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AA Aplastic anemia

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  #1  
Old Sat Aug 21, 2010, 01:48 PM
Ellieknits Ellieknits is offline
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Father Failing

My 84-yo father was dx'ed with AA about three weeks ago. He also has kidney failure.

He received 4 units of blood about two weeks ago. I talked to him this morning, and he is a bit confused. He also told me he had an ultrasound of his abdomen last week and now has a fatty liver. They are going to do a CAT scan next week.

It sounds like his body is just shutting down. He said he sleeps most of the time now.

I'm going to go up there next week. I was afraid a visit would tire him out more, but he said at this point, it doesn't matter. He seems to be at peace with what is happening.

He has been so close to my brother, but brother doesn't handle these things well. Dad said brother has not called in several weeks, but due to the slight confusion, he may have talked with him more recently.

This is all so hard.

Thanks for listening--

Ellie
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  #2  
Old Sat Aug 21, 2010, 05:14 PM
Neil Cuadra Neil Cuadra is offline
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Ellie,

I understand how difficulty this is for you and your family. I'm very glad to hear that your father is able to tell you what's going on and especially that he isn't agitated, but of course you wouldn't want him to simply give up. It's unlikely that doctors will recommend aggressive treatment for an 84-year-old, but there may still be choices about how to boost his strength, lessen symptoms, and help with his mental and physical comfort.

Perhaps he doesn't want to worry you and is underplaying his concerns. Sometimes parents still want to protect "the kids" even as adults. I'll bet he's very much looking forward to your visit and that it will boost his spirits.

Do you think it would be helpful if you spoke to his doctor ahead of time, by phone or when you go to visit, to get a first-hand report of his status and prognosis? It's hard for anyone to understand and keep track of complicated health problems, let alone an 84-year patient who sometimes get confused.
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Old Sat Aug 21, 2010, 05:38 PM
Ellieknits Ellieknits is offline
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Hi, Neil

Thanks so much for your kind post.

I believe Dad is ready for hospice care. I spoke with our local hospice this morning, and they said that Dad is a likely candidate.

There had been some talk about his starting EPO, and this still may be a possibility. I don't think Dad would allow me to talk with his doc, as he and my step-mother are making the decisions.

Dad said he is just accepting of all this. I believe when I go up I will get more answers.

I'm not listed as a decsion-maker for him, and as long as he is able, he will do this himself. SM is a kind person, and I know she will do what is best for him when he is no longer able to do this himself.

I wish the AA had been found earlier, and perhaps more could have been done. Dad will not opt for aggressive treatment in any case, but will receive comfort care.

Thanks again, and I hope you and yours are well.

Ellie
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  #4  
Old Sat Aug 21, 2010, 05:39 PM
Laura Laura is offline
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I am so sorry to hear about this. I agree with Neil. Maybe a visit from you might be the thing to cheer him up. What about seeking a second opinion? What are they telling you for the "whys" of what is going on?

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #5  
Old Sat Aug 21, 2010, 05:40 PM
Laura Laura is offline
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Just saw your new post right now. We must have sent it at the same time.

I am sorry there is not much "can" do. Let us know if you have any questions.

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #6  
Old Sat Aug 21, 2010, 08:18 PM
Lisa V Lisa V is offline
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Ellie, I'm sorry to hear of your Dad's condition. AA is serious enough on its own, but when you throw in kidney failure and his age, it makes it really difficult, if not impossible, to treat. If they think that he is a candidate for hospice, I would believe that and try to accept it.

I lost my father earlier this year (to prostate cancer). He also went into hospice care just briefly before he died, which was infinitely preferable to making his last days miserable with aggressive treatment. They kept him comfortable, he didn't have to leave his apartment, and he was at peace with it. Thankfully we had enough of a forewarning that my sister and I were able to fly in from opposite ends of the country to spend some quality time with him while he was still "with it". I'm really glad I did, and I know it meant a lot to him too. I would urge you to do the same, and I hope you can get your brother to go too.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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  #7  
Old Sun Aug 22, 2010, 01:14 AM
Ellieknits Ellieknits is offline
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Laura and Lisa

Thanks so much--

Yes, it is difficult. Lisa, I'm so sorry about your Dad. That is wonderful you were able to see him. Dad is already getting confused, but he'll know who I am.

I hope you and yours are well--

Ellie
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  #8  
Old Sun Aug 22, 2010, 09:44 AM
mannythedog mannythedog is offline
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Gather

Lisa V. is so correct on the Hospice issue. If you have not read my posts on my fathers journey, it talks about the great care hospice provided, even is only for less than a week. It allowed my family to gather and be a part.

As you prepare, remember, you are thought about by all care givers at this time. It is emotionally hard as well as an honor to be there to help.

Pop was a tough cookie {I guess it was the generation} and was aware of all of us to the end. Gather the troops and tell him everything you never did and always did. All I can say is your being thought of, and "What Pop said."

God bless

Scott

Son of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #9  
Old Sun Aug 22, 2010, 11:07 AM
Ellieknits Ellieknits is offline
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Scott

Thank you so much. You, and everyone, are so correct. Yes, it will be an honor to help Dad leave gently.

I will read about your journey with your father, Scott. I need to read it, in fact.

I'm so glad I found this site. You all have provided immense support, and it is greatly appreciated.

My husband and I will be flying up on Sept. 6th. I'm sensing that Dad will hold on until he sees his family one more time. My brother does not respond to my e-mails, which is a sad thing. Hospice was telling me yesterday that bad family dynamics become worse during these kind of situations.

Thank you again so much for your kindness.

Ellie
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  #10  
Old Tue Sep 28, 2010, 03:06 PM
Ellieknits Ellieknits is offline
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Update on Father

I greatly appreciate all the help I've gotten here.

Dad had a liver biopsy last week, and he is STILL waiting for the results. The dx. of AA was ruled out. His MD fears Dad has liver cancer, which probably spread from somewhere else. Dad will be due for another transfusion soon. It sounds like all the sx's are from cancer.

I will update when we have more info. The dx. seems to change from week to week, which is so frustrating, mainly for Dad.

Kind Regards--

Ellie
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