Kick In to Stop Sarcoidosis
Tricia Barren
Tricia Barren
Thank you for visiting my page!
As you might know, the fight against sarcoidosis is a cause that is important to me.
My Dad’s story:
In November 2011, my Dad was diagnosed with lung cancer. It was devastating news, but my Dad was the strongest man I knew, and he was going to fight this. He hated this diagnosis for so many reasons, but most of all, he hated how everyone walked on egg shells around him. He was always the guy that people went to when they had problems - he would find a way to cheer you up. He wanted to be that guy again - he wanted the cancer gone!
His surgery was originally scheduled for December 22nd; and while Dad wanted the cancer gone, he worried about how his recovery would impact Christmas for his grandkids, so he spoke with his surgeon, and he pushed the surgery until after the New Year. That gave us time to prepare a plan for his recovery. It also gave us more time to get him in to see his physicians for pre-surgical tests. His cardiologist gave him the all clear. He had a biopsy done on his lymph nodes - again, all clear. This was all good news, and we felt like we were set to get him through the surgery, and the long recovery.
On January 5th, we were all up super early for Dad’s surgery. It was an unseasonably warm morning, and I remember Dad walking around the backyard before we left - probably scouting out projects for when he recovered.
At the hospital, we all gathered around Dad after they prepped him for surgery, and we told him how much we loved him. Dan had an important meeting scheduled for that day, and Dad told him to get to that meeting - everything would be fine. Dan didn’t want to leave, but Dad insisted, so Dan let Dad know that he would be back in time to see him when he woke up in recovery. Then the nurses told Dad it was time to take him to surgery. I could hear the nurses laughing as they wheeled my Dad away from us - I’m sure it was some inappropriate joke that my Dad had told them.
After about 3 or so hours, the surgeon came out, and let us know that there had been a small complication, but Dad was out of surgery, and in recovery - we could see him in about an hour or so.
An hour went by, and then 30 more minutes, and we asked the front desk nurse what was going on. The surgeon came out to let us know that there had been another complication, but don’t be alarmed. They were taking Dad to the cath lab. The nurses asked us to grab our belongings from the waiting room, and they took us to a cramped little private room.
I have no idea how much time passed from that moment on in the day. I remember leaving the cramped room to call Dan - I could hear the panic in his voice as he let me know that he was on his way back to the hospital. My memories are fuzzy from that point on, but I do recall the next time the surgeon came in, the Priest was with him. They informed us that my Dad was in heart block, but the cardiologist was with him. The next visit from the surgeon was to inform us that they were performing CPR on my Dad. I tried to call Dan, but couldn’t get through. I had to leave the room to make the phone call because reception was bad in the room. As I walked back towards the room, the surgeon was around the corner, and I heard him tell the nurse, ‘I will inform the family’. I literally broke down right there in the hallway. I couldn’t move, but I knew I had to get back to that room for Mom and Tracy. I also knew that I needed to get in touch with Dan, and so I left to make the most difficult call I would ever have to make - I called Dan to let him know that Dad was gone.
The day after my Dad’s funeral, we were sitting in the living room, reading all of the sympathy cards, when the phone rang. Dan answered the phone, and quietly walked into a bedroom. He came out of the room looking shaken. The phone call was from the surgeon - Dad’s pathology report came back, and he didn’t have cancer. His diagnosis was sarcoidosis. He should not have gone through that surgery, as it would not have made a difference - it would not have done a damn thing to help him with this disease. This was a disease unknown to us, other than Tracy reading a brief snippet about it before Dad’s surgery. She had been researching some odd symptoms Dad had been having around Christmas, but we all had it in our mind that this was cancer, and surgery was the treatment. Never did we think to question the diagnosis.
I spent so much time being angry, and blaming the doctors. I did more research though, and realized that because this disease is so rare, and the fact the symptoms are so similar to cancer symptoms (including what appears as tumors on scans), this misdiagnosis is all too common, and it’s due to lack of funding for research and development. Dad’s doctors followed the protocols that they knew, and with sarcoidosis being so rare, it wasn’t something that was discussed as a possible diagnosis.
And so I walk to help fund more research for this disease. I walk to help others find a proper diagnosis - I walk to help those battling this disease find effective treatments - I walk so that other families know that we are with them, and we will fight for them - I walk to honor my Dad.
