Returning back to the ward was not a place I wanted to be. I wanted, needed to be strong to be able to ask my Consultant the questions that needed some serious answers. Trying to do that febrile, shaking, aching all over with a pounding headache wasn't the way to go.
My veins were still all collapsed from my last lengthy admission, and dehydration. When the E.D doc downstairs started looking at my neck veins for a neck insertion I hastily looked around for a fast exit. Thank god after many failed attempts, finally they got a tiny wee vein in my hand. That soon blew up though due to a unforeseen reaction to morphine. My hand blew up, and had some nice looking uticaria happening. Shit I thought please don have now an allergy from morphine. It seems when I'm septic or sick, my body reacts inappropriately to alot of things. I cant drink alcohol because half a glass sends me on my arse not pretty. If I want to have fun its purely self induced, on a natural high. Safer I suppose:)
Over the next few days I healed. I briefly saw my Consultant and tried to ask the questions I needed asked. It didn't happen. She made a wise decision to only speak to me when I was well. Damn I really didn't know when I would be well enough to face her. I was disheartened, physically and emotionally exhausted. A couple of months had passed since the surgery. I really found it hard to see the end of the road. My bowels were also still playing up at intervals. But most importantly I was getting renal reflux pain. It was like a crushing band around my upper abdomen through to my back. It would literally take my breath away at times. the urine would back up causing thus pain. While admitted I was catheterised for a short time, through the stoma to give my bladder a break. The catheter blocked up due to increased mucus.
At 800mls I was screaming. The pain gradually built up in waves, until BANG suddenly I couldn't take a breath. I gasped and breathed between what felt like intense contractions. I had experienced this type of pain before since I had the operation. Mostly at lower levels of urine, and normally after eating. This was very confusing as it could have easily been mistaken for my bowels. The difference was though when it got 800mls the internal pressure expelled the urine back out into the catheter bag. It most probably filled up quite quickly due to the amount of fluids that had been pushed through to clear out the infection.
With multiple intravenous anti-biotics, fluids, Panadol and rest, I healed. I had a C.T scan which showed up my rapidly filling bladder at the time, and (as I was told much much later) a cystic thing on my kidney, probably caused by the infection.
As usual the majority of the nurses were fantastic. A great eclectic bunch of women. I know that during that stay I was not an easy patient. Instead of focusing solely on healing physically, my time was monopolised with thoughts of answers. If my Consultant had made a mistake that was forgivable. Doctors are only human. People make mistakes in life all the time. As my country doesn't sue, we have a different system. I didn't want to jump on the band wagon there I just wanted an explanation. I wanted to hear the truth. I was tired of being told different stories, excuses, or not heard and completely brushed off. All I wanted was "This is what happened, and this is what the future brings. I got nothing, nada. I felt as though I was being treated like an idiot. I had a medical background with people, and animals. I was married to a doctor for 7 years. I learned alot. You do learn alot when you are assisting your partner in studying, and work related stuff for all those years. But for some stupid reason, no one wanted to talk to me.
Finally after a difficult admission I got to speak to the Consultant. My heart was heavy with mixed emotions. Anger at the forefront. Sadness as I spent several years trusting my Consultant, I had belief, and trust. That relationship had gone. I was also incredibly scared.
My questions were. Why was I told different stories when my leg was paralysed, and if it wasn't the spinal, then why was I refused one for the second operation? What part of my intestine had been taken and used? As it didn't appear I had a valve to stop leakage in my new bladder? Why was I left for nearly two weeks with a bowel obstruction when the C.T scan had shown 7 days earlier that I had a bowel obstruction? I believed I was going to die, I was vomiting faeces from four days post original operation.
Why was I operated on with a belly full of faeces? When would the leaking stop? Why was I told and bullied to eat when I should have been nil by mouth? Well i got to ask a question or two before The consultant went off. We were in the ward, and the Consultant yelled, and I ended up yelling. I got no answers and a whole heap of denial. I wasn't going to lie down this time and take the consultants shit. I finally didn't feel so afraid. The whole ward heard us. I was beyond caring. Other things had happened on this admission also. I wanted to stop it all. I had told the nurses the night before that their was no point in me catheterising. It was very painful and bleeding in the bladder, and it leaked all the time anyway. My morale was low. When I asked The Consultant if my kidneys would be o.k from all the urine backing up periodically, she replied no. My kidneys should be fine. When I mentioned that I wasn't going to catheterise any more as it leaked out filling my stoma bags anyway, and the pain was unbearable as the inside was so raw (from infection).
She went off at me again stating I would go into renal failure. Nice. crap i was in a rock and hard place. I had to catheterise. It meant for me constant irrigation also. Well as predicted I got nowhere that day. My discharge report was like my other discharge reports from the hospital. Rubbish from A-Z. It would be the 3rd report in a row that needed amending due to incorrect information. This really scared me. If they couldn't get the paper work right what chance did I have at survival? This wasn't the first time that my notes had been wrongly written. Wrong notes mean wrong judgement. Wrong judgement means wrong diagnosis. I had in my possession my first discharge notes stating bowel obstruction seen on C.T. Amongst other things to be amended, this statement was also amended. My fixed up discharge report read now that bowel obstruction wasn't seen on C.T in my first admission?
W.T.F I was rapidly losing my faith in my Consultant and medical team. Anything they said to me came from the Consultant. It wasn't their fault to always give me bad or no news, or excuses. But who else could I turn to? I had no partner for support or advocacy at my worst times. Nor were my family their to advocate. I wasnt going to lean on my friend Fi, she had done more than enough. I also didn't want to bother my other friends. Things were getting really desperate. They required desperate mesures. This was my body, if the people that were supposed to care didn't, then I could only help myself. I want to see my kids grow up, I had things to do. Even though at times I felt like giving up, I knew deep down I couldn't. I didn't feel I wanted to change Doctors as all the Consultants worked together in the private and public systems. Our City isnt as large as some cities are. Going up North wasn't an option for another opinion. I was trapped in a system with little options.
I know they have their problems in America with the health system. Namely insurance companies and suing etc. We have a free system. Generally we are very lucky to have this system. You don't get thrown on the street We still have horrendous waiting times, staff shortages, etc. But in comparison to what is going on in other countries we generally are fortunate. Its just an awful feeling to start to believe that your Doctor doesn't care. Should have I became a nice compliant patient who gave up, and got all depressed for the sake of ego? Or should I fight for my rights, my rights for care and honest treatment?
It took a while for me to make a decision there....