I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Lymphoedema And other complications

User
Posted 29 Sep 2018 at 19:39

Hello, completely new here and a little unsure of some of the terminologys.

I’m here because I’m very concerned about my dad.

My Dad is now just coming up to 7 weeks post op.

My Dad had radical prostrate removal and some lymph nodes.

It’s a long story, my dad was discharged 10 days after surgery. When he was discharged his right leg was swollen so much it looked like an elephants leg, his stomach was also very swollen. He couldn’t really walk and was shuffling instead.

A few days later he had his catheter removed even though he didn’t pass any urine, they let him come home (nurse checked his pad and found it wet and said this was good) About 5 days after my Mom was getting my Dad dressed as his mobility got worse and realised he had slept for over 12 hours and his pad was dry. My mom phoned the ward my dad was on and was told to bring him to A&E.

 

For the next 20 hours my dad deteriorated even more and was diagnosed with Lymphoedema, pneumonia and sepsis. He ended up in Intrnsive Care. He nearly died.

My dad really battled and made it through. He had his catheter refitted and had 2 drains inserted one each side of his tummy.

we are now 4 weeks after and he is still in hospital.

he has his drains still and has this very strange substance coming out that no doctor can seem to identify.

weve been told it’s meldrew down to crystals in the fluid, but when we google nothing comes up. It’s very sticky and white (similar to chewing gum)

we have now found out that my dad also has MSSA.

Its not on his notes on the hospital computer but apparently it’s in his written notes.

As a family we feel like we are being lied to, the doctors always dodge around answering our questions. The nurses aren’t helpful and feel like you have to nag at them. His main surgeon seems to be avoiding us.

Thank you for reading this, any feed back or help is more than welcom.

 

User
Posted 29 Sep 2018 at 22:25
Do you mean he has MRSA? If so, ask the doctors whether he has that on his skin or inside his body.

The white stuff sounds like pus but it is not always caused by infection ... does it smell?

I think you may have misheard the meldrew thing.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Sep 2018 at 23:39
I can sympathise with the sepsis, pneumonia and swelling as the same thing happened to me absolutely awful.

Make sure they are culturing the infection and have identified what antibiotics will tackle it - this should be bread and butter stuff but I am afraid you cannot rely on NHS teams to always do the right thing. They should be able to confirm what is going on, if they can't don't let it go.

Show Most Thanked Posts
User
Posted 29 Sep 2018 at 22:25
Do you mean he has MRSA? If so, ask the doctors whether he has that on his skin or inside his body.

The white stuff sounds like pus but it is not always caused by infection ... does it smell?

I think you may have misheard the meldrew thing.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Sep 2018 at 23:39
I can sympathise with the sepsis, pneumonia and swelling as the same thing happened to me absolutely awful.

Make sure they are culturing the infection and have identified what antibiotics will tackle it - this should be bread and butter stuff but I am afraid you cannot rely on NHS teams to always do the right thing. They should be able to confirm what is going on, if they can't don't let it go.

User
Posted 30 Sep 2018 at 00:17

Thank you for your respons, the full name is Methicillin-sensitive Staphylococcus aureus, it’s related to MRSA but a lot more treatable  (so the doctors say)

my dad has drains on now (last 4 weeks) so we are unable to see if it has a smell. My dad has had a lot of issues with the tubes going into his drain as this stuff keeps clogging them up.

I also thought at first that I had not heard correctly so I repeated it back to the doctor and he repeated that yes he had said mildew. 

User
Posted 30 Sep 2018 at 00:27

They have been growing samples from my dads urine and bloods. Yesterday they also repeated the swab testing. 

 

My my dad is very worried they are going to take it out on him if I stir them up to much. I’ve explained to him that if we don’t make a stand they could discharge him like they did before and he really wasn’t ready back then.

 

The nurses seem to be more preoccupied with what to cook for dinner and how to style their hair for going out.

Their is so much going on with my dad, I don’t trust his surgeon for 1 second.

The whole family feel that something happened during his surgery that they are trying to cover over, plus covering up their mistakes of originally discharging him.

Their is to many mess ups.

User
Posted 30 Sep 2018 at 07:55
I understand your dad's fear, being seriously ill in hospital is a lonely, scary place.

Sounds like he has a fungal infections too if he has "mildew".

His culture results should be examined by a microbiologist consultant too and that should produce a recommended drug therapy. Ask if this has been done and what drugs he is on to treat the MRSA and the fungal infections.

What happened with his pneumonia? Is he having physio for that (They gave me a device that encouraged deep breathing which helped resolve the pneumonia).

Make sure the nursing staff are doing his observations especially kidney function. When my legs blew up it was because my kidneys had packed up, the nurses missed it because I had no observations for 24 hours..

Be polite and informed so you can tell if you are being bullshitted, don't assume all nurses are angels - they are not!

User
Posted 30 Sep 2018 at 08:10

DL

Sorry that you find Yourself in this position. You could speak to someone in the hospital's PALS department, I recently had a need to use them and they have been very helpful. 

 

Thanks Chris

User
Posted 30 Sep 2018 at 08:24

Hi  You do really need to fight your dad's corner for him at the moment. Perhaps you need to speak to PALS and voice your concerns. We as a family have had times when we were scared to leave loved ones in hospital without one of us being there to see what was going on and intervene if necessary.

We appreciate the staff are " stretched"  but yes there is excellent, good, bad and mediocre as there are in any workforce but that doesn't mean it shouldn't be brought to someone's attention there. We have witnessed people being left to soil themselves despite repeated requests from the patient and other people's visitors for a bedpan. When the nurses were interrupted from their chat about Coronation Street  at the nurses station they were most put out.

Best of luck to you and your family.

Ann

 

 

 

 

User
Posted 01 Oct 2018 at 19:51
Can I ease one concern? I have had lymphoedema (in my case affecting my left leg and belly) for over six years since my bladder, prostate and 18 lymph nodes were removed. It is a b****y nuisance and I wish I didn't have it but it is not life threatening. Your Dad's other issues are in a different category. Keep on his case!

AC

 
Forum Jump  
©2024 Prostate Cancer UK