Advice needed regarding antibiotics not given by hospital

Kidney and urinary tract
1

Just over a week ago my partner was diagnosed with a severe water infection caused by his catheter and our GP prescribed Amoxicillin stressing how important it was he took them. He started the course but the following day our GP rang with his blood test result - he had almost total renal failure and was hospitalised the same day. He was rehydrated on a drip and discharged 6 days later but I was horrified when he told me he hadn't been given his Amoxicillin - he'd taken them with him along with other drugs he was on but they were taken off him and locked up. When he asked for them he was told he could only take tablets that were prescribed by the hospital. Unfortunately I was unable to visit him so knew nothing about it until he came home. I rang out GP who said the hospital must have put them in his drip and to check his discharge letter but there is no mention of any antibiotics at all. I found this strange as he was also on long term Trimephoprim. I counted his tablets and found he had been given the Trimethoprim and also his Omeprazole but not his Amlodipine or his Amoxicillin. On rechecking his discharge letter under Detailed changes to drugs since admission & reason it said his Amlodipine have been stopped and Bimatoprost issued as 300mcg/ml (these are his eye drops). No other drugs are mentioned, nor his other eye drops. Then I noticed he had brought two new boxes of tablets home, prescribed by the hospital. These are his Omeprazole and strangely his Amlodipine! 

   My partner did not seem much better when he came home and despite finishing his Amoxicillin yesterday has deteriorated further over the weekend, it burns when he pees and today he couldn't stop shivering. I rang our Drs surgery today and was asked to take a urine sample in which I did and it tested positive to infection. I then had to wait for the Dr to write a prescription and for it to be filled at the chemist, a total of almost 3 hours, leaving my partner on his own. He is so unwell he's not capable of doing anything for himself, he had his bowel removed in March due to a bowel obstruction and has a bag and I got home to find him in a right mess as it had leaked (again!) but at least I'd managed to get the antibiotics so it was worth it. 

    I feel very upset that he is suffering as a result of having a 6 day break in the Amoxicillin and feel this is a mistake that should not have happened.

2

Your entitled (or rather your partner ) to an apology. "I'm sorry" costs nothing, but of course people are so concerned with the legal implications we lose sight of our humanity. 

With the recent concern over the use of antibiotics one would hope for a more responsible and coherent system, obviously sadly lacking.

I'm sure most people could come - up with similar experiences. That of course does not absolve the whole health service from blame. Sadly the system seems incapable of learning lessons from these disasters.

 Sad that you should feel so powerless, but of course you have done all that you can, which is all that anyone could ask. 

                                                      Thinking of you , Eric 

3

Thanks Eric, I feel you're right in that my partner deserves an apology and to be honest me too as this has added a whole lot more stress to an already stressful situation. I have no interest in taking it any further but I would like the doctor who was in charge to be made aware of his mistake but when I told our GP I feel he covered for him by saying he must have put them in his drip (although he did add he had no idea why he would do that!). Under Treatment on his discharge letter it just says fluid resus and encouraged oral fluid plus a stool sample tested negative for c.difficile toxin. It does say Infection control information for this admission - Not known. I'd like to know why it was not known. Also under Acute kidney injury it says AKI stage 1 - partial recovery, repeat U+E check needed in 1 week but today is the 8th day since he was discharged, I have no idea what a U+E check is but I do know it should have been done. Surely mistakes like these shouldn't be left for me to follow up as I've got enough on my plate as it is? But I'll have to do something as he's complaining of lower back pain today which I know from experience means his kidneys. 

    I think what may have happened when my partner asked for his antibiotics in hospital is they thought he meant his long term trimethoprim as he wouldn't have known the name Amoxicillin (he has been very confused due to his condition and not capable of even taking his medication without my help). I have been trying to find out if the trimethoprim should be continued while he's on a second antibiotic but twice been told at our surgery they would find out and ring us but they haven't! I feel so helpless and uninformed, googling didn't find the answer so I still don't know. I'll go to the surgery this afternoon and ask again and also ask about the U+E check. 

