Update on a Sailor - some suggestions for hospital staff

[Sailor]

Hi Everyone Well here I am in hospital since last Monday and here for some time while things get sorted. It turns out that I had developed septicaemia due to a pseudomonas infection as well as having the ureteral stent blocking. The only problem was that instead of going up my blood pressure went seriously down, and my temperature remained normal. So I am proposing three suggestions for medical people, particularly nurses. 1. Observe your patient 2. Listen to your patient - they know far more about themselves and their symptoms than you do. 3. Respect your patient - they have managed this disease far longer than you have. Let me illustrate from this last two weeks experience. Blood pressure going down and having blackouts. Saw my GP, who thought it was a good thing and reduced my blood pressure medication. I didn't have a temperature therefore could not have an infection, it must all be due to a reaction to the clinical trial drug I am on. That no one else out of hundreds on the trial have reported blood pressure drop seemed irrelevant. Rang/emailed other specialists who really didn't seem concerned as the initial kidney pain had gone - 'must have passed whatever was blocking the stent'. It was only when I said I have had more serious blackouts, I am peeing urine the colour of a good Shiraz and I am in pain, that it was suggested I better get to hospital that afternoon, booked for theatre the next day. By this time my skin was yellow with purple blotches everywhere. Get into hospital, get through the paperwork barrier quickly and up to the ward. Ward reception tell me the room is not ready yet and to wait in the waiting area. So the Chief of Domestic Operations and I sit there for an hour, me looking awful and in pain, with a succession of nurses passing and taking no notice. Get taken down to the room and left. After another hour the CDO is getting pretty annoyed, so go back to reception, who tell her 'we can't understand why he is in today, he's booked for theatre tomorrow and we have to look after those booked for theatre today!' The CDO is a former Triage nurse from a large Emergency Department, so she let them have a piece of her mind and came back and told me that she had made me a few enemies. By this time I an lying there feeling really cold and shaking violently. Eventually a nurse turns up and asks if I have Parkinson's Disease - I think I told her to read the paperwork. She wrote her name up on the whiteboard and left, didn't go through the paperwork or deal with the large bag of medication I had brought with me. The CDO found the blanket cupboard and piled a few more blankets on me. My urologist turned up and brought a renal physician with him, who took one look, went away, came back with the charge nurse, read the riot act and suddenly I had a very competent nurse dealing with me. Great volumes of blood were taken and sent of to pathology, several different types of urine sample followed, drip set up, iv antibiotics and hydrocortisone started. He later told me he had never seen a patient looking so septic. So - observe your patient. If they look sick they probably are. In the interim I had taken my medications as I was supposed to, at the time I was supposed to. That didn't go down well. As I explained - I have lived with this disease and it's side effects for a long time and I am still competent. I don't mind you managing my medications, but to do that you should have gone through them four hours ago when I was first admitted. I know when I need them, I follow the instructions to the letter and I will not have my medication regime compromised, particularly when I am on a clinical trial that is working for me. Silence - the CDO is trying hard not to laugh - and the good nurse took it well, noted down what I had taken and when and then said, OK I'll manage it now. So - respect our patient's competence, they have been managing this a lot longer than you have. The next day into theatre. By this time I'm peeing Rose not Shiraz. Unfortunately the stent had grown barnacles and would not come out. No theatre availability for later that day, so into an ambulance, across to another campus of the same hospital, Great confusion on my arrival, but eventually into theatre and a tube inserted into the kidney to drain it out the side - a nephrostomy. So I feel as if Im trussed up like the Christmas Turkey with this bag attached for the foreseeable future. Also a normal Foley's catheter draining from the bladder. Remember I am peeing blood. So the inevitable happens - not much draining from the bladder. So I am told to increase my fluid intake. I suggest that the catheter might be blocked! No notice taken, fluid intake increased. By now I am looking like I am six months pregnant. So they decide to do a bladder wash out - standard procedure, except that I keep telling them that I have been self catheterising for ten years and that I know when a catheter is blocked and how to deal with it. So they proceed with a bladder washout. This consists of filling a 50 ml syringe with sterile saline - pushing this up through the catheter, then sucking. Nothing happens, they can't suck back on the syringe. A male nurse is sent for as he is stronger and can pull on the syringe better! I suggest the catheter is blocked and will need removing. 'No we will try again!' Three times this was attempted, an extra 150 ml of fluid into the already full bladder. The consultant is contacted who instructs them to remove the catheter and replace with a larger one - I warn them that when they do they had better have a bucket ready - 'No it will be right'. The flood was quite spectacular and they were mopping up for ages. Larger catheter goes in. OK over night, but the inevitable happens and it blocks the next day. This time the CDO is here. They suggest she might like to leave - No Way! So when they give up after three more attempts, she suggest they take the catheter out, let me do a bladder wash out using my catheters, and they do not put a Foley's back in and let me manage it myself. The consultant agrees, so out it comes - this time they are ready with the bucket and then I proceed to show them how I was taught to do a bladder washout and removed between 60 and 100 ml of clotted blood - revolting!! Now these were good nurses, giving excellent care and training in standard operating procedures and following these to the letter. However all patients are different and will not necessarily respond to SOP's, So listen to the patient - they know far more about themselves than you do. To those three suggestions I make one more: 4. Make sure you have someone like my CDO batting on your side. I am getting excellent care, the nurses have been wonderful, willing to learn and we now have a great relationship. If they are in the hospital but not on this ward, they drop in to see me. Future - stay on the iv antibiotics until they can get the stent out. No oral antibiotics available for this bug. Some special scans tomorrow and then hopefully early next week back into theatre, most likely fro some lithotropy to blast the encrustation out of existence. Cheers Sailor ...Every master and pilot prided himself on knowing exactly how much way his ship was making. He knew the ship, he considered the wind, he watched the sails, he watched the water. In fact, it was a matter which just could not be explained to the landsman. A good sailor knew his ship, and that was all. E. G. R. Taylor

[SILLY]

What a horrible experience !!! I hope you are feeling better now . My son has a kidney disease , which is supposed to be incurable but which has not troubled him for 25 years . As a child he came close to death 3 times and was hospitalised several other times . On a few occasions when we saw his early symptoms and took him to the hospital we saw a different doctor who didn't know him he was sent home . Invariably ,the next day he'd be taken back with worse symptoms and admitted . We knew his condition but doctors wouldn't realise this . Once admitted he'd soon get to see his specialist but we had to go through the system . The worse he was the longer recovery took . So I get what you are saying . During one of his stays in hospital a nurse' aide was writing on his chart information that she actually made up .She was supposed to measure and record all liquid input and output but didn't bother checking ,just faked the figures . I'd been watching . We reported this . Never have I come across such poor nursing . I believe most nurses and aides(probably called something different these days) are wonderful . Septicaemia is serious . Are you still being treated for that ?

[kj]

Sailor So very sorry to read of the lack of listening to the patient and there lack of knowledge and respect shown to you hope every thing improves for you soon, gee i must be one of the lucky patients I had nothing but kindness and compassion ,it shows you really must stand your ground and listen and know your own body good luck get well quick kj