Fresh air does not smell of fragrance

Frisk luft lukter ikke av parfyme.


1 Comment

Breathing problem due to Alpha 1 Antitrypsin deficiency – Video

Alpha 1 Antitrypsin deficiency

I found some really good videos on YouTube.com about Alpha 1 Antitrypsin deficiency. This is about Alpha 1, but the first part also describes the sensation having asthma without Alpha 1. So to understand the nature of asthma you really need to see the first part of the video. Note! that asthma and Alpha 1 Antitrypsin deficiency is not the same even though the experience of the symptoms are in many ways much similar.

Part 1
Part 1 show you what it feels like having Alpha 1 Antitrypsin deficiency, but also what it feels like having asthma even though asthma and Alpha 1 Antitrypsin deficiency is not the same.
http://www.youtube.com/watch?v=wYsaosI26oQ

Part two
Part two show you the real severity view of Alpha 1

http://www.youtube.com/watch?v=lCW0gutkGzs

Good Reading on Alpha 1 Antitrypsin deficiency

There are many with Alpha 1 also has some form of asthma, others have bronchiestase, fibrosis, cyatisk fibrosis, chronic bronchitis, etc. Many people experience emphysema early in life because of its Alpha 1. It is often when you have emphysema you get infusion therapy.

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition – it is passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age.

For each trait a person inherits, there are usually two genes; one gene comes from each parent. People with Alpha-1 have received two abnormal alpha-1 antitrypsin genes. One of these abnormal genes came from their mother and one from their father.

Alpha-1 occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin, or AAT. AAT, the alpha-1 protein, is mainly produced by the liver. The main function of AAT is to protect the lungs from inflammation caused by infection and inhaled irritants such as tobacco smoke.

Source and Read more: http://alpha-1foundation.org/what-is-alpha-1/

Because Alpha-1 is genetic, Alpha-1 lung disease is commonly called “genetic COPD.” People with Alpha-1 lung disease have two abnormal genes (one from each parent). The most common abnormal genes are called Z and S genes.

Early diagnosis of Alpha-1 is very important because quitting smoking (if the Alpha smokes) and early treatment are both essential to help slow the progression of Alpha-1 lung disease.

However, Alpha-1 Antitrypsin Deficiency can’t be diagnosed by symptoms or by a medical examination alone; you need to get a blood test to know for sure.

Alpha-1 is often first diagnosed as asthma or smoking-related Chronic Obstructive Pulmonary Disease (COPD). COPD includes emphysema and chronic bronchitis. Alpha-1 is the most common genetic risk factor for COPD. About 3 percent of all people diagnosed with COPD may have undetected Alpha-1.

The World Health Organization (WHO), American Thoracic Society (ATS), and the European Respiratory Society (ERS) recommend that everyone with COPD, bronchiectasis, or asthma that isn’t controlled with usual medications, be tested for Alpha-1.

Source and Read more: http://alpha-1foundation.org/about/

Treatment

There is no cure for Alpha-1 lung disease, but treatments are available.

Alphas with lung diseases such as asthma, COPD or bronchiectasis can be helped by the same drugs used by non-Alphas for these conditions.

These include drugs to open up the lung passages (bronchodilators) and reduce the chronic inflammation that is common in the lungs of Alphas (corticosteroids).

Since infections in the lung can bring millions of extra white blood cells into the lungs, many doctors who care for Alphas recommend that lung infections be treated early and aggressively with antibiotics. One sign of a lung infection is when the Alpha starts to cough up mucus or phlegm that is yellow or green in color.

Besides the usual treatments for COPD in general, there is a specific therapy available to Alphas with lung disease.

Augmentation therapy consists of intravenous infusions, usually weekly, of alpha-1 antitrypsin protein purified from healthy plasma donors. The goal is to increase the level of alpha-1 protein in the blood and lungs in order to slow or stop the progression of Alpha-1 lung disease.

Augmentation therapy has been shown to increase blood and lung levels of alpha-1 antitrypsin protein, reduce the rate of decline of lung function, and improve survival.

Augmentation therapy cannot restore lost lung function and is not considered a cure. However, this therapy is currently the standard of care for Alphas with COPD.

Source and Read more: http://alpha-1foundation.org/augmentation-therapy/

Transplant

Neither medicine or transfusion Cure Alpha 1 Antitrypsin deficiency. In the end all having Alpha 1 Antitrypsin deficiency die. To survice they need to have a lung transplant.

But the medicine and the transfusion help those having Alpha 1 Antitrypsin deficiency live longer.

Article is written With help of a friend having Alpha 1 Antitrypsin deficiency and my own knowledge in normal asthma. Please contact www.alpha-1foundation.org for more Information on Alpha 1 Antitrypsin deficiency.

