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Rosemary, Volunteer Mentor (@rosemarya)

This and That and Talk - My Transplant

Transplants | Last Active: May 27 2:46pm | Replies (1615)

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@2011panc

This is in response to diet and weight loss through the transplant process. Prior to transplant (pancreas) I lost a great deal of weight due to gastric issues. Ironically while still having giant yoyo blood sugars! At the time I was malnourished and losing hair also. Following transplant I was unable to wear any of my previous clothes because of distension and tenderness in my stomach. Immediately following the transplant I continued losing weight for a while and then gained a little back. Over the last year I have been working on losing again in hopes of getting a better bmi and into the normal range of weight/height/age. I am now down 3 dress sizes and on the brink of needing to shop for the next smaller size. I hope to lose another 20 pounds for a total loss of 90 pounds from my highest ever weight. I am on 5 limiting diets and eat when I am hungry rather than on a schedule. I drink a great deal of water, black coffee, herbal tea and chicken broth. I tend to run low on sodium, so the chicken broth helps with that. Thank God for small favors! lol I limit dairy, fiber, oxalates, fats and carbohydrates. The carb cuts are mostly from dropping potatoes and things made with flour. I also rarely eat eggs or drink soda, as they seem to upset my stomach. I do not have gluten intolerance, I just feel better without the flour products. We mostly cook from fresh at home, so that cuts out a great deal of preservatives also and help me feel better. Exercise is difficult because of trembling and balance issues, but I do my best to keep up with yoga, stretching and walking. I’m thinking of attempting swimming laps, but just have not made that commitment yet. I encourage everyone to do your best and be mindful of what your hands are doing and what you put in your mouth. If you eat something you shouldn’t have . . . we all have. Just start over. We can do this!

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Replies to "This is in response to diet and weight loss through the transplant process. Prior to transplant..."

@2011panc Sorry for my late response. A good resource is Spondylitis Association of America at spondylitis.org. They are the only organization devoted completely to AS and their information is accurate and not sensationalized. I have no idea what your situation is but it is my understanding that having osteoarthritis as a teen is highly unusual and more likely to be an autoimmune disease which would be one of the 100 types of rheumatoid arthritis. Even if you do have osteoarthritis I would recommend seeing a rheumatