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Patrick has recently been diagnosed with Immune Thrombocytopenia (THROM-bo-si-to-PE-ne-ah) or ITP, a rare auto-immune condition that can be as challenging to pronounce as it is to live with. Characterized by low blood platelet counts, ITP is caused by the body’s immune system destroying healthy platelets that leads to easy or excessive bruising and bleeding, in addition to initiating a daily roller coaster of emotions and ongoing medical management. There is no cure for ITP.
_The Story_
It all started back in March, Patrick and I were traveling to California for vacation. After fighting off a cold during the trip, we both got food poisoning on our last day. Good times. Not feeling well, Pat noticed blood in his mouth, a rash on his legs and a couple bruises that just appeared for no reason. After a few days things got worse, more bruises and bleeding in his mouth. He went to urgent care but the visit was confusing. No real diagnosis, just come back for a blood draw. After that they sent him home saying they would probably have results Monday and call him if there was anything unusual. Monday morning he got a stomach dropping call saying he needed to check into the ER immediately because his platelet count was dangerously low. In his case, he had a count of 1,000 - a healthy adult has levels of 150,000 to 300,000. Platelets are tiny blood cells that help your body form clots to stop bleeding and the dangers of low counts including hemorrhaging, spontaneous bleeding in the body and severe bleeding if wounded. It was terrifying for him. Many of these symptoms pointed to terrible terminal illnesses and organ failures. The WebMD rabbit hole was grim.
After a lengthy wait in the ER, the hematologist diagnosed Patrick with Immune Thrombocytopenic Purpura (ITP). He was finally admitted into the hospital and after 11 hours treated with a high dose of steroids, and IV of Immunoglobulin (IVIG) which is treatment used as a “front line” therapy to temporarily elevate platelet counts. He was constantly poked and prodded, visited by doctor's specialists, students who wanted to learn about his rare disease. After 3 days he was released with a Rx for steroids and blood pressure medication. A week later after a routine blood draw, he had to be readmitted to the ER. The steroids had not worked and he had to receive more IVIG. Over the last three months, Pat has been in the ER overnight or adult medicine ward 4 times to stabilize his levels along with over 74 recorded tests. In parallel he is being treated with new therapies.
_Treatment and Plan_
Pat's treatment includes Rituximab, a series of 4 IVs. It is a B-cell depletion therapy also used to treat certain types of cancer. It works by attaching to certain blood cells from the immune system (B cells) and killing them (https://pdsa.org/b-cell-depletion.html). The treatment significantly lowers the immune system with the goal of destroying the white blood cells that are attacking his platelets, so that his body can go back to regulating healthy levels on his own.
Patrick completed his last Rituximab treatment and we are hopeful it helps. Right now we monitor. Pat is currently visiting the hospital three times a week for blood draws, receives weekly injections of Romiplostim (Nplate) to stimulate the bone marrow to produce more platelets. And continues to receive IVIG as needed, however, it is not a long term solution, quite expensive, and each dose takes about six hours. We are hoping the R&R combo works to stabilize his levels allowing the ITP to go into remission, which is determined after 2 months of stability. If it does not work we will have to seek alternatives including the possibility of surgery to remove his spleen.
Patrick has been a trooper through this whole process and we are both very thankful that his condition is treatable and he is not in pain. But he could really use your help and support, and if you know him he would never ask for it.
Thank you for your support, we love you.
Nikki and Patrick
Patrick has recently been diagnosed with Immune Thrombocytopenia (THROM-bo-si-to-PE-ne-ah) or ITP, a rare auto-immune condition that can be as challenging to pronounce as it is to live with. Characterized by low blood platelet counts, ITP is caused by the body’s immune system destroying healthy platelets that leads to easy or excessive bruising and bleeding, in addition to initiating a daily roller coaster of emotions and ongoing medical management. There is no cure for ITP.
_The Story_
It all started back in March, Patrick and I were traveling to California for vacation. After fighting off a cold during the trip, we both got food poisoning on our last day. Good times. Not feeling well, Pat noticed blood in his mouth, a rash on his legs and a couple bruises that just appeared for no reason. After a few days things got worse, more bruises and bleeding in his mouth. He went to urgent care but the visit was confusing. No real diagnosis, just come back for a blood draw. After that they sent him home saying they would probably have results Monday and call him if there was anything unusual. Monday morning he got a stomach dropping call saying he needed to check into the ER immediately because his platelet count was dangerously low. In his case, he had a count of 1,000 - a healthy adult has levels of 150,000 to 300,000. Platelets are tiny blood cells that help your body form clots to stop bleeding and the dangers of low counts including hemorrhaging, spontaneous bleeding in the body and severe bleeding if wounded. It was terrifying for him. Many of these symptoms pointed to terrible terminal illnesses and organ failures. The WebMD rabbit hole was grim.
After a lengthy wait in the ER, the hematologist diagnosed Patrick with Immune Thrombocytopenic Purpura (ITP). He was finally admitted into the hospital and after 11 hours treated with a high dose of steroids, and IV of Immunoglobulin (IVIG) which is treatment used as a “front line” therapy to temporarily elevate platelet counts. He was constantly poked and prodded, visited by doctor's specialists, students who wanted to learn about his rare disease. After 3 days he was released with a Rx for steroids and blood pressure medication. A week later after a routine blood draw, he had to be readmitted to the ER. The steroids had not worked and he had to receive more IVIG. Over the last three months, Pat has been in the ER overnight or adult medicine ward 4 times to stabilize his levels along with over 74 recorded tests. In parallel he is being treated with new therapies.
_Treatment and Plan_
Pat's treatment includes Rituximab, a series of 4 IVs. It is a B-cell depletion therapy also used to treat certain types of cancer. It works by attaching to certain blood cells from the immune system (B cells) and killing them (https://pdsa.org/b-cell-depletion.html). The treatment significantly lowers the immune system with the goal of destroying the white blood cells that are attacking his platelets, so that his body can go back to regulating healthy levels on his own.
Patrick completed his last Rituximab treatment and we are hopeful it helps. Right now we monitor. Pat is currently visiting the hospital three times a week for blood draws, receives weekly injections of Romiplostim (Nplate) to stimulate the bone marrow to produce more platelets. And continues to receive IVIG as needed, however, it is not a long term solution, quite expensive, and each dose takes about six hours. We are hoping the R&R combo works to stabilize his levels allowing the ITP to go into remission, which is determined after 2 months of stability. If it does not work we will have to seek alternatives including the possibility of surgery to remove his spleen.
Patrick has been a trooper through this whole process and we are both very thankful that his condition is treatable and he is not in pain. But he could really use your help and support, and if you know him he would never ask for it.
Thank you for your support, we love you.
Nikki and Patrick
Organizer and beneficiary
Nikki Cloud
Organizer
Seattle, WA
Patrick Boyce
Beneficiary