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.

Changing Home Nursing Agency

This past Thursday morning we received a phone call from the Home Nursing Agency telling us that they had fired my nurse. I was so happy I think I would have danced if I could have gotten out of my wheelchair. When the agency asked about sending a replacement nurse we told them not to bother. I really wasn’t up to training yet another nurse and P is on vacation this week so there really isn’t the need for help this week.

Because of all the problems we have had with this Home Nursing Agency these past 4 weeks while I have been on the IV antibiotic, which is the time we really need the services, we have decided to change back to the original Hospital Home Health intermittent skilled nursing service. The hospital does not provide private duty nurses to stay with me, but we have hired a young lady from our church to come in for a couple of hours to help with my lunches, cleaning my trach, and doing light housekeeping such as changing my bedding.

Now that we have experienced both types of nursing services we feel, that at this time, having intermittent skilled nursing services and having some help during the middle of the day is the best solution. P and I both agree that having a Home Nursing Agency provide a private duty nurse during the hours P is at work has been an important learning experience. Should I need a private duty nurse in the future, we now have experience and will ask more pointed questions about exactly what services the agency provides.

As with everything in life we have learn a lot from this experience.

What a Month

Earlier this month my doctor decided the time had arrived to put me on a much stronger IV antibiotic then he has been using to treat a stubborn infection. On Friday June 4, 2010 he admitted me to a local hospital; see my blog Note to Self. That just seemed to place the month on a busy footing.

This past Tuesday I had a doctor appointment and the doctor decided to keep me on the IV antibiotic for 14 more days. So then there were phone calls to the nursing organization and pharmacy that is supplying the IV antibiotic. This change necessitated additional blood work ½ hour before starting the IV and ½ hour after the IV finished. In the state I live in the law is that when an in home patient has a PICC only a Registered Nurse, patient or patient family can administer the IV or do blood draws using the PICC.

Yesterday morning, the Home Nursing Agency’s RN called and told me that she was on her way because my doctor had ordered a stat blood draw for the morning to insure that he receive the results while he was still in the his office. Once the RN arrived she insisted that I was to receive my IV antibiotic after she did the blood draw. I mentioned to her that when I had asked the doctor about moving my IV time from 4:30 – 5:00 PM to 8:30 – 9:00 AM, he told me that in order to safely do that he would have to order a couple of half doses. I questioned the nurse about the safety of repeating a full dose so soon after my last full dose, especially after my doctor told me different. The nurse told me this was what the new orders they had received from my doctor said to do and brushed my concerns aside, drew the before blood draw and started the IV.

Late yesterday afternoon, I received a phone call from the Home Nursing Agency nursing supervisor telling me that the first blood draw’s results were normal. The nurse also told me that they had not understood what my doctor was actually ordering and that my IV should still be at the 4:30 – 5:00 PM time. I do not know what the results of changing my IV time will be; I hope this doesn’t increase the treatment time.

This morning I received a phone call from the Home Nursing agency nursing supervisor telling me that the second blood draw, testing for Peak level of the antibiotic in my system was rather high. I told the nurse “Of course it is. The RN gave me a full dose of the antibiotic 15 hours after my last full dose.” I then called the pharmacy to alert them to what had happened. I wanted them to know that there was a reason for the huge increase in the IV levels in my system. Now I am worried that when my doctor receives the test results, he will want to once again lower the dose. I would call his office except today is his day off and I don’t want bother him. Hopefully if he questions the results someone will explain to him what happened. If he wants to lower the IV dose, I am going to have to call his office making certain that he has the complete story.

I believe the time has come to replace this Home Nursing Agency. I no longer feel safe in their care. I never had that concern with the first nurse Chuck. However, with this new LPN home nurse and with the new visiting RN, I no longer have any confidence in them.

The Argument About Harry and Tom

Yesterday afternoon my niece M. and her husband T. and girls C. and K. stopped for a visit. They were on the second day of their vacation to visit my niece B. M’s sister in Michigan. The girls ages 8 and 5 reminded me of when our kids were that age. They are full of curiosity about many things.

This morning I showed them the book I wrote about Harry and Tom the Michigan black bears who live in their underground house by the trees in our back yard.

After breakfast they sat on my bed and C read a couple of chapters to her younger sister K. After reading a couple of chapters, C was tired of reading. I must say that for an 8 year old she reads well.


Later in the morning the girl’s mother started a Veggie Tales video on my TV and the girls sat on my bed and watched the entire show. I must admit that I was so exhausted I slept through part of it.


