Surgery over - how to make the hospital understand fibro?

Anything to do with the NHS or Private Healthcare.

Moderators: perseus, *Lisa*, FluppyPuffy

Surgery over - how to make the hospital understand fibro?

Postby Vimsen » Sat Jan 12, 2013 1:12 pm

Not sure if this is posted correctly, but I'm sure the moderators will move it (thank you) if I post wrong.

I was to have a simple laparoscopical surgery January 10th (two days ago). Hysterectomy. But as they attempted to do it laparascopically, they quickly realized they had to do it abdominally instead. The whole back side of my uterus was rock hard, like sement. Endometriosis found, and the uterus had grown attached to the bowel and rectal and such. So the doctor told me it was a larger surgery then expected, with them having to dig around in the back of stuff as well.

Anyways... we agreed to take it one day at a time, but now... especially the nurse who's my contact today, almost makes me feel bad for not having made more progress. She told me just about everyone after this surgery gets the catherer removed the day after surgery, at the latest. Mine's been in for over two days, I haven't even beel able to sit up in bed. I managed to sit up this morning without too much pain, so that's progress!

But I'm unable to stand on my own two feet, too much pain! And they see no reason for that being a problem. I've tried telling them about the fibro. I've tried telling them I'm off to rehab in a month or so because of the fibro. I tend to use my back and stomach for walking, instead of my feet as I have week knees. Which might be why standing is so painful. Of course, along with the pain in the rest of the body.

All of you with fibro knows the agony of standing up sometimes, with the whole body hurting.

So far, they want to send me home on monday, even though another doctor told me they would not send me home until I was able to take care of myself. But I'm scared they are gonna think I'm faking it or not trying hard enough or something. But they need to understand not two people are alike, it takes a different amount of time for everyone. Some are on their feet the same day, others takes long.

But how do I make them understand all this? How do I make the nurse today understand why it is so painful and difficult for me to stand up?

Sorry for rambling.
Some days are for living.
Others are for getting trough.
User avatar
Vimsen
UKFM Member
 
Posts: 54
Joined: Tue Sep 18, 2012 3:59 pm

Re: Surgery over - how to make the hospital understand fibro?

Postby froggy72 » Sat Jan 12, 2013 3:48 pm

hello speak to sis on charge off ward explain to her about ur fibromyalgia and the nurse who in chargre not being very supportive to ur care keeps telling u about other peoples progress. good luck hunnie u will get well when ur body is ready. i only had kidney stone removed stent fitted i was ill after anastic my pain was horendus. lucky realy the uroligist was understand gave all sorts off meds for pain. simple surgery took me 6 weeks before i was right again xxxxxxxxxx. gental hugs hunnie . take care best u can. please speak to sister on charge. its up to ur doc for when ur home not nurse xxx :yikes:
froggy72
UKFM Member
 
Posts: 31
Joined: Fri Sep 14, 2012 8:35 pm

Re: Surgery over - how to make the hospital understand fibro?

Postby Vimsen » Sat Jan 12, 2013 4:30 pm

Managed to pee a wee bit in a chair today, better then last try. But it takes so much out of me I start crying every time. The doctor who was here talking to me today, wants to send me home on monday :O But the doctor who spoke to me before that, told me they wouldn't send me home until I was able to take care of myself... and that's the most logical, no? I mean, they can't just send me home when I can't even sit up or stand up without help?

Told the afternoon nurse as a joke that they had to involve a physical therapist. But it was ment seriously. Maybe a physical therapist who knows about fibro can teach me new ways of getting out of bed without too much pain?

It took me two whole weeks to get better from a simcple scraping out the uterus. This is way bigger then that, the doctor who operated on me said himself that this was a big surgery.

6 weeks recovery after a kidney stone sounds a lot longer then "the general public" which also proves my point here, that we are all different!! It's great for those who are up and about the day after, but some of us actually takes a lot longer to heal!!

I'm just so terrified it's the wrong doctor making the call to send me home :(
Some days are for living.
Others are for getting trough.
User avatar
Vimsen
UKFM Member
 
Posts: 54
Joined: Tue Sep 18, 2012 3:59 pm

Re: Surgery over - how to make the hospital understand fibro?

Postby bluesheep » Sat Jan 12, 2013 4:36 pm

I have had many horrible experiences thanks to non- understanding nurses the two worst being a ward sister who an hour after surgery yelled in my face whilst helping me onto a comode why are you making such a fuss the surgery was on your neck not your legs, I suggested she get her eyes tested as my wheelchair was right there next to my bed and that being a ward sister I would have thought she would have read my notes and care requirements.