4

l,m sorry aabout the experience your going through, and your partner. l and many on here could write of simular bad experiences, whether due to misdiagnoses or undiagnosed, or meds that have not been administered when they should, or wrong doses,  Usually leading to increased suffering, stress, in some cases damage, mine started years ago, post op, slow giving anti bs for infection,  then chronic i.c.long time getting diagnoses, years, so damage done, and  its often with a casual attitude towards it.  l wont go into my history, too long, but l like many are presently battling to get info diagnoses, treatment, and empathy at least, and it seems more of a battle than its ever been. l,m lucky in my local hospital is one of the better ones re compatence and efficiency, but my struggle mainly with my gp,s compatence and attitude. l dont know whats going on, whether theyve just too many patients to deal with, too many seriously ill, or just ill,or social problem patients, too much paperwork and accountable to endless hierarchy, changing attitudes, but many dont seem as compatent, or empathetic, some seeming arrogant and callous, and too many patients  left to cope with health problems,  and circumstances they can barely manage, more so if older with few extended family, and few neighbours now who support.   l recently had a severe urinary infection, l knew from symptoms, ill with it, l had 6  250mg trimethoprin in, took them and felt symptoms easing after 2day,s but rang surgery and was sent l4 l00mg trimethopring 2 a day, took them and infection hung on, l rang 911 to be told yes `its normal dose, they dont do higher` right lve just took higher, so 8 days on and l was rejected for minor op cystascope due to infection and  being  unwell, next day my sample back, and sent 500mg kefalexin, 2 a day for a week, so over 2wk later infection gone, but missed needed op, to find out if cause of health problems, it  put back 2 months. l,d also asked gp for omprazole as well,l asked 3 times, he kept insisting 2-3 times he,s given me a different anti b, and didnt send omprazole with them, it seems if you try to tell them what you need they are then cynical

l try to let them know just how bad l feel, and lifestyle  restrictions massive, but cant get through, l guess the reason many end up going to a and e for diagnoses treatment.  l know there are some brilliant gps, surgery,s, but some are lacking, maybe the ones like mine with l5000 patients, l dont know.   We are told weve rights for things, but even they are a battle to get, re changing gps, hospital reports, and  complaints ignored.  lve had some great treatment and care, when l had cancer it was  excellent, but often chronic health probs get less response, or very slow, leaving you to it, and where are the back up services, as l,m guessing kaydi your an older person, and a lot to cope with practically and emotionally. The chemist should have been able to deliver your script, unless it depends on chemist, mine do that at least.thankfully  l,m personally told to come off one anti b if given another, but cant say if thats essential.l guess by now you might know, and info on u and e, but think some posters know more about kidney probs who might advice.  l hope youve got the info and help you need, and your partner improves soon.

5

Dear Kaydi , I have a friend who works for this serice, sometimes it works well other times it fails, its not magic but if everything else fails ! Then it's worth a call if all other avenues are closed .

                                             God bless, thinking of you, Eric x

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6

Hi Lynne, it sounds as if you've really been through the mill and I feel for you having to fight to get what you know you need - why don't they just listen?! I've had my own kidney problems over the years - one kidney was killed by constant infections in my teens yet later in life I was told by a specialist my still ongoing kidney infections were psychosomatic. I then had a exploratory op that showed my urether is very narrow which prevented my bladder emptying properly leading to the constant infections. Since then I have always made a point of really straining to empty my bladder and have not had any more infections since. Why I wasn't given that exploratory op when I was a teen I will never know as it could have saved my kidney.

   You are right in that I am an older person - my partner is a lot older still at 80 and I'm not sure how much more his poor body can take as he's been ill for so long. He's lost 4 and a half stone in weight in the last few months, is still losing and is skin n bone! 

   As for the chemist yesterday, while I was waiting for the Dr to write the script I did go ask if the chemist could deliver but the delivery man had already done his rounds for the day. As for the trimethoprim I gave up waiting for the Drs to let me know and asked the pharmacist today and she said to give him both. Unfortunately I hadn't been giving them as I just didn't know if he should have both, had I known maybe they would have helped. He's been shivering uncontrollably today despite the warm weather and still has pain in his lower back so I really hope the Dr sends the district nurse out tomorrow to do that U n E (which I now know is a blood test). I pray the results don't put him back in hospital as he's got a much needed assessment on Friday with the council for help with funding a stair lift and walk in shower. He was on their 6/8 week waiting list for this assessment when he was first hospitalised with the bowel obstruction and we were horrified to find they took him off the list while he was in hospital and he had to start the 6/8 week wait again. It's now been almost 9 weeks and we'd heard nothing until I emailed them last week. He's been saving for several yrs but that's not easy on a pension n he has nowhere near enough saved. Our shower is in our bath and he has been struggling to climb in for months and since he came home from hospital 8 days ago he's only managed to have one shower. With his stoma bag leaking frquently he needs his showers daily and it really worries me that he's not able to.

7

Thanks so much for that Eric, excellent information that I'll be able to refer to in the future.

