General Medical issues thread

[JohnK]

Sounds like you should just quit flying.

And then what?

 

[suze2000]

Maybe get better? Chronic pain, chronic infections, chronic anxiety. JohnK I think your body is trying to tell you something... :-|

 

[JohnK]

Maybe get better? Chronic pain, chronic infections, chronic anxiety. JohnK I think your body is trying to tell you something... :-|

Thanks for the suggestion but I get worse if I sit around doing nothing. Have to keep moving and doing the things I enjoy.

By the way the chronic pain, chronic infections, chronic anxiety are all due to my immune system issues. There is no cure. It could have been worse but I'm still alive. Immune-suppresants help a little.

 

[AnnaB]

Thanks for the suggestion but I get worse if I sit around doing nothing. Have to keep moving and doing the things I enjoy.

By the way the chronic pain, chronic infections, chronic anxiety are all due to my immune system issues. There is no cure. It could have been worse but I'm still alive. Immune-suppresants help a little.

I think you are doing the right thing, live life while you can and do what you want and what your body allows you to. I see way too many instances where people wait for this or wait for that, work-work-work and save only to get it taken away from them way too soon.
Live the life you dream of, not just live to work.

 

[JohnK]

Live the life you dream of, not just live to work.

I was sort of getting ready to retire but now with a 6 month old daughter will gladly work a little longer to ensure she has every chance to study and make something of her life.

As for me I need to play as much golf as I can now because I don't know how much longer I can play. I would hate to be sitting around later and thinking I should have played more.

Also want to travel maybe some cruises along the way and I don't want to that person that stays on the boat because they have difficulty moving and walking.

So I will continue to push myself harder and harder.

 

[Pushka]

So. First day of Lupus International conference done. Attended an Exhibition which didn't have quite the information I was hoping for.

Attended a series of lecturers that posed the question 'do we do enough for our patients?' Rheumatologists are (?empirical evidence) the happiest specialty.

Why? 1. They treat multiple organs - the whole body can be impacted from Lupus - hair, skin, heart, kidneys, blood, brain, joints, so they treat the whole body. 2. They (have to) form long relationships with their patients. 3. They get more hugs than other specialists. 4. They are regarded as the 'Sherlock Holmes' of the medical system. 5. There is another one but brain fog.

There is a discrepancy between patient concerns and medical concerns for the impact of lupus and this impacts on patient compliance.
Specialists top five concerns with SLE patients are 1. Stroke. 2. Heart attack. 3. Kidney disease. 4. Clots. 5. Something else . Patients top five concerns are 1. Fatigue. 2. Joint pain. 3. Immobility. 4. Skin. 5. Something else

(See my issues here ). I tend not to agree that these are my top patient concerns. My fear is stroke and another clot. I'm thinking there is a lot of opportunity for very specific research about this as I suspect experience with a lupus illness will impact greatly on fears about the illness. Most don't experience DVT/stroke. They do experience the fatigue/joint/skin stuff.

The U.K. Model of patient care is outstanding. They are very client focused. The US system - well, its very very sad.

Ethnic populations - African Americans, Asians, Indians and so on have a greater percentage of their population at risk of lupus. Like sickle cell anemia which protected people at risk of Malaria (so a natural selection kind of thing) I wonder is a 'self destruct' immune system had some other kind of protective function. Why our family is so impacted (4 generations of women that we know of) remains a mystery.

They are also looking at a reclassification of the whole auto immune range of illnesses - something like a spectrum - so that RA - sjogrens - SLE - APS - scleroderma etc are all different expressions of the same thing or groups of things.

Our specialist chaired the meeting last night. As she opened she said that she hoped there were patients present. She looked up and she saw three - of her patients. She's also chairing the session this afternoon which is the one I'm most interested in - APS with one of the 'discovery team' from the UK as speaker. I'm pleased that she is involved as APS is not well known - it's a 'newish' discovery and they are still negotiating the treatment regime for people with antibodies and clinical event. Warfarin or the newer anticoagulants. I do not want to go on warfarin but stay put on rivaroxaban but in theory it's not actually approved yet but still in research trials in the U.K.

