Laine needs new bowels again
Donation protected
We need your help. As you may (or may not) know, Laine had a full bowel transplant a few years ago after years of struggling though thextreme pain, hospital stays, feeding tubes and more doctors visits than you can imagine. It was a drastic measure and a rare procedure- in fact, most doctors and nurses are surprised that she has had it done and didn't know they could do that. The transplant seemed to be a success and her friends and family finally got to see her feel good, travel and enjoy her life. Here and there she started having issues but now those issues have escalated to her getting the worst imaginable news; her body is chronically rejecting the new organ and they have to do a whole new bowel transplant.
Due to the degree of difficulty and specialty Laine must have this done at Georgetown Hospital ( in Washington DC). This is where she’s been for the last 6 months while her team of doctors tried everything they could to figure out what was wrong and ultimately found chronic rejection. 6 days in the hospital is too much, 6 months 600 miles away from loved ones during a pandemic is beyond miserable. The doctors determined the only thing they could do is put her back on the transplant list.
She is currently staying in the hospital until her transplant. She gets officially listed for transplant on Thursday August 19th. After recovery she will be able to leave the hospital but must stay within 15 miles so that she can get back to the hospital quickly for the many checkups she will have as well as in case in case of an emergency. She'll have to live in this radius for 6 months to a year depending on how long term recovery goes, last time was 7 months.
Laine’s husband Dustin is amazingly supportive but doesn’t have the kind of job that allows for much flexibility but unfortunately finding a new job is not an option as they need the health insurance provided by his job. This means, not only must they be apart while she’s in DC, they’ve got to bring in someone to take care of Laine while she recovers. For the next transplant, Laine’s little brother will be stepping up to take care of her. This will obviously be a full time job so he won’t have any income during that time frame.
In 2017 when Laine had her first transplant, it cost about $2400 per month for a short term apartment. They need money to not only pay for a place for Laine and her caretaker to stay while she recovers from the transplant but also for living expenses (food, transportation and utilities), trips by her husband to come visit and take care of her to give her brother a break, help with mortgage and utilities at home from missed work, and whatever else we may need until she can come home.
Dustin and Laine have put every dollar they have into paying for Laine’s medical procedures. They’ve refinanced their house and taken money out to pay for past medical bills and trips to DC. They’ve cashed out all their retirement accounts, sold everything they had of value including project cars, video game collections, and brought in roommates to help pay their mortgage. Before Laine began to reject the first transplant, they had been saving up for much needed repairs to their home but now they will take the $14,000 they saved and allocate that to help with Laine’s upcoming procedures.
Their insurance out of pocket maximum is $7150 but there are so many hidden costs associated with something like this. Beyond living expenses for Laine and her fulltime care taker while she is in DC recovering, there is also vehicle upkeep and repair, travel expenses so that her husband can go visit her, and medical transportation to and from the hospital no to mention standard living expenses to cover like food and gas. They estimate that they will need an extra $35,000 to make this next procedure happen.
Laine is a wonderful person who deserves so much more than what her body has put her through. She the kind of person that has a smile on her face through all of this. She lives for experiences that many of us take for granted- like eating salads (a food item that is banned for her due to some of her digestive issues). She’s witty and kind and has a passion for life like no other person. She’s delt with this constant pain for years and absolutely deserves a shot to be free of it and have the ability to live as normal of a life as she can.
On behalf of Laine and her husband, family and friends, we are immensely grateful for reading and any size donation to this GoFundMe. Please share so that we can take some of the stress off this fabulous person so that not only can she live but live well.
Due to the degree of difficulty and specialty Laine must have this done at Georgetown Hospital ( in Washington DC). This is where she’s been for the last 6 months while her team of doctors tried everything they could to figure out what was wrong and ultimately found chronic rejection. 6 days in the hospital is too much, 6 months 600 miles away from loved ones during a pandemic is beyond miserable. The doctors determined the only thing they could do is put her back on the transplant list.
She is currently staying in the hospital until her transplant. She gets officially listed for transplant on Thursday August 19th. After recovery she will be able to leave the hospital but must stay within 15 miles so that she can get back to the hospital quickly for the many checkups she will have as well as in case in case of an emergency. She'll have to live in this radius for 6 months to a year depending on how long term recovery goes, last time was 7 months.
Laine’s husband Dustin is amazingly supportive but doesn’t have the kind of job that allows for much flexibility but unfortunately finding a new job is not an option as they need the health insurance provided by his job. This means, not only must they be apart while she’s in DC, they’ve got to bring in someone to take care of Laine while she recovers. For the next transplant, Laine’s little brother will be stepping up to take care of her. This will obviously be a full time job so he won’t have any income during that time frame.
In 2017 when Laine had her first transplant, it cost about $2400 per month for a short term apartment. They need money to not only pay for a place for Laine and her caretaker to stay while she recovers from the transplant but also for living expenses (food, transportation and utilities), trips by her husband to come visit and take care of her to give her brother a break, help with mortgage and utilities at home from missed work, and whatever else we may need until she can come home.