8

hi kaydi, There,s another poster on here, jess, she went through simular to you with kidney probs, over growing up,  now doing ok after having one removed,  l was told ld 2 ureters joined at some point, and like you l strain to make sure the bladder is empty, less chance of infection,s. Problems we have with our plumbing, glad its stopped your infection,s, l only get bacteria infection rarely.   Shame that we get put back on waitng list when its through not fault and couldnt be avoided.  l also ask the pharmacists, very helpful and open with info.   Does sound like your husband still has infection, sometimes it takes 2 or 3 courses or stronger anti bs to clear bad infections, so hope he improves soon, l know its a worry.  But the numbers given are a help, lve a rung them a couple of time when not sure of symptoms, they are thorough and will advice on what you can or should do.  Good luck

9

I went to our Drs surgery Tuesday showing my partners discharge letter saying he needed a blood test and was told a district nurse would come out but after waiting all day Wednesday for the nurse I rang the the surgery and told them I'm really worried about him as he was showing the same symptoms as before and that his last blood test showed he'd got almost total renal failure. Again I was told the Dr would be informed. Just before 6pm the receptionist phoned back and said the Dr would come out but not until Thursday morning which I didn't think was acceptable and I got the impression the receptionist felt the same so I said I'd considered ringing 111 and she agreed that would be the best thing to do. So thanks Eric your post came in handy sooner than I expected. They were excellent and arranged for a Dr to come out Wednesday evening, they said within an hour but it was three hours later when the Dr came but even so he came and was very thorough. He was concerned about my partners urine output being much less than usual and still showing infection but his blood pressure is ok and he showed little reaction to being prodded in the kidney area so that was good. But he wasn't able to test his blood and said I must keep chasing it up until a nurse came to do it as he really does need it urgently. 

    This afternoon the nurse finally came but she was only able to get one bottle of blood from him n needed two. She said it was because he's so inactive (it's now 3.10pm and he's still in bed) and after trying at least half a dozen times she had no choice but to give up and said someone else would come out and try again tomorrow. In the meantime the bottle she did manage to get will be sent off for testing. As soon as I hear anything I'll post again with the result.

10

Dear Kaydi,

                    It's really hard to care for someone like you describe . Please take time to care for yourself too . Just a cup of tea and a walk will change your outlook on life, and I hope you will feel a little bit brighter?

Glad to hear your getting a tiny bit of help.

                                                                     Regards, Eric F

 

11

Thanks Eric, I've pulled a muscle in my upper back and am now indulging myself with a lie down and a packet of marshmallow wafers - yummy. I quit smoking 24th May after my Dr suggested I try e cigarettes and I was pleasantly surprised at how they prevent the craving. I've got myself an Eleaf battery and a tank for e juice and find I'm actually enjoying vaping. 

 

12

I waited all day for the district nurse to come try get the second bottle of blood needed to test for Don's kidney function but no one came! His stoma nurse rang and when I told her the situation she rang our GP who then rang me. He too seemed shocked the blood test still hasn't been done and told me to ring an ambulance for Don to be admitted to hospital. I told him Don was refusing to go to hospital (he'd refused last time until the Dr had told him he'd got almost total renal failure and would die if he didn't go). It was the same Dr but he seemed to have forgotten that Don is a stubborn so and so who 

13

I couldn't finish my last post as for the third time on here my keyboard just stopped allowing me to write. I then spent ages writing another post but when I tried to send it I'd lost my internet connection and lost everything I'd written. I'll post this to explain and then try again - if I can remember all that I'd written!

14

This is a continuation of my post that ended in me saying what a stubborn so and so my partner is as he refuses to go into hospital. Yes he is stubborn but both urine infections and renal failure cause patients to be confused and I feel this should have been taken into consideration as he has been getting increasingly confused about many things lately. Ringing for an ambulance would just waste their time as without blood test results to show Don how bad his kidneys are there is no way he will agree to go into hospital, believe me I've tried everything I can think of but he won't budge. He said he won't go in on a weekend but will go come Monday. Telling him he may not live until Monday had no effect and I am at a total loss and feel I am losing this fight. 

    His assessment didn't go too well this morning, he was still in bed despite my efforts to get him to get up and he didn't take kindly to having to do all the things she asked of him such as show her if he can get in and out of the bath to shower. He has only managed one shower since his discharge on 9th June and every time I suggest he tries he swears he had one the day before! Today he swore he had one this morning and even when I reminded him he had his council assessment this morning he still insisted he'd showered while in the bathroom with the woman! As I said confusion is part of his illness. The outcome so far on the assessment is she left him a seat over the bath, is arranging for a bath rail and a stair rail to be fitted but will come back in a few weeks to see how he is managing with them. So our hopes for some financial help with the walk in shower and a chair lift have been erased. But if things don't go well over this weekend then there may be no need for them anyway. 

    I feel completely drained, I've fought all week to try get him the treatment he's needed but the NHS let him down. I have no idea why a nurse didn't come back today or why the blood test wasn't given after a week as stated on his discharge letter and I doubt I'll ever know, what's done is done and can't be undone. Our GP did prescribe another course of antibiotics which I collected from the chemist today but I have a feeling it's too late for them to be of much help. Where there's life there's hope though and I'm clinging to that. 

