Wow where do I even start with this one? So much has happened since my last blog, its unbelievable.
I guess I will continue from the last date of my last post which was August 26th. That day is where it got really really bad to worse. After I wrote that blog, my pain was getting much worse, the hot and cold chills got way worse, my blood pressure dropped down to around 70/47, my temp went up to 104, and well lets just say it got very very scary.
By the time my husband got home from work I was very frightened and did not have any idea what was happening to my body, so I had him take me to the emergency room as quickly as possible. I was afraid my system was shutting down, and really for the first time since I had been home from that surgery that caused this I really felt in fear for my life.
Once I got to the ER, they confirmed that my temp was super high and blood pressure super low. They said it was the bladder infection spreading through my body. The first thing they did was insert an iv and give me a antibiotic that I had had before which was rosephin. I had had this one before with no problems. You see there are quite a few I am allergic too and have been sent in to Anaphylaxis shock, but I knew, at least from past experience that this one was safe for me. So they inserted the iv and started the iv bag of rosephin lo and behold I start to itch within seconds, next up within probably a minute hives started to break out on my whole body, within probably 2 to 3 minutes I started having very bad difficulty breathing. It was very apparent that this antibiotic was no longer safe for me. I had thought that the difficulty breathing was being caused by my breathing tubes swelling shut as has happened in the past with allergic reactions from drugs. Well I was to find out later that for some reason this time, my lungs started filling with fluid. and this was my beginning of my fight for my life.
They immediately injected benedryl which the first injection had no effect so they than did a second injection which was much stronger and seemed to work. It was very strange at that point, as I started going into a different place and then coming back, yelling strange things to my husband, which he had no idea what I was talking about and eventually just quit trying to explain to him what was happening. all I know is that it was a very very scary situation.
Next thing I remember was being in a hospital room, where they were making me lay flat on my back because my blood pressure was so low and they were afraid that if I even was elevated at all, it could cause a stroke. My fever would not go down, my blood pressure would not come up, and I had the worst pain in the world. I was so cold that my teeth just kept chattering and I could not stop it. They would not let me have blankets because they said that if I covered up to much it would only make the fever continue. I had no idea what had happened to me and was very scared for my life.
The next day, as I started seeing doctors and getting some explanations, it seems that the infection from my bladder had moved into my blood stream and had started attacking all my body systems. which explains why it was affecting my blood pressure and everything else, as it was attacking all of my bodily systems. They tried many different antibiotics, and started to get some idea of what would work. I had developed pneumonia from the allergic reaction in the ER and my lungs had filled quickly with fluid, so now not only was I on antibiotics, but I was getting shots of heparin in my stomach to make sure I got no blood clots to my lungs, I was getting breathing treatments every few hours to try and reduce the fluid buildup in my lungs, and of course the antibiotics for the original infection that started in my bladder but had spread to my blood stream.
I had thought what I was living with since that fateful surgery of January 5th that caused the CES, I had some control over. This Night changed that thinking all together. It made me realize that nothing is in control, and I have no idea what will happen next, which is the most scary thing of all. I am now working with an infectious disease doctor as well as the urologist, to track this infection problem of my paralyzed bladder, since it seems that the particular bacteria I have does not ever really go away, but now will need to be controlled forever. This is my understanding, and I may not be 100% correct in the way I have worded this all, but it should be pretty close. Remember I am not a doctor, just an average woman living with the damage that was caused to me by this tarlov surgery, which I feel now should have never been done had the surgeon been honest with me to begin with. So I finally got out of the hospital Tuesday after noon after spending six days in the hospital, which has put my new therapy on hold for the moment as obviously I have much bigger things to worry about right now.
I am still very sick at home, still on antibiotics, which I am being told will be for life and will have to counter act those by adding probiotics now as well to all the other meds
Ok well I as super tired and need to do a breathing treatment and get some sleep. I will continue this blog entry tomorrow when I have more energy. I was not really up to writing this now but felt it was very important to get out there, just so those that are thinking of having tarlov surgery an think they have a a surgeon they can trust may think twice. Believe me, you do not want to be where I am. Like I have said time and time again, If only I could go back and make sure the doctor was a trustworthy doctor, I would not be here writing this today. Think, think really hard, and don't believe you know everything, or are smarter then I was, or trust someone just because they have a good bedside manner. Really really take this seriously, remember your life depends on it.
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