42nd day in hospital, now swollen feet and ankles...?

[Loopiloo]

Some of you may have read my threads concerning my husband Henry breaking his hip, having surgery, and now in hospital 6 weeks tomorrow, since 23 November. The threads have rather long titles... and rather long posts from me...

1. First day at assessment centre, then first night in hospital
2. Broken hip, surgery, anaesthetic, drastic changes in dementia. Possibly ITA?
3. Continent before hospital, now possibly incontinent in hospital??"

I have been most grateful and comforted and helped by all who have responded to my posts. Especially as most were very long posts from me. But perhaps it is time to close them now, I have gone on too long.

Unless I start another with updates. Not sure....

Anyway, this is another question (the others started out their long winded ways by asking a question!).
~~~~~~~~~

On Boxing Day I thought Henry's right ankle of the leg operated on looked slightly swollen, but wasn't sure, so slight. Then thought perhaps due to the surgery, although that had been about 30 days earier.

Henry has slim feet and ankles.

I didn't visit over the New Year weekend as no buses running, and apart from the possible slight swelilng of his right ankle, nothing looked amiss.

Today I was concerned to see that both of his ankles were considerably swollen, the right one more than the left. He had no socks on and his feet were obviously stretching his prevously neat and supportive slippers. Due to the swelling he would not have been able to wear socks with the slippers.

I asked a nurse who shrugged and said often that happens when in hospital, not being as active as at home. When I said they were not like that on Friday she shrugged again and said no more. I turned away in frustration.

When I left I saw the staff-nurse and spoke to her. She said much the same as the other. I said I have been in hopital several times, and for long periods, and my ankes were never swollen. I asked if his heart was alright, she said yes. Then what was causing the swelling? Again she said it sometimes happens in hospital. They could try to get him to elevate his feet but he might not do it. I said well you could try, she smiled and walked away.

I have to say that this particular staff-nurse does seem to me to have an "attitude" concerning Henry having dementia. When he spent the first three and a half weeks in our local hospital the nurses may have had little understanding of dementia, but they were kind towards him. This one is cold, and I obviously get up her nose always asking her questions - politely but firmly.

Something must be causing his feet and ankles to swell.

I wondered if anyone else had experienced a dementia loved one who has been in hospital for some time and developed swollen ankles and feet? If so, did they know what the cause was?

Thanks.

Loo

 

[Grannie G]

I have heard of swelling when people become less active Loo but I don`t know enough about it.

But the nurses do and I think you and Henry are being treated quite shabbily.

The only answers I know are formal complaints and the way you`ve been posting you could write a book.

I`m really sorry you are being fobbed off every time you ask a question. xx

 

[TinaT]

I would phone and ask to speak to the ward sister. Ask her can she please arrange a meeting between yourself and the consultant in charge of your husband's care as soon as possible. Do not be fobbed off!

When my father was in hospital we asked for a meeting with his consultant. We were told that the only time we could speak to him was when he did his ward round but he could start as early as 8am and they could not tell us what time he might be leaving the ward.

My brother and I had the day off work, arrived at 8am and sat beside my dad until 11.40 when the senior registrar came to us. We didn't see the consultant after waiting all that time but we did raise our concerns with the registrar who did actually take measures which we had asked for.

Hope this helps but please do go with your 'gut' instinct and persue this. As you say there must be some reason for the swollen feet and there must be some medical intervention which can aleiviate this.

Ignore the attitude problem from the nurse and put it down to her ignorance and not your correct and proper concern for your husband.

xxTinaT

 

[jenev]

Hi Loopiloo did you feel your husbands ankles? When you press on them did they leave and indent? If there was it means he is not getting rid of enough fluid and this is called oedema. This can be rectified by elevating the legs and following blood tests they may have to start him on a fluid tablet. Does he have any heart problems? I would go straight to the doc or the sister of the ward.

 

[Nan2seven]

Hello, Loo,

Brian's feet and ankles also swelled up while he was in hospital but it was not linked in any way with his dementia: it was due to a build-up of potassium levels, I was told, due to his very poor kidney function. (As low at one point in hospital as 10%.) He was having frequent blood tests done and was put on frusamide to combat the fluid retention - and then lactulose to combat the resulting constipation. He was due to come out of hospital on 14th October but he was then not allowed to leave until the levels were brought down. There are other reasons for fluid retention and I think you should press for some answers. Try ringing the ward sister in the morning.

Love, Nan XXX

 

[PollyP.]

Hi Looploo

Sorry to hear that you are having problems with the hospital staff. You might find that your hospital has a PALS team (Patient Advice and Liaison Service) - we received a great deal of help from them a couple of months ago, when my brother in law broke his hip. They arranged to meet up with my sister in law and were so very helpful. Worth contacting them, I think most hospitals have a PALS team now.

Love
Pauline

 

[Izzy]

