The Touhey & Altamura Living Donor Fund
Donation protected
I've kept this to just a handful of friends. A few months ago as this became more serious, I began alluding to something big happening via my Instagram and Facebook story feeds. I didn't want to make a post until we knew for sure everything was falling into place. Then COVID19 happened and life had been put on hold. This has been almost two years in the making and at any time this process could have (and still can be) stopped for so many reasons. Here we go… *Breathe*
If you know my mom, Sandy King Altamura, then you know she's a pretty special person. Loving, opinionated, fierce, a force to be reckoned with. She has always had a very special place in my heart, just as her mother had in hers. The matriarchal force in my family runs quite strong. Her strength and determination has influenced me throughout my life. What many aren't aware of is that we nearly lost her in January of 2018. The family was terrified and desperate for answers. There were many days of hospital transfers, tests and visits. The diagnosis; end stage liver disease. This was devastating for all of us to hear.
As time went on, as did the endless testing and appointments, the family became educated about the choices in front of us. The decision to move forward with living donation became very clear to me on a personal level. I knew in my heart the second she was diagnosed two years ago that I wanted to apply to give her another chance at life. I just had to see if it was something I was even able to do for her. Mom was officially placed on the national transplant list this past November. This was a huge milestone and opened doors for us to pursue living donation as well as put her in the running for a deceased donor. Thousands of people die each year waiting for a donor via the transplant list. To get to the top of that list you must be near death's door. This sicker you are, the higher up the list you go. At that point you're in the hospital hooked to machines waiting to see IF you might be next. Often by the time a patient is sick enough to be at the top of the list, they're too sick to proceed with surgery. I decided to try and do whatever was in my power to see that she never reaches that threshold. If you know her well then you've seen the symptoms ranging from severe weight loss and utter exhaustion to the hepatic encephalopathy (serious confusion, difficulty communicating, decreases memory, etc) and many other issues that come along with a liver functioning at less than 20%. Medications can only do so much and only temporarily at that as this is an otherwise terminal diagnosis. Without a liver, I will lose my mother.
Once I found out I was a blood match, I stepped forward as a potential donor and started the intensive, three phase approval process. Many health issues can exclude one from being a donor. Believe it or not, the most common thing to halt the process are anatomical differences in the liver structures and bile ducts. Everyone has natural variants and they don't always line up.
It felt like I was climbing a step ladder as I passed each test and was allowed to continue to the next. We began to creep closer and closer. I have had an MRI, a CAT Scan with dye, Chest X-rays, Treadmill Stress Test, EKG, pap, mammogram, 22 vials of blood drawn and a very difficult and painful ultrasound guided liver biopsy under sedation. I've had dozens of meetings with the best nurse practitioners, psychologists, hepatologists, patient advocates, psychosocialists and transplant surgeons in the entire country. After all we've been through, I am very excited to announce the team has called with their congratulations and APPROVAL for me to move forward with transplant donation! I have passed the battery of tests (and while there are some health issues I am currently dealing with and glad they found) I am still more than healthy enough to donate.
This is bigger than a bone marrow transplant. This is bigger than donating a kidney. Not to ever minimize those but to highlight that this is an extremely serious surgery. It takes two teams, one for each of us, months of planning to coordinate this transplantation. They even gather and practice the surgery ahead of time virtually using all of our 3D imaging.
And if you didn't know, the liver is actually an incredible organ. It's the only organ that can regrow in the human body. The volumetrics show my left lobe to be approximately 36% of the total volume. My mother will likely get 64%, which is the entirety of my right lobe. The liver begins to regenerate almost immediately after transplantation for both the patient and recipient and is nearly it's original size within a few weeks in both of us! Liver recipients see a near reversal of all health issues that plagued them before their disease took hold and dammit, all I want is my mom back.
This has been an emotional rollercoaster. It's scary, exciting, nerve-racking, empowering, tear-jerking. It makes you question everything and it also puts life sharply into perspective. But most of all, it is absolutely full of hope.
"What can I do to help?"
Firstly, become an organ donor. Today. We hope that if nothing else this becomes a personal reminder of how important organ donations are. Please also share our story and help spread organ donation awareness.
And of course, I'm including the obligatory GoFundMe link. I will need minimum eight weeks off of work and require a safety net should anything happen and extend that time. We are simple, hard working, blue collar folk. My husband and I both work full time jobs in order to keep a roof over our heads and food on the table for our three children and two pups. My parents are retired and living off of social security. We are asking for your help in order to keep the gears and cogs turning at our homes and help my mom at the same time. we are aware how the virus has put a strain on everyone's lives, especially financially. Donations will be used for household bills for both our families during our recovery. Help ME help SANDY! Every single penny helps and every share helps spread our story.
Please feel free to ask questions in the comments or by messaging as I've become quite knowledgeable on the subject and am happy to answer questions. I am now extremely well educated on hand-assisted laparoscopic liver transplantation which this team has been at the forefront of pioneering. It fills my heart to know I have the support of my friends, teammates, family, hunting buddies, all my mother's friends and our Hopkinton folk, too.
