Bryan's Heart Transplant Fund
Donation protected
This is the story of Bryan who is my husband and best friend. He is also a son, a brother, a uncle and a good friend to alot of people.
Sometimes life takes us to a place you never thought you would be when you are only 53 years old, You should be thinking of wow 10 more years I can retire. Where do i want to live, where do I want to travel and work on your bucket list. For us we may not get to have that chance.
While Bryan was visiting his brother to help him make maple syrup he was having a hard time walking up to the trees and taking the buckets down with out having to stop and catch his breath even walking was diffacult. After a few day's hiss brother told him you need to go home and see your Dr. He did not call and tell me he was comming home early so I was supprised to see him. I'm at work the next day and he call's me for phone # to the Dr. A few min latter he calls me back and tells me they want him to go to the ER. Now mind you it supprised me he was going.
When you have lived with someone so long you do not always notice the changes. I did not know till he was in the hospital that he had been having health issues for about 6 to 7 months his loss of weight almost 70 lbs his shortness of breath that came and went. The weight loss was hard to notice as well as any swelling he had going on it was over the winter this started he always wears socks and sweat pants and as he has always had a beard you could not see the weight loss in is face.
So at the end of March in 2016 and in the ER we are told that he in heart failure and that he will be sent to St. Francis in Roslyn NY (We live on Long Island NY) I will always be happy and gratefull that he was sent there and that he got the right Drs. For a man who has never been in a hospital it showed, he had to learn there is hospital time and that is not the same as "Bryan" time. They did a cardiac mri, lots of blood work and then surgery to do a Heart Biopsy and that started our path to where we are now, When discharged he was told that he Amyloidosis of the heart it is a rare blood disorder less then 3000 are dignoised and less than 2% have cardiac involvement. We had an awsome hematoligst he had others that he treated, Bryan had a bone marrow biopsy to confirm the diag. During the next 6 months he had chemo treatments during that time he tried to keep working but after 3 months he could not work anymore. During that time the Oncologist wanted us to see a Dr. at Tufts Medical Center who is the goru of Amyloid, so off to Boston we go we were there for 3days of tests and lots of blood work our appt was on a Fri and aside from the Dr. there were 3 more went thinking a stem cell transplant but was told he would need a Heart Transplant then a stemcell transplant 6 to 12 months after transplant.
Needless to say "We were speachlees" there was not alot of talking for a few days. 2 weeks latter back to tufts to see if he could be placed on the list, on 12/ 18/13 he was put on the list.
Untill Sept of 2016 he was doing great he is now a 1B and on IV therpy and can not drive anymore. At some point it will not help him and he will be in the hospital till time of transplant and then after discharge we will have to stay in Boston for 6 to 8 weeks. I will take time off to be with him.
It will be a finical hardship I do not know how much paid time I will have, will need a place to stay his best buddy "Sookie" will either have to be boarded or fostered during that time bills mortgage ect ect.....
Thank you to Bryans carido rehab friends and staff for all love support. Thank you my fellow coworkers for your support and our family and friends we love and thank you for all help love and you give to us.
love Bryan, Janet and Sookie
Sometimes life takes us to a place you never thought you would be when you are only 53 years old, You should be thinking of wow 10 more years I can retire. Where do i want to live, where do I want to travel and work on your bucket list. For us we may not get to have that chance.
While Bryan was visiting his brother to help him make maple syrup he was having a hard time walking up to the trees and taking the buckets down with out having to stop and catch his breath even walking was diffacult. After a few day's hiss brother told him you need to go home and see your Dr. He did not call and tell me he was comming home early so I was supprised to see him. I'm at work the next day and he call's me for phone # to the Dr. A few min latter he calls me back and tells me they want him to go to the ER. Now mind you it supprised me he was going.
When you have lived with someone so long you do not always notice the changes. I did not know till he was in the hospital that he had been having health issues for about 6 to 7 months his loss of weight almost 70 lbs his shortness of breath that came and went. The weight loss was hard to notice as well as any swelling he had going on it was over the winter this started he always wears socks and sweat pants and as he has always had a beard you could not see the weight loss in is face.
So at the end of March in 2016 and in the ER we are told that he in heart failure and that he will be sent to St. Francis in Roslyn NY (We live on Long Island NY) I will always be happy and gratefull that he was sent there and that he got the right Drs. For a man who has never been in a hospital it showed, he had to learn there is hospital time and that is not the same as "Bryan" time. They did a cardiac mri, lots of blood work and then surgery to do a Heart Biopsy and that started our path to where we are now, When discharged he was told that he Amyloidosis of the heart it is a rare blood disorder less then 3000 are dignoised and less than 2% have cardiac involvement. We had an awsome hematoligst he had others that he treated, Bryan had a bone marrow biopsy to confirm the diag. During the next 6 months he had chemo treatments during that time he tried to keep working but after 3 months he could not work anymore. During that time the Oncologist wanted us to see a Dr. at Tufts Medical Center who is the goru of Amyloid, so off to Boston we go we were there for 3days of tests and lots of blood work our appt was on a Fri and aside from the Dr. there were 3 more went thinking a stem cell transplant but was told he would need a Heart Transplant then a stemcell transplant 6 to 12 months after transplant.
Needless to say "We were speachlees" there was not alot of talking for a few days. 2 weeks latter back to tufts to see if he could be placed on the list, on 12/ 18/13 he was put on the list.
Untill Sept of 2016 he was doing great he is now a 1B and on IV therpy and can not drive anymore. At some point it will not help him and he will be in the hospital till time of transplant and then after discharge we will have to stay in Boston for 6 to 8 weeks. I will take time off to be with him.
It will be a finical hardship I do not know how much paid time I will have, will need a place to stay his best buddy "Sookie" will either have to be boarded or fostered during that time bills mortgage ect ect.....
Thank you to Bryans carido rehab friends and staff for all love support. Thank you my fellow coworkers for your support and our family and friends we love and thank you for all help love and you give to us.
love Bryan, Janet and Sookie
Organizer
Janet Weller
Organizer
Calverton, NY