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

(420 Posts)
ferry23 Mon 28-Jul-25 07:08:04

Some of you will know my health problem from my thread in Health about a paractice nurse not reading my notes and administering treatment against my wishes.

I'll not go back over the whole thing but suffice to say I've been living with a wound to my leg since before Christmas which just won't heal.

I do have a referral to the Vascular Unit but no idea how long that will be.

We are starting a new treatment today of trimovate cream which has to be applied every day for the first 5 days so I have to get to the surgery every day (about 3 miles away).

I've been going to the surgery initially twice a week since January and three times a week since beginning of June.

Lots of troubles with dressings slipping away from wound and bandages falling down or unravelling.

Although I'm told they're using the most absorbent dressings, within hours of a dressing change, fluids from the wounds have seeped through 3 layers of dressings and pads & the stockinette. .The volume is so great that it starts to pool around my ankle and the weight pulls the dressings down my leg. It look like I've got a tyre around my ankle - if this makes sense.

Once I get dressed it seeps through the trouser leg and often onto my shoe. If I get the angle slightly wrong, than even getting my knickers off can mean the knickers get pulled over the wet bandage and I then have wet knickers for the rest of the day. I can't go out as everything moves down my leg and anyway, it looks as if I've wet myself as the fluid seeps through my trousers.

I've just entered the next three weeks appointments with the nurse in my calendar and out of interest, I looked back to see when I actually went out socially. I've been out twice since the end of February.

Despite agreeing with one of the senior practice nurses that continuity of care and treatment by qualified nurses only is number 1 priority, I will be seeing 4 different people over the next couple of weeks, one of whom is a Health Care Assistant.

So I'm basically stuck at home staring at the walls sitting with a wet, cold, soggy mess of dressings and bandages around my leg and ankle. In considerable pain as the fluid is toxic and burns my skin as it collects in the dressing and rests on my leg for two or three days. I haven't been able to shower properly for months. The leg cover that you can get for showering is no good for my dressings.

I've now got to go through the rigmarole of trying to get myself dressed and into the surgery - having to go via the chemist to pick up the trimovate cream as they didn't deliver it to me on Friday and can't deliver until late this afternoon.

So my question is, am I being unreasonable to expect a better quality of life? I'm quite down in the dumps about it this morning as I've had this soggy mess of dressings, pads and bandage bunches up around my lower leg and ankle since Friday lunchtime. I'm not sure how much longer I can live like this.

Honest opinions please, if you think I should just suck it up then please say so. I genuinely would like to know if I really am being unreaonable.

Allira Sun 10-Aug-25 11:23:03

That's heartening to read, ferry23, wishing you all the best for Tuesday.

As I thought, my surgery hadn't referred me for weekend dressing change with District Nurse.
However, that left me speechless (but not surprised!). 😡

petra Sun 10-Aug-25 11:23:20

Ferry23
Having had a friend who suffered as you have your story brought me to tears.
I have told several people your sad/ less sad 😉 story.

blue14 Sun 10-Aug-25 11:38:26

I'm so pleased to read this update. Thank you ferry.
Such a relief for you to know that, at last, it appears to be healing well.
This really should have happened months ago!

Hope all goes well on Tuesday.

Grannynannywanny Sun 10-Aug-25 12:01:23

Great news! I hope you go from strength to strength now ferry23.

cornergran Sun 10-Aug-25 13:30:17

Sounds positive ferry. There seems to be a tunnel and light. I’m just so sorry and crosd in your behalf that you’ve had to fight for adequate care.

Jaxjacky Sun 10-Aug-25 13:36:28

Good ferry may your healing continue, then the sorting out.

Bellanonna Sun 10-Aug-25 14:30:38

Phew. It’s been a long journey ferry. I’ve been following it from the start but thankfully you now seem to be getting somewhere with the logistics and with the obvious improvement in your condition. Onwards and upwards now 🙏🏻

JaneJudge Sun 10-Aug-25 14:35:38

This sounds much more positive ferry smilethanks

Charleygirl5 Sun 10-Aug-25 14:42:39

ferry it is an absolute disgrace a year of your life has flashed by and you were unable to do much.

How did you get the wound? I only ask because the surgery will be telling you that ulcers can take many months to heal and some never quite get there.

There is light at the end of the tunnel and wowee, hospital transport. Better late than never.

Patsy70 Sun 10-Aug-25 14:58:15

That is such encouraging news ferry, and about time too. All the very best for Tuesday. 😊💐

ferry23 Sun 10-Aug-25 15:16:53

Charleygirl5

ferry it is an absolute disgrace a year of your life has flashed by and you were unable to do much.

How did you get the wound? I only ask because the surgery will be telling you that ulcers can take many months to heal and some never quite get there.

There is light at the end of the tunnel and wowee, hospital transport. Better late than never.

How did I get the wound - well, stupidly really.

I got up from a new dining room chair which was a very different shape from old ones. I must have knocked it with the back of my legs- it went to fall backwards, I went to stop it but I was too late - but managed to scrape the bottom of one of the legs down my shin. It didn't seem that bad - put a plaster on.

Next day I thought it needed a larger plaster but found a large adhesive dressing which I thought would do the trick. Pulled that off a couple of days later and ripped all the skin from the side and back of my leg...and so the saga started. And I can't even blame anyone else!

