Tuesday, June 29, 2010

How I Feel

Last Thursday I had a sputum sample taken for culturing and yesterday my Pulmonologist called to tell me that I now have a lung infection. She did mention that the bacteria is sensitive to the same IV antibiotic I am currently on for the UTI and Prostatitis I have been fighting for the past 9 weeks. So my Pulmonologist and Internist, who work in the same medical clinic had a meeting of the minds and decided to allow me to complete the current course of IV antibiotic treatment which is finished tomorrow and then after two days to take another urine and sputum samples for culturing. So by next week Tuesday my doctors will make a decision how to fight this new infection.

My mother had an uncle A. who had been in a farm accident and confined to a wheelchair. I may have mentioned Uncle A. before in this Blog. We would always visit Aunt H. and Uncle A. every time we went to Michigan. When visiting Uncle A. I would wonder how he must feel being stuck in a wheelchair and stuck in the house all the time. Of course a young boy hasn’t had enough life experiences to understand the frustrations and maybe anger Uncle A might have felt.

For most of my life, my mother suffered with paranoid schizophrenia. When I was living at home, I never thought much about how my mother must have suffered. Most of my thoughts, cares and concerns were focused on myself and my plans for my life. However, now with the eyes of someone who requires more and more care, I have turned my mind’s eye back toward my mother and uncle. I now have a much better understanding of how they may have felt being confined to either a wheelchair or a prisoner of their own mind.

For the past three and a half months, I have had a nurse from a Home Nursing Agency. The first three months were not bad; I had a male Registered Nurse (RN) as my nurse. However, when he took a job with a hospital, I was assigned a Licensed Practical Nurse (LPN) and I also was diagnosed with Prostatitis and had a Peripherally Inserted Central Catheter (PICC) in order receive the IV antibiotic and to make drawing blood easier.

It was this change in my health that really made me think about how trapped Uncle A. and my mother might have felt. Suddenly the nurses talked to P about me as if I wasn’t there. I also discovered how difficult it had become for me to take charge of my own health. The Home Nursing Agency made decisions about where to bring blood draws for testing. When I suggested they bring it to the clinic where my doctors practiced, they wouldn’t acknowledge that I had even talked to them. They would take the blood draws to any number of different locations. Now I am receiving phone calls from these different places asking for insurance information. Even though the Home Nursing Agency said they would take care of providing that information. Then my doctor and the pharmacy would not receive the results in a timely manner, so P would spent time while at work trying to find out which lab had my latest blood draw and what the results were. Because of the extremely poor service I received from the Home Nursing Agency, I made the decision to return the hospital based home care I had been receiving before changing to the Home Nursing Agency that was providing the 8 hour a day care I currently receive. My doctor told us that he didn’t want me to change health providers in the middle of treatment. I understand why he didn’t want to have write new orders for the new home care and why it might not be wise to change in the middle of a course of treatment. But the Home Nursing Agency we currently are using is making mistakes, not following or not understanding doctor orders, not answering me when I question them about what I consider errors, and which I later find out to be errors. I now feel trapped in a situation I don’t seem to have any control over.

It’s this feeling of loss of control that bothers me the most. I wonder how Uncle A. and Mom felt about the loss of control of their life. I know how I reacted to this feeling. The other day when my pulmonologist ordered a sputum culture and the Home Nursing Agency responded by telling the doctor that they didn’t have the necessary sputum collection container, I just lost it. I called the home agency and started yelling at the first person who answered the phone. I continued my rant until I was transferred to the office manager. It took a lot of talking on his part to calm me down. I did tell him that when two of their nursing supervisors had proved to be completely useless when it came to sourcing items, items that the hospital based home care always seemed to have with them, I had gone on the internet and found sources myself. I also mentioned to him that I wondered about the statements his nursing supervisor made when she first came and talked to us about having them provide home care services. I accused him and his people of being nothing more than liars saying anything to get a new client and then doing none of the things they promised once we were trapped with their services.

At this time in my disease, I have such a feeling of helplessness, such a feeling that I have lost an important battle, the battle of control over my freedom, and such a feeling of not being able to regain control. Of course as I always tell people that I am certain that things will get better, they always do.


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