When was time for them to leave and head to their next stop on their vacation, the two girls came into my room and the oldest C told me that she knows that Harry and Tom aren’t real. However, the youngest told me that she knows that they are real. I told her that if they would come in the winter time, I would show her the smoke that comes out of Harry and Tom’s underground house’s chimney. I didn’t tell her that it really isn’t smoke rather it is the steam from the storm sewer.

I found it refreshing to see the world through the eyes of these two girls.

Note To Self

I think I’ve learned something over these past several days and as a result will make this note to myself. “Don’t start this type of hospital stay on a Friday afternoon.”

For about 8 or 9 weeks, I have been fighting a Urinary Tract Infection. My doctor would have a culture showing the infection was sensitive to one antibiotic so he would place me on that antibiotic and three to five days after I finished it I would take another sample which the laboratory would culture to see if the infection was gone and if not what antibiotic it was sensitive to. This cycle went on as I have said for 8 or 9 weeks. This past Friday afternoon my doctor decided the time had arrived for placing me on an IV antibiotic.

I was admitted to a local hospital at 2:30 Friday afternoon and taken to a Medicine Surgery or Med/Surg room. However, once there and the nurses discovered I was on a ventilator, the Med/Surg nurses didn’t feel comfortable caring for me because of my being on a ventilator. By the time everything was figured out and I was brought down to the ICU floor it was past 5 PM. Because of the hour and it being Friday all of the people who would normally take care of arranging with my nursing agency and with a local home pharmacy making certain I would receive everything I would need to administer the IV antibiotic once I was discharged had gone home for the weekend. So the ICU nurse in charge of my care spent most of Saturday and Sunday morning arranging everything and I was discharge at 2:30 Sunday afternoon.

My wife P also spent most of the weekend talking to the nursing agency and to the local home pharmacy’s Indianapolis office, which covered for the local branch on the weekends. However, on Monday morning we found out that everything we thought was arranged and in place was not in place. The pharmacy had questions about the method, using a Peripheral Intravenous Line (PIV), for the length of time my doctor ordered. The pharmacy also requires a blood test every 3rd day I am on this antibiotic to check that the dose is actually the correct dose. Also the doctor requires a different blood test every 3rd day to check on my liver functions. It turns out that while this drug is a powerful antibiotic, it also can cause serious side effects. Because of all of these blood draws and the fact that the PIV would have to be moved every 3rd day, the doctor has decided that I will need to have a Peripherally Inserted Central Catheter (PICC) line inserted today. I need to be at another local hospital at noon for a scheduled 2:00 PM procedure to insert the PICC.

Yesterday evening P told me that when the number of phone calls reached 20 she stopped counting the number of phone calls she either received or made about this yesterday. If this wasn’t enough busyness, the nursing agency had to send out a supervisor nurse to reinstate me as their patient because my hospital stay had been longer than 24 hours. The nursing agency told me that the supervisor nurse would have to come and complete all the paper work before my new nurse would be allowed to come, my other nurse has taken a job somewhere else. Finally at 11:30 my new nurse arrived. Unfortunately by this time it was too late for P to show the new nurse what and how I like my lunches. Now with my entire schedule all out of sequence the afternoon began. Around mid afternoon, the nurse and I managed to get my shower out of the way which was a good thing because shortly after I was back settled in front of my computer a huge box of IV Antibiotic supplies arrived.

For the second time the supervisor nurse arrived to start my PIV and to begin my first dose of antibiotic. It took about 45 minutes to get everything set up before starting the IV which takes one hour to finish. By the time the antibiotic was finished and I completed my last nebulizer treatment of the day I was exhausted and ready to go to bed.

After spending such a busy day, I spent a relaxing evening watching some TV shows and visiting with my sister N, who with her family, is visiting. However, with all that is going on with my health situation, I haven’t had much time or energy to visit.

Then to top it all off, I couldn’t sleep last night. Every time I would fall asleep I would wake up about 10 minutes later. Then I would start thinking about the past couple of busy days, thinking about having to get use to a new home nurse, wondering how many things I would have to change, wondering if this nurse would be easy to get along with, and wondering how I would react if she made suggestions that I disagreed with. Finally in the early morning hours I managed to get about 2 ½ hours of sleep. However, now in the light of day, I am certain that all of my concerns will turn out to be of no concern.

So as I said at the beginning “Don’t start this type of hospital stay on a Friday afternoon.”