained inflated. There is danger of it spreading and causing lung collapses on the left side, or growing onto her pericardium (the lining of her heart). In the past 8 months she has begun to experience similar pain and air bubbles around her left lung, and for 2 weeks out of each month she feels extreme pressure around her heart from the fluid build up caused by the leaking endometrial tissue.
In order to stop her lung from continuing to collapse, Angela needs specialized thoracic and pelvic excision of endometriosis.
She is scheduled to have surgery at The Centre For Endometriosis (CEC) in Atlanta, Georgia at the beginning of November. Women travel from all over the world to receive the specialized treatment CEC can offer. So far AB Health has not approved Angela's application to receive treatment, though it is not available in Canada. She can't continue to wait until 2020 in the hopes of maybe being seen by the only Canadian surgeon that treats this, and in the meantime have several more lung collapses.
Surgery is not cheap, as it will encompass excision (scraping off) of endometriosis from the thoracic cavity, pelvic and thoracic side of diaphragm, plus any other pelvic organs commonly found to be involved - often bowel resection, hysterectomy, liver adhesions, etc.
If you are able, please consider helping Angela have this much needed surgery. Due to contractual requirements, the cost for pelvic surgery, thoracic surgery, hospital stay, anesthesia, lab tests for tissue samples during surgery (depending on what and how much they find), and unknown complication costs can not be published on GFM, but the family is looking at a bill with a total of over $34,500 USD after travel is factored in. Any support you can provide would be greatly appreciated by the family.
For Details on Diaphragmatic Endometriosis
Five times now, Angela has left home to get an x-ray, and not come home for over a week because she is taken straight to Calgary's thoracic unit. The next time she sees her kids is with tubes sticking out of her side and a suction machine following her around. Dozens of other times she has sat in ER or been taken by ambulance to ER with her kids along, wondering if she will get to go home that time or not. She has had 3 CT scans and over 80 chest x-rays in 2 years. She had thoracic surgery (VATS) in Calgary 2 years ago, and has been on strong hormones ever since, but it has not prevented the collapses and she continues to have them. The anxiety of what is next, and physical pain from the collapses and tubes and surgery have been severe, but it is the impact on her family, and her quality of life that have been the hardest. Matt and Angela have three children - ages 9, 7, and 5, and being in the ER, visiting the thoracic unit, hearing their mom gasp for air, or try to talk to them only to end up in a huge coughing fit - is such a frequent occurrence in their life, that the kids often blow bubbles with their gum, and then pop it and say "Mommy's lung has collapsed again". After her 2nd last collapse this summer, she had to drive her children 8 hours home from the US to get to ER in Canada, with a full 10cm right sided lung collapse. Her 7 year old daughter did not eat for 3 days, and became extremely anxious about everything.
Surgery is the gold standard for the treatment of endometriosis worldwide, but in Canada there is only 1 endometriosis specialist who with thoracic surgeons treat this rare form of the disease. Angela had great hope of being able to see him, but her referral was recently rejected - he is not taking new patients, he is booked until 2020. In the meantime, her lung has now collapsed five times. Her last collapse was 10cm - only a tiny fragment of her lung remained inflated. There is danger of it spreading and causing lung collapses on the left side, or growing onto her pericardium (the lining of her heart). In the past 8 months she has begun to experience similar pain and air bubbles around her left lung, and for 2 weeks out of each month she feels extreme pressure around her heart from the fluid build up caused by the leaking endometrial tissue.
In order to stop her lung from continuing to collapse, Angela needs specialized thoracic and pelvic excision of endometriosis.
She is scheduled to have surgery at The Centre For Endometriosis (CEC) in Atlanta, Georgia at the beginning of November. Women travel from all over the world to receive the specialized treatment CEC can offer. So far AB Health has not approved Angela's application to receive treatment, though it is not available in Canada. She can't continue to wait until 2020 in the hopes of maybe being seen by the only Canadian surgeon that treats this, and in the meantime have several more lung collapses.
Surgery is not cheap, as it will encompass excision (scraping off) of endometriosis from the thoracic cavity, pelvic and thoracic side of diaphragm, plus any other pelvic organs commonly found to be involved - often bowel resection, hysterectomy, liver adhesions, etc.
If you are able, please consider helping Angela have this much needed surgery. Due to contractual requirements, the cost for pelvic surgery, thoracic surgery, hospital stay, anesthesia, lab tests for tissue samples during surgery (depending on what and how much they find), and unknown complication costs can not be published on GFM, but the family is looking at a bill with a total of over $34,500 USD after travel is factored in. Any support you can provide would be greatly appreciated by the family.
Organizer and beneficiary
Jon Dempster
Organizer
Cochrane, AB
Matt Dempster
Beneficiary