The other was last year when I had surgery to remove a kidney stone and they had to cut my urethra to get the stone out as it was so large as a result the day I was due to be discharged I started bleeding very badly from the cut and had to have a catheter fitted and bladder wash outs 4/5 times a day I became so poorly that they were giving me bed baths, a diffrent nurse came in one morning and told me to get out of bed and called me lazy when I said I couldn't she then said very sarcasticly "what you going to do take a nurse home with you to wait on you hand and foot?" so I simply said no but I will be having careers, and be using my wheelchair to get around plus (as I reached down and picked up my catheter handbag) I would hope the my wee no longer looked like this when they discharged me which will hopefully mean I'm getting some strength back without such heavy blood loss, she didn't even speak just rushed out the room I told the ward sister what had been said she hit the roof as she had explained how much help I was needing in handover.

So I think a lot of the problems that arrise in hospital are a lack of understanding of the needs and medical problems that arrise with the fibro they see the reason you brought into the hospital and find it difficult to understand that it has a knock on affect on fibro.
The ward sister can often be the person who understands and can get other nursing staff to understand but I also discovered hospital phamasists and social workers carry a lot of clout and they are far more likley to find time to listen to you, understand the problems and can then kick backsides into gear when all other methods have failed.
I also learn't the hard way that before surgery it is a good idea to speak to the anithatist (i can't spell) and make sure they understand the fibro as they will be the one looking after you during the op and can ensure everybody is very gentle when moving you around and that you get the correct aftercare.

In hertfordshire we have an enablement service where careers come into your home for six weeks and suport you in your recovery and get you independent again ask to see a hospital social worker before you are discharged they maybe able to get you some support when you leave hospital.

Hope this helps and that you get well soon.
Last edited by FluppyPuffy on Sat Jan 12, 2013 9:33 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
bluesheep
UKFM Member
 
Posts: 28
Joined: Mon Aug 06, 2012 7:11 am

Re: Surgery over - how to make the hospital understand fibro?

Postby Iceskatemum » Sat Jan 12, 2013 6:18 pm

Hi Vim, glad you have had the surgery , I remember you saying how bad you were feeling beforehand. Now you are on the road to recovery and will hopefully be feeling a lot better once you get over this blip in the road.
I know you are not UK based so perhaps some of the practices we have here might not mirror what you have at home but would think that you shouldn't be discharged before you can at least go to the toilet on your own. However you might be surprised at what they call ready for discharge & how you personally feel , unfortunatly gone are the days of being kept in until you can fend totally for yourself. There is an assumption that you will do most of your healing at home with help from friends & family.

I had a hysto about 10 years ago and was kept in for approx 5 days post surgery. During that time I was on a self administering morphine pump for 48 hrs and then on oral pain killers, but was only allowed home after I could walk the length of the ward (It was a small ward)and could pee & poo.
Can you have a word with your surgeon when he is next in the ward, or leave a message with who ever is in charge that you would like to speak to a doctor about your pain meds. I am assuming that you informed them of your fibro before surgery, take the opportunity to tell the surgeon again that you are having bad post surgery pain & "normal " meds aren't touching it.

Hope you get some help with things and are at least feeling comfortable very soon.

Good luck

ISm
Iceskatemum
UKFM Regular
 
Posts: 1599
Joined: Thu Jul 12, 2012 4:20 pm

Re: Surgery over - how to make the hospital understand fibro?

Postby denys » Sat Jan 12, 2013 7:46 pm

Hi V hope you are feeling a little bit better now, when I was in hospital they asked if I would like to talk to the sister who dealt with the pain clinic and she gave me advice on how to take my tablets to give me the best relief with them and it worked so ask if there is anyone who can advise you how to get around without so much pain you have to be given help otherwise how are you supposed to start on the road to recovery. Sending some gentle :hugs: :hugs: :hugs: :hugs: :hugs: and a wish for some understanding for you
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: Surgery over - how to make the hospital understand fibro?

Postby Vimsen » Sat Jan 12, 2013 8:45 pm

Lets see if I'm able to reply in this position... still not able to sit up all the way.

bluesheep, sorry you had such a horrible experience at the hospital.

I've informed them both before and after surgery about my fibro. It took a little over a day to find the right type and dose medication, but that part's worked out now. Still in some pain, but not more then I can handle.

