Feb 07, 2010 - 9:29 pm
My wife was diagnosed with Large B Cell Lymphoma, T Cell rich (90%) in November 09. Lymph nodes, spleen, chest, intestines, spine are all involved. She had spinal cord compression from large tumors in her spine and could not walk until she got radiation treatments. I suspect she has residual damage as she cannot walk without a walker and is constantly falling. No one seems to care or has even looked into this.
She received three weeks of radiation treatments and only a few days later started R-CHOP. She has been hospitalized for 60 days, four different hospitalizations since the end of November. We spent Thanksgiving, Christmas and New years in the hospital.
When we go to the oncologists office everyone else walks in with their own two feet yet she is in a wheelchar and has to lay down in bed for her chemo. She received countless blood transfusions, platelet infusions, had multiple infections, was in septic shock and it keeps getting worse. Now her blood pressure bottomed out to 90/50. Her doctor's consolation yesterday was that another patient around my wife's age (55) died last week and that patients like my wife are very ill.
Yet my wife is being denied social security disability benefits. According to them this is 100% curable and she should be able to work a desk job. This also disqualifies her for SSI. We are trying to live on 339.00 a month that we get from a state medicaid program so minimal resoucres at a time when we are so vulnerable and in need.
This has been such a rude awakening and I have become such an angry bitter person. We have had countless problems at one of the local hospitals, a verbally abusive physician, infected port with staph, clostridium difficile infections, multiple large bruises from nurses who have been in too much of a hurry to put pressure on her IV sites after putting in an IV (that they missed) or drawing blood). I really don't feel her oncologist is even advocating for her needs-he runs a large factory and his nurses develop an attitude when I advocate for my wife--they seem to be too busy. In fact everyone to date has been too busy to even notice that my wife is profoundly depressed or that she cannot walk. I had to ask for physical therapy. I am always having to push for and fight tooth and nail for every little thing she needs which should be very obvious to others but does not seem to be, because everyone is pushed to their limit and are over worked.
I cry every day because I am so disappointed in human kind. After this experience if I were to ever get a cancer diagnosis, no matter how high the cure rate, I would rather die than go through what we are going through.
We cannot get another doctor because we are in a small city and there is NO competition. The largest medical center is 4 hours away. The local hospital is so dysfunctional it isnt funny. My wife had a heart rythm distrubance because they gave her too many IV fluids, he had hospital acquired staph infections, decubitus ulcer because the staff never turned him, her food tray was never ever correct (gave her fresh fruit when she was neutrapenic etc )in the 60 days she was there. They were asked to do a 3 day calorie count and they couldnt even do that correctly. I know that if this is happening to her, it has to be happening to other patients. They have gotten away with so much for many many years because there has been no reason for them to change and no one has dared to challenge them since they are the only hospital in town. I plan to deal with them at a later date. I do not want to sue but I have taken photographs, notes, voice recordings and have enough to make Michael Moores movie SICKO pale in comparison to what I plan to expose. I don't have the energy to fight with anyone right now but when all is said and done, I will come out fighting very very hard and all of this wil be exposed on a national level.
I feel very alone in this fight. Nurses should be advocating for my wife's needs but they are not and if I ever ever ask for one tiny single little thing they become hostile. I have killed them with kindness and tried everything imaginable. The cancer itself wouldn't be so bad if it wasnt for having to deal with all of the this and the forms, and applications and government for social security disability and medicaid, SSI, forms, paperwork, charity applications, doctor visits, treatments.
We are constantly on the run. The staff at all of the different clinis and doctor's offices are so insensitive--they want us to run to their office AT THEIR PACE totally clueless to the fact that it takes my wife two hours to get ready and out the door. Then when she is there, they are always in a hurry running around. WE need to remain calm becuase we just had to run from place to place for this or that and we cannot afford nor cope with the extra drama they are bringing to our table and into our lives.
Anyone else have these problems? Is it me? I tried to find a social worker to help us but they also do not have the time to help and everyone keeps pushing me off to someone else