I have not blogged for a while as there are just so many different bad things happening, and I am constantly wondering how did I deserve to have to live this way?
I went last Monday for my first supra pubic catheter change and all seemed to go well, although it was very painful. My urologist changed the catheter, then had me take one dose of Macrodanten as a precaution to avoid infection. My appt. was later in the afternoon so I came home afterwards, ate dinner and went to bed a bit early.
Tuesday I did not wake up until almost 1pm, and was not feeling well at all. I was super hot and for some reason could not wake up. I was having chills and sweats and was so so tired, and had so much pain in my back all the way down to my feet. I could not wake up or get out of bed so I layed there all day, just sleeping, ignoring the phone that I kept hearing ring all day long. Well not really ignoring it, but just did not feel able to get up and answer it. It was like I was helpless to even lift my body off the bed. The only thing I did get up for was to empty my catheter and went right back to bed and sleep. I had no idea what was wrong with me, but something was not right.
Every joint in my body from the waist down was hurting, and my chest felt very heavy. So I just slept all day. When my husband came home he was beside himself with worry, as he normally calls many times during the day to check up on me, as well as my daughter, she does the same thing. I know I am a big worry for them and I hate that. I wish I could be the way I was before this surgery that has destroyed who I was, but I know that this is what my life has become. Anyways when my husband got home and found me still in bed asleep in my pajamas, he was very worried. He then took my temprature and found it was 104 and freaked out. He wanted to take me to the ER but I refused, I was very combative to try and get up. I think it was that the fever had me so out of it I could not think clearly.
He put up with that for a while, trying to force me to take sips of liquids, but I could not even take a drink of anything as I was too out of it and too weak. he kept trying to wake me up to no avail. I feel so bad now what I put him through because he stayed up all night long, sitting next to me wide awake watching me just to make sure I stayed alive. He left the next morning as soon as the infectious doctor was open and took them a sample of my urine which was full of blood. There was no infection showing in it, but they told him to get me there ASAP. He came home and it probably took him an hour just to force me to get up and get me in the car. I did not even have the energy to get dressed so he just took me in my PJ's and went. I had slept at this point for around 36 hours straight, as well as all the way to the docs.
Once I got to the doctors office, they determined I was completely dehydrated and in pretty bad shape. They tried putting an IV in me to give me fluids, but it must have taken them around 5 or 6 times poking in different areas just to get a needle in me, as that is how bad the dehydration was. Finally they got one in and started a bag of fluids on me. They also took many vials of blood for tests. Once that bag was done, they gave me a bag of Gentamicin antibiotics through the IV, then another bag of fluids. I was basically getting all the care there that I would have gotten in the hospital. If I had not agreed to all of this, they said I would need to go back in the hospital like last august and that was the last place I wanted to be. So I spent the whole day in their office hooked up to an IV. They also gave me a shot for all the pain I was experiencing in all my joints. I slept through the whole thing and was really out of it still. I still could not stay awake because I was so sick.
Finally at the end of the day they had my husband take me home with the IV needle still in my arm, making me promise to come back the next day, for more. So I went home and again went right back to sleep, and slept through the whole night again from the time I got home. I went back the next morning, and they did a flu test, which was negative, so it came down to something to do with the catheter change I had on Monday, as that night is when this whole thing started. As I started talking to the doctor, we tried to figure out what it could have been that caused all of this. The only thing in common with this reaction and the reaction that put me in the hospital with sepsis last august was that I was given Macrodantin. I had only one pill but my doctor thinks that this might have been it. They still dont know, but it had something to do with the suprapubic change because I was perfectly fine before my appt. Monday for the catheter change, and I have to say that I am very very scared. It was some kind of very scary reaction to something.
Before that surgery of January 05, I rarely got sick, and almost never had any kind of infection for years. I got a cold probably once every couple years like normal people. Regular stuff that regular people get. I am no longer regular since that life changing surgery that has damaged me to a point that I question, if one of these times, one of these things is going to kill me. In the shape I was in when my husband first found me Tuesday afternoon after he got off of work, I would have laid there and died because my brain was not thinking properly due to the high temperature and that is extremely scary.
I am just now finally starting to feel a little better, and I am so tired of going through all of this. Its very depressing to know that I wont ever be me again. The me that spent time with my family and did things like everyone else, the me that did not worry about getting sick all the time as it happened very rarely, years between colds and such, or ending up in the hospital or dead. I know this now, that I will never ever be that person again, and I hate that doctor for making me this way. He sleeps fine at night I am sure, because he does not have a tube sticking out of his pelvis to empty his bladder, he does not have to empty his bowels with his fingers, digging everything out, he does not have the nerve and muscle pain I have 24/7, he gets to enjoy his life and his family with no worries what tomorrow will bring or if there will even be a tomorrow. It gets hard to know this and still go on, knowing I will never be me again,.
So now I am afraid of my next catheter change, that will be the beginning of next month. I also have to have a colonoscopy three days before that, and go back for a check up with the infectious disease doc the same week, as well as go to my pain management doctor that week. I actually have to go see him monthly too, just like the urologist for changing the suprapubic catheter. My life revolves around doctors and staying alive all thanks to that surgery from January 05. Most of my friends don't even call anymore because I think its too depressing for them too and I don't blame them. I would probably feel the same way. The hardest thing is feeling the fear each day of what will happen, and also seeing the fear in my husbands eyes all the time wondering if he will have a wife. I constantly find myself apologizing to everyone for not being who I used to be, or for what I am going through at the time, but then I get mad because why should I be apologizing anyways? This was not my fault, it was that doctor that did this to me, its his fault but he does not have to live each day with it. Only I do and that is what is so wrong with this whole situation.
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