jeannie mcc Posted August 13, 2019 Hi All, Here I am again, back to affirm there can be a good life with scleroderma. It will be 13 years on October 26th since I was diagnosed. At that time I had mild pulmonary hypertension, mild interstitial lung disease, no skin thickening, and horrific GERD. Um, I had 2 dogs and no grandchildren, and was an active hiker at high altitudes. Things have progressed some. I now have 4 grandkids and 3 dogs! The #3 dog wasn't really intended but once you get on the herding dog rescuer list, things happen... As for the scleroderma, the PH/PAH is now moderately severe and the same can be said for the ILD. GI-wise, my esophagus is 'dead', there's no motility at all. I am starting to have swallowing issues and some bowel issues. However, thanks to some really great doctors and a few new medications, I am still doing pretty much what I want, albeit with supplemental O2 . I no longer hike above 8400' /2600m, because I just can't carry enough O2 to do longer/higher hikes. I’m a lot more careful with my diet and the mechanics of eating. We still travel and I have been doing some flying as P2 with a friend. I guess the biggest impediment to doing everything and anything I want is my age, having hit 72 this year. Dealing with age-appropriateness is such a pain. :-) I hope everyone is well and happy, Fondly, Jeannie Quote Share this post Link to post Share on other sites
Joelf Posted August 13, 2019 Hi Jeannie How lovely to hear from you and I'm so pleased to hear that you're very much alive and kicking!! I'm hoping that all your family and dogs are well; I'm still alive (after ten years diagnosed) as you can see and continuing much the same, without too many nasty scleroderma surprises! Best wishes to you and the family, Quote Jo Frowde ISN Board Member ISN Secretary of the Board ISN Assistant Webmaster SD World Webmaster ISN Sclero Forums Manager ISN News Manager ISN Hotline Support Specialist International Scleroderma Network (ISN) Share this post Link to post Share on other sites
Shelley Ensz Posted August 22, 2019 Hi Jeannie, I'm always thrilled to hear from you! I'm delighted that you are enjoying an abundance of grandchildren and dogs. I'm sorry things are still progressing but also glad you have them treated as good as possible, and still active and making the best of things. Quote 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. Share this post Link to post Share on other sites
Margaret Posted August 26, 2019 Hi Jeannie.....it was 13 years ago this Nov, that we were told Gareth's esophagus had hardened and he had the + blood work for something called scleroderma. As most, I totally freaked out over Dr Google reports and figured he would die in a few years. Relatively speaking, though, he's doing pretty good and enjoys life. He has had his setbacks, especially when they have to do surgeries, etc. He has two part time jobs, lives in a group home with 2 other great guys, and LOVES to travel......road trips, cruises, or flying off to some other country. He's involved in Special Olympics, to the best he can, and enjoys winning ribbons & metals. We read his pain and fatigue level by the facial expression and brow ridges!!! He's good at taking meds, so the pain is brought under control. This site has truly been a life saver, especially in the beginning years when fear and ignorance was sky high!!! Take care, everyone. Margaret Mom to Gareth, 31 years old, DS/ASD Quote Share this post Link to post Share on other sites
