8 posts in this topic

Hello everyone,

Well, the jury is in on all my yearly tests and basically I am doing as well as I can be.

 

PFT: 55% lung capacity, 38% diffusion. They are now discounting a test from right after my kidney transplant where it went up to 43% as invalid and that means I have plateaued in the high 30's. Although that is not that great, it is great that it has stabilized.

 

6 Minute Walk: No desaturation, started at 98%, went down to 96%. This is very good because if I was desaturating along with the low diffusion it could be indicative of Pulmonary Veno-Occlusive Disease. (That was a new one for me and I am REALLY glad not to have it!)

 

Echo: No signs of pulmonary hypertension. Slight enlargement of the heart and some hardening but probably no more that a person my age would have. No need for a right heart catherization. (Yea!)

 

CT Scan:No increase in fibrosis since 2010 although there was a significant increase 2009-2010. No other treatment available since I am on myfortic as a rejection medicine and am on the highest dose.

 

Lipid Profile: Off the statin for two months and my cholesterol has gone from 192 to 205, slight increase in triglycerides. I see the cardiologist next week and we'll determine what to do. The anti-rejection medicine I'm on causes high cholesterol.

 

Kidney Transplant: Creatine is 1.2 and stable at 22 months out. Everything is going well.

 

Skin Hardening: Softened to 0 from 45 on a scale of 0-50 over the 7 years of the disease.

 

So, all is as well as it can be in sclerodermaland. I am following the typical pattern of diffuse scleroderma with sudden onset of symptoms and skin hardening, major organ damage, gradual softening of the skin and then a plateau. If I continue to follow the pattern I will stay where I am, but we all know how that goes and can only hope that it does.

 

You all have encouraged me so much over the years, I hope this brings encouragement to others.

 

:thank-you:

 

miocean


ISN Artist

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Hi Miocean,

 

Your results do sound very encouraging and I'm so pleased for you! :emoticon-congratulations:

 

Thanks for the link on Pulmonary Veno-Occlusive Disease; it was very interesting and I've never heard of it either. I agree.......it doesn't sound like something you'd want!! ;)

 

I really hope that you continue to remain stabilised and perhaps maybe even be able to have some improvement in the future. This definately calls for a Sclero Happy Dance!!

 

:emoticons-line-dance: :emoticons-line-dance:

 

My very best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Miocean

 

:flowers: Hooray for you!! I am glad things have evened out and you know where you are!! :emoticon-congratulations:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean ,

 

I was so happy reading your post that I had to X out of AOL and go to Mozilla just so I can put up smiley faces and dance!!! For some reason, AOL doesn't allow them to come through. Congratulations, Lady!!! :emoticons-yes: You have been such an inspiration to me over the past years.

 

:happy-day: :happy-dance: :emoticon-hug: :happy-dance: :happy-day:

 

 

Take care, Everyone.

Margaret

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Hi micoean:

All good news and how wonderful. Not that anyone wants to be a textbook case but plateaus are great.

Warm hugs.

 

And Margaret, I can't find the smiley dancing faces either. I use Safari, yet I saw them when I first started on the site. I'd hate to think the smiles have disappeared.


Kay Tee

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KayTee,

Safari will not support the emoticons or options for text. I have to use Firefox to access the ISN fully. The new upgrade to the ISN for some reason does not work on Safari.

 

miocean


ISN Artist

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I am SO pleased that you received the reports you did and that all seems to be holding its own, mi!

 

I LOVE news like that! I am ALSO thrilled that you were able to join us in chat this morning! Hope you are able to do that more, as we love to see you!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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...........I am ALSO thrilled that you were able to join us in chat this morning! Hope you are able to do that more, as we love to see you!

 

Me too, Miocean!! :yes:

 

It was lovely to speak with you in chat and I'm hoping you'll join us many more times!! :emoticons-clap:

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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