My goal for leaving here, is being able to stand on my own two feet, and walk to the bathroom without help. I really don't think that's setting my goals too high or asking too much. I have my mental health contact calling me on monday, gonna ask her to stop by and if things not better by then, have her talk to the doctors here so they don't just send me home.

It's a stressful situation at home as well, with 4 very active cats... they are a big factor for me, but I can't use that as an argument here... so kinda hoping the fibro will be a good enough reason.

With being forced out of bed (I know they only mean well) I'm sleeping around the clock now it feels. Sleeping due to pain and exhaustion.

I've tried explaining to them about the fibro and waiting to go to rehab, so if no better by monday, I will try to ask for a physical therapist who can train me in how to get in and out of bed with as little pain as possible. And I have told them I do not feel ready to go home before I am able to lie on my side (what I've not told them, is because that would protect me from the cats). I might inform them though, about home not being a place for resting.

The worst thing they can do, is generelaize it (is that the word?). They can't tell you "oh but "everyone else" is on their feet withn two days". That's bs. Hurray for the people who are on their feet fast, but we are all different! And I was in bad shape before the surgery, so it'll take longer with me! It's not without reason I've been granted help articles at home (a chair for cooking and new crutches) and it's not without reason I am waiting for rehab for the fibro.
Some days are for living.
Others are for getting trough.
User avatar
Vimsen
UKFM Member
 
Posts: 54
Joined: Tue Sep 18, 2012 3:59 pm

Re: Surgery over - how to make the hospital understand fibro?

Postby shazq » Sat Jan 12, 2013 8:48 pm

Hi Vimsen

You should talk to the sister in charge but if she does not take any notice than talk to the doctors on the morning round.

I have had a few operations since having fibro and have to say i have never had any problems, i mention fibro to them and they have all been helpful so mention it to all the nurses you see and they should make a note of it in your file. Let them know what is worrying you and the problems you thing you will have once you get home. :goodluck1:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
User avatar
shazq
UKFM Veteran
 
Posts: 11449
Joined: Wed Feb 11, 2009 8:16 pm
Location: wrapped up under my duvet at home.

Re: Surgery over - how to make the hospital understand fibro?

Postby Vimsen » Sat Jan 12, 2013 9:36 pm

They want me to try walking tomorrow. I can sit with support now (for a short while) and stand for half a minute with help. Tomorrow they want me to try walking, but how do I explain to them why my feet simply won't work?
Some days are for living.
Others are for getting trough.
User avatar
Vimsen
UKFM Member
 
Posts: 54
Joined: Tue Sep 18, 2012 3:59 pm

Re: Surgery over - how to make the hospital understand fibro?

Postby shazq » Sun Jan 13, 2013 4:48 pm

Hi
The Docs & nurses should be able to see that you are not ready to go home yet, just make sure they all know that fibro will make your recovery slower than a normal healthy person and you might need extra help and extra painkillers.

:goodluck1: hope they listen to you. Hope you feel better soon. :hugs: :flowers:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
User avatar
shazq
UKFM Veteran
 
Posts: 11449
Joined: Wed Feb 11, 2009 8:16 pm
Location: wrapped up under my duvet at home.

Re: Surgery over - how to make the hospital understand fibro?

Postby Iceskatemum » Sun Jan 13, 2013 5:19 pm

Glad you are at least sitting up V,try lots of pillows around you for support I usually find that helps .
Most hospitals will ask you to try walking asap after surgery so that you minimise blood clots & other post op nasties. When you are up walking you can also get those "lovely" support stocking off ...I still remember the relief ....they made my legs so itchy.

Just remember that you are not trying to walk a marathon , a few times up and down beside your bed to start of with or half way up the ward with help. Its better to do little and often for the first day or so .
Good luck
Iceskatemum
UKFM Regular
 
Posts: 1599
Joined: Thu Jul 12, 2012 4:20 pm

Re: Surgery over - how to make the hospital understand fibro?

Postby millymoodoo » Mon Jan 14, 2013 10:24 am

Hi

Its so awful when you feel you are being pressurised into doing something that you are scared of doing because of pain. I am horrified at how the nursing staff have treated you. I did my nurse training in 1983 but i only practised until 1989 as i really wasnt cut out for nursing, i couldnt cope with patients being in pain and dying and as i was caring for terminal childfren it really cut me up. I also didnt feel that we as nurses were able to give as much care as i wanted to because we were so short staffed all the time so in the end i walked away from it and went into logistics lol!!!!! There is no need for nursing staff to be short with you but i also understand that they will be under pressure to get patients up and out ready for their next planned admission. If they were aware of your fibro before you had surgery they should have taken this into account and allowed extra days that your bed would be taken up.