Tomorrow is patient day - completely free for any patient which is a brilliant initiative and modelled on UK practice. We paid $50us as patients to attend all the conference.

 

[love_the_life]

Sounds like it is interesting, even though it may not have addressed the issues you are mainly concerned with. The idea of a spectrum is a good one IMO as there is such a wide range of conditions and this would allow a much more holistic and realistic way to treat the disease.
Hope today is productive.

 

[blackcat20]

So. First day of Lupus International conference done. Attended an Exhibition which didn't have quite the information I was hoping for.

Attended a series of lecturers that posed the question 'do we do enough for our patients?' Rheumatologists are (?empirical evidence) the happiest specialty.

Why? 1. They treat multiple organs - the whole body can be impacted from Lupus - hair, skin, heart, kidneys, blood, brain, joints, so they treat the whole body. 2. They (have to) form long relationships with their patients. 3. They get more hugs than other specialists. 4. They are regarded as the 'Sherlock Holmes' of the medical system. 5. There is another one but brain fog.

There is a discrepancy between patient concerns and medical concerns for the impact of lupus and this impacts on patient compliance.
Specialists top five concerns with SLE patients are 1. Stroke. 2. Heart attack. 3. Kidney disease. 4. Clots. 5. Something else . Patients top five concerns are 1. Fatigue. 2. Joint pain. 3. Immobility. 4. Skin. 5. Something else

(See my issues here ). I tend not to agree that these are my top patient concerns. My fear is stroke and another clot. I'm thinking there is a lot of opportunity for very specific research about this as I suspect experience with a lupus illness will impact greatly on fears about the illness. Most don't experience DVT/stroke. They do experience the fatigue/joint/skin stuff.

The U.K. Model of patient care is outstanding. They are very client focused. The US system - well, its very very sad.

Ethnic populations - African Americans, Asians, Indians and so on have a greater percentage of their population at risk of lupus. Like sickle cell anemia which protected people at risk of Malaria (so a natural selection kind of thing) I wonder is a 'self destruct' immune system had some other kind of protective function. Why our family is so impacted (4 generations of women that we know of) remains a mystery.

They are also looking at a reclassification of the whole auto immune range of illnesses - something like a spectrum - so that RA - sjogrens - SLE - APS - scleroderma etc are all different expressions of the same thing or groups of things.

Our specialist chaired the meeting last night. As she opened she said that she hoped there were patients present. She looked up and she saw three - of her patients. She's also chairing the session this afternoon which is the one I'm most interested in - APS with one of the 'discovery team' from the UK as speaker. I'm pleased that she is involved as APS is not well known - it's a 'newish' discovery and they are still negotiating the treatment regime for people with antibodies and clinical event. Warfarin or the newer anticoagulants. I do not want to go on warfarin but stay put on rivaroxaban but in theory it's not actually approved yet but still in research trials in the U.K.

Tomorrow is patient day - completely free for any patient which is a brilliant initiative and modelled on UK practice. We paid $50us as patients to attend all the conference.

Theres a chance you might have seen my boss talk...

 

[Pushka]

Theres a chance you might have seen my boss talk...

Interest being immunology? Mathew?

This is the session I'm hanging around for today.

 

[drron]

You left out our indigenous population that is of greater risk of SLE.
And you don't mean Mathew V do you?

 

[Pushka]

You left out our indigenous population that is of greater risk of SLE.
And you don't mean Mathew V do you?

Indeed. Correct. Our Indigenous population is also at great risk. But why? Why these populations?

BC hasn't confirmed anything yet.