15

Sorry to hear your having a horriffic time, and your partner, and what a battle  for some to get decent health care and back up.  Can you ring the ambulance service or a and e explaining the situation you and your partner are in, sometimes ambulance staff can be very good at coaxing a patient in need to go with them, l know its not ideal when you know your husband is resisting, but l cant see ambulance staff resenting trying to take him in, they go out for all manner of none urgent and alcahol related pick ups, and will see straight away he,s in urgent need. Do you have a thermometer to see what is temp is, which would indicate how bad the infection is.  But l,d ring a  and e and tell them the state he,s in and his state of mind, see what they suggest. or the ward he was on last week,  you need someone to explain to.  We all live in hope, so hope you get some help soon,

16

Just to say, like all of us we are thinking of you.

I don't think there is anything else I can say except to add my wishes for your good health and happiness too.

                                      Have a better day today, Eric x

17

Thanks Lynne and Eric, your support means a lot to me. 

   Last night I went to bed before him as my back was hurting, I heard him coming up but when he got to the top of the stairs he yelled he was slipping. Before I could get to him he managed to grab the top step and then crawled to the side of his bed which took him 20 minutes! I hoped he wouldn't be able to get himself into bed as then I could have called an ambulance but he did eventually manage it. I asked if he'd taken his tablets and he said he had but as I normally give him them I came downstairs to check and found he'd taken 4 of the new box of ten antibiotics! I don't know what others he'd taken as I have no idea how many there was in the bottles and when I asked him he said he didn't remember. 

  I'm keeping a close eye on his urine output which is about 400 ml in 24 hours. I know this is not good as I checked online and it points to renal failure. He is still in bed and I've tried several times to persuade him to get up and attempt a shower, I want to change his stoma bag as he was red raw behind it two days ago but when I tried telling him I'd do it while he was in the shower he lost his temper with me which is out of character for him. I then decided to ring his eldest son who I expected would advise me to ring the ambulance. But Andrew knows his dad too well and knows it would be a waste of time as he will not go to the hospital no matter who tries to persuade him and he actually told me not to ring the ambulance. He lives a long way away from us but is travelling here later today and told me to wait until he gets here between 7 and 8pm tonight. It's going to be another long day but at least I now feel that help is coming. His other two sons live fairly near and every other time Don's been ill they've been brilliant, taking him to and from hospital, taking me to visit him and constantly ringing us so I can't understand why they are not here for us now. One of them has been in touch by text and I know he is doing a charity sky dive today (he did offer to take Don n throw him out of the plane but I was too stressed to joke with him) but I've heard nothing from his other son. 

   I best go try again to get Don out of bed as while he's sleeping he's not drinking. Will update later with any news.

18

Well glad to hear one son is coming to help, l know what sons are like, two of my own, love them and decent but sometimes need a big prod.

lve not experienced the big problems with someone close re their state of mind problematic, but know others who have and know it can be a nightmare.  A friend in simular position, and l knew her husband before he got very bad, a lovely man, only in his 50s, but went downhill, and eventually had to go into hospital, which he,d dreaded and said so when able, but he,d become aggressive, then wouldnt eat, no one could make him, even the hospital, Terrible for family and them.  l hope his son can help you. Good job we do live in hope.

19

Andrew came yes it has helped as Don has finally agreed to go in tomorrow. All I can hope now is he doesn't change his mind come tomorrow but I think he now understands if he doesn't go in he will die. 

   He finally managed a shower this afternoon although the water was only running a couple of minutes when I heard him turn it off so I went in to him and both his back and chest were still dry and he still had shower gel bubbles on his arms. I told him I wanted to change his stoma bag so it could be properly washed behind it but he couldn't stand any longer. I got him to sit on the new seat but he was slipping and sliding and almost fell off it! I put a towel under him which helped then I washed all the bits he'd missed and washed his hair. Never did remove the bag though as both bottles of adhesive remover I'd taken up were empty and he was cold so we decided to leave it. This is the first bag that hasn't leaked in the last couple of weeks and it's been a welcome break for me so I'm sure it won't hurt to leave it until tomorrow. He was red and weeping when I put it on two days ago and it was the first time he actually felt the soreness but he said it doesn't feel sore now so hopefully the special powder I put on has healed it. 

   I feel immense relief, as if a big weight has been lifted and I suppose in a way it has. I texted Andrew to tell him (Don agreed after he went) and he asked me to let him know when he is going tomorrow so he can be here (he's staying with relatives over the weekend) Hopefully I'll be posting on here to say he's in hospital come tomorrow, fingers xxed eh.

20

Glad to hear somethings gone right for you, it will be the best place for him to get best treatment, and a bit of a break for you, be it you,ll still be anxious and visiting, but you do sound less stressed already, glad he,s agreed, he,ll be anxious also,  the things we go through, Hope it goes well, toes xxxx as wellx