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Spouses and Caregivers The people who take care of the patient

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Old Wed Feb 5, 2014, 12:41 PM
Scootin102 Scootin102 is offline
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Location: Southwest VA
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Concerns of a parent of an adult child facing a bone marrow transplant

My 27 year old son was recently diagnosed with Hepatitis induced Aplastic Anemia and we are just beginning the process for a bone marrow transplant. I have always taken great pride in being able to learn things for myself and in helping myself, but I confess that I'm in over my head this time. I need advice and support from others who have been through or are going through this. First and always foremost, of course, is the fear of loss of life or loss of quality of life. But as a parent, I'm also concerned for my son's loss of income, loss of health insurance due to job loss, and the emotional and physical stress his wife will soon encounter. Parents feel everything. We wish with every strength we have that it could be us and not our child, no matter what age that child is. If anyone reading this has helped an adult child through a bone marrow transplant, I welcome any advice you can give.
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Old Wed Feb 5, 2014, 05:02 PM
Whizbang Whizbang is offline
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Scootin,

First and formost, you will have to be there for both your son and daughter in law, I'm not quite sure if there are grandchildren in the picture, which would make them priority number one (This coming from a father of three)...

Both of my parents are passed, and my in laws have been wonderful in supporting my wife take care of our three school aged children... (9-14 Years of age)... My wife spent 80% of my hospital stay with me, except for a week she was sick...

As for your son, I would strongly suggest that he contact his human resources department (in writing) and let them know that he is sick and may need to go out on disability, I don't believe that they can fire him once they are informed, they must give him reasonable accommodation (depending on the size of the company)... He may have decent benefits that may help him should he not be able to work, ie. Long Term Disability, Salary continuance, LT care, etc... My company pays for my healthcare for up to 2 years while I'm out on disability...

You state that he has Hepatitis induced Aplastic Anemia(AA), I've never heard of "Hepatitis induced", but I am assuming they have treated the underlying Hepatitis? I know they test for Hepatitis before a bone marrow transplant(BMT), and admit I'm not quite sure how this impacts moving toward a BMT...

Also how far / how bad is his AA, do you know any of his statistics, Red Blood Cell count, White Blood Cells, Platelets, hemoglobin?

Best of luck to you, and God Bless you and your Son...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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Old Wed Feb 5, 2014, 06:24 PM
Scootin102 Scootin102 is offline
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Thanks!

Thanks so much, Whizbang. Yes--the hepatitis has been treated and was thought to be autoimmune hepatitis. Hepatitis associated aplastic anemia is rare. His lowest platelet count has been 6 and he's receiving platelet transfusions every 5-6 days while we wait to find a donor. He is not producing many white "baby cells." Our other son is being tested now but I know better than to hang my hopes on a 25% chance. Thank you for the encouraging word about your company. The best we were hoping for is for them to continue his insurance for 3 months; this gives me hope that it could be longer. Our son has applied for disability. Every encouraging word helps so much!
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Old Wed Feb 5, 2014, 08:23 PM
Whizbang Whizbang is offline
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Scootin,

At a minimum, he should be able to pay for cobra (Health care) while on disability, although he will/may have to pay the full premium, the alternative is unthinkable, as I don't need to tell you the possible cost of a BMT and 1 year follow up care... Cobra is usually for at least 12 months, and sometimes 18 months, depending on state law...

Again I'm not sure if there are Grandchildren involved, but they will need every bit as much attention as he will...

May his sibling be a match, All the best...
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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