Tombo Strong
Donation protected
https://www.facebook.com/1307094347/posts/10212156533251029/
My Dad, Tom is an incredible human being who has touched so many lives in a positive way with his quick wit sense of humor and his big heart. He is currently fighting for his life as he awaits a heart and liver transplant at Duke Medical Center.
After a torturous year of tests, mixed opinions and misdiagnosis with no answers to why our hero suddenly became light headed, dizzy, out of breath with painfully swollen legs, our family finally received an answer. He was diagnosed in October of last year with two very rare diseases, one known as Cardiac Amyloidosis caused by a mutation in the TTR gene, meaning this disease is hereditary. The other disease is called MGUS/Smoldering Myeloma, which is caused by a plasma cell produced in the bone marrow and is a precursor to multiple myeloma. This disease may or may not develop into a rare blood cancer. The TTR Amyloidosis is a systemic disease where amyloid insoluble protein fibrils misfold and can deposit in multiple organs. In my Dad’s case they are depositing in his heart causing it to stiffen and malfunction. The mutated TTR is produced in the liver. Unfortunately for my dad, he developed the most fatal scenario and this is why a heart and liver transplant is desperately needed. The amyloid has been attacking his heart for God knows how many years. The proteins have hardened his cardiac muscles, which has enlarged his heart so the muscles can no longer contract and release to pump blood efficiently throughout his body. How ironic my Dad suffers from a hereditary disease that makes his heart too big. Anyone that knows my father would describe him just so, "a man with a huge heart.” The MGUS/smoldering myeloma will have to be monitored every three months for the rest of his life and pray that it does not turn into cancer where he would then have to go through chemo treatments. There is no treatment for my father's TTR Amyloidosis aside from having a double transplant. A heart and liver transplant is the only chance he has at survival.
Our family went through the most agonizing process trying to fight the insurance company for this life saving surgery. The insurance company continued to deny our claims because of the MGUS in his marrow. Their argument was that such an invasive procedure and the immunosuppressive drugs after transplant could set off the MGUS cells and he would then develop cancer because of it. However, every single specialist on my Dad's team wrote personal letters explaining that the chances of that happening were slim to none and this surgery is his only option for survival. Luckily, my Dad married a strong headed fighter, my incredible mother, who insisted on an expedited external appeal. She fiercely pleaded our case with factual evidence based studies and asked that our case be placed in the hands of experts in the field of Amyloidosis. The insurance company negligently handed our case to a medical director and a vascular surgeon, both of which have no experience with this rare disease. They had no right to deny this life saving treatment. They found multiple signs of mishandling of my Dad's claim and it was ultimately overturned and he was finally approved! He was recently placed on a list and is currently facing the challenge of waiting to find a heart that can support a man of his size with his exact blood type. If he receives such a blessing, the liver would also have to be in great condition in order to proceed with the transplants. As you can imagine, waiting for a perfect match for not only one, but two organs can be the most excruciating experience. To say the very least, it has been a long and emotionally draining road for our family but none compared to the agonizing one our hero is enduring. My Dad has been a patient at Duke Medical Center for the last three months when his condition got so bad he needed to be monitored 24/7. He spent the majority of that time fighting insurance and now waits for a miracle in the ICU.
Our family is reaching out for any financial help because as we wait, the bills are increasing. My dad’s normal response when in a financial bind would be, “I’ll just work more overtime or get another job to keep us a float.” Unfortunately because of this disease that is no longer an option. Hopefully through the grace of God this long journey will have a happy ending. My mother stays with my dad at Duke throughout the week and drives four hours back and forth to their new home in Leland, North Carolina only to take care of a few things before she heads back for the week. My Dad is forced to wait patiently, alone without his wife and family who love and adore him. He is not allowed to leave the hospital and is limited to walking with his nurse only around the ICU floor. His lungs have not taken in fresh air for over a month now. He worked hard his entire life for his family and takes much pride in being the provider. He worked two, sometimes three jobs to assure that his family never needed or wanted for anything. He always said, "when I get your mother our dream home, then I’ll take it easy.” He was diagnosed just months after they moved in to their new home. Imagine a lifetime of hard work, countless sacrifices and reaching for only a brief moment of validation. Now he is bedridden and helpless watching my mother struggle to pay the bills. It is the worst possible situation a man of his character can ever be put through. And that is why his children who he sacrificed so much for, are asking for help because he never will. My parents deserve and need relief through this nightmare.
The medical bills and overall expenses have added so much stress on top of their emotional heartache. Tom's road to recovery hasn't even begun. If it's God's will, my dad will get a heart and liver but the recovery process will be intense and long. The financial burden will be tremendous at that point because they will need to find housing close to the hospital for many months after the transplant. It would mean the world to my family if we could gather any support to lighten their load. I know these times are hard for most and to donate to a complete stranger is a difficult decision but we ask for anything at all. If you could only meet my dad, you would immediately relate him to a beloved family member of your own. He would make you laugh within moments of meeting him and make you feel comfortable and welcome with his genuine goodness. If you could find it in your hearts to give even the smallest donation, our family will be forever grateful! Thank you for your time a consideration.
Please join us as we hold a benefit for Tom in his honor. ‘TAPS for TOM’, features a beer garden showcasing some of Southern California's top breweries, a waterside grill with food from the award winning Salt Restaurant and live music. A portion of the proceeds will go towards Tom's financial needs through the double transplant and the long road to recovery. ‘TAPS for TOM’ begins at noon, Saturday, September 15th at the Marina Del Rey Hotel located in Marina Del Rey, California. The Campbell kids will be there to represent their hero. Please come and join us! We hope to see you there and thank you in person!
