nightmare on ward 8X!!!

[katie26]

Well i had my second procedure this year to excise the endo from my bowel. after a total of 8 hours in surgery i woke to a swollen and inflamed uvula i was choking on it and gagging in recovery no one would give me any water to drink to help. i was then taken to what can only be described as a make shift ward. with nurse who as i was hooked up to a PCA Offered me and icepop and ant sickness medication i advised her that i did not want any anti sickness medical as metroclopromide made me really anxious and i had and bad reaction to it, to which she offered me an alternative. all was fine despite the throat. so i woke a day later in a opiate haze and managed a bit of food but the throat was preventing me eating they kept removing my jug of water and at one point i was without it for 2 hours whilst struggling to breath and swallow. i complained about the throat on numerous occasions and it was suggested that i should ask my parents to bring strepsils in. after a bad reaction to morphine for which i needed anti histamine which it took 3 hours for them to et i was taken off the PCA The next day and the 6 hourly drug rounds began. i was given 2 codeine, 2 paracetamol and and anti sickness of course i assumed it had been noted to not give me the drug i had a bad reaction to so. 24 hours later i am suffering from migranes terrible fatigue low blood pressure and anxiety through the room. only when they are discharging me the next day that i seen they were giving me the metrocope that i had told them not to and they had in fact been giving me it for 2 days hence the bad side effects. also the nurse came to give me a fragmin injection and was called away the next day at 3pm the injection was still next to my bed waiting

after all this my gynae tells me surgery was unsuccessful and theres nothing more they can do for me on a surgical front and it will be hormone injections until i want a baby (ivf) or hysterctomy

pretty shit week!!!!! home now and finally feeling nursed back to health by family!!!

sorry needed a rantQ

[JulesUK]

Really feel for you that's awful. Had a pretty bad experience myself with Nhs before I had the good luck to go private for the next ones. Are you going to write and complain? I really regret not doing so. Why was it unsuccessful? Hope you feel a bit better soon x

[katie26 in reply to JulesUK]

Thanks yes when I'm feeling a bit better I will be contacting pals! X

[Mistiek]

Ah no, that is terrible!!!! I'm a nurse in the community and appalled by some of the stories I hear from the hospitals!!! I don't think I could ever return to hospital work as most people have nothing nice to say and I never want to be put in that box! Totally disgusted by the service you have... and to give you a drug you told them you can't have and to leave a fragmin injection on the table!!!! "Shock"

I'm with Jules.... you need to complain. Please.... her ok the south coast we have PALS in hospitals and both in the community. This type of treatment needs addressing... Please complain.

After 8 hours what was unsuccessful? I find it hard to believe nothing more can be done? Was it an endo specialist?

I'm glad you are home and family are taking care of you... keep in top of th e Meds for a while and take it easy... wishing you a speedy recovery... don't give up fighting for help!

Hugs xx

Carine

[katie26 in reply to Mistiek]

Thanks for reply, I think I am going to complain to pals both my mums sisters are nurse clinicians in the community and are appalled. Basically the end removed in March had come back as aggressive in other spots. Yes was an endo specialist who also does private work he categorically said there is nothing anyone can surgically do for me now.

Disappointing but what they have removed now should improve quality of life and injections keep at bay until ready for family.

I considered going private money isn't the issue I just find it Hard to believe the exact same doc would give a different diagnoses!

Xx

[LeyaC in reply to katie26]

I'm appalled, who were you seeing? Xxx

[squancy in reply to LeyaC]

Hi, could you email me who you saw please? I live in Kent and want as many options possible. email is [e-mail]

thanks.

[Mistiek in reply to katie26]

I'm glad you will be complaining.... I can't see how nothing more can be done... I guess if it keeps coming back so quickly they can't keep operating as it would mean a couple of times a year... However if the specialist did a decent job and cut it out then it should stay at bay with the Meds... well this is the hope. But we all know how unpredictable endo can be. Unfortunately it sounds like a wait and see game for you... which is harsh. I'm not a wait and see person so find that bit about endo really hard! I hope this helps with the symptoms for now and the Meds help keep it at bay... If you think you need more help... get in touch with another consultant! There is nothing wrong with wanting a second opinion! No point going to the same person for a second opinion.