Please consider helping me reach my goal. Together, we can Stop Sarcoidosis!
- Tricia
As you might know, the fight against sarcoidosis is a cause that is important to me.
My Dad’s story:
In November 2011, my Dad was diagnosed with lung cancer. It was devastating news, but my Dad was the strongest man I knew, and he was going to fight this. He hated this diagnosis for so many reasons, but most of all, he hated how everyone walked on egg shells around him. He was always the guy that people went to when they had problems - he would find a way to cheer you up. He wanted to be that guy again - he wanted the cancer gone!
His surgery was originally scheduled for December 22nd; and while Dad wanted the cancer gone, he worried about how his recovery would impact Christmas for his grandkids, so he spoke with his surgeon, and he pushed the surgery until after the New Year. That gave us time to prepare a plan for his recovery. It also gave us more time to get him in to see his physicians for pre-surgical tests. His cardiologist gave him the all clear. He had a biopsy done on his lymph nodes - again, all clear. This was all good news, and we felt like we were set to get him through the surgery, and the long recovery.
On January 5th, we were all up super early for Dad’s surgery. It was an unseasonably warm morning, and I remember Dad walking around the backyard before we left - probably scouting out projects for when he recovered.
At the hospital, we all gathered around Dad after they prepped him for surgery, and we told him how much we loved him. Dan had an important meeting scheduled for that day, and Dad told him to get to that meeting - everything would be fine. Dan didn’t want to leave, but Dad insisted, so Dan let Dad know that he would be back in time to see him when he woke up in recovery. Then the nurses told Dad it was time to take him to surgery. I could hear the nurses laughing as they wheeled my Dad away from us - I’m sure it was some inappropriate joke that my Dad had told them.
After about 3 or so hours, the surgeon came out, and let us know that there had been a small complication, but Dad was out of surgery, and in recovery - we could see him in about an hour or so.
An hour went by, and then 30 more minutes, and we asked the front desk nurse what was going on. The surgeon came out to let us know that there had been another complication, but don’t be alarmed. They were taking Dad to the cath lab. The nurses asked us to grab our belongings from the waiting room, and they took us to a cramped little private room.
I have no idea how much time passed from that moment on in the day. I remember leaving the cramped room to call Dan - I could hear the panic in his voice as he let me know that he was on his way back to the hospital. My memories are fuzzy from that point on, but I do recall the next time the surgeon came in, the Priest was with him. They informed us that my Dad was in heart block, but the cardiologist was with him. The next visit from the surgeon was to inform us that they were performing CPR on my Dad. I tried to call Dan, but couldn’t get through. I had to leave the room to make the phone call because reception was bad in the room. As I walked back towards the room, the surgeon was around the corner, and I heard him tell the nurse, ‘I will inform the family’. I literally broke down right there in the hallway. I couldn’t move, but I knew I had to get back to that room for Mom and Tracy. I also knew that I needed to get in touch with Dan, and so I left to make the most difficult call I would ever have to make - I called Dan to let him know that Dad was gone.
The day after my Dad’s funeral, we were sitting in the living room, reading all of the sympathy cards, when the phone rang. Dan answered the phone, and quietly walked into a bedroom. He came out of the room looking shaken. The phone call was from the surgeon - Dad’s pathology report came back, and he didn’t have cancer. His diagnosis was sarcoidosis. He should not have gone through that surgery, as it would not have made a difference - it would not have done a damn thing to help him with this disease. This was a disease unknown to us, other than Tracy reading a brief snippet about it before Dad’s surgery. She had been researching some odd symptoms Dad had been having around Christmas, but we all had it in our mind that this was cancer, and surgery was the treatment. Never did we think to question the diagnosis.
I spent so much time being angry, and blaming the doctors. I did more research though, and realized that because this disease is so rare, and the fact the symptoms are so similar to cancer symptoms (including what appears as tumors on scans), this misdiagnosis is all too common, and it’s due to lack of funding for research and development. Dad’s doctors followed the protocols that they knew, and with sarcoidosis being so rare, it wasn’t something that was discussed as a possible diagnosis.
And so I walk to help fund more research for this disease. I walk to help others find a proper diagnosis - I walk to help those battling this disease find effective treatments - I walk so that other families know that we are with them, and we will fight for them - I walk to honor my Dad.
Please consider helping me reach my goal. Together, we can Stop Sarcoidosis!
- Tricia
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