whoa it's cold outside
i need to work on my papers tonight. but i wanted to quickly post about this past week, especially yesterday.
yesterday i went to hackensack university medical center for a bone marrow transplant class. it was about 3-4 hours long and then i met with the social worker there for about another 30-45 minutes. there were four sections to the class.
first, the nurse practitioner talked and gave an overview of what would happen and how necessary it is, once discharged from the hospital to have a caretaker with you everyday all the time for at least the first 30 days out of the hospital. Hackensack likes to try to keep you out of the hospital so there are many things that may have to be done at home. For example, if I need to ivs, a home care nurse may come and teach me and my caretaker how to give myself ivs. It is so weird to think of my apartment becoming similar to a hospital room. This also immediately made me realize how costly this potentially could be. Most of the time, a home care nurse even to come to teach things is expensive.
But there are a lot of other things and this is going to be quite a situation. I feel somewhat ready if this is what I must do. But i am scared. i want to get through the holidays and my papers and focus.
Then there was a nutritionist that came into speak about all the foods you are and are not allowed to have. This diet is called a low microbial diet or nutropenic (sp?) which I am already on pretty much.
After that a pharmacist came in quickly and discussed the different phasing of drugs and how there will be lots of drugs. When I am discharged from teh hospital, I will be on about 12 different drugs. And this will change eventually. But also they will do lots of tests to make sure I am getting the right amount or not too much or too little.
After that the social worker came in to talk. She talked about the social/emotional and financial part. It was a really great class and some things were hard to swallow but many were repeated. However it was good to meet the team and to have some questions answered.
I am looking into starting a new way to collect funds that will actually be tax deductible now but will not go to me directly. This will be good in a lot of ways but also somewhat difficult. This money that would be donated to this organization would pay for only my medical bills from hackensack hospital and the bone marrow transplant. The only issue I have with this is I know there are going to be a lot of costs that are not necessarily hospital bills that I will need to deal with throughout the year. So I need to figure out a way to have this fund set up and people can either donate to the fund for specific hospital bills or still give me money but it is not tax deductible and will go towards medical expenses but also personal expenses. If anyone has a good idea of how to do that, please let me know. As of now, all donations given to me are considered gifts and the reason for that is to keep my income low so I am able to still get disability.
The costs of this transplant are going to be beyond what I know and I have to decide what battles to fight-so I might just have to hope we can get through that part.
the holidays are coming up and i am very excited...
i need to go do work.
xo
yesterday i went to hackensack university medical center for a bone marrow transplant class. it was about 3-4 hours long and then i met with the social worker there for about another 30-45 minutes. there were four sections to the class.
first, the nurse practitioner talked and gave an overview of what would happen and how necessary it is, once discharged from the hospital to have a caretaker with you everyday all the time for at least the first 30 days out of the hospital. Hackensack likes to try to keep you out of the hospital so there are many things that may have to be done at home. For example, if I need to ivs, a home care nurse may come and teach me and my caretaker how to give myself ivs. It is so weird to think of my apartment becoming similar to a hospital room. This also immediately made me realize how costly this potentially could be. Most of the time, a home care nurse even to come to teach things is expensive.
But there are a lot of other things and this is going to be quite a situation. I feel somewhat ready if this is what I must do. But i am scared. i want to get through the holidays and my papers and focus.
Then there was a nutritionist that came into speak about all the foods you are and are not allowed to have. This diet is called a low microbial diet or nutropenic (sp?) which I am already on pretty much.
After that a pharmacist came in quickly and discussed the different phasing of drugs and how there will be lots of drugs. When I am discharged from teh hospital, I will be on about 12 different drugs. And this will change eventually. But also they will do lots of tests to make sure I am getting the right amount or not too much or too little.
After that the social worker came in to talk. She talked about the social/emotional and financial part. It was a really great class and some things were hard to swallow but many were repeated. However it was good to meet the team and to have some questions answered.
I am looking into starting a new way to collect funds that will actually be tax deductible now but will not go to me directly. This will be good in a lot of ways but also somewhat difficult. This money that would be donated to this organization would pay for only my medical bills from hackensack hospital and the bone marrow transplant. The only issue I have with this is I know there are going to be a lot of costs that are not necessarily hospital bills that I will need to deal with throughout the year. So I need to figure out a way to have this fund set up and people can either donate to the fund for specific hospital bills or still give me money but it is not tax deductible and will go towards medical expenses but also personal expenses. If anyone has a good idea of how to do that, please let me know. As of now, all donations given to me are considered gifts and the reason for that is to keep my income low so I am able to still get disability.
The costs of this transplant are going to be beyond what I know and I have to decide what battles to fight-so I might just have to hope we can get through that part.
the holidays are coming up and i am very excited...
i need to go do work.
xo
posted by Jenn at 5:38 PM
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