Crown Princess Mette-Marit diagnosed with chronic lung disease: October 2018


If you have answers, please help by responding to the unanswered posts.
I'm a bit suprised that some people think that Ingrid-Alexandra will do this or that because her mother is ill. Perhaps she won't want to do any of these things because she will just be so worried about her Mum. She is a little girl not some royal robot.
 
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how can the disease attack other organs exactly?

this is why i am a registered organ donor and think more people should consider organ donation.

yes, my guess is that 'jumping the line', even if she is the crown princess will be extremely bad PR, although surely in private hospitals queues are shorter, so a transplant could perhaps be quicker to take place? i am uneducated with respect to whether private hospitals even do transplants in norway, my initial guess is that only public hospitals would get organs anyway.
Well, I'm unfortunately not a medical-expert, so I don't know! ? - Only saying what I heard on Norwegian television.
But the Crown Princess’s personal doctor, Professor Kristian Bjøro at the Rikshospital, said: ''Fortsatt gjenstår noen undersøkelser og utredning, blant annet for å få avklart om dette er en autoimmun prosess kun i lungene eller om det er andre organer som er involvert, eller kan være involvert.''
Translated to: ''Some studies and examinations remain, for example, to clarify whether this is an autoimmune process only in the lungs or if there are other organs involved, or may be involved.''

And when it comes lung-transplantations: As I wrote in post 55, it only takes place at Rikshospitalet! ?

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It's now matter of hospital but of organs. No matter where you have the surgery. There is only so many Urbana and there is a waiting list. Norway seems to have a shortage. Private health wouldn't help get get organs first.

As for other organs it wpuld mainly be the heart. The right side of the heart can be damaged with time as it has to pump harder to get oxygen to areas.
As the lung-tissues becomes scarred and thicker, it's more difficult for the lungs to transfer oxygen into the bloodstream. And as a result, the brain, heart, and other organs don't get the oxygen they need to function properly.
But that's not what the medical-experts meant, I think. - Because they said that there is a form of fibrosis who can attack other organs, at the same time, in addition to the lungs. ?

Well, this is getting very complicated, so I think I'll wait for the results of the remaining studies and examinations, because I'm pretty sure the court will issue a statement when they know more.
 
Also, I would assume that the waiting list is determined by how severe the need is for your transplant. That determines where you are placed on the list. It’s determined by medical need not who you are or how much you can pay.
 
Really shocking news. I am really sad for Mette-Marit and her family. They are so brave to go public with these news. It has to be so hard to be a public person in times like these.

Of course I wish Mette-Marit and her family all the best and lots of strength.
 
I think maybe her sister and her brothers can help her. Or not?

Unfortunately, unlike other organs, I don't believe it's feasible/possible for a living person to donate their lungs. Meaning unless one of her siblings suddenly died in such a way that left their lungs undamaged and were signed up as wanting their organs donated after they passed, they can offer MM little more then emotional support.
 
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I thought she was seriously ill
 
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Wow.

Like everyone else I am totally surprised.

I would imagine this is why she has had health issues in the past, and while this is not good news, at least the doctors know what the issue is and they can take the necessary measures.

My thoughts and prayers are with the Crown Princess and her family.
 
Unfortunately, unlike other organs, I don't believe it's feasible/possible for a living person to donate their lungs. Meaning unless one of her siblings suddenly died in such a way that left their lungs undamaged and were signed up as wanting their organs donated after they passed, they can offer MM little more then emotional support.

It is possible though not easy. It's called a love transplant. But it requires donation from two people. A donor can only safely donate one love of their lung. the recipient would have both lungs removed, and a lobe used to replace each. Such transplants aren't common as finding two donors with compatible lung tissue who are in good enough health to donate is not common. I am not sure if thus has ever been done in this type of fibrosis. It has been done cystic fibrosis patients in the past.

Well, I'm unfortunately not a medical-expert, so I don't know! ? - Only saying what I heard on Norwegian television.
But the Crown Princess’s personal doctor, Professor Kristian Bjøro at the Rikshospital, said: ''Fortsatt gjenstår noen undersøkelser og utredning, blant annet for å få avklart om dette er en autoimmun prosess kun i lungene eller om det er andre organer som er involvert, eller kan være involvert.''
Translated to: ''Some studies and examinations remain, for example, to clarify whether this is an autoimmune process only in the lungs or if there are other organs involved, or may be involved.''

And when it comes lung-transplantations: As I wrote in post 55, it only takes place at Rikshospitalet! ?