From my family to yours, our sincerest thanks.
Please Share. ❤️
If you know my mom, Sandy King Altamura, then you know she's a pretty special person. Loving, opinionated, fierce, a force to be reckoned with. She has always had a very special place in my heart, just as her mother had in hers. The matriarchal force in my family runs quite strong. Her strength and determination has influenced me throughout my life. What many aren't aware of is that we nearly lost her in January of 2018. The family was terrified and desperate for answers. There were many days of hospital transfers, tests and visits. The diagnosis; end stage liver disease. This was devastating for all of us to hear.
As time went on, as did the endless testing and appointments, the family became educated about the choices in front of us. The decision to move forward with living donation became very clear to me on a personal level. I knew in my heart the second she was diagnosed two years ago that I wanted to apply to give her another chance at life. I just had to see if it was something I was even able to do for her. Mom was officially placed on the national transplant list this past November. This was a huge milestone and opened doors for us to pursue living donation as well as put her in the running for a deceased donor. Thousands of people die each year waiting for a donor via the transplant list. To get to the top of that list you must be near death's door. This sicker you are, the higher up the list you go. At that point you're in the hospital hooked to machines waiting to see IF you might be next. Often by the time a patient is sick enough to be at the top of the list, they're too sick to proceed with surgery. I decided to try and do whatever was in my power to see that she never reaches that threshold. If you know her well then you've seen the symptoms ranging from severe weight loss and utter exhaustion to the hepatic encephalopathy (serious confusion, difficulty communicating, decreases memory, etc) and many other issues that come along with a liver functioning at less than 20%. Medications can only do so much and only temporarily at that as this is an otherwise terminal diagnosis. Without a liver, I will lose my mother.
Once I found out I was a blood match, I stepped forward as a potential donor and started the intensive, three phase approval process. Many health issues can exclude one from being a donor. Believe it or not, the most common thing to halt the process are anatomical differences in the liver structures and bile ducts. Everyone has natural variants and they don't always line up.
It felt like I was climbing a step ladder as I passed each test and was allowed to continue to the next. We began to creep closer and closer. I have had an MRI, a CAT Scan with dye, Chest X-rays, Treadmill Stress Test, EKG, pap, mammogram, 22 vials of blood drawn and a very difficult and painful ultrasound guided liver biopsy under sedation. I've had dozens of meetings with the best nurse practitioners, psychologists, hepatologists, patient advocates, psychosocialists and transplant surgeons in the entire country. After all we've been through, I am very excited to announce the team has called with their congratulations and APPROVAL for me to move forward with transplant donation! I have passed the battery of tests (and while there are some health issues I am currently dealing with and glad they found) I am still more than healthy enough to donate.
This is bigger than a bone marrow transplant. This is bigger than donating a kidney. Not to ever minimize those but to highlight that this is an extremely serious surgery. It takes two teams, one for each of us, months of planning to coordinate this transplantation. They even gather and practice the surgery ahead of time virtually using all of our 3D imaging.
And if you didn't know, the liver is actually an incredible organ. It's the only organ that can regrow in the human body. The volumetrics show my left lobe to be approximately 36% of the total volume. My mother will likely get 64%, which is the entirety of my right lobe. The liver begins to regenerate almost immediately after transplantation for both the patient and recipient and is nearly it's original size within a few weeks in both of us! Liver recipients see a near reversal of all health issues that plagued them before their disease took hold and dammit, all I want is my mom back.
This has been an emotional rollercoaster. It's scary, exciting, nerve-racking, empowering, tear-jerking. It makes you question everything and it also puts life sharply into perspective. But most of all, it is absolutely full of hope.
"What can I do to help?"
Firstly, become an organ donor. Today. We hope that if nothing else this becomes a personal reminder of how important organ donations are. Please also share our story and help spread organ donation awareness.
And of course, I'm including the obligatory GoFundMe link. I will need minimum eight weeks off of work and require a safety net should anything happen and extend that time. We are simple, hard working, blue collar folk. My husband and I both work full time jobs in order to keep a roof over our heads and food on the table for our three children and two pups. My parents are retired and living off of social security. We are asking for your help in order to keep the gears and cogs turning at our homes and help my mom at the same time. we are aware how the virus has put a strain on everyone's lives, especially financially. Donations will be used for household bills for both our families during our recovery. Help ME help SANDY! Every single penny helps and every share helps spread our story.
Please feel free to ask questions in the comments or by messaging as I've become quite knowledgeable on the subject and am happy to answer questions. I am now extremely well educated on hand-assisted laparoscopic liver transplantation which this team has been at the forefront of pioneering. It fills my heart to know I have the support of my friends, teammates, family, hunting buddies, all my mother's friends and our Hopkinton folk, too.
From my family to yours, our sincerest thanks.
Please Share. ❤️
Organizer
Carrie-Lee Touhey
Organizer
Centerville, MA