I agre with other members either ask to speak to the ward sister or ask to see the dr who you are under and explain your feelings with them and tell them how scared you are annd dont be afraid to explain about the cats as they are part of your life and you know what they are like!! I dont think i would wait for the ward round to speak to the dr as they have a lot on when they come round and it also wont be quite as intimidating speaking to your dr before the round and then he can update everyone during the round!!! Do you live alone? If you do there is no way they can send you home if you cant do the most basic of things.

Just a thought you say you are going into rehab in a month!!! Would it be possible to bring this forward and you go into rehab whilst you are recovering from this surgery or go somewhere just until you are able to manage things on your own. If your pain is not under control it could be worth asking to speak to someone from the pain clinic as input from them would really help you. I had a hysterectomy when i was 29 but that was before my fibro days and i know how much i struggled with the pain then so i can fully understand how you feel and how afraid you must be. You are really going to need some help at home for at least the 1st 6 weeks as you are not going to be able to do much!!! Do you have family and friends that would be able to help?

Sending you big :hugs: and :goodluck2: with speaking to dr or ward sister
Milly xxx :-)
Never look down on anyone unless you are helping them get up!!! When life hands you lemons, make lemonade!!! Everyday is a gift which is why we call it the present
User avatar
millymoodoo
UKFM Member
 
Posts: 499
Joined: Sat Jun 11, 2011 4:14 pm

Re: Surgery over - how to make the hospital understand fibro?

Postby Vimsen » Tue Jan 15, 2013 2:33 pm

They won't send me home until ready. I've told them that my goals for going home, is being able to get up out of bed on my own, wipe my owm behind (seriously, I tried every angle, I can't reach without it hurting!!) and being able to walk on my own two feet.

I've had nothing more to do with the nurse who said the wrong things. I spoke to the night nurse about it, who was absolutely amazing, and she made sure someone else was my contact instead.

I like the doctor. She understands now how it is a bit of a mix of things, it's the fibro and surgery and a few other issues. So I've had a physical therapist help, but today I made it my priority to take a shower, which took so much out of me every fiber in my body hurts!

Short reply, but kinda out of it today pain-wise.
Some days are for living.
Others are for getting trough.
User avatar
Vimsen
UKFM Member
 
Posts: 54
Joined: Tue Sep 18, 2012 3:59 pm

Re: Surgery over - how to make the hospital understand fibro

Postby Sue1968 » Sun Aug 11, 2013 12:23 am

Hi everyone, just reading all of your problems after surgery makes my blood boil! I had my gall bladder removed around 6 yrs ago, I was admitted into the ward on a Sunday evening for planned surgery the following morning, I was on nil by mouth, didn't see the anaesthetist or consultant until around midday. I kept enquiring as to when I'd be going to theatre and I was told soon soon, so I sat patiently in bed, but I then decided to speak to the ward sister and she told me would be afternoon, so at this I exploded! So I could've had an early light breakfast and up of tea, I was starving. I had the surgery at 4 pm on the Monday afternoon and came round on the ward at 7.30pm, my dad and step mum were in my room, I wasn't allowed anything to eat or drink until the Tuesday morning, I was very badly treated by the staff on the ward. Well I was discharged on the Wednesday morning and sent to the discharge lounge...on my own! I cannot walk far either. They were shocked to see me back a week later with a bile duct infection and was in hospital with a dangerously high temperature, which a week earlier I'd mentioned, but was dismissed, I was told "you're the type to try and stay in hospital so you can be waited on hand and foot....we need the bed, no go!" I was in hospital for a further 6 weeks with the infection, almost meant I had to go into ICU, it was so high. I can say that I get a lot of this as I seem to be labelled as a hypochondriac which I'm NOT! I have numerous disabilities and I'd rather not be in hospital so I was furious! I understand where everyone on here is coming from. I try and avoid operations at all ost where possible because of the treatment I get...some nurses are lovely and very understanding. But if they are having a bad day they have to eep it to themselves.
Sue1968
UKFM Member
 
Posts: 85
Joined: Fri Jun 28, 2013 12:13 am


Return to Doctors & Health Services

Who is online

Users browsing this forum: No registered users and 2 guests

cron