Brilliant last lectures tonight on APS. Particularly from Munther Khamashta who worked with Prof Hughes in the U.K. after whom Hughes/APS was named. His response to sero-negative auto immune diseases for people with obvious symptoms is that we simply aren't clever enough yet to have discovered/tested for all possible antibodies. It's kind of weird sitting there as patient and have all these brilliant minds talking about your illness and taking photos and notes of the lecture material. The large meeting room was packed.

People can test positive for the antibodies but not show clinical symptoms (clot/pregnancy loss) but they are pretty much stumped as to whether or not to treat these people because they have to do trials of 1,000 people before they can make the treatment of warfarin - rat poison - his words - accepted as preventive medicine. And they've found they cannot get 1,000 people to stay long term on 'the rat poison'.


On the other hand it's not so nice to hear the major complication of lupus leading to death are clots. And more people die from clots than breast cancer.

Tomorrow is an early start. Niece 'fell in science love' with a brilliant mind from Scotland or maybe Wales and he is 'meet the professor' at 7.30am tomorrow morning. Then some really good sessions and then she is presenting the patient's journey at 1.30pm.

Then we are off to the airport - we all managed to get U flight on the Qantas and it's my sister in law's first ever flight in Business. Several nice hours to be spent in the Business lounge prior.

 

[Quickstatus]

more people die from prostate ca than from breast ca.

Worse, the mortality rate from malaria is about double? that of breast Ca. So why is breast Ca so much a focus for the celebrities and the perpetual charity event organisers?

this is just mortality, I have not touched the severe morbidity due to malaria

 

[love_the_life]

more people die from prostate ca than from breast ca.

Worse, the mortality rate from malaria is about double? that of breast Ca. So why is breast Ca so much a focus for the celebrities and the perpetual charity event organisers?.......

I agree. As a BrCa 'survivor' get really annoyed with the glossy spreads about how XX has had a fight for life with breast cancer etc etc. I think I just did it and managed to get through - no fanfare needed thank you

 

[Pushka]

I agree. As a BrCa 'survivor' get really annoyed with the glossy spreads about how XX has had a fight for life with breast cancer etc etc. I think I just did it and managed to get through - no fanfare needed thank you

And you were quite young I believe. I get the same thoughts over bloody Lance Armstrong.

 

[love_the_life]

I can empathise with that. It's almost like they trade on an illness or similar at times to get ahead. Though in LA's case things came crashing down around his ears (as a result of different behaviour).

 

[JohnK]

In August I was given the all clear. Minimal scarring of the liver with no visible signs of cirrhosis. That was with Fibroscan and Ultrasound.

Yesterday I was told that they plugged the numbers into a different model and I am on the higher side of minimal for the scarring and the only way to find out is with a Liver biopsy. I don't want to know. I'm not doing a liver biopsy.

So back to 12 monthly ultrasounds.

 

[blackcat20]

Interest being immunology? Mathew?

This is the session I'm hanging around for today.
View attachment 94614

David. And yes, Immunology. He presented on Monday.

 

[straitman]

I agree. As a BrCa 'survivor' get really annoyed with the glossy spreads about how XX has had a fight for life with breast cancer etc etc. I think I just did it and managed to get through - no fanfare needed thank you

Likewise for me with Prostrate Cancer.

I survived with out the public hoo haa. Let's just keep trucking along folks.

 

[love_the_life]

Likewise for me with Prostrate Cancer.

I survived with out the public hoo haa. Let's just keep trucking along folks.

Maybe we are part of the tough generation, Straitman. If you get sick or a setback, you just pull up your socks and deal with it. None of this chest beating, why me, life is so unfair!

Oh, took my BP (after a bit of a talking to by the rarely visited doctor the other week) and it was normal so no need to revisit a medico

 

[Cossie]

We'll probably have to cancel Japan in June and Europe in August as the boss wants a new knee asap.

Meanwhile, 44 days to go, it's already a bit smelly even though I flushed water through it the other day.

From what I have been reading online, I may be in for another 6 weeks after this one comes off. (I can understand why doctors don't like the internet.....)