God Bless,
The Campbell Family
My Dad, Tom is an incredible human being who has touched so many lives in a positive way with his quick wit sense of humor and his big heart. He is currently fighting for his life as he awaits a heart and liver transplant at Duke Medical Center.
After a torturous year of tests, mixed opinions and misdiagnosis with no answers to why our hero suddenly became light headed, dizzy, out of breath with painfully swollen legs, our family finally received an answer. He was diagnosed in October of last year with two very rare diseases, one known as Cardiac Amyloidosis caused by a mutation in the TTR gene, meaning this disease is hereditary. The other disease is called MGUS/Smoldering Myeloma, which is caused by a plasma cell produced in the bone marrow and is a precursor to multiple myeloma. This disease may or may not develop into a rare blood cancer. The TTR Amyloidosis is a systemic disease where amyloid insoluble protein fibrils misfold and can deposit in multiple organs. In my Dad’s case they are depositing in his heart causing it to stiffen and malfunction. The mutated TTR is produced in the liver. Unfortunately for my dad, he developed the most fatal scenario and this is why a heart and liver transplant is desperately needed. The amyloid has been attacking his heart for God knows how many years. The proteins have hardened his cardiac muscles, which has enlarged his heart so the muscles can no longer contract and release to pump blood efficiently throughout his body. How ironic my Dad suffers from a hereditary disease that makes his heart too big. Anyone that knows my father would describe him just so, "a man with a huge heart.” The MGUS/smoldering myeloma will have to be monitored every three months for the rest of his life and pray that it does not turn into cancer where he would then have to go through chemo treatments. There is no treatment for my father's TTR Amyloidosis aside from having a double transplant. A heart and liver transplant is the only chance he has at survival.
Our family went through the most agonizing process trying to fight the insurance company for this life saving surgery. The insurance company continued to deny our claims because of the MGUS in his marrow. Their argument was that such an invasive procedure and the immunosuppressive drugs after transplant could set off the MGUS cells and he would then develop cancer because of it. However, every single specialist on my Dad's team wrote personal letters explaining that the chances of that happening were slim to none and this surgery is his only option for survival. Luckily, my Dad married a strong headed fighter, my incredible mother, who insisted on an expedited external appeal. She fiercely pleaded our case with factual evidence based studies and asked that our case be placed in the hands of experts in the field of Amyloidosis. The insurance company negligently handed our case to a medical director and a vascular surgeon, both of which have no experience with this rare disease. They had no right to deny this life saving treatment. They found multiple signs of mishandling of my Dad's claim and it was ultimately overturned and he was finally approved! He was recently placed on a list and is currently facing the challenge of waiting to find a heart that can support a man of his size with his exact blood type. If he receives such a blessing, the liver would also have to be in great condition in order to proceed with the transplants. As you can imagine, waiting for a perfect match for not only one, but two organs can be the most excruciating experience. To say the very least, it has been a long and emotionally draining road for our family but none compared to the agonizing one our hero is enduring. My Dad has been a patient at Duke Medical Center for the last three months when his condition got so bad he needed to be monitored 24/7. He spent the majority of that time fighting insurance and now waits for a miracle in the ICU.
Our family is reaching out for any financial help because as we wait, the bills are increasing. My dad’s normal response when in a financial bind would be, “I’ll just work more overtime or get another job to keep us a float.” Unfortunately because of this disease that is no longer an option. Hopefully through the grace of God this long journey will have a happy ending. My mother stays with my dad at Duke throughout the week and drives four hours back and forth to their new home in Leland, North Carolina only to take care of a few things before she heads back for the week. My Dad is forced to wait patiently, alone without his wife and family who love and adore him. He is not allowed to leave the hospital and is limited to walking with his nurse only around the ICU floor. His lungs have not taken in fresh air for over a month now. He worked hard his entire life for his family and takes much pride in being the provider. He worked two, sometimes three jobs to assure that his family never needed or wanted for anything. He always said, "when I get your mother our dream home, then I’ll take it easy.” He was diagnosed just months after they moved in to their new home. Imagine a lifetime of hard work, countless sacrifices and reaching for only a brief moment of validation. Now he is bedridden and helpless watching my mother struggle to pay the bills. It is the worst possible situation a man of his character can ever be put through. And that is why his children who he sacrificed so much for, are asking for help because he never will. My parents deserve and need relief through this nightmare.
The medical bills and overall expenses have added so much stress on top of their emotional heartache. Tom's road to recovery hasn't even begun. If it's God's will, my dad will get a heart and liver but the recovery process will be intense and long. The financial burden will be tremendous at that point because they will need to find housing close to the hospital for many months after the transplant. It would mean the world to my family if we could gather any support to lighten their load. I know these times are hard for most and to donate to a complete stranger is a difficult decision but we ask for anything at all. If you could only meet my dad, you would immediately relate him to a beloved family member of your own. He would make you laugh within moments of meeting him and make you feel comfortable and welcome with his genuine goodness. If you could find it in your hearts to give even the smallest donation, our family will be forever grateful! Thank you for your time a consideration.
Please join us as we hold a benefit for Tom in his honor. ‘TAPS for TOM’, features a beer garden showcasing some of Southern California's top breweries, a waterside grill with food from the award winning Salt Restaurant and live music. A portion of the proceeds will go towards Tom's financial needs through the double transplant and the long road to recovery. ‘TAPS for TOM’ begins at noon, Saturday, September 15th at the Marina Del Rey Hotel located in Marina Del Rey, California. The Campbell kids will be there to represent their hero. Please come and join us! We hope to see you there and thank you in person!
God Bless,
The Campbell Family
Organizer and beneficiary
Colleen Simons
Organizer
Redondo Beach, CA
Karen Campbell
Beneficiary
