I’m a little fed up keep coming into hosp with the same prob, have pneumonia again, the strain on my heart is not good. Not sure how long it’s going to last.
The docs can’t make their mind up as to treatment options, 2 docs 2 treatments. Wish they would make their minds up, stupid people.
However, one of the docs was brilliant and understood both APS and Lupus pleasant surprise.
What he said did make sense, he said ignore the figures with regard to oxygen levels as with the Lupus it could be anything, also my left lung is full of something, and my right lung is gradually filling up.
The docs haven’t a clue what it is, there best guess is it’s some kind of allergic reaction due to lupus.
My INR is all over the place due to medication and they wanted to lower the range, now that’s not going to happen, I did suggest they phoned Dr been at Tommies, they soon shut up.
However, I must remember not to be so sarcastic but
I can’t help myself I’m not going to sit here and take be silent😁😁
Love and hugs
J
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All that was done last year, I know I have heart failure and my lungs are knackered. I have been having palliative care, I think it’s about to time I gave myself a mental kick and accepted what is and what will be
I understand you have a difficult time. Good to be with us here. Wish I could help you in some way here from Stockholm but you know I can not. I will think of you though, that I can do.
I was in Stockholm a couple of weeks ago it’s a lovely place and I loved all the islands coming into Stockholm. The hours of sunlight was a bit weird, very odd tho I think it’s prob something you get used to.
I do admire your positive and pragmatic attitude. Medical care is becoming more complicated as our modern life (and numbers) have spawned new viruses and bugs, rising autoimmunity and cancers, etc. And it often seems that us autoimmune patients are at ground zero for medical mysteries. Hope you have some good books, magazines and binge watching opportunities. And sleep. We're all cheering for you.
I agree with lure2 with the echo and Doppler also a contrast ct scan if u are able to take contrast fluid by iv. All three will give a good picture of what’s going on also as bad as this sounds a biopsy of the fluid in lungs to see if it is bacterial. Good luck and God speed on your recovery and healing.
You have given me a valuable insight into what happens to us APS people, when complications arise. Yes, it is complicated.
But pneumonia is nothing to sneeze at (joke).
There are 3 types...bacterial, viral and fungal.
Different treatment strategies for each.
And the bugs which invade us are also complicated.
I am assuming the hospital tried all the antibiotics (only effective for the bacterial pneumonia).
I am assuming the hospital ruled out other things like pleurisy, cancer, COPD, via Xray and Cat Scan.
Research shows that 34% of bacterial pneumonias result in major heart complications within 90 days. (Google).
As if we didn't have enough to worry about.
Ok for some home remedy ideas....treat with fluids, teas(lemon,ginger, honey chai, ginseng), and essential oils like (Breathe Easy, Lemon, peppermint, clove, eucalyptus. Yogic breathing exercises every day.
Be careful with ginger, as it can alter the INR... I believe it can raise it if I remember correctly. Maybe just a tiny pinch! ( I had it swing my INR once...)
Hope you recover quickly- and I hope you can still travel as you planned. I’m looking forward to hearing about Russia! If you can’t- that’s ok , too. Creative, interesting, and intelligent people do figure out creative alternatives in the face of obstacles. That’s part of the creative process. That’s part of the problem solving.
It may not be a ,” now “ kind of thing. Pneumonia is exhausting, even for ,”normal folk!”
I really like the idea of Kerstin’s yogic breathing. What a great idea to me mindful, in the moment, relaxed, and ... gently exercise/ expand the lungs and get them rehabilitated .
I am glad you have one of the doctors there with some knowledge of the two conditions, outside of hospital, do you have a regular consultant for your Hughes Syndrome/APS? Is that who you were suggesting they ring? The infection/inflammation is the problem they need to be dealing with in hospital, not lowering your INR as set by your main consultant. I hope you can get in touch with them for some timely input. MaryF
It’s Dr Breen at Tommies and yes I will ring Tommies.
KellyInTexas I did manage to get on holiday , became ill on the last two days but better than the first two days!
Russia was certainly different, they have no sense of humour and at immigration they asked if my bro was in the military. He isn’t, but he is six ft 6, shaves his head and is fit. We thought he was going to end up in a Gulag.
Amazing architecture, rivers and canals, you can see parts of communist Russia tho these are gradually disappearing. Lovely river cruise where we were served champagne and canapés with a string quartet, very civilised.
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No Leg now
letter received today
Could this be APS
Summary from Kings Hospital