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As the lung-tissues becomes scarred and thicker, it's more difficult for the lungs to transfer oxygen into the bloodstream. And as a result, the brain, heart, and other organs don't get the oxygen they need to function properly.
But that's not what the medical-experts meant, I think. - Because they said that there is a form of fibrosis who can attack other organs, at the same time, in addition to the lungs. ?

Well, this is getting very complicated, so I think I'll wait for the results of the remaining studies and examinations, because I'm pretty sure the court will issue a statement when they know more.

It's not that the form of fibrosis could attack other organs. Fibrosis simply means scarring of the soft tissue. When it's in the liver it's referred to as cirrhosis for instance.

The concern is the cause of the fibrosis. There are different causes. The concern seems to be that she had an auto immune disorder. If she does, the auto immune disorder may cause issues for other parts of the body. The fibrosis may just be a symptom of that disease.

Fibrosis itself doesn't spread. But it causes stress on other organs. The main one being the heart bring damaged and not being able to pump to other organs.
 
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(..)
I thought she was seriously ill

:previous: She is! But, unfortunately for her, it is an invisible illness. This leads to people thinking there is nothing wrong with her. She has been harshly judged by people prior to the announcement of her diagnosis and even after it would seem.
 
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:previous: She is! But, unfortunately for her, it is an invisible illness. This leads to people thinking there is nothing wrong with her. She has been harshly judged by people prior to the announcement of her diagnosis and even after it would seem.


I hope Mette-Marit gets a lot of rest and that the Norwegian public won’t be so critical during her absences due to illnesses (it makes sense now why she performed a small number of duties in the past). I have 22q deletion syndrome, which is an invisible disability affecting my nervous system, so sometimes I struggle to walk and can’t stand on public transport. This has led to many people try to argue with me on public transport, because “I don’t look disabled” or “I look just fine”. Most people believe you’re perfectly fine until you have missing limbs or visible aspects that prevent you from a normal life. It’s incredibly infuriating and I sympathise with Mette-Marit greatly on this matter - it really grinds my gears when people say “but they don’t look disabled”. Such judgements mentally can take a lot of toll on those who are suffering from invisible illnesses too. With me; it’s gotten to the point where I’ve had to order a disabled badge from the doctors that I can use on public transports so I can peacefully use priority seats.
 
I hope the rest of her life, no matter how long, is spent surrounded by the loving support of her family, friends and countrymen.
 
Did she have this illness for some time or has it only recently become a problem/been diagnosed? I seem to remember that she was nervous of flying, and that she had I think some kind of neck pain that also meant she could not work or travel at times.. but Im not sure if this was something separate from this illness, which seems to be very serious and possibly life shortening...
 
I remember when they were after their wedding in Salt Lake City for the Winter Olimpic and when they came home, she was seriously ill with her lung. She was also in hospital for a while. It seems she has this problem for years. And that she smokes, made it sure more worse... I am very sorry for her, for her kids, family and friends. ��
 
but was that her illness that she has now, or was it a separate illness? She has apparently had pneumonia and other health problems, but I don't know if they are relatied to her present condition..
 
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So with this MM needs a full lung transplant or would it not help?
 
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.

Speculative posts and comments about the Crown Prince Couple's fertility have been deleted.
 
Thanks Countessmeout! :flowers:
It is possible though not easy. It's called a love transplant. But it requires donation from two people. A donor can only safely donate one love of their lung. the recipient would have both lungs removed, and a lobe used to replace each. Such transplants aren't common as finding two donors with compatible lung tissue who are in good enough health to donate is not common. I am not sure if thus has ever been done in this type of fibrosis. It has been done cystic fibrosis patients in the past.
Yes, fully possible, but (as you say) not easy! - And most people who receive lung transplants from living donors have cystic fibrosis, although I've read (somewhere) about recipients with Pulmonary Fibrosis as well.

More information about living donors here:

Lung transplant - NHS.

WHAT IS A LIVING LUNG DONOR? - Halachic Organ Donor Society.

BTW: Also important to state, that in Norway, living donors are only used in the case of Kidney transplantations.

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It's not that the form of fibrosis could attack other organs. Fibrosis simply means scarring of the soft tissue. When it's in the liver it's referred to as cirrhosis for instance.
1. Know what ''fibrosis'' means, of course, having read about it for days! - And know that it doesn't spread (never said that it does either). ?
2. Well, one of the pulmonary-experts talking on TV2 News Channel, said: ''Det finnes en type fibrose som kan angripe flere organer samtidig'' (''There is a type of fibrosis that can attacks multiple organs at the same time''), while another expert said: ''Det kan ramme flere organer på en gang'' (''It can hit several organs at once'').
That's why I wrote this in post 63:
But that's not what the medical-experts meant, I think. - Because they said that there is a form of fibrosis who can attack other organs, at the same time, in addition to the lungs. ?
And I'm pretty sure that both you and me (since we've both done our research) understood that they probably meant ''an underlying disease that can lead to fibrosis on multiple organs at the same time,'' and not that the fibrosis flies around the body and attacks organs! :lol:
Which was why I described it as a disease in post 55:
But according to medical-experts that Norwegian-television has spoken to, they ''don't see this as a very likely alternative for her,'' especially not if the disease has attacked other organs in her body (something her doctors don't know yet).