Fact Source: my friend having Alpha 1 and  www.alpha-1foundation.org


Leave a comment

Reblogged “You must go to Elverum – a story on red tape, weekly commuting and cronic illness”

I can only agree. Poor man, and with Alpha 1 Anitrypsin deficiensy too! I have normal asthma and I know how hard that can be, and with Alpha 1 in addition to it must be awful. And not getting service on top of it! Really bad!

Important topic

Read the whole Qouted story here:

“You must go to Elverum” – a story on red tape, weekly commuting  and cronic illness

mars 28, 2013 — alfaener

Troublesome equipmment

Troublesome equipmment

Healthy days

replaced the anxiety-ridden days in Pitigliano, but the “holiday” had taken its toll on me who had found myself in the nursing positition for 24 hours a day the two weeks while Geir was ill.

Slowly the world came back on track, and I got a two week sick-leave from my husbands specialist when we came to see him the first week after coming home. The specialist also found out that my former medicationfree AlphaOne finally responded to Atrovent and Ventolin – and sent with us a prescription for the medication plus a requisition for a nebulizer in addition to a two week sick leave for him as well. So far so good.

Norway – land of the bureaucrats?

As I happened to be in Oslo, and Geir still was recovering from his spell in Italy, I volunteered to go to the hospital our lung specialist had told us to go to to pick up the nebulizer (which can be borrowed from the health care system). It turned out they closed as early as 2.30 PM, and as I arrived at 2.35 nobody opened the door. Well, I could have checked that one before going, and Geir still had some left of the Italian medication. So no big deal. This one is on me.

“Is this adress correct?”

Back again the next day at Ullevål University Hospital and the storage unit for medical equipment. The door was now open, but service seemed to be a lacking word in the vocabulary. First one sour lady picked up my requisition, then an important looking man came back and asked sourly, “Is this adress correct?” He meant our homeadress in Koppang, northeast of Oslo.

“Yes, it is”, I said, “but my husband has a work adress in Oslo and spends the whole week here.” “Ok”, the man said, “but I cannot give out anything from here. You have to go to Elverum to get it.”

“????”

“That is the rules,” he continued.

“But Elverum is almost a two hours drive from here???”

” So are the rules”, the man said, even more sourly now. “If you have adress Koppang, that is the adress we relate to, and you have to pick up the equipment in Elverum.” He gave me the paper back, and I realized this was no joke. We really had to get the equipment from Elverum, which on top of it all was 90 km from our home in Koppang.

“Who pays the cost for going to Elverum?”

I called Geir who could hardly believe what I said. But it finally dawned upon him as well that Elverum was the place to relate to. He got on the phone to Elverum Hospital the next day, which happened to be a Friday.

“Yes, no problem”, they said. “You can come here and pick up the equipment.”

But realizing that he might not be the only weekly commuter in the country – he said: “But before I go I want to know where I can send the bill for lost work hours and travelling costs, since it so happens that I work in Oslo…”

It got quiet in the other end. “Eh, I do not know how that will be,” the person said.

“Well, you see, at my work we have commuters all the way from Alta in the far north to Kristiansand in the south, and I need to know since this might come up as a problem for someone else commuting from faraway. It is a question of principles here, since I am not the only cronicly ill commuter in the country, and I need to know how to help them.”

After a moment of silence in the other end, the person concluded that this needed some research, and my husband would get a phonecall from them on Monday.

Monday came, and he received the call rom Elverum Hospital, who wisely enough had decided they could send the equipment by regular mail. And so they did, and the equipment arrived on Wednesday, which was one full week after we started on the quest.

So far so good. We now had the equipment needed. Why dwell upon the details here?

Bureaucrats are hired to serve the PEOPLE!

This was Max Weber’s original idea behind hiring servants to take care of the people’s needs – servants today known as bureaucrats.

In this case, Hospital Administration and administration routines had first priority – not the patients needs. If saving money for the medical profession means dumping all the problems over to the patient something is seriously wrong.

This patient lived in Oslo during the whole week. He wants desperately to work instead of living on disability pension, but he was still quite sick, and needed his medication to breathe better – which in fact is a necessity to get enough oxygen to the cells of the body. The guy at Ullevål University Hospital had nothing wrong with his breathing. Besides he had not created the rules and should not get the blame here. But since it is a practical possibility to send invoices between hospitals – they do it all the time – why not hand out the equipment needed at the nearest possible place for the patient and leave it to the healthy bureaucrats to find a way of sorting out the money transfers or mail-delivered equipment later? The patient in question should have gotten what he needed right there and then. He was sick and suffered unnecessarily long from not getting it!

One focus – GET AS WELL AS YOU CAN!

Patients should have one focus – to get as well as they can to stay as workers as long as they manage. My husband was lucky, he had me there to run errands. I must admit I am happy he got sick in Italy – because if he had gotten sick here he would have been without proper medication for a whole week! There, in our tiny Italian town of 4000 inhabitants, I could get what I needed within minutes, included the medication of similar sort – without prescription – and I could choose between renting or buying the equipment. Rent was 1 euro a day – buying was 70 euro. We regret we did not buy one to take home from Italy. In Oslo with half a million inhabitants we cannot even buy it from a pharmacy! I tried!