My mum suffers from oedema. Her feet and ankles can be really bad. She is on furosemide apt water retention and the dose gets increased if it gets worse. She is supposed to keep her legs raised but doesn't often do this. Her skin is paper thin and if she knocks her leg and breaks the skin the water just pours out. When this happens the district nurse comes and dresses her leg. I think you should make a fuss until they do something! x

 

[sleepless]

Hello, Loo,

I would definately do as Tina suggests.

This is important, you need to know what is going to be done.

I feel so angry for you at the way the nurses are treating you.

Henry has dementia -- you are his voice, his ears. You must ask the questions he would be asking himself if he didn't have dementia. When will hospital staff learn this?

Be strong, Loo.

Love from sleepless x

 

[tuatha]

Happened to my Mum when she was in hospital, the same response from the nurses, it sometimes happens. When I brought her home she could not put her shoes on. She was already on 1 Furosemide 40MG in the morning. The hospital prescription was to take 1 twice a day. A call to my GP sorted it, his advice was to take 2 in the morning, within 5 days her ankles were down. Like you I was always asking questions, and caught them out a couple of times. I was not popular, but if it meant better treatment for my Mum I can live with that.

 

[Loopiloo]

I just popped on before bed incase there were any replies to my post and my thanks to all of you for responding so promptly.

Nan, particularly you writing about Brian's build up of potassium level due to poor kidney function. Henry has Diabetes Type 2 which has been a big problem the six weeks he has been in hospital. That is one possibility as early last year our GP added a new tablet to his diabetic medication because a blood test showed a very slight kidney change.

His medication in hospital has been messed about with a lot, plus when his glucose level has soared they have given insulin injections.

It could well be due to his kidneys, although I realize it could be other things also. But I certainly don't agree with the two nurses who casually said it often happens to people in hospital.

It just so happened that when I visited today a lady doctor and a young male were in Henry's room, first doctors I have encountered, and she was "charming". (Also asked a lot about how his dementia was at home so I was able to inform her of the vast changes and set backs since being in hospital. She thanked me and said my information was most helpful. But perhaps she just has "the gift of the gab". (Yes, cynical, but with reason from my own health experiences.)

She did say they had got his diabetes under control (but I have heard that before over 6 weeks). They have changed some medications and stopped the insulin injections. She said it would not be a good thing to have him go home requiring insulin injections. I agree.

Unfortunately it was after the consultant left I saw his badly swollen ankles. Went out to see if she was around, told snippily that the doctor was very busy.

Today for the first time, in this hospital, the name of his consultant is above Henry's bed. I asked the staff-nurse the name of the consultant, to confirm it matched the name above the bed, which it did, and I wrote it down.

Not to go on, I have taken in everything everyone has said and I shall phone the ward in the morning and ask to speak to the sister. If I get no joy I will ask when I can speak to the consultant.

Thanks you so much.

Loo xx

 

[FifiMo]

Some people often believe that because someone's ankles are swollen that it is a result of excess fluid when in fact it can occur due to dehydration and sometimes people think the soluition is to drink less rather than drink more. This could be the reason, coupled with inactivity, for his ankles being swollen that way. A reason why this happens is because there is seemingly no lymphatic drainage below the knee area and it is normally by movement of the feet and calf muscles that the fluid is pushed back up the leg and then drains away. Having recently visited someone in hospital i could understand dehydration being an issue as it was absolutely sifling with no fresh air circulating in the ward I was in whatsoever.

Treatment is normally through the use of diuretics which have been mentioned but you could also maybe ask if someone could perhaps come and do some manual lymphatic drainage for him. This is a very light kind of massage that directs the fluid back up to the nearest lymph drainage points on his legs etc. It is extremely effective particularly if someone isn't able to remember to keep their feet elevated.

Kind regards

Fiona

 

[Necion]

Hi Loo, please keep posting, we want to know how you & Henry are getting on....however long or short the posts are!

I'm sorry you still have cause for concern about the treatments, and as for the nurse....she needs to realise she's supposed to be part of a team, and so totally wrong that she disrespects you & Henry the way she has.

You've had great advice here, so I do hope the next visit is better for you both. Good luck with the consultation, as has been said, don't be fobbed off.

Thinking of you both Loo, and wishing you well.
Love, Necion. x

 

[Skye]

Dear Loo

My John suffered from swollen feet and ankles (oedema), usually worse on one side than the other. He aleways had his legs raised in a reclining chair. I was told it was a sign of heart and kidney failure.

John's dose of frusemide was increased for a while, then brought back to normal when the swelling reduced. It's important to increase fluid intake, and Henry should have regular blood tests while he is on the increased dose. I also massaged his feet every day.

I know all this is difficult when someone is in hospital, John was in a nursing home, and was given the care he needed. But it shouldn't be impossible in hospital, in fact it should be easier to check bloods etc.