DamaskRose Sun 10-Aug-25 15:17:06

So pleased to read this update Ferry, at last! Hope all goes well on Tuesday. 🤞🏻

Shelflife Sun 10-Aug-25 20:14:41

I have been keeping up with this appalling story ferry! Haven't responded much because there are people here who know far more than me about your situation. My heart is warmed by the support and genuine concern you have received on GN . I am so relieved that at last you are able to feel a little more positive - you have and are experiencing
such trauma and have and contine to be strong. Thinking of you and wishing you well.

newnanny Sun 10-Aug-25 21:44:34

Surely you should have a district nurse come each day to change the dressing and in the meantime keep your legs elevated as much as you can. Ask your GP if district nurs can come to you as getting in 3 miles is probably making it worse.

Charleygirl5 Mon 11-Aug-25 08:50:00

newnanny I agree, it is not rocket science, but that GP surgery appears to be totally useless. Ferry is no longer 21 and this experience would age anybody.

I think it is disgraceful that ferry is expected to cover taxi fares so regularly. The odd one in an emergency, maybe.

Some surgeries, like my previous one, had volunteer drivers, but not for me because I lived in a different postcode!

Retroladywriting Mon 11-Aug-25 16:50:19

Good luck tomorrow Ferry smileshamrock

Patsy70 Tue 12-Aug-25 20:41:17

How did your appointment at the wound clinic go today,, ferry? Hoping all went well, with the transport too. 🙏

blue14 Wed 13-Aug-25 09:26:28

How did the appointment go yesterday ferry?
Was the hospital transport reliable?
I hope the wound is continuing to heal.

Retroladywriting Wed 13-Aug-25 09:38:34

Hoping that all went well yesterday Ferry (while also worrying a bit because you've not updated us ... are you ok?)

GrannyGravy13 Wed 13-Aug-25 10:06:42

Just popping in, slightly concerned that ferry hasn’t posted.

ferry23 Wed 13-Aug-25 10:08:55

Hi everyone (well, those who haven't got too bored with my leg blog!)

The appointment at the wound clinic went very well.

There are 4 specialist nurses there and whichever one I see will follow the same treatment plan - which was agreed upon by the nurse and me after much discussion. So that's one box ticked.

After listening to my sorry story, the nurse said that what she was hearing is that I was disappointed, frustrated and felt that I'd been let down. Another box ticked.

She said that from now, for the purposes of getting my leg healed, I draw a line under the past 8 months and treat this as a new start - purely from a mental health point of view. She said that the clinic and I are now partners and we will work together to get the best outcome for me.

The wound is shallow, healing and clean. It is the shallowness of the wound that's has been causing so much pain (I won 't go into medical details!). She offered me alternative medications to the morphine but as it's been a lot easier in the past few days I decided to try and keep off heavy duty pain relief if I can. She was surprised I was on antibiotics as she said there's no sign of infection - but in fairness to my surgery, they did take a swab and only prescribed them as a result. I must assume that the antibiotics plus the trimovate cream has zapped any infection.

She has used compression bandages - goodness knows how many layers - but they're not overly tight which is good. She also supplied me with what she called her "Gucci Special" shoe which I could get over the bandaging in order to get home. An uglier contraption I cannot imagine but serves its purpose.

So once a week there until they're happy to discharge me.

It seems there's a disconnect between services run under the NHS and those run under the CCG. The surgery doesn't have access to the wound clinic and it was only because of the excellent district nurse who first came two weekends back that I got the successful referral. It seems she fought very hard for me to be accepted there and I shall be eternally grateful. Whilst I understand the surgery couldn't refer me, I wish they'd encouraged me to self refer, it may have saved me a lot of distress and themselves a lot of appointments!

The thought of not having to get to the surgery every day or almost every day has made me feel better regardless of any medical improvement.

I was encouraged by the knowledge and attitude of the nurse, and the clinic seems to have lived up to it's very good reputation. I'm trying to be muted in my optimism as I've been let down so much since last December but I really do feel that a corner has been turned. smile

I will post updates as and when there's something significant to say. Thank you all - I can't say that enough times. When I first posted I was in quite a scary place and you all dragged me out of it and made me feel I was not in this alone. You're all stars!

Once I get to thinking about how I'm going to handle the debacle of the last 8 months I shall start a new thread for your input grin

Grannynannywanny Wed 13-Aug-25 10:36:11

I’m so pleased to read your update this morning ferry. That all sounds very encouraging. You’ve had a hellish few months and I sincerely hope the only way is up from this week. Wishing you all the best.

Bea65 Wed 13-Aug-25 10:57:08

[ferry23] very positive newssmile

CariadAgain Wed 13-Aug-25 11:14:43

"...draw a line under the last 8 months"......hmmmmm....

I'm interpreting that as they're panicking a bit and wondering a bit whether you are going to put in an official complaint.......and trying to head you off the pass.

The memo has gone out I guess .....of "Quick.....act nice to her.....try and get her to draw a veil over the last 8 months...".

Well- I guess at least they are taking you seriously finally by the look of it.......because they are starting to get a bit scared....

ferry23 Wed 13-Aug-25 11:22:44

CariadAgain

"...draw a line under the last 8 months"......hmmmmm....

I'm interpreting that as they're panicking a bit and wondering a bit whether you are going to put in an official complaint.......and trying to head you off the pass.

The memo has gone out I guess .....of "Quick.....act nice to her.....try and get her to draw a veil over the last 8 months...".

Well- I guess at least they are taking you seriously finally by the look of it.......because they are starting to get a bit scared....

Quite the opposite actually.

She made a point of trying to differentiate between the purely medical side of things and then the whole debacle of the last 8 months.

It appeared to me that she felt I would be fully justified in taking things further. Obviously she wasn't going to outwardly bad mouth my surgery but she made a good job of allowing me to read between the lines.