AIBU - Is it fair for me to live like this?

Chocolatelovinggran

Sorry to hear that you are in this situation, Mamma66, and I wish you, too, a speedy recovery.
How are you today, ferry?

After such optimism on Monday I'm afraid things have gone downhill. Since my dressing change yesterday the fluid discharge is ridiculous and the burning pain is just dreadful.

I haven't managed to sleep at all and at sometime during the night I banged my head against my glass conservatory doors because I just didn't know what to do with myself. In the end I was a bit sick.

It was painful when I left the surgery yesterday and putting pressure on my foot makes it worse, so I was seriously worried about driving home - I was grinding the gears and I stalled the engine because I just couldn't press the clutch down enough. Fortunately I chose to come home via the country route thus avoiding dual carriageways and 2 roundabouts.

Sorry I must sound as if I'm constantly complaining which is why I thought I wouldn't post unless someone asked. Which you kindly did.

Sorry to hear that you are in this situation, Mamma66, and I wish you, too, a speedy recovery.
How are you today, ferry?

I understand what you’re going through more than most. I am currently having daily dressings on my leg and it’s not much fun. On a practical note I use an inco sheet or puppy pads under my leg , particularly when I’m in bed, so that I am not constantly wet. I know it’s miserable but I do think it’s important for your mental wellbeing to try to focus on any positives, even if they’re few and far between. It honestly does help. I know it’s hard, but it does make a difference. Wishing you a speedy recovery 💐

Sorry to hear of your woes. Hope you are keeping your leg elevated and are taking water tablets. It may seem nevervending but these things can heal with time.

I'm sorry you having so many problems with your leg ulcer @ferry23. When I worked in a district nursing team, I used to see patients in a similar situation. Bed rest would be recommended so a patient's legs are as high as their heart, to reduce the fluid. Understandably, most did not want to do this and the issues continued. Only when they were admitted to hospital and they spent time in a hospital bed would their legs start to show a reduction in the leakage, and, healing. Leg ulcers can be present for years as underlying health issues also affect healing rates.

So sorry. I don't think you are being at all unreasonable. Make a fuss. Tell your GP how awful you are feeling. My neighbour has home visits from a nurse to dress a wound on her foot that will not heal for a long time now. My husband had home visits from the district nursing team to change his catheter while he waited for a prostate operation. We are in Scotland.

How did you get on with the doctor today Ferry?

I’m so sorry you are going through this nightmare. I think you are very brave and my heart goes out to you xxx

I had a bad leg wound, that wouldn't heal. Not as bad as yours. I ended up taking antibiotics and prednisolone, which cleared it up quite quickly. The first cream, and dressing they were putting on, I turned out to be sensitive to, and was making it worse. Maybe check with your doctor, if a course of antibiotics would help, and a different cream.

petra

Morning ferry.
I can feel how frustrated and sad you are from reading your post.
What I’m going to suggest might sound bizarre but I do know someone this treatment worked for. She was in your same situation for 2 years.
It’s leeches.
I listened to this program on radio 4 some time back.
It’s worth a listen.
www.bbc.co.uk/sounds/play/b07m5gwr

I was going to suggest the same.

How do you manage to get to the surgery for all these visits. Expecting yoh to travel with a lump of bandaging fallen down to your ankle seems rather unprofessional if not just plain uncaring. You say the cream is toxic and burns your skin for tgat aline I'd be telling tgem you are scared to walk about when the bandaging has slipped and will not be attending until it is fixed. I know it seems rather dramatic but the way you are being treated is just awful.

Please let us know how you get on. My mother had several nasty wounds to the front of her leg on the bone. She had frequent visits from district nurse. They just changed the dressings, no special creams. Her skin was very fragile by this stage as into her late 90's. Another wound that was on an arm about to have a plastercast applied had a manuka honey dressing put on it under the plaster and all was well when cast removed weeks later.

OMG this is disgraceful! If it’s mandated that no one but a qualified nurse should attend to your wound then it seems to me that you ought to be visited at home daily to have your dressings attended. It makes economic sense, as much as anything, because the current situation isn’t helping either your physical or your mental health. Your predicament is utterly, utterly unacceptable and unfair.