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The concern seems to be that she had an auto immune disorder. If she does, the auto immune disorder may cause issues for other parts of the body. The fibrosis may just be a symptom of that disease.
Well, I should be aware of that too, I think. - Especially since I translated the statement from the court in post 21. ?
BTW, The Crown Princess's doctor, Professor Kristian Bjøro at the Rikshospitalet (The National Hospital in Oslo), said this to NRK: ''Noen typer lungefibroser kan være betinget i miljømessige eller livsstilsmessige forhold. Det er ikke tilfellet ved den typen som vi mener at kronprinsessen er rammet av. Her tror vi det dreier seg om autoimmunitet. Det er en betegnelse som sier at det er kroppens immunforsvar som angriper eget vev og kroppens egne celler.''
Translated to: ''Some types of pulmonary fibrosis can be conditioned in environmental or lifestyle-related conditions. That's not the case of the kind we believe the Crown Princess is affected by. Here we think it's about autoimmunity. It's a term that says it's the body's immune system, which attacks its own tissues and the body's own cells.''

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But it causes stress on other organs. The main one being the heart bring damaged and not being able to pump to other organs.
Well, perhaps we should just say it like this: The alveoli and the blood vessels within the lungs are responsible for delivering oxygen to the body, including the brain, heart, and other organs. As lung tissue becomes scarred and thicker, it is more difficult for the lungs to transfer oxygen into the bloodstream. As a result, the brain, heart, and other organs don't get the oxygen they need to function properly. In some cases, doctors can determine the cause of the fibrosis, but in many other cases the cause remains unknown. When there is no known cause for the development of pulmonary fibrosis (and certain radiographic and/or pathologic criteria are met), the disease is called idiopathic pulmonary fibrosis (IPF).

BTW: I can understand if you find me a bit annoying, but that's just one of my qualities, you know! :flowers:
 
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With this disease being a slow progressing one, the medical profession is coming up with new therapies and treatments that may be able to treat Mette-Marit's lung fibrosis in a better way. I don't think its been mentioned but there are inroads with stem cell therapy for patients with MM's diagnosis. Its early stages yet in clinical trials but is leading towards perhaps being a viable method of treatment in the future.

https://www.lung.org/our-initiatives/research/about-our-research/stem-cell-therapy.html
 
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And then to some other posts:
For me, this answers one or two questions. People have been very harsh on Mette-Marit when it comes to her workload which I thought was odd because she comes across as a loving wife and mother and being lazy is at total odds with her persona.
I hope Mette-Marit gets a lot of rest and that the Norwegian public won’t be so critical during her absences due to illnesses (it makes sense now why she performed a small number of duties in the past). I have 22q deletion syndrome, which is an invisible disability affecting my nervous system, so sometimes I struggle to walk and can’t stand on public transport. This has led to many people try to argue with me on public transport, because “I don’t look disabled” or “I look just fine”. Most people believe you’re perfectly fine until you have missing limbs or visible aspects that prevent you from a normal life. It’s incredibly infuriating and I sympathise with Mette-Marit greatly on this matter - it really grinds my gears when people say “but they don’t look disabled”. Such judgements mentally can take a lot of toll on those who are suffering from invisible illnesses too. With me; it’s gotten to the point where I’ve had to order a disabled badge from the doctors that I can use on public transports so I can peacefully use priority seats.
Well, The Crown Princess (although mostly CP Haakon) has been criticised for a lot of things by the Norwegian media, but (with the exception of some Danish/Swedish journalists) I've never seen anything about her workload.
BTW: So sorry to hear about your struggle, HereditaryPrincess!
And ''people trying to arguing with you on public transport, because you don’t look disabled,'' is just so RUDE and SO UK (even seen some people in London, who could barely walk, being yelled at).

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And to Denville & fortimo:
Well, her doctors seem to think that both the pulmonary fibrosis and many of her previous illnesses can be down to an autoimmune disease-process in her body.
And when it comes to her smoking: Well, she stopped after she was diagnosed with pneumonia in 2002, although she is still known (and photographed) as a ''party-smoker or occasional smoker.''
But as her doctor said in the court-statement: ''There is broad consensus that it is not related to environmental or lifestyle-factors, which is the case with other more common types of pulmonary fibrosis.''

