July 19, 2008 at 1:32 am #20909marionsModerator
so glad for things to have worked out and one of your worries has been eliminated.
Don’t forget to take a breather,
MarionJuly 18, 2008 at 11:50 pm #20908chrissy23Participant
I can’t even imagine. I break down just reading about it. My fiance’s bilirubin was up to 8 last week and now almost normal again. He was having similar symptoms. He was falling asleep on the doctor and very confused and lost. This week he is much better and back to normal pretty much. I don’t know what to say. This disease is so strange. May God bless the two of you. At a time like this financial issues should be the least of our worries but for some reason (for us as well) it becomes the main concern. I will be thinking about you both.
ChristinaJuly 18, 2008 at 6:08 pm #20907devoncatParticipant
You are amazing in your strength.
KrisJuly 18, 2008 at 1:05 pm #20906bbfransonParticipant
That’s good news, at least. Just know you are both in our thoughts and prayers.
BrendaJuly 18, 2008 at 10:44 am #20905
I want to express my gratitude to all of you wonderful caring people for being here. In all my fear and frustration through this terrible ordeal this site has been my refuge when I couldn’t get answers anywhere else.
John and I talked to a hospice nurse yesterday. So far it has been a relief to know we not just hanging out there. John still hasn’t come to grips with the reality of it all. He still thinks he may get well enough to restart chemo. He is having confusion issues. His last bili was 28.7, two weeks ago it was 17.6.
John is on whats called medicaid spend down. He has been on disability since January o7 and will not qualify for medicaire till January 09. Unfortunatly I don’t think we have that long. The hospice nurse told us that they have caseworkers that will take over his medicaid and we will never be billed for any service from them. This has given John and I much peace of mind in the financial area. John doesn’t want to leave me with huge medical bills.
I must get to work but again Iwanted to thank all of you who have helped ease my mind and answer my questions on this long hard journey we’re all in together.
AliceJuly 17, 2008 at 2:35 am #20904mybdmParticipant
I can relate to your message. The same thing happened to us on Friday while my husband was in the hospital for high ammonia levels and low blood pressure. His doctor does not want to continue chemo. He is now home and taking a strong laxative to reduce the ammonia and hopefully help his confusion. His bilirubin is up to 10 so he does not qualify for any trials. A hospice nurse is coming to assess him early next week.
BarbaraJuly 16, 2008 at 5:42 pm #20903jeffgMember
Alice, Jeff here again. I thought I might suggest you you click on Patient Support above ,then click on Ask Dr.Giles. He has answered a question similiar to your situation of what you might do. Maybe it will be of some help.
Jeff G.July 16, 2008 at 3:05 pm #20902karenParticipant
My heart goes out to John and you. How very upsetting to have the doctor tell you there are not more alternatives. My prayers to you both.
KarenJuly 16, 2008 at 1:14 pm #20901devoncatParticipant
I cant imagine how hard it must be for John to come to grips with. The two of you are in my prayers.
KrisJuly 16, 2008 at 3:37 am #20900wabalsMember
Do you have medicaid yet? If not tell the caseworker your story. I believe hospice will accept medicaid, but I am not sure. It is worth a shot. You are in my prayers.
AnneJuly 15, 2008 at 8:17 pm #20899
Thanks for the reply. John is very weak, his bili is 28.7 and he has lost 25 lbs. in two weeks, he is also experiencing shortness of breath and alot of clear flem. He sleeps most of the time. The doctor was telling us about hospice and John was falling asleep listening to him! His voice is very weak and thin sounding. His skin is tight to his bones and dry. I don’t think another opinion would be any different at this time. Besides that would mean MD Anderson and we can’t afford it. My boss’s mother just started hospice and she said it isn’t costing her anything but she has medicaire and a suppliment insurance so that would cover her. John’s afraid that hospice will come in and take over his disability income. That is what I am trying to find out to ease his mind.
AliceJuly 15, 2008 at 7:33 pm #20898marionsModerator
How is John feeling? Have you thought of gathering another opinion?
In re: to hospice: your primary care physician should be making this call on your behalf, to order the services.
Hospice, is in many instances although, not always, free of charge. You might want to get in touch with the local chapter in re: to this and continue calling around to find out if there is one close to you.
MarionsJuly 15, 2008 at 7:04 pm #1361
We just got home from the doctors office. It was not a good visit. He told John that he can not continue with any treatment at this point it will do more harm than good. He has strongly suggested hospice. John is having trouble getting around the idea that this is almost the end of the road. I think at this point hospice couldn’t hurt. I feel like I’m on a trapise wire without a life net under me. John is on medicaid spend down and he’s afraid hospice will take all of his disability check. At this point to me it doesn’t matter but it concerns him. I know all states are different, but does anyone know how hospice gets paid? He hasn’t worked in two years so his health insurance is long gone and with the exception of a monthly disability check he has no other income or assets. I have a call into his medicaid case worker but who knows when I’ll get a call back. Any advice or shared experiences would help me help him decide the best corse of action.
Thanks to all,
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