No- it is totally unfair that you are living like this!!
Your health centre sounds awful- I’m sure there is more they could do - eg putting you in touch with services/ charities that could help you with transport, get prescription items delivered to you etc.
Have you spoken to the practice manager?
Also would be worth trying your local MP, Parish Council, County council

Age concern, Red Coss etc may well be able to help! You need someone to argue your case for you!

I’m sure others are here will know of other sources of support?

Good luck!

ferry23 - so sorry for your situation. You are not being unreasonable to think this should be managed in a more professional way. Frankly, I would send a formal letter of complaint to your GP, to the local NHS Trust, and to your MP. The community nursing service should be involved to give your wound chance to benefit from the treatment (your bandages wouldn't fall down on the way home) but also because you could remove the dressings before they arrived so that at least some air could get to the ulcer (if that's what it is).

How very kind of you.

I do remember your last post and, after having a similar wound myself, suggested a zinc based dressing that worked for me. Did your nurse try that?

I'm very sorry you are going through this. I suggest contacting your GP and asking them if it's possible to expedite your referral. I would also ask if you could have the out of hours contact details of the District Nursing service, who may be able to help you when the dressing has leaked. If all all fails contact PALS, I would be keeping a record of the problems you have encountered which will be the evidence you need to support a complaint.
I wish you well

Friends are never to be found in these circumstances, you should have a better life but it rarely happens. As I've mentioned before I've no social life whatsoever because of a skin condition. Sometimes we can't change things. Wish you well.

kjmpde - they've taken 4 swabs, the latest one being yesterday.

Thanks Blinko, I shall be stting off for the surgery shortly so it will be interesting to meet a GP at last!

ferry23

I did speak about inititally seeing someone privately with the GP yesterday. He wants to look at it today and depending on the outcome of that he will do one of 3 things

- attempt to expedite the referral by speaking to the appropriate person in the vascular unit

- talk to me about private treatment

- advise me to stick to the new treatment for three weeks and then review the situation

I don't want to jinx anything, so I'm almost reluctant to say this out loud, but, apart from a little episode of pain about 10 last night which 2 paracetamol zapped quite quickly, I've had no pain since the trimovate cream was applied yesterday morning. I've had little sleep due to the constant pain - usually waking after an hour or 2. Last night I was able to sleep for over 5 hours.

This is the first time in around 5 months that I haven't been in almost constant burning pain. Many times I've sat and cried with the pain.

There is some dampness but nothing like I've recently been experiencing and I'm back for the cream and a dressing change this afternoon.

We shall see.

I'm thinking of you, Ferry23 and keeping everything crossed that this trimovate treatment works its magic. Along with others, I don't think you've had the best deal so far. Pleased that your GP has eventually stepped up. Here's hoping they take charge and ensure you get the best from now on.

Has the fluid from your leg been tested for anything? I ask as my friend's mother had a vaguely similar problem and it was a serious issue. At the very least you should be told the probable cause of this long term issue .
My understanding is that all attempts have been topical (apart from antibiotics) but is there a nutrient which is missing in your diet ? Vitamin K helps clotting so there maybe something similar for fluid issues ?

Thanks everyone.

Just to clarify. I live alone, I have no siblings and neither of my children live close by. I do have a cousin and my Godson nearby and they have helped, but they are all working people with their own lives to lead, plus my cousin's husband snapped his achilles tendon a few weeks back and has only just come off crutches himself. I hadn't lived here long before this happened so I hadn't had a chance to make any friends.

I am not considered totally housebound so I cannot be referred to the District Nurse Team.

I have been to the wound clinic who liaised with my surgery about dressings and sent me back there.

I am perfectly capable of making a stand for myself, I'm usually the one called upon for support!

I know that leg elevation is important - but there is a wound on the back of my leg and this is the most painful one - as soon as I rest my leg on something the pain increases until I can't bear it. I've tried various shaped pillows and other contraptions so that part of my leg isn't resting on anything but so far, none of them have worked.

I'm not being negative about any of your suggestions - far from it! There's been a lot of really good ideas and advice here and I'm really grateful.

I just thought if I added a bit of meat to the bones it would make my situation clearer.

I think you have been treated very badly, you should have had a nurse coming in every day. I saw a programme about maggots being used to clean and heal ulcerated legs, they were bred in ultra sanitised conditions and know it sounds yucky but it worked. Keeping everything crossed for you.

Do you have someone strong minded you can call for help?

I would be taking you to hospital and insisting they take good care of you.