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(..)

So with this MM needs a full lung transplant or would it not help?
Difficult to say before we have the remaining studies and examinations! - But read post 54 to 64. ??
 
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I remember when they were after their wedding in Salt Lake City for the Winter Olimpic and when they came home, she was seriously ill with her lung. She was also in hospital for a while. It seems she has this problem for years. And that she smokes, made it sure more worse... I am very sorry for her, for her kids, family and friends. ��

she still smokes? i thought she gave that up some years ago. her face does not look like a smoker's face (who usually have quite bad skin and 'carved' cheeks, both of which are not the case for MM, who has a lovely complexion and a full face).
 
I think a "smoker's face" develops on people who smoke a lot. My late aunt had such a face and she smoked heavily. You don't neccessarily have those features when you smoke maybe once or twice a month.
 
While smoking certainly doesn't help, I doubt the illness was developed because of it. Autoimmune illnesses can be caused by various reasons, eg going through a stressful period in life, it can even be inherited. I almost knew nothing about it until my mother died within 6 weeks because of autimmune hepatits. She never drank alcohol apart from a glass here and there for festivities, so it came as a shock to us. A transplant might have helped but she died of organ failure before it could come to this, the illness progressed very quickly. It basically came out of nowhere.

I feel for Mette Marit and hope she has many years ahead with life quality. We are all in god's hand, but in addition to that she has access to the best doctors around, I hope this makes a difference. She's far too young for such an illness what is really tragic.
 
she still smokes? i thought she gave that up some years ago. her face does not look like a smoker's face (who usually have quite bad skin and 'carved' cheeks, both of which are not the case for MM, who has a lovely complexion and a full face).
Well, as I wrote in post 80: She stopped after she was diagnosed with pneumonia in 2002, although she is still known (and photographed) as a ''party-smoker or occasional smoker.''
But as her doctor said in the court-statement: ''There is broad consensus that it is not related to environmental or lifestyle-factors, which is the case with other more common types of pulmonary fibrosis.'' ??
 
And then to some other posts:


Well, The Crown Princess (although mostly CP Haakon) has been criticised for a lot of things by the Norwegian media, but (with the exception of some Danish/Swedish journalists) I've never seen anything about her workload.
BTW: So sorry to hear about your struggle, HereditaryPrincess!
And ''people trying to arguing with you on public transport, because you don’t look disabled,'' is just so RUDE and SO UK (even seen some people in London, who could barely walk, being yelled at).

I've seen criticism here on the forums about Mette-Marit's workload as well as other international discussion sites on the internet, though I don't know how that was perceived in Norway at the time.
 
:previous: I meant in the Norwegian media! ??

But I have (of course) seen it on this forum, even defended her in several PMs here.
 
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:previous: Thanks.

A 73 % reduction in her workload from the year before her illness was made public to afterward. That's quite a lot!
From 126 official events to 34.
 
As diagnosis has taken a load off Mette-Marit I think. There was always this sort of intimation that it was lucky Norway was s small since the Crown Princess didn't really do much. On occasion this was true but not as a rule.

I think the negative optics of skipping parts of a state visit yet being seen out and about had people scratching their heads.

It seemed like she has only just achieved a hard won acceptance from the people of Norway before the affects of this disease started to really make it's presence felt and when you are tired and worn out nobody understands because it is an unseen and unknown condition.

Mette-Marit looks so healthy and robust it is hard to believe how serious her condition is, but if a 73% cut in workload is what it takes to keep her feeling well I'm all for it. Rather she saves her energy for when she has it.

Like this latest bike ride. It is possible that a year ago she wouldn't have had the stamina to do it and you can't really plan ahead on when you are going to feel well.
 
In the course of her recently trip to Germany, Crown Princess Mette-Marit spoke with the Norwegian TV channel "NRK" about her illness.

"The effects of the illness are clear, she admits: "I'm exhausted faster than before, so I have to take more care of myself today than I did before," saying the medications work well so that her disease does not progress unchecked.
Within her role as Crown Princess, she enjoys having more time for herself because of her diagnosis. "I can decide more about my everyday life and I realize how good it is to me, I can just go for a walk and have more time to read, life has slowed down," says the mother of three.
However, she does not find it easy to talk about pulmonary fibrosis, as she herself explains: "I am well aware of my state of health, but I do not want to get so much attention from outside, which is one of the reasons why I like my 'new little life' so much. ""

https://web.de/magazine/unterhaltun...n-spricht-offen-unheilbare-krankheit-34111602
 
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