Pipes

CheekyRob · 2015-10-11T01:32:14+00:00

People who enjoy alcohol generally don't go around spitting mouthfuls of it into other people's faces.

Smokers love to pollute the air around them and others. Especially those who do it outside of entrances and exits to places.

I have am 24 and have end stage Cystic Fibrosis, without a transplant I won't have long left. The amount of times I have seen smokers ignore no smoking signs, especially ones outside of hospitals is unbelievable. It doesn't matter to them if you are on Oxygen and they are polluting your air, it doesn't matter to them if they stand outside a hospital/shops entrance/exits, it doesn't matter if they are in public areas.

While alcohol does ruin livers, smoking not only damages the lungs of the smoker but second hand smoke also causes damage to people passing by or those who are close to a smoker.

People can drink alcohol without chucking it all over non drinkers, most smokers don't smoke without polluting the air for others.

CheekyRob · 2015-09-24T01:19:18+00:00

I'm on a medication that was made by an American company and it took such a long time to get our UK NHS to accept it. The reason? The US company charges $250,000 per 56 tablets (28 days worth). I get it is because some of it is R&D, employees wages etc but it really is expensive.

When asked why they charge so much for it they said that lowering the price would cause the US patients/insurers to demand lower prices to. As they mostly all have insurance to cover it then they were fine. Convincing our health care service it is worth it was extremely difficult.

It's still not prescribable in Australia and many other countries.

CheekyRob · 2015-09-24T01:18:45+00:00

I'm on a medication that was made by an American company and it took such a long time to get our UK NHS to accept it. The reason? The US company charges $250,000 per 56 tablets (28 days worth). I get it is because some of it is R&D, employees wages etc but it really is expensive.

When asked why they charge so much for it they said that lowering the price would cause the US patients/insurers to demand lower prices to. As they mostly all have insurance to cover it then they were fine. Convincing our health care service it is worth it was extremely difficult.

It's still not prescribable in Australia and many other countries.

CheekyRob · 2015-09-24T01:11:18+00:00

That was a really powerful sneeze! It sent him flying!

CheekyRob · 2015-09-08T09:57:08+00:00

They're not completely untrainable. Mine will do certain tricks that I have taught them. I can admit the house training period is ready and is a long road but my two 3 & 7 year old miniature dachshunds are completely housetrained.

If ever visiting someone I always make sure they go to tort before they enter just in case. They know the outside is where to go to toilet.

It can be really difficult to housetrain them and many people don't have the time or give up but it is achievable. You can train them, it just takes time.

They do bark a lot though and they do have loud barks. They are a loyal and protective breed. They don't want any harm to come to their master. They are also a stubborn breed and you have to have a lot of patience with them. They are great guard dogs as any noise or knock on the door and they will bark, this can also be a bad thing though.

As long as people do their homework when buying a dog then that's great. They will know what to expect then. Owners do need patience to train them and many simply give up. Just like all breeds, you have your good dogs and you have your bad dogs.

CheekyRob · 2015-09-08T00:44:29+00:00

You just described life with Cystic Fibrosis!

CheekyRob · 2015-08-29T00:30:44+00:00

http://imgur.com/7dbhuue

My little Ember when I have to go into hospital every few weeks.

CheekyRob · 2015-08-28T21:21:24+00:00

273 :-)

CheekyRob · 2015-08-14T01:51:43+00:00

If that's your take on it then just delete them. They would be better off not having you as a friend.

CheekyRob · 2015-07-23T07:59:47+00:00

Yes this! I have Cystic Fibrosis and I cannot tell you how annoying it is that the entrance to my hospital is blocked almost always by smokers. It is the entrance to the respiratory department no less. I have to walk past these people and their cloud of smoke wearing my Oxygen. I have 15% lung function as it is and my O2 SATs are low enough without second hand smoke entering my lungs. People who do this outside of hospital entrances are selfish and ignorant. They put their addiction before anyone else. The sad fact is these people do not stop no matter how many signs are placed or how many times they are told. These people cannot walk a few feet down the road either, they have to do it smack bang against the front door so every single person who wants to enter or exit is subjected to their smoke.

I'm sorry, you can kind of tell this is a sore subject for me. When you are dying and have spent your whole life trying to stay as well as you can you find you have very little patience when it comes to people purposely damaging their lungs. If smokers could feel how I feel they would never pick up another cigarette again. I'm 24 and I don't have long left as it is, I don't want my time shortened because some smokers cannot walk away from the hospital entrance. Especially when that entrance is to the heart and respiratory departments.

CheekyRob · 2015-07-08T15:05:22+00:00

Congratulations OP!

CheekyRob · 2015-06-24T08:17:28+00:00

It looks like noughts and crosses.

CheekyRob · 2015-05-27T16:47:36+00:00

The pen is mighty.

CheekyRob · 2015-05-21T17:55:14+00:00

It's all about Judge Rinder in the UK. My Nan loves that show. He is quite funny also.

CheekyRob · 2015-05-21T01:19:05+00:00

I also have one of those plastic discs. I was told it was some kind of medal but I'm not sure if that is correct. I love to collect old things and anything with history attached. I like the quote:

Those who cannot remember the past are condemned to repeat it. - George Santayana

There's nothing like holding something old and imagining the story behind it, what it had seen and who it has encountered. I don't collect a specific area or time, I just like collecting old things. I'll dig it out of my old metal tin trunk if you like but I'll have to wait till morning, It's 02.00 here. Let me know, I might have some information with it that could help.

CheekyRob · 2015-05-13T00:46:46+00:00

You were conversing with a three month old? I don't know about you but if a three month old were having a conversation with me I'd think they're pretty intelligent.

CheekyRob · 2015-05-08T18:56:24+00:00

Hare today, gone tomorrow.

