Handicap home modifications
Donation protected
If losing a limb was all that happened, it really wouldn't be that bad. I used to take my health for granted, until I watched my big brother and my sister-in-law navigate more medical issues in 2 years than most people experience in a lifetime. Their reality is so over-the-top, sad, unfair, and heart-wrenching that it should be a movie, but if they tried to make a movie out of it, it would be scrapped for being too far-fetched to be believable.
Mike Chiarilli, and his wife, Lindsay, have been very private about Lindsay's medical affairs. Most people have no idea what she has been through, and what they have been through together. They are finally sharing their story because they need help. They are in need of a run of good luck, but since no one can help with that, they are looking for support. Specifically, they need help converting their home into a handicap-friendly environment as Lindsay has recently lost a leg. That alone is something that if it happened to most people would be the worst thing that ever happened to them; but not Lindsay.
Lindsay was diagnosed with type 1 diabetes when she was 8. Those familiar with type 1 diabetes understand that her life has had challenges that most people never have to think about. But she has done well at staying healthy for most of it. She and Mike married in 2007, and within a couple years like most couples began trying to start a family. The result was 3 heartbreaking miscarriages.
During that time, Mike was traveling for work often, and his schedule was irregular, so when he was able to land a position in his company that would afford him regular hours, they were both excited for him to be around more. Sadly this position moved them from the close proximity of Lindsay's family in Leominster Massachusetts, to Ohio where they didn't know anyone. But once they were settled, they were excited to find out Lindsay was pregnant again.
What was a very exciting time quickly turned into one tragedy after another. About 6 months into her pregnancy, Lindsay was hospitalized with severe blood pressure issues, and Dominic Michael Chiarilli was born via c-section at about 25 weeks old. He lived for only 5 days.
What should've been a grieving period for them was marred by Lindsay's medical complications, which did not pass and only compounded. She continued to battle blood pressure issues and was then diagnosed with heart failure. If that wasn't scary enough, she was beginning to suffer the symptoms of diabetic retinopathy in her left eye. She had already lost the vision in her right eye from the same issue a year or so prior, so her immediate fear became she would be blind. She underwent surgery on her left eye, and briefly it looked as though her worst fears had come true. But fortunately with her left eye now gone, her right eye regained a substantial amount of sight, and she was left with a reasonable amount of vision in one eye. The left eye operation was repeated several times before doctors gave up and this was understood to be her new permanent state.
If the loss of a child, heart failure, and partial blindness over the course of several months seems like a lot, it would only get worse as Lindsay continued to deal with unexplained symptoms and Mike worked 65-80 hours per week in a position they had initially hoped would make him more available to Lindsay. At about the same time that 37-year-old Lindsay was diagnosed with kidney failure, Mike's company was sold to another company and the future of his job became uncertain. As they questioned if the new company would close his facility, they began the process of trying to get Lindsay on the kidney transplant list while planning the procedures necessary to get her fitted with dialysis equipment. Then fate finally delivered the most fortunate bad news they had gotten in the last 14 months- Mike's company was closing and he was about to be laid off.
I say this was fortunate as his job search led him to a great company in Syracuse NY, which brought them back into proximity to family- our family this time, and some much needed support. He also has a regular schedule now and works reasonable hours. As Lindsay continued to do at-home dialysis every night, she battled the various effects of that, heart failure, and diabetes. Then one day as she was shopping in Target last summer, she fell. Her legs just gave out in a moment of weakness. And that began the saga that has brought us here. If you or I fell, we would look around embarrassed, wondering how many people saw it. Then we would forget about it, maybe tell the story later, and move on with life.
For Lindsay, it started as a little cut on her toe from the fall. From there it agonizingly spiraled into something else entirely. She began experiencing intense pain in her foot, and as the affected area spread, she eventually underwent an angioplasty to clear up some blocked vessels in her leg. She was prescribed a few hours a day in a hyperbaric chamber in an effort to infuse some oxygen into her foot to save her foot and possibly her toes. At this point it became clear she would be losing at least 2 toes. After enduring several months of varying degrees of pain emanating from her foot, Lindsay consulted a surgeon about having the toes removed. That was just a few weeks ago. The surgeon let her know that they would have to take most of her foot. She looked for a second opinion and underwent another angioplasty to push out more blockages that had set up shop in her leg and were causing excruciating pain. The result was whatever clotting issue was happening in her leg was only exacerbated and it became immediately evident that Lindsay would be losing more than just some toes or a foot. After a couple days of monitoring and debating what could be saved, Lindsay underwent a left leg amputation above her knee.
