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#1 Mike1313

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Posted 13 September 2014 - 11:04 AM

Hi. My name is Mike. I am 42 married with a 13 month old son. I am a carpenter and have always been in good physical condition.

I have recently been diagnosed with systemic scleroderma. Most symptoms are soft but I have fibrotic NSIP and it has become very aggressive. Within the last 1.5years I am down to 45% lung capacity. We are Canadian and have some similar treatment options. Prednisone hasn't worked. They are now mixing another drug with it. ( we're hoping for some good news )

I am no longer able to work and have been prescribed oxygen.

We have been looking into stemcell transplant at northwestern university in Chicago. This isn't an option in Canada and is a very expensive procedure.
Soon I may have no option other than transplant.

Hoping for any opinions or suggestions.

Even just to hear from others in the same situation may help.

Mike.



#2 Amanda Thorpe

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Posted 13 September 2014 - 03:12 PM

Hello Mike

 

Welcome to the forums. I had never heard of  NSIP, (nonspecific interstitial pneumonia), per the Scleroderma Society: "In systemic sclerosis the most frequently occurring pattern of fibrosis is one called non-specific interstitial pneumonia (abbreviated as NSIP)."

 

Stem cell transplants have been discussed on this site and forums many times before, some successful, some not so much and some fatal. Have a look at the discussions about stem cell transplants on the forums, people's experiences in our personal stories, and or course our medical pages.

 

One thing we always do here at ISN is to recommend that anyone with scleroderma be under the care of a  scleroderma expert and if you look under the STCS and  EUSTAR links you'll find those in Canada.

 

I know and have known many people with scleroderma, including a lady who lived 30 years with a lung function of 50% and, as far as I know, is still alive. Scleroderma has taught me that anything is possible, both good and bad and I hope that for you it's all possible for the good.

 

Take care.


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#3 judyt

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Posted 13 September 2014 - 07:32 PM

Hello Mike,

 

Welcome to the forums but sorry you have had to join us.   You will find us a welcoming bunch so I hope you can get some help here.

 

Talking about Stem Cell Transplants I know of only two in our part of the world (there must have been many more here but I don't know about them).  

The first one I heard of was the son of a friend who developed non- Hodgkins Lymphoma I believe and for some reason chose stem cell therapy and ended up WITH Systemic Sclerosis :emoticon-dont-know: .

 

The second one is a young woman in a smaller town in NZ who was overtaken very quickly by her disease and had skin so stiff and hard that it split and ulcerated when she moved.   This young lady was almost permanently in hospital until her sister managed to find a centre in Australia who would try a transplant.   The money was raised through all sorts of private donations and fundraisers and she had her transplant.   The effect was almost immediate and phenomenal.   Within weeks her skin had softened and her lung function was greatly improved.   Now she can live a normal life.   So you can see that it is a fraught decision and who knows what will happen.

 

Whatever you decide to do we all will be hoping the treatment helps.

 

In the meantime

Best wishes

Judyt



#4 Joelf

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Posted 14 September 2014 - 03:47 AM

Hi Mike,

 

Welcome to these forums!

 

Well, it just so happens that I have NSIP (fibrosing organising pneumonia) and in order to give you some encouragement, my oxygen/carbon dioxide diffusion at it's worst was 48% and after aggressive treatment with Cyclophosphamide and taking Azathioprine and Prednisolone for the past five years, my lung function is now in the 80-83% bracket (my consultant told me she could pull people in off the street with worse lung function tests than me!! ;) )

 

I would emphasise that the treatment does work differently for everyone and sadly I know it hasn't always been as successful for other people. My treatment was helped by the fact that I was very fit at the time and my lungs were in excellent shape to start with (non smoker all my life). Also I was diagnosed very quickly and received aggressive treatment at one of the top lung hospitals in the UK, so I was extremely fortunate.

 

I'm sorry to hear that you might need to have a Stem Cell Transplant or even a Lung Transplant and I can only echo Amanda's advice that you consult a Scleroderma expert, as this complex disease really does require specialist knowledge and expertise.

 

Please do keep posting and let us know how you're faring.

 

Kind regards,


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#5 Sweet

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Posted 15 September 2014 - 12:12 PM

Hi Mike and welcome!

 

I'm so glad you have joined our forum but sorry it's due to your ill health. Looks like you've been provided with a few very good links, I hope you find them to be helpful!


Warm and gentle hugs,

Pamela
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#6 Mike1313

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Posted 23 September 2014 - 01:32 PM

Hi again,

 

Thank you so much for your input. It has been nice to hear from others with similar problems .

