Post Edited (writeleft) : 9/25/2008 10:48:04 PM (GMT-6)
Thank you...This feels like home. What a warm, loving reception as I enter your group. I feel immediate comfort, in what has been a short, but very painful reality.
Yes, I have read the post's. I greatly appreciate them. The truth hurts very deeply. But, much like the other folks before me, I also HAVE to know whatever I can... I knew the end was near, but it now appears to be happening sooner, rather than later. Infection has set it. I have been monitoring it's progress by marking the edge of the red hot infection, and it is spreading. The saddest part of all is that he has no medical insurance, no income, and hasn't for the last few years. He has been living on a couch with two friends throughout this whole thing. Three of us have been pitching in for his visits at the local clinic, and getting him to and from, his food, etc. He has lost contact with his family, including two brothers and three children, so it's just us. His mind, which was a fortress of incredible knowledge and musical genius, has been gone for a long time. He has such a struggle trying to get through the E.R. due to being indigent, and he definatly gets minimal treatment and released. I can hardly blame him for not wanting to go. Thak you for listening.
WriteLeft, welcome. I am suggesting the same thing as Mer. For approximately 10 years I had no medical insurance, after my husband and I split and I was only able to work P/T. All during that time, I received my care at a teaching hospital locally, including bilateral hip replacements. The care wasn't the best, but better than nothing and I was able to walk again. I'm now getting GREAT care at Mayo with Medicare, but also am subsidized by their charity program for whatever Medicare doesn't cover. Check with local hospitals and see if they have charity programs for very ill patients.
When your friend went to the ER, did they give him an Rx for an antibiotic? I suspect that the ascites (fluid in his belly) has become infected, or perhaps bacteria was introduced to his abdomen when he received the paracentesis. At any rate, even if he is near death, he certainly should have palliative care and not made to suffer. Try to pin a doctor down, next time he sees one, as to approximately how long he has left. If 6 mos. or less, then Hospice can get involved--if there are no treatments given, and that may include paracentesis, not sure. Has your friend tried to get SSI or Medicaid? It seems to me that he certainly qualifies at this point. Someone else can act on his behalf in doing the phone interview or paperwork.
It is good of you and the others to care enough to try to help him.
Post Edited (hep93) : 9/27/2008 2:05:56 PM (GMT-6)
Hello I am sorry your friend is so ill. I agree with everyone before my reply but also want to add that every hospital has a social worker that can help get state funded insurance as your friend is DISABLED and cannot work. Also try for Social security disability if time is short for him I know every state is different but they all do have some form of Medicaid and teaching hospitals can be a good alternative, any hospital that accepts state or federal money in any way is obligated to treat him. Private hospital can refuse to give any care beyond getting him stable. What state are you in. Some states also consider over 55 eligable for elder services.
To each of you who have responded to my post, I am so grateful. Just to know you are there is such a relief! You have asked me a few questions which I would like to answer...
Yes, writeleft does mean that I am left handed. I'm also the mother of two beautiful sons, one 24 and one 14. I have a prince of a husband, and two great dogs. I have had my own life threatening battle with malignant hypertension, 4 strokes, kidney failure, heart attack, on and on..(at the age of 43). I am about 5 years past the strokes, and going strong! In the first year following, it was my friend Bruce who came everyday to watch over me, since I was bedridden, and my husband had to work. So, it's just natural that I am here for Bruce now.
Med-i-cal, CMS (County Medical Services) and Social Security disability have all been applied for, but still weeks or month's away. I only hope he can make it long enough.
Following parasentisis he was not given antibiotics, but we were warned about the high chance of infection...Hmmm, that's something I didn't think to ask for at the time. Uggg
I have asked dr's and nurses how long he has, and I haven't gotten a verbal answer. Instead they give me that sad knowing look, and shake their heads.
Hospice is a suggestion I will look into right away, thank you..
I hope I answered all of your questions, and look forward to learning more of your experiences. I feel so relieved just to have found this board, you have helped immensly already.
WriteLeft, thanks for your reply. If there have been any changes since SSD was applied for, those medical records should be sent to them immediately--for example, the frequent paracentesis. I agree with Mer that you (or someone else who knows your friend well and is trying to help him) need to have him sign a Medical Surrogate form giving that person the right to make medical decisions. Does he have a Living Will? If not, he needs one. Before things get worse and he starts to have confusion from encephalopathy, these things should be done.
You have been through such a lot yourself. I am glad you are doing well now.
A few days have passed now, Bruce is still hospitalized. While he has been there, his two "roommates" have decided they do not want him to come back. The hospital staff has told me that his release would likely be to a nursing home, which upon deeper investigation turns out to be the county indigent care facility. It is located very far from our area, and to my understanding is the true end of the road for it's inhabitants.
writeleft, please look into a halfway house his chances would be better if he becomes fairly capable of participating in his own care..... those indigant care places are not the place to be! He might be better off in a hospice care facility if he cant get a transplant. I so feel your pain dealing with this.