For anyone keeping score, that puts the 2 year deficit at one baby, 2 kidneys, one eye, and one leg amongst the other inconsequential complications that have sent her to the doctors and hospital frequently. She is still trying to get approved for the transplant list and while a new kidney is a necessity, she is also going to be looking for a pancreas. As Lindsay has spent the last 7 months dealing with the foot issue, she has been unable to concentrate on getting the tests done to get approved for transplant, and now she will be focusing on learning how to live with one leg. The goal is to get her walking with a prosthetic. Seems straight-forward enough until you hear medical professionals debating where and how to do the rehab, as most in-patient rehab facilities that can do dialysis don't do her type of dialysis, and the ones that do think she is too complex of a case to admit her. Perhaps rehab will start in the home? The home will need to be outfitted with some equipment ASAP. As if she hasn't been through enough, and Mike along with her, then comes the stuff they shouldn't have to worry about since Mike has good insurance; how much is all this going to cost?
When they moved to Syracuse last spring, after extensive searching, they purchased a lovely split-level home. The two short stair cases that seemed great at the time (less stairs for her to have to traverse at once... heart failure makes you get winded easier), have now presented a new challenge. It will be a long time before Lindsay can walk with a prosthetic, let alone navigate stairs. They need to have 2 stair lifts installed, which will cost about $4000. Doctors agree with Mike and Lindsay that this is necessary. Another fall could be another limb. Insurance deems these a "convenience item" and will not cover any associated costs. They also have lots of other finicky clauses like "wheelchair OR walker." You can't hate the insurance company- they have paid an astronomical amount to cover Lindsay's medical expenses in the last couple years. But listening to what they won't cover and why they won't cover it is pretty frustrating.
In Mike's words- "But what about everything else that we are going to need? Wheel chair, walker, ramps, railings, transports, nurses, physical therapists, etc., etc.? What about the health insurance and our health care system? It covers some of those things but covers nothing related to modifications that need to be made to the home. So how much is all of this going to cost? It seems we are not all working towards the same common goal anymore. That goal should be to simply get my wife rehabilitated and eventually into a prosthetic so that she can function the way that the majority of the rest of us do. This needs to be done so that we can complete the series of tests that need to be done in order to get her onto the waiting list for a kidney and a pancreas. These organs are the only chance that she has to get off of dialysis and be diabetes free and be able to finally lead a 'normal life.' My wife is 38 years old. She has a lot of good years ahead and we have already lived through enough suffering for 10 peoples’ life times. We still want to be parents and we know to do so we need her to be healthy and we need to adopt a child who needs a good home to be raised in. We want to offer this home to a child. To do so we need help.
"We are not just looking for charity handouts and money. We are hopeful that our story can raise the awareness of the horror that the disease known as Diabetes can cause and why we need a cure as soon as possible. We are hopeful that we can help show that the healthcare system that we are provided needs severe improvements. We are hopeful that my wife can receive a good donor kidney and then a pancreas when the time is right. We are hopeful that someday we can raise a child and be parents. We are hopeful that somebody out there will take the time to hear our story and want to help. Maybe a contractor who can at least help provide some of the services that we need to make our home safe and accessible for my wife to live as she moves forward without 2/3 of her left leg. We are hopeful that we can provide a story to others who have or who are struggling, and that story or message should be that we are still positive. We are positive that we will overcome all of the challenges that we have been dealt. One way or another. Together, my wife and I along with our friends, our family and anybody else who has supported us are hopeful that we can turn all of these negatives into positives. We are simply trying to reach out to make it easier for a change. To make it easier by getting help. Help comes in many forms and fashions. Not just money but as we are finding out, the things we need are likely going to require a lot more money and resources than we currently have."
