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#1 karin

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Posted 23 April 2009 - 03:36 AM

I just registered today; so I am very new to this forums.

Let me introduce myself; I am 44 years old and I was diagnosed at may 1999 with progressive systemic scleroderma.

Then I only had swollen fingers and general fatique. I live in Indonesia but my mom lives in Germany; there I was diagnosed.

I got treated in many hospitals; but since I now have to use oxygen concentrator 24/7 to get enough oxygen in my blood due to my lung restriction; and the trip makes me too tired and I can not do it anymore.

I'd like to know any of you who have the same problem with me :) so we can share what kind of treatment can help us.

#2 Shelley Ensz

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Posted 23 April 2009 - 04:52 AM

Hi Karin,

Welcome to Sclero Forums! I'm very glad you found us.

I'm not on oxygen however my husband is on oxygen 24/7 for severe COPD (emphysema and asthma). The fabulous thing about oxygen treatment is that if you use it dutifully, all the time, as it is prescribed by your doctor, it can reduce the burden on your heart and help you live many years longer! Too many people think they can go without their oxygen as long as they don't feel short of breath, but that is not true. Sometimes shortness of breath doesn't set in until a person is severely desaturated, at levels that can impair the brain and the heart.

My husband finds that being active and exercising (as his doctor recommends) really helps preserve what lung function he has left. So even though he is on five liters of oxygen, he still works part-time as a restaurant greeter and does all our household errands, plus walks in the shopping mall regularly. You might want to ask your doctor how much activity you can safely do and see if you can, for example, walk a tiny bit farther each day. I know it is hard to do anything at all with fatigue and even more so with oxygen.
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 janey

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Posted 23 April 2009 - 04:57 AM

Karin,
Welcome to the ISN forums! Sorry to read that you are suffering from lung problems, although I'm sure the oxygen makes you feel a lot better. I, too am on oxygen, but not 24/7. As long as I'm sitting or moving slowly, my O2 sats are good. However, I do need it during exertion and sleeping. It was hard getting use to at first, especially wearing it on errands and such, but now I don't even think about it. It's just a fact of life and since it makes my life easier, I find it no problem at all.

I made traveling easy by getting one of those portable concentrators. Mine is FAA approved, but I haven't flown with it yet. I know people that have and it was easy apparently, so you might look into those. They aren't cheap, but it could allow you to travel to see your mother.

Again welcome! Please tell us more about yourself.

Big Hugs,
Janey Willis
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#4 Jeannie McClelland

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Posted 23 April 2009 - 05:42 AM

Hi Karin,

Welcome to the Forum! I'm Jeannie and I also use oxygen.

My doctor prescribed a special sort of physical therapy called 'pulmonary rehabilitation.' Pulmonary Rehabilitation is a program of education and exercise classes that teaches you about your lungs, how to exercise and do activities with less shortness of breath, and how to "live" better with your lung condition. That helped a lot. Most of us with pulmonary fibrosis take medications to help prevent progression. Many of us also take medications to help with the fatigue (tiredness).

Like Janey, I have a portable oxygen concentrator (POC) which is small enough to take on an airplane. It is 30cm wide (breit) by 20cm tall (hoch) by 15cm deep (tief). My doctor wrote an order for the device and my medical insurance company paid for it. The drawback to these devices is that they run on battery and on a long flight (including time at an airport) you may not have a way to recharge the battery. My (POC) will work for about 6 hours at a flow rate of 3 liters per minute.

In America, the Federal Aviation Administration (FAA) approves which medical devices may be taken aboard an airplane and used while in flight. Each country has its own regulations and I don't know what either Indonesia or Germany's regulations are, but I do not believe any country/airline will permit filled oxygen bottles on board because they are considered 'pressure vessels' and hazardous in flight. However almost every airline will provide medical oxygen for passengers who require it. I know that Lufthansa and KLM both do. You would need an order from your doctor and would need to make arrangements early before the flight. There is usually a charge for this service, but it would enable you to travel safely and comfortably.

Karin, do you see a scleroderma specialist in Indonesia?

Again, welcome to the Forum. I hope you can write often.

Alle beste,

Jeannie
Jeannie McClelland
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#5 Penny

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Posted 23 April 2009 - 06:55 AM

Karin,

I just wanted to add my welcome to you to the forum.

I do not currently use oxygen, but as you can see from the previous (and might I say 'wonderful') posters, there are alternatives for use in flight as well as for ease of movement and travel.

I hope that you are able to find a travel solution soon so that you can resume traveling to visit your mother, just remember that for every door that seems to close another will open. You just have to know where to look.

#6 Sweet

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Posted 23 April 2009 - 10:25 AM

Hi Karin,

Welcome to the Sclero forums. I'm so sorry to hear about your lungs problems. I can only imagine how scary that must be. I don't have lung involvement yet, but it sounds like others gave you great advice so far.

Again welcome!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)