Hi Erin,
Welcome to the forum. It seems like you have competent care. Given the number of organs involved, it seems you're making slow, but steady, progress. It took me about 18 months to consistently feel well and resume most pre-wegs activities.
The weight loss was pretty tough. I made some progress (about .25 kg/month) with portion control. I lost about 5 kg in two months once my wife and I started eating healthier. We eat quite a bit of fresh produce, almost no processed foods, and cut out wheat and corn. Snacks now consist of nuts (almonds and cashews) and fresh fruit. We cheat a bit when we eat out, but there are several restaurants where we can eat pretty healthily.
Physically, I'm pretty close to where I was pre-wegs. I walk 3 miles (5 km) 4-5 times a week. I walk the occasional 9 holes of golf, do my own landscaping, and chase my grandkids around once or twice a week. Life is good.
Some advice I got from the doc who diagnosed me: Take your meds as directed and live your life as fully as you can. I'll add: Be actively involved in your care, make sure your docs fully explain their treatments, expected outcomes, and possible side effects. Learn as much as you can about the disease and use your knowledge to your advantage.
Good luck and keep us posted on your progress!
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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