Thank you for taking the time to read to this point. If you can donate any amount, all donations are appreciated. If you can donate services, please reach out to Mike at [email redacted]. If you can't donate, please share their story so it might make it to someone who can, or that it might make it to someone who can benefit from hearing it.
Mike Chiarilli, and his wife, Lindsay, have been very private about Lindsay's medical affairs. Most people have no idea what she has been through, and what they have been through together. They are finally sharing their story because they need help. They are in need of a run of good luck, but since no one can help with that, they are looking for support. Specifically, they need help converting their home into a handicap-friendly environment as Lindsay has recently lost a leg. That alone is something that if it happened to most people would be the worst thing that ever happened to them; but not Lindsay.
Lindsay was diagnosed with type 1 diabetes when she was 8. Those familiar with type 1 diabetes understand that her life has had challenges that most people never have to think about. But she has done well at staying healthy for most of it. She and Mike married in 2007, and within a couple years like most couples began trying to start a family. The result was 3 heartbreaking miscarriages.
During that time, Mike was traveling for work often, and his schedule was irregular, so when he was able to land a position in his company that would afford him regular hours, they were both excited for him to be around more. Sadly this position moved them from the close proximity of Lindsay's family in Leominster Massachusetts, to Ohio where they didn't know anyone. But once they were settled, they were excited to find out Lindsay was pregnant again.
What was a very exciting time quickly turned into one tragedy after another. About 6 months into her pregnancy, Lindsay was hospitalized with severe blood pressure issues, and Dominic Michael Chiarilli was born via c-section at about 25 weeks old. He lived for only 5 days.
What should've been a grieving period for them was marred by Lindsay's medical complications, which did not pass and only compounded. She continued to battle blood pressure issues and was then diagnosed with heart failure. If that wasn't scary enough, she was beginning to suffer the symptoms of diabetic retinopathy in her left eye. She had already lost the vision in her right eye from the same issue a year or so prior, so her immediate fear became she would be blind. She underwent surgery on her left eye, and briefly it looked as though her worst fears had come true. But fortunately with her left eye now gone, her right eye regained a substantial amount of sight, and she was left with a reasonable amount of vision in one eye. The left eye operation was repeated several times before doctors gave up and this was understood to be her new permanent state.
If the loss of a child, heart failure, and partial blindness over the course of several months seems like a lot, it would only get worse as Lindsay continued to deal with unexplained symptoms and Mike worked 65-80 hours per week in a position they had initially hoped would make him more available to Lindsay. At about the same time that 37-year-old Lindsay was diagnosed with kidney failure, Mike's company was sold to another company and the future of his job became uncertain. As they questioned if the new company would close his facility, they began the process of trying to get Lindsay on the kidney transplant list while planning the procedures necessary to get her fitted with dialysis equipment. Then fate finally delivered the most fortunate bad news they had gotten in the last 14 months- Mike's company was closing and he was about to be laid off.
I say this was fortunate as his job search led him to a great company in Syracuse NY, which brought them back into proximity to family- our family this time, and some much needed support. He also has a regular schedule now and works reasonable hours. As Lindsay continued to do at-home dialysis every night, she battled the various effects of that, heart failure, and diabetes. Then one day as she was shopping in Target last summer, she fell. Her legs just gave out in a moment of weakness. And that began the saga that has brought us here. If you or I fell, we would look around embarrassed, wondering how many people saw it. Then we would forget about it, maybe tell the story later, and move on with life.
For Lindsay, it started as a little cut on her toe from the fall. From there it agonizingly spiraled into something else entirely. She began experiencing intense pain in her foot, and as the affected area spread, she eventually underwent an angioplasty to clear up some blocked vessels in her leg. She was prescribed a few hours a day in a hyperbaric chamber in an effort to infuse some oxygen into her foot to save her foot and possibly her toes. At this point it became clear she would be losing at least 2 toes. After enduring several months of varying degrees of pain emanating from her foot, Lindsay consulted a surgeon about having the toes removed. That was just a few weeks ago. The surgeon let her know that they would have to take most of her foot. She looked for a second opinion and underwent another angioplasty to push out more blockages that had set up shop in her leg and were causing excruciating pain. The result was whatever clotting issue was happening in her leg was only exacerbated and it became immediately evident that Lindsay would be losing more than just some toes or a foot. After a couple days of monitoring and debating what could be saved, Lindsay underwent a left leg amputation above her knee.