There's no excuse for you being fobbed off. Now you have the name of Henry's consultant, I'd ring and ask to speak to his secretary. Ask her to make an appointment for you to discuss Henry's condition. She should do that, though you may find the appointment cancelled if the consultant has an emergency. You just have to persevere!

Love,

 

[maryw]

Hello Loo, You've been given loads of really good advice. Just wondered if you'd checked his hands too? That was where I first noticed the swelling with my Mum. I also received the "brush-offs" in hospital when I raised the subject. Of course you want to know he is receiving the right treatment as you love him and care for him. Somehow or other you do have to find the energy to be persistent, and if it fails do contact PALS.

 

[Helen33]

Dear Loo,

I have only just come across this thread and I am glad that you are able to use Talking Point to suit your own needs at this very stressful time for you. It doesn't matter how you post as long as you find yourself feeling supported.

I can't offer much other than to say that I believe that you should not be having to put up with some of these attitudes and you have a right to detailed information about your husband.

Alan did have very slim ankles all his life and he was prone to leg ulcers which we kept under control for years by proper care and management. When Alan was in the care home for that week his ankles became very swollen and they didn't seem to care and said "it happens". I said "well we need to find out why and do something about it because the last thing that Alan needs is a leg ulcer". I had emphasised in his support plan that Alan would need to have his legs elevated at least once a day other than bedtime but they did not take this seriously. I told them that it was not an 'optional extra' but 'essential' to prevent further care needs which a leg ulcer would certainly create

Keep on ploughing forwards Loo to getting the answers that you need.

Love and my very best wishes

 

[Skye]

Loo, I meant to say, and forgot, Cosyfeet has wonderful socks and slippers for people with oedema.

http://www.cosyfeet.com/comfort-soc...HGi6D7n7LPgPuzO#/comfort-socks/softhold-socks

I bought the soft-hold socks for John, they don't dig in anywhere, so don't restrict the circulation. The spippers are worth looking at too. They open right out at the front, flap over and fasten with velcro. They were the only ones John could wear.

 

[Loopiloo]

lymphatic drainage - lymphoedema - oedema

Thanks Fiona for your interesting post. The puzzlng thing about Henry's swollen feet and ankles is that after 6 weeks in hospital this has only now happened. Fine on Friday, swollen by Monday.

I understand what you wrote about lymphatic drainage as I have a condition called lymphoedema caused by lymphatic cancer - lymphoma - (Non-Hodgkin's lymphoma) which first presented in my right groin, later to a lesser degree in the other, before going walkabout elsewhere. It damaged my groin lymph nodes and lymph vessels, blocking the flow of lymph fluid, and caused a severe swelling in my right leg. (later to a lesser degree in my left leg). My leg was the size of a massive tree trunk, I couldn't believe a limb could become so huge.

Not a well known condition or well understood by medics. (About 30% of women who have breast cancer surgery and lymph nodes removed can develop lymphoedema in their arms.) My GPs knew nothing about it. I had to discover what it was for myself, which took over a year, also that it could be treated.

I have 2-3 weeks NHS treatment every six months, mainly compression bandaging toes to top of thigh. The therapist wont do the manual lymphatic drainage massage due to the lymphoma but I sometimes do some myself. I also wear a special lymphoedema made-to-measure thick compression stocking (which I loathe!), renewed every six months, made in Germany. This controls the swelling although it gradually gets worse again, until the next treatment.

When I had a hip replacement 6 years ago (due to avascular necrosis (AVN); bone death due to interruption of blood supply to bone and also linked to the cancer, thought to have been caused by radiotherapy) my lymphoedema swelling drastically worsened and took about 18 months to very slowly improve.

It is possible Henry's groin nodes have been affected by the surgery causing the swelling but I hope not as lymphoedema is not curable. However, both his feet and ankles are swollen so I am doubtul it is that. Unless the swelling started to move up his leg but hopefully not. I would like to know what IS the cause of his swelling.

BTW, diuretics are not good for lymphoedema but can help other types of oedema caused by heart, lungs, kidneys etc. If the cause of Henry's swelling was found then diuretics might help. Also wearing the compression garment for other oedemas, (different from mine) But no one is interested.

Sorry about such a long post about myself. Thanks for your contribution, Fiona.

Loo xx

 

[Loopiloo]

Thanks Necion, you are so kind, supportive and encouraging and I do appreciate it, and your interest.

Love
Loo xx

 

[Loopiloo]

Thanks, Hazel. See my later post for update.

I shall note frusemide. Sounds like the same med Izzy also mentioned her Mum being on. Also Nan's Brian.

Was John's oedema caused by heart or kidneys? I should know as I have read many of your posts, but for the moment cannot remember.

Yes I know Cosyfeet, Hazel, as I can only wear one type of their shoes. Rather cheap ones though as I need to buy two pairs at a time. In one size for my better left foot, and another in a larger size for my very bad right foot.

Thanks for reminding me, I know the type of slippers you mean and if Henry is going to have this additional problem long-term then I will buy him those.

Love
Loo xx

 

[Loopiloo]

Pals

Mary, no Henry's hands are not swollen, only his ankles first, now his feet as well.

I can't find out about PALs at these hospitals but will check again.

Love
Loo xx