Swollen Arms & fingers

[susanbennett100]

Is urine retention and swollen arms/fingers a symptom of moving from advanced to end stage PSP and kidney failure? With an ADRT in place, except for reversible conditions, I am unsure how best to deal with this. David is totally unable to communicate in any way and has no mobility. He eats well but coughs/chokes on all liquids even though thickened and has refused a peg. Any advice welcome! Sue

[AnneandChris]

Dear Sue

Please speak to your GP and/or District nurses if you are in the UK. He may have a UTI.

My husband started choking badly on food and drink this time last year and developed several recurring chest infections. He too did not want a PEG and couldn't speak. Sadly it was the beginning of the end, so my heart goes out to you.

Please also take care of yourself at this difficult time.

Hugs

Anne

[AJK2001]

Agree with Anne, talk to a doctor, it could be something simple that can be put straight. If he hasn't passed urine in 24 hours you need to get a Dr involved today, don't leave it until Monday. If the bladder is full they may need to cathertise him to expel the urine but you don't want the urine overflowing the bladder & building up in the kidneys. If it's something else, that needs to be dealt with.

It sounds like you are well organised with the ADRT, make sure any Dr you talk to knows that's in place & they can advise accordingly. Ask questions as to what outcome is with & without treatment. You know best what level of intervention David would want.

I found the ADRT a god send with Mum, we had a locum Dr who wanted to send her hospital even though he couldn't give me a good reason to send her, as any test he was suggesting could be done at home but once I showed him the ADRT he changed attitude completely and agreed home was the best place for her & hospital would be frightening & unecessary.

She was able to stay at home as she wished & be looked after by people she knew, which made such a difference.

My thoughts are with you as I know what a tough time it is and it must be even more difficult in these Covid times. xxx

[LuisRodicioRodicio]

Hi suisanbenett100!

In our case, the final stage is characterized by sporadic but increasingly frequent irregularities in temperature, blood oxygen level, pulsations, blood pressure, and WC and urine. These controls are made and recorded daily. Skin problems are also more frequent. It is normal for the patient to lose weight and sleep more than 15 hours / day.

In our case, all the food is passed through the mechanical arm so that it becomes pure consistency and we apply it with a small plastic spoon that detects excess temperature or a food syringe, always in small doses.

We insist on vegetables, seasonal fruits, fruit yogurts, custards, ice creams, puddings, soft tortillas, eggs cooked after 5 minutes.

Hydration is ensured with a subcutaneous needle with which an extra 500 ml / day is introduced drop by drop, alternating physiological serum and glucose serum. Flavored jellies are another interesting contribution of liquid. Between the water contained in the meals and the serum we supply the patient around 1 liter of water / day.

We had not swollen arms/fingers. Each patient is different.

I hope the information was useful

.

Hug, luck and courage.

Luis

[Richard33 in reply to LuisRodicioRodicio]

Luis,

You are always so full of knowledge and a good example to all of us carers

Richard

[LuisRodicioRodicio in reply to Richard33]

Thank you. You are very kind.

Hug and luck.

Luis