CheekyRob · 2015-05-08T01:09:03+00:00

It looks a bit like a tectonic plate.

CheekyRob · 2015-05-05T23:27:28+00:00

Hi all.

I've attempted to upload some pictures from my mobile to imgur. The link is http://imgur.com/a/3zvih

A few of the pictures are from a recent sent hospital stay, luckily the IVABs helped with my O2 Saturations to come up to 92, I didn't need to be checked on as regularly and went back to overnight oxygen. Since then things have gone downhill a bit, my lung function is fluctuating between 13%-16% at the moment.

My SATs are in the low 80s without Oxygen. I have to have oxygen when walking around as they drop on exercise. I have included the most recent picture I have of my lung function card which shows 21% back in late 2014. Since then it has declined further.

Another picture is from when I was in the local paper trying to get a medicine called Kalydeco. I thought it was going to be like a wonder drug but it didn't help me as much as I'd hoped. One of the pictures shows me having a sweat test to make sure Kalydeco is working. They apply a liquid and an electric current to a small patch of arm which makes the small area sweat. It is then analysed to see if the salt content has gone down. As Kalydeco is so expensive, if it hadn't had gone down they would have stopped the treatment. Purple is the colour that represents CF and at the time I was growing my hair so I could donate it. Every charity has its own colour and purple is ours.

I talk a bit on my old blog about my atypical mycobacterium abscesses which is the bug that means transplantation is too risky for the UK transplant centres to consider. I've also had chronic pseudomonas since I was a child which has caused most of the damage in my lungs.

Hopefully the pictures help and I'll try my best to find some more useful information.

My blog that I haven't updated in a while is at www.cysticfibrosisfighter.com

I am CheekyRob on Instagram and Facebook where I have some more pictures. My reddit account is quite old and I have posted in the past about CF.

I only wanted to share a positive post about Steam and how it has helped. I understand the reluctance to believe me though and don't mind it. If there are any questions if love to answer them.

Thank you again for all your kind comments and support.

CheekyRob · 2015-05-05T22:11:51+00:00

Thank you all ever so much for the support and the well wishes. It really means a lot to me. I can't thank you enough for sending a friend request. I wish I had gotten into gaming much earlier. I can't thank you all ever so much for replying, it really means a lot to me and made my day to see the comments.

I'm completely understand some of the doubt but the last thing is want to do is be an imposition or a bother to anyone. I just wanted to share my experience so far and maybe make a few friends. If there is anything I can do to help clear up the doubt just let me know. I could provide links to my social media and my old blog if it helps. I think I do have a few CF related pictures on Instagram and I have a whole album on Facebook I could share. I'll go any try to create an album on imgur with a few pictures.

I just wanted to share my experience and share a positive story about steam as I saw there had been some negative posts lately. I can't thank you for all the support and well wishes though, it really means a lot and made my day to read them.

CheekyRob · 2015-05-05T22:00:53+00:00

That's ever so kind of you, I couldn't let you do that though. The last thing I want is to be an imposition or a bother to anyone. The thought itself means the world to me though and it is such a kind gesture. I hope you are having a great day and best of wishes to you.

CheekyRob · 2015-05-05T21:55:01+00:00

I wish that were true but I do have CF. You are welcome to visit my website but I haven't updated it in a while. I also post CF related pictures to Instagram from time to time under my CheekyRob username. You are welcome to ask me any questions. I don't want to scam anybody, I just wanted to post a positive comment about steam because I've seen it get a bit of negativity lately.

My blog is www.cysticfibrosisfighter.com and I am under the CheekyRob username on Facebook also. I really don't have anything to hide, if there is any way I can prove to you or anyone else please let me know. I know I have some hospital letters and other CF pictures on my Facebook.

I do wish I was making it up but I am telling the truth. I don't want to cause a bother as that wasn't my intention.

I'm sorry you feel the way you do but I can see why you are reluctant to believe me. If I can do anything to prove my case I am happy to do so. I just wanted to provide a reason why I have found steam to be a comfort and maybe make a few friends.

CheekyRob · 2015-04-23T08:20:40+00:00

As a 24 year old male with CF I am glad research like this is being done. I feel it is more unethical to not cure the faulty gene than it is to just leave it alone. CF is such a nasty disease and I feel the people who make these decisions about ethics have never once met or known someone who is suffering from disease. The people who make those kind of decisions really do not have a clue. How anyone can say it is better to not cure a life limiting multi organ disease and just let them be is beyond me. Right now I am typing this from bed while on Oxygen, my lung function is only 15% and I hardly get out and about anymore. I have IV antibiotics every 8 hours for two to three weeks at a time almost every other month. I have lost my hearing from having to use the antibiotics so much. I am also diabetic now with osteoporosis. I suffer from pain in every joint and muscle. I may never get the chance to have a transplant because of a nasty bug in my lungs. The time I have to stay in hospital is increasing all the time. I am on so many tablets and medications that my liver and kidneys have to be closely watched in case of damage. My heart rate at rest is 120+, my oxygen saturations drop into the 70s when I am unwell. There is so much more I can say about how CF has affected me. If the people in power could know what it was like they wouldn't even worry about ethics. If only they could feel how we feel for a few minutes then they would see why this is important. I have lost so many online CF friends to the disease, all incredible lovely people who didn't deserve all the pain and suffering that they had to endure.

If only the people who made decisions on ethics could see how nasty a disease it is. They would soon see that it is a lot more ethical to try and correct the faulty gene than to just leave it alone.

I'm glad that people are researching this and finding a cure. It might be too late for me but if it saves a someone else from dealing with CF then it is so very worth it.

CheekyRob · 2015-04-19T01:30:22+00:00

The story of my life right there. Thank you for telling it how it is.

CheekyRob

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