For anyone keeping score, that puts the 2 year deficit at one baby, 2 kidneys, one eye, and one leg amongst the other inconsequential complications that have sent her to the doctors and hospital frequently. She is still trying to get approved for the transplant list and while a new kidney is a necessity, she is also going to be looking for a pancreas. As Lindsay has spent the last 7 months dealing with the foot issue, she has been unable to concentrate on getting the tests done to get approved for transplant, and now she will be focusing on learning how to live with one leg. The goal is to get her walking with a prosthetic. Seems straight-forward enough until you hear medical professionals debating where and how to do the rehab, as most in-patient rehab facilities that can do dialysis don't do her type of dialysis, and the ones that do think she is too complex of a case to admit her. Perhaps rehab will start in the home? The home will need to be outfitted with some equipment ASAP. As if she hasn't been through enough, and Mike along with her, then comes the stuff they shouldn't have to worry about since Mike has good insurance; how much is all this going to cost?
When they moved to Syracuse last spring, after extensive searching, they purchased a lovely split-level home. The two short stair cases that seemed great at the time (less stairs for her to have to traverse at once... heart failure makes you get winded easier), have now presented a new challenge. It will be a long time before Lindsay can walk with a prosthetic, let alone navigate stairs. They need to have 2 stair lifts installed, which will cost about $4000. Doctors agree with Mike and Lindsay that this is necessary. Another fall could be another limb. Insurance deems these a "convenience item" and will not cover any associated costs. They also have lots of other finicky clauses like "wheelchair OR walker." You can't hate the insurance company- they have paid an astronomical amount to cover Lindsay's medical expenses in the last couple years. But listening to what they won't cover and why they won't cover it is pretty frustrating.
In Mike's words- "But what about everything else that we are going to need? Wheel chair, walker, ramps, railings, transports, nurses, physical therapists, etc., etc.? What about the health insurance and our health care system? It covers some of those things but covers nothing related to modifications that need to be made to the home. So how much is all of this going to cost? It seems we are not all working towards the same common goal anymore. That goal should be to simply get my wife rehabilitated and eventually into a prosthetic so that she can function the way that the majority of the rest of us do. This needs to be done so that we can complete the series of tests that need to be done in order to get her onto the waiting list for a kidney and a pancreas. These organs are the only chance that she has to get off of dialysis and be diabetes free and be able to finally lead a 'normal life.' My wife is 38 years old. She has a lot of good years ahead and we have already lived through enough suffering for 10 peoples’ life times. We still want to be parents and we know to do so we need her to be healthy and we need to adopt a child who needs a good home to be raised in. We want to offer this home to a child. To do so we need help.
"We are not just looking for charity handouts and money. We are hopeful that our story can raise the awareness of the horror that the disease known as Diabetes can cause and why we need a cure as soon as possible. We are hopeful that we can help show that the healthcare system that we are provided needs severe improvements. We are hopeful that my wife can receive a good donor kidney and then a pancreas when the time is right. We are hopeful that someday we can raise a child and be parents. We are hopeful that somebody out there will take the time to hear our story and want to help. Maybe a contractor who can at least help provide some of the services that we need to make our home safe and accessible for my wife to live as she moves forward without 2/3 of her left leg. We are hopeful that we can provide a story to others who have or who are struggling, and that story or message should be that we are still positive. We are positive that we will overcome all of the challenges that we have been dealt. One way or another. Together, my wife and I along with our friends, our family and anybody else who has supported us are hopeful that we can turn all of these negatives into positives. We are simply trying to reach out to make it easier for a change. To make it easier by getting help. Help comes in many forms and fashions. Not just money but as we are finding out, the things we need are likely going to require a lot more money and resources than we currently have."
Thank you for taking the time to read to this point. If you can donate any amount, all donations are appreciated. If you can donate services, please reach out to Mike at [email redacted]. If you can't donate, please share their story so it might make it to someone who can, or that it might make it to someone who can benefit from hearing it.
Organizer and beneficiary
Tiffany Chiarilli
Organizer
Cicero, NY
Michael Chiarilli
Beneficiary