 

I was a little vague at the end of my post (baby crying). I meant to say that I am heading toward a lung transplant. Recent test results confirmed I am declining 41% total volume. 33% DLCO.

I try to remain positive although I can't help feeling like a constant burden to my family.

 

The stress can be hard to manage. I was hoping to try the stem cell transplant therapy but I may not be accepted. Looking for a positive push in the right direction.

 

It's a good thing I like a good fight.

 

Mike.



#7 Shelley Ensz

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Posted 30 September 2014 - 01:58 PM

Hi Mike,

 

I'd like to join the others in welcoming you to Sclero Forums. It is very wise for you to explore all your treatment options, as when scleroderma strikes in men, it tends to be caused by occupational exposures, and to take a more aggressive course. But scleroderma is also quite unpredictable. You never know when it is going to settle down, even on its own accord, and as Jo has shown, certain symptoms and even the illness itself can improve with appropriate treatment.

 

I know what it's like to go through the "feel like a burden" stuff. Would you mind terribly if I tell you how I got cured of that?  Many years ago, I spent some quality time bedridden and in a wheelchair. I could no longer work or even do anything at all around the house. The only thing I was good at was sleeping, and eating meals by candlelight, in bed.

 

I somehow kept my spirits up, trying to think positive.  But one day they slumped anyway, as you have seen can happen even to the very best and most determined of us, and I told my husband that I was worried that I was just a burden to him. He said, when people really love each other, there is no such thing as "burden".  He never thought of me as a burden, not for a second!  So, if I was thinking I was a burden, was I not loving him anymore?

 

Whoa, baby!  Did you get that turnabout?  I was becoming self-centered to think that way.  I was not loving him when I thought that way. So I refocused my thoughts on the ways that I loved him, and on developing more loving and other-centered thoughts.  I am so glad he called me on it.  It probably saved me from lapsing into terminal self-pity, which could have been disastrous to our marriage.

 

Later on, I got a lot better but he got a lot worse. I ended up being a caregiver for him, whereupon I discovered, first hand, that what he said was really true!  When you really love someone, there is no such thing as a "burden".  It is a joy to care for them. Sure, it might be very hard sometimes, even utterly exhausting. But it feels good and nourishing to be able to show your love so actively, all the way down to your toes! 

 

I regretted having ever thought like that myself. It was wasted emotion which didn't help me, didn't improve my health, didn't show appreciation (in fact, cut it off at the pass), and didn't help my relationships improve. It was garbage.

 

So, I recommend thinking about it, and perhaps considering giving up that line of reasoning. Unless, of course, you don't really love your loved ones.  Arghghgh, eh?

 

I'm positive you do love them. You're just in a very tough spot. But I am absolutely certain that you will make the very best out of it. After all, everyone around here does!  The ISN is just chock full of people who are making the best out of bad situations. You wouldn't have even posted here, if you weren't drawn to us because of having the same inclinations and determination. Your loved ones are LUCKY to have you around. You are a blessing to them, and I'm sure you will also be a blessing to us, too.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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#8 miocean

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Posted 01 October 2014 - 03:39 AM

Shelley, you are oh so wise! 

 

Mike, over the years I have felt like you do. I'd tell my husband how lucky I am to have him and he would tell me how lucky he is to have me. This was during the worst part of my disease, when I was sitting in a dialysis chair 3 times a week and being pretty much of a slug the rest of the time. I really couldn't understand how I contributed anything. He is what kept me going.

 

The transplant process is an interesting and difficult one. I received a kidney transplant after 5 years and have been able to enjoy life again. My lungs are like yours now only my DCLO is 25%. I use oxygen for exertion. I have been turned down at 2 centers for lungs because of damage to my esophagus. There is one more center I will apply to that does high risk transplants after I take a little medical break. The testing is extensive and stressful. I did not qualify for the stem cell study because of the kidney transplant.

 

I know all about anxiety, I suffered from it my entire life. The things that have helped me besides medications are therapy, meditation, emotional freedom tapping and doing things I love. Mindlessly meditation on the movement of the sea, spending time with friends, and creating art again. I travel as much as I can because it brings me joy. 

 

I wish you the best!

 

miocean

 


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#9 Shelley Ensz

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Posted 07 October 2014 - 06:07 AM

Mike, how is your medical situation going?  Have you found out anything more regarding stem cell transplant or other treatment options?  I'm thinking of you, and sending good wishes your way.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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





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