Dustin and Laine have put every dollar they have into paying for Laine’s medical procedures. They’ve refinanced their house and taken money out to pay for past medical bills and trips to DC. They’ve cashed out all their retirement accounts, sold everything they had of value including project cars, video game collections, and brought in roommates to help pay their mortgage. Before Laine began to reject the first transplant, they had been saving up for much needed repairs to their home but now they will take the $14,000 they saved and allocate that to help with Laine’s upcoming procedures.
Their insurance out of pocket maximum is $7150 but there are so many hidden costs associated with something like this. Beyond living expenses for Laine and her fulltime care taker while she is in DC recovering, there is also vehicle upkeep and repair, travel expenses so that her husband can go visit her, and medical transportation to and from the hospital no to mention standard living expenses to cover like food and gas. They estimate that they will need an extra $35,000 to make this next procedure happen.
Laine is a wonderful person who deserves so much more than what her body has put her through. She the kind of person that has a smile on her face through all of this. She lives for experiences that many of us take for granted- like eating salads (a food item that is banned for her due to some of her digestive issues). She’s witty and kind and has a passion for life like no other person. She’s delt with this constant pain for years and absolutely deserves a shot to be free of it and have the ability to live as normal of a life as she can.
On behalf of Laine and her husband, family and friends, we are immensely grateful for reading and any size donation to this GoFundMe. Please share so that we can take some of the stress off this fabulous person so that not only can she live but live well.
Laine first started having minor problems while we were dating in 2009. We thought was possibly IBS or a food allergy. 6 months after we got married in October in 2011 she started having issues more often. This prompted us to setup gastro appointments. After 2 years of exhausting every option of gastro doctors in Atlanta she finally got accepted and seen by the Mayo Clinic in Rochester, Mn. They ran a battery of tested and the only thing they could figure out is maybe her bowels were just kinked. So she went into surgery and that's not what they found. What she had was a very rare genetic disorder called Hollow Visceral Myopathy. A degenerative disease of the smooth muscles of the intestes. There's no know cure and all treatments are experimental and therefore not covered by insurance. We sold my car and had two roommates to help afford medical expenses. As the disease progressed she had several peeforations of the bowel that all had to be surgically repaired each time over the next few years with trips up to Mayo Clinic to examine and check how the the treatments were helping (they weren't) and how her disease progressed. By 2017 her doctor at the Mayo Clinic recommended her for a full bowel transplant at one of the only hospitals in the country that did them, Medstar Georgetown. The other was the Cleveland Clinic but they don't do as many as Georgetown and hadn't been doing them as long as either. In September of 2017 we got the call for her transplant. She was in a coma for 3 days and stayed a total of 20 days after the transplant in the hospital. Over the next 7 months shd lived in an apartment we rented in Alexandria, VA and we rotated family members who stayed with her and I was the prodimentant person along with her mother, who is no longer with us, during that time. She had multiple hospital visits every week for the first 5 months and then dropped to bi-weekly until she left to move back home in GA. We've had a lot of hiccups since then resulting in a lot of emergency trips to DC as well as lots of nights in hospitals down here and up there. Unlike a kidney or liver or heart transplant the bowel will always continue to have issues. In Februrary of this year Laine didn't feel well and ended up in the hospital. They found her heart rate abnormally high and her blood pressure abnormally low. They ran a bunch of tests. After a week and a half of NEGA Braselton doing almost nothing besides tests and fluids she was transfered to Medstar Georgetown in very, very bad shape. She was immediately put in the ICU and given fluids and then put on TPN. It took her until the end of May for her to be well enough for them to attempt a release and they still werent entirely sure what was wrong because nothing looked out of place, even during an exploratory surgery in March they found no issues. It lasted 2 days before she was back in. Her Jtube had become misplaced and ended up in her stomach. She was also having much more pain than before. They decided to give exploratory surgery another go and this time they found signs on chronic rejection in her large bowel. She stayed till they got pain down to being managed by oral pills. She came home for two weeks on fluids and TPN and then one afternoon she coughed and she felt something go pop and we went to the hospital and she was transferred to Georgetown the next afternoon. They found nothing wrong im her abdomin but found a blood clot in her lungs and she hss been having a very hard time with pain management. At this point she's spent almost 6 months of this year in the hospital.
We really need your support to get her the help she needs. It’s crushing to feel helpless when someone you love so much is suffering. I work hard and hate asking for help but right now, I’ll do anything to help my wife.
Thank you so much for anything you can give.
We really need your support to get her the help she needs. It’s crushing to feel helpless when someone you love so much is suffering. I work hard and hate asking for help but right now, I’ll do anything to help my wife.
Thank you so much for anything you can give.
Co-organizers (3)
Dustin Collins
Organizer
Flowery Branch, GA
Tracy Wadsworth
Beneficiary
Holly Pezzano
Co-organizer