So why whine since it all went well?

Well, I happen to be of the opinion that if you stumble upon a stone in the road that can easily be moved – it is important to try to move it so that the next person with maybe less resources does not have to stumble all over again! And in my frank opinion, it should be a lot easier to move a paper, an invoice or money than to ask a cronicly ill patient to run crosscountry to get what he needs to get well. Especially when it is a mantra in Norway that each and everyone of us are to work as much as possible until we hit the coffin. I think that calls for more flexibility from the bureaucracy than what we just experienced. The stone is not moved yet, but at least more people than us know it is there! And knowing is there is the first step in doing something about it.”

More important related topics:

http://alfaener.wordpress.com/2013/03/31/early-testing-for-alpha-1-can-save-lives/

Alfa-ener

Healthy days

replaced the anxiety-ridden days in Pitigliano, but the “holiday” had taken its toll on me who had found myself in the nursing positition for 24 hours a day the two weeks while Geir was ill.

Slowly the world came back on track, and I got a two week sick-leave from my husbands specialist when we came to see him the first week after coming home. The specialist also found out that my former medicationfree AlphaOne finally responded to Atrovent and Ventolin – and sent with us a prescription for the medication plus a requisition for a nebulizer in addition to a two week sick leave for him as well. So far so good.

Norway – land of the bureaucrats?

As I happened to be in Oslo, and Geir still was recovering from his spell in Italy, I volunteered to go to the hospital our lung specialist had told…

View original post 1,086 more words


Leave a comment

How it really feels – by Karen Skålvoll

I have an online friend who got asthma with alpha1 antitrypsin deficiency. At her last blog entry she talks about what it really feels like having asthma with alpa1 and peoples habits and likes. It was so good explained that I asked her to allow me to post it here on my blog, and she was kind enough to allow it. So here my dear reader you can find out how it is to live with asthma with an alpha1 deficiency in additon. From my side: Having a “normal asthma” is just like that just except for the burning sensation and the dying lung. But even a person with an “ordianary asthma” can get damages to the lungs when exposed to stuff they get sick from, the lungs get hardened, and the illnesses symtomes can develop to become 24/7. It is therefore very important to any asthmatic – alpha1 or not – to avoid any what makes the asthmatic ill. Happy reading, and hopefully listening. – Annelie

How it really feels – by Karen Skålvoll

“It is certainly very difficult for those who are healthy to understand that we who are living with a serious lung disease react to fragrances others have chosen to take on. The fact that it burns the lungs, the mucus, painful spasms in the bronchi and is really just child’s play, because us with alpha 1, we get lung damage as well. Sometimes I am willing to pay the price to visit some of the world, but mostly I let it be. I stay home. Putting an injection of medicine to open to breathe is no fun, the heart races away with a pulse that is sky high and it is physically difficult to hold a glass, not talking about holding a pen or write.

When it comes to those with alpha 1 lacking the protein (alpha 1 antitrypsin) it is the alpha1 antitrypsin that protects the lungs, and we do not have that. This means that everything we breathe damages lung tissue much more than those who do not have this gene defect. A bit like in children who have not yet fully developed lung tissue (that you can read about here: children’s health in front of the staff’s vanity, indoor air quality, children and allergies) I have severe uncontrolled asthma on top of my Alpha 1 can be on any given day loss of life in an asthma attack because others have chosen to dress up. Arguments like, “I used just a little” or “only little won’t hurt anyone” or “it’s just soooo little..” or “I can not help it..” provoke sometimes even though I have gotten extremely hard bones in my nose eventually. The vanity of others will go in front of other people’s health, I think is directly frightening. Let everyone breathing fresh air that does not bathe in perfume, it is the best for children, allergy sufferers, those with lung diseases and, not least for most people.

Since I have alpha 1 I also feel on the psychological element in this. My lungs are damaged and get damaged more because of all those who smear themselves and spray themselves with so much, if I get an asthma attack I am simply promoted one step closer to death. It’s a brutal reality that is not spoken about. To smoke or use spray in one form or another close to some of alpha 1 is considered an abuse, because we get lung damage of the sort. The more we tell, the more we talk about this the more knowledge comes out of the public. I hope that future generations will not have to hear all the prattling that those who talk about freedom of perfume are selfish, they can only wear masks, they can stay home, etc. No, the only thing that counts is the information we need to be visible and we must have the courage to talk about the unpleasant consequences of others’ decorating.” – Karen Skålvoll

~o~

“He who Rejects change is the architect of decay. The only human institution Which Rejects progress in is the cemetary.”  – Harold Wilson

Source: http://livsreisen-mandalay.blogspot.de/2012/04/hvordan-det-egentlig-fles.html

Thank you for sharing Karen and for beautifully explaining to us all.

Don’t you know what astma is? Read about asthma and what it is..

Annelie