Hi everyone,I have just spent a week ... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Hi everyone,I have just spent a week in hospital fighting phuemonia which I had in both lungs.

popshaw21 profile image
8 Replies

I was in the ICU unit for 3 days and was very close to death,The treatment i recieved in the ICU unit was brilliant and i can't thank the nurses enough.When i was put on a ward to recover the care was poor,and i had to keep asking the nursing staff to give me fresh water everyday but the nurses kept forgetting and there were alot of problems with medication as the nursing staff kept mixing up my medication which was mainly the fault of the doctors who should of checked with my rhuematologist,there seems to be a lack of communication between all the departments who have been treating my Aps....well thats my moaning about the NHS over with,I'm just relievied to have beaten the phuemonia and I'am recovering at home and starting to feel much better...

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popshaw21
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MaryF profile image
MaryFAdministrator

Hi there, welcome back, thank goodness you were on the ball enough to chase it all up, please have a speedy recovery. Mary F x

Jane-Martin profile image
Jane-Martin

So glad you are beginning to feel better. I know how awful pneumonia is, I also was admitted with it a few months ago. I have bronchitis now, which is how it started last time! We have private health care here in Sth Africa, so care is usually good. But, not one nurse had ever heard of ASP (Hughes) and they were not to clued up on Lupus either! They let you keep and take your own chronic medication. I always try and give out leaflets to the staff on both conditions, when I have stock.

Important to rest, so get plenty.

jessielou profile image
jessielou

Hi Popshaw,

I hope you're feeling and better n glad you're back home! Sadly too much time taken up by admin by hospital staff and not enough left over for care! I've had pneumonia so know it takes time and rest hon, please rest up and relax, give yourself time to recover.

I have to say my recent stay in AEU at Burton Hospital was very good, the staff were lovely, I kept my own meds, doc wouldn't interfere, thankfully!! I sensed the frustration of nurses at not having time to nurse!

Get well soon, gentle hugs love Sheena xxxx :-) :-) :-)

Glitterwitch profile image
Glitterwitch

Hello, sorry to hear about your experiences with the NHS, but so glad you were well enough to be able to take control of your medication. When I was in hospital last year I had several run-ins with the Junior Doctors who tried to give me the wrong Warfarin dose as they had not checked what my target range was. This was very frustrating as I was admitted with blood clots due to wrong dose of Warfarin prescribed by my GP!

I guess the moral of the story is - always check and then double check that the medication is correct before taking it.

Hope you heed the advice and rest up and get better soon. xxxx

InSpain profile image
InSpain

Hi popshaw21. I’m so sorry to hear about your recent stay in hospital. It comes to something when not only do we have to use all our energy to recover but using it to fight for the right to receive the correct medication too is unbelievably sad but so true for many of us. I'm sure we could all tell a tale or two here about our experiences. I hope are now on the road to a speedy recovery and that you get well really soon! xxx

Hi Popshaw,

Glad you are better and home! Dont forget to rest.

The problems with medicin and nurses/doctors we have also in Sweden. My 89 years old father got the neihbours medicin and he died because of that.

Kerstin

MrsBL profile image
MrsBL

Hope you feel a lot better very soon, take care x

CaliforniaGail profile image
CaliforniaGail

Seems like there's lots of pneumonia within our community.

I had it when I initially was diagnosed APS, with multiple clots in both lungs.

The Xray looked like a blizzard in my chest, and I was angry that I had previously been sent home the prior couple weeks with antibiotics by two different doctors, one after the other, diagnosing "bronchitis" and "pleurisy" for the chest pains without taking a chest xray.

Have patience, Popshaw. It took about 6 months for me to feel like my my breathing and "fatigue" level were back to normal. Then exactly a year later, another December hospitalization with pneumonia. So now with any cough, cold -- I take it real serious and go to the ER for a chest Xray if there's any doubt. YEA! I made it thru this past holiday season well, but I feel like I'm Howard Hughes in searching for any germs in the area. And I'm glad I got my flu shot back in October. Hang in there and know it takes rest and time to recover.

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