Why Are Things So Hard?

I am starting writing this on Sunday the 13th of July, but don’t know when I will get finished with it.

It seems that everyday life for me just keeps getting more and more difficult. The more I want life to get better so I can have my surgery, and really start feeling better, the worse it gets. In my goal to get to 200, I was losing, and down to 241. Not two weeks later, and I’m up to 248.6. I have been so depressed since weighing myself, I don’t know what to do. Some days, it’s like, “What’s the use?”

I have been having so much trouble with my bladder, it’s just not funny. On July 8th, I was bleeding around the catheter so badly that it saturated a 5″ x 9″ ABD pad. It has bled many many times, but not as bad as on this day. I called the urologist office and made an emergency appointment to be seen. The appointment was made for Thursday morning the 10th of July at 9;40 AM. Come that morning, I was having diarrhea really bad. I called to cancel and was told the next available date was not until August the 14th. I tried to go, but didn’t even make it down the driveway before I had an accident on myself. Needless to say, I didn’t make it to the appointment. My abdomen was hurting, and my temp was 99.9. They told me that if I got to hurting any worse, and my temp got to 100.0 or higher, to go to the emergency room. Thankfully, with taking a lot of Imodium, I stopped the diarrhea. I was able to go to my appointment to have my port flushed. The port has to be flushed every 30 days to keep it from getting clogged up.

I told them that my primary care wants me to have the port removed, but isn’t going to give orders to have it done until after my bladder surgery. She had talked to the urology department, and they told her that they were going to give me IV antibiotics, before and after my surgery, at home, with home health nurses coming to assist me. I told the nurse how hard of a stick I am, and that I have to be taken to the emergency room quite often, and they almost always have to do blood tests and give me fluids through the port. I also told her that about a year ago, I had to have the IV antibiotics, off and on for about a year, at home for my bladder. Then I also told her that I have to be admitted to the hospital a lot, and the port is used then for blood tests and fluids also. The nurse told me that even though I don’t have a chronic illness like cancer or kidney failure, that require almost constant IV medications, if there was ever anybody that needed a port, I am that person. She asked me how long I have had the port, and I told her that the port was placed on July 7, 2009. She said that she doesn’t know of anybody that has had one that long that is doing as well as I am, and the port definitely should not be removed. The primary care is afraid that I will get an infection, and it will go straight to my heart. The only way to prevent that from happening is to have the port removed.  The port goes directly into my right jugular vein, therefore the problem. The nurse is an oncology nurse, and she feels that if I was going to have trouble, I would have had it long before now.

This day was, Tuesday the 8th, I also took a stool sample to the lab. The stool was formed. I was not told until today, July 17th, that the stool could not be formed. I know these are not pleasant topics to talk about, but they are my life, and if I am going to portray to you the struggles that I have just living from day to day with my medical conditions, then I have to talk about them. I have continued to have the diarrhea, and it’s explosive. It was when I called the doctor’s office to see if the test results had come back yet that I was told about the formed stool, and that the lab had discarded mine as soon as they saw that it was formed. They were testing for a disease called c-diff. C-diff is short for some really long disease name. I have a chronic form of it, and therefore have diarrhea most every day. To my knowledge from the first time I ever had it, to have it chronically was not possible. The first time I had it, I was going like 19 times an hour. I was hospitalized for 10 days. When they told me what I had, I was told that I could die within 10 days if the disease was not brought under control. Luckily for me it was brought under control within the first 7 days. After I was discharged from the hospital, I was admitted to a nursing home for 3 weeks to build my strength back up. Before they discharged me, they told me, “We brought you through it this time, and we might be able to bring you through it the next time, but after that we don’t know.” I asked what would happen if I got it a third time. The answer was, “We will keep you comfortable.”, and I asked “Then what?” Once again they told me that they would keep me comfortable, to which I asked again what would happen then. Their answer was, “Well, then you die.” Needless to say, I wasn’t any too happy with that answer. So according to that answer, I should have died years ago, because that is how long I have had it off and on. .  I guess you could say then that I am a living miracle twice over. Once for living past three years with the artificial bladder, and once for living with CHRONIC C-DIFF, because I should have died the third time that I contracted it. But today I have to take in another sample to see if I have it yet again.

The sleep study that I had Tuesday night showed the sleep apnea, hypopnea – when my oxygen level drops down really low, and restless legs – my legs were moving every 30 seconds, (at least one of them was). I definitely need another C-PAP machine. Mine is really messing up a lot, and not wanting to come on correctly. The results of the study will show that I need it.

This afternoon, July 17th I should find out the answer about the c-diff. I was able to take a sample from 10;15 AM to the lab, and it was checked in at 11:04 AM, so I made it within the 1 hour time limit to get the sample to the lab. The doctor’s office put a STAT order on it, so it will be processed quickly. That way the doctor will know before they close today. If the test is positive for c-diff, then the doctor’s office will call in the appropriate medication for me to start taking to get well, at least for a little while.

When I was on my way out the door, there was a station checking for stroke risk factors. I had so many, it was comical to me, and I stated laughing about it. At that point I told them I was in bad shape medically, but physically I was in good shape for the shape I was in. The laughter on my part continued, and they just looked at me strangely, and then said, “Well, at least you have a good attitude about all of it, and a good attitude could make the difference in staying alive and dying in a bad situation.”So apparently, I still have an upbeat attitude about everything that is going on right now. Hearing them compliment me about my attitude toward everything made me feel really good about how I am actually doing, as opposed to how I have thought that I was doing. Obviously, when I go outside my own home, I do an about face, and put on an upbeat demeanor around outside people. Quite frankly, I don’t know if that is a good thing, or a bad thing.There is hope against all hope that it is a good thing.

Well, that’s about all for now. Guess I’ll stop here. I will post again after I find out if I do have c-diff again, and let you know what they are going to do for me this time.