If money is not the object and you can afford to go private and don't mind travelling if needed... look for another specialist you can take your notes to for his opinion on wether or not this is the end of the road for now...

Good luck xx

[Yazza]

What hospital was this? X

[LeyaC]

Which hospital was it? I go to Kent which is 250 miles away but he is amazing. He is mainly private but ses people on NHS too and the care is exactly the same, the only thing you pay for is food and medication (prescribed to take home) If you're interested I can give you the secretaries email xx

[kyla78]

That's awful, I would inform your local healthwatch about that, they are very supportive! Hope your feeling better? X

[Hidden]

Am so sorry to hear about what you've gone through and am glad you will be complaining. I had a pretty poor standard of care in a private hospital and never pursued my complaint beyond a letter to the hospital, which I kind of regret. Left with a chest infection and ecoli in my bladder, plus there was various cock ups - starting with being given a leaflet for the wrong operation ahead of going down for surgery - luckily I saw the anaesthetist ahead of time who reassured me they knew exactly what I was there for - but it kind of went from there...Anyway it wasn't as bad as your experience (bad reaction to meds was involved but at least in my case no-one actually knew I was intolerant ahead of time). Have to say the whole thing has made me very wary of any further surgery and I've basically refused it ever since...which may of course be the right or wrong decision. It's interesting to hear this happened on the NHS because I was always wondered if my problems were because I had gone private... I guess bad practice can happen anywhere. Not surprised you need to rant, it's appalling!!

[lauravarn]

I'm so sorry this happened. I think as part of your complaint you should have a meeting with the patient records manager where you go through your medical records and make sure it's recorded that you can't have metaclopramide. I can't have it either- it's known to cause an adverse reaction in younger women called 'AKATHISIA' which causes jitters and psychological effects- it sounds like this is what you experience, and like it should be documented in your records with the hospital and with your GP.

Think about what you would like as an outcome of your complaint- that will help you feel better, especially if the outcome helps reassure you that this experience won't be repeated.

I'd suggest making numbered points in your letter too, then they can be addressed and responded to one by one (I am used to writing lots of complaint letters!)

[mdsp7]

Dear Katie26. It sounds like you have been having a really dreadful time. How difficult your experience has been! These doctors and nurses tried to help you -- but you did not have the same body as did the other people that they had been able to help. You knew this, and told them about yourself. But they thought they knew better what to do for you, and did not listen to your words. And then you got worse. So they are upset, because they feel like a failure, in your case. They are tired and busy and maybe couldn't let themselves feel your suffering. They couldn't help you, so they think no one can. (But this is probably not true.) And you feel frustrated and disrespected, and in pain and upset about your prospects as well. It is a hard place to be in. But life does give us these challenges. What can you do with this one, that will be constructive for you? You are in pain and very disappointed. But you want to get better. That's a really good start. Can you do other things to help turn this around? I believe so:

I believe that there are people out there that will be able to see more clearly what is going on in your particular case. Try to relax and do what you can to make the healthiest choices for yourself that you can. as you continue searching for relief. Someday soon I hope you will have a breakthrough and find the good help that makes you feel great again, and this suffering then will be something in your past that taught you important lessons: that you are strong, that you know what suffering is and can therefore have empathy for others, that sometimes when it is really bleak, things can and do turn around. Other lessons too, that can be a powerful aid to you later in your life as you take on other challenges.

Read everything you can. Keep reaching out to people. Picture yourself happy and healthy, enjoying life, and holding a beautiful, peaceful baby. Don't worry about what you are being told by the people who could not help and did not listen. Our bodies are very complex and there is more than one way to solve a complex problem. So far you haven't found the people who understand what your body needs now in order to be well. But they are out there. Keep searching. Find them. Stay positive. Be kind to yourself. Rest when you need to. Cry when you need to. Put a smile back on your face when you can. Strength and courage!

[katie26 in reply to mdsp7]

This was a lovely post to read thank you xxx