double neophrectomy and recouperation

I had double nephrectomy on 2/11/11. I was very much ready for htis and very keen to get kidneys removed to possible cancer scare. ( nothng to worry about as received confrimation that cancer free) The operation should have lasted 7-8 hours but was completed in 5.  My surgeon said it was a 'dream' operation.  I had a fixed epidural for pain relief but feel like this was a massive mistake.  I think I am one of the patients that it doesn't really take on as the surgeon came to see me to establish whether the pain blocker had worked whilst I was still in recoveyr on day 1.  Although there were small areas of numbness they were surprised that I could move my legs and feet and certain areas of my abdomen could feel the pain.  The felt happy that this was enough so I did not argue.  I couldn't move to adjust my resting position as I had been cut from my left side all around the curve of my rib cage to the right- basically cut in half- 80 staples in all- so you can imagine my wound and pain.  I also had side symptoms caused by my huge polycystic liver and deformed diaphragm which had caused me much difficulty breathing and for last two years have had to sleep propped up in bed.  The ICU nurses seemed to be unaware of this background information and were just treating me for my surgical recovery.  I had a tough time with them trying to get them to understand that they must not lower my bed but unfortunately on 3 separate occasions i2 2 days they continued to lower it despite me telling them not to and this resulted in me having 3 massive panic attacks where I felt I was going to die.  My inhaling and exhaling were difficult and I was making noises like someone at the end of their life.  They did nothing to help me just kept saying take slow deep breaths.  Obviously this was difficult as I was in so much pain and distress and was holding myslef up, although very weak, so as not to lie flat on the bed.  It took a few daysand a visit from mysdurgeon and renal specialists for this to sink in and I finally only settled when they moved me onto a renal high dependency ward where they fully understood my condition and side symptoms.
Any way during the operation I had 2 transfusions which I am not ahppy about as it amkes it much harder to get a transplant but they did advise me beforehand that they would only do this if it became life threatening.  On post op day 3 I had another 2 tranfusions after I passed out- the levels at that time were 5.2 whih I know is life threatening s again they had no choice.
a serious incident happened on day 2 of my recovery and other than the serious fluid bloating and pain I felt okay.  I will not go into detail but I witnessed a nurse who seemed to be messing about with a camera taking inappropriate photos of patients.  I confronted them immediately about this and they all denied it and stuck up for one another.  I then feel that some things happened that night which were prepared to make me think I was having hallucinations- not sure if they enhanced any of my drugs to put me in this hallucinatory state but by day 3 I was having proper hallucinations and were convinced the nurses were all in on it and whilst I dd not think they were deliberately trying to kill me I felt they were prepared to take steps to avoid me causing negative attention.  Due to the stressful state I was I know I came very close to death as they could not dialysise me and my toxic levels were way beyond acceptable.  My BP dropped seriously low and I had to have quite a few adrenalin shots.  I played along with the nurse faking my recovery from hallucinations and pushed my exercises so hard just to get downgraded to high dependency unit and different set of nurses.  I caused a lot of stress and anxiety for my family also as they wereworried if I was telling the truth and were worried if I was hallucinating.  I tried ripping all my tubes, tried getting the police to come and slo rang my husband to come and sit with me a few times early hours of the morning.  He wasn't pleased about this but this was the only way I could get through the nights sometimes, knowing he was watching over me.
Anyway probably about day 5 they moved me onto renal high dependency unti and on this ward I trusted al the nurses, so began to eat and sleep.  It was so much calmer and they seemed really focused on getting my excrutiating pain under ontrol.  They managed to this toa very good level providing I didn't move with extra morphine shots with maximum paracetamol thrown in.  They also gave me anti sickness injections before hte dialysis sessions which began on day 7. I stayed on this ward for about 5 days and cannot say how good these nurses were to me. They helped me with my physio by timing my medications so that I was as pain free as possible when physiotherapists arrived.  They woke me in the night topping up my medication so that I didn't wake in pain the following day.
My last couple of days I spent in hospital wereon the normal renal ward where they continued with the same pain meds as the previous ward and they didnt try to restrict me.  Although my wound was vey sore when I moved I was able to have a shower on my own, although I did fall a couple of times due to weakness brought on by low heamoglobin (which I have still not recovered from 7 weeks, in fact it's dropped much further).  All specialists were happy to let me go home after 2 weeks in hospital.
Then the dialysis sessions started 3 times a week.  Although the sessions are only 4 hours the waiting around for transport and unit becoming avialable my dialysis session usually turns into 8 hours.  They constantly have problems accessing my immature fistula and regularly blow my veins so my arm is really swollen, purple and sore most of the time.  The first 3 weeks I was suffering thrugh each session vomiting, feeling sick, stomach cramps and gastric problems.  These have more or less resolved other than gastric problems but they feel this may be due to my now very large liver taking up the space of my kidney. My abdomen is still very swollen and I am suffering from constant upper right and left quadrant pain due to liver so am now waiting for a referral to specialist liver hospital.
The good news is that I can eat solids for the first time in 2 years so am really enjoying my food. My eating behavoiur has changed over 2 years and so I feel happy to just eat what I am allowed although I do not have many restrictions just potassium based foods. I can only have 500 mils of fluid a day but as I am sleeping a lot of the time this is okay to cope with.
The bad news is since the operation and my psycological stress I am having depressing thoughts about death and how fragile and dependent I am on dialysis.  My bloodpressure is at 230/120 daily and I am not prescribed any meds since having both kidneys removed.  This is obviously an extra worry as I know that I could have stroke at such high levels. It takes a while to get fluid down to base weight soI just have to bear with it for now.  Also I am following a low fat healthy eating plan so expect more fluid to accumalate due to excess weight being turned into fluid.  I think once I reach my base weight the sessions will become even more easier to cope with and I will no longer feel fluid overloaded after finishing my dialysis session.
I have fallen a few times at home with my legs buckling beneath me- again they put this down to my haemoglobin so I now have a wheelchair ready to go for some last minute Christmas shopping.
Recovery is slow but I am getting there and just take each day as it comes.  Sometimes I don't get out of bed at all and some days I feel like I have a bit of an energy boost and so make the most of it.
My homelife is good and I am really happy with the support I am now getting from my family.  So life is good and I have a much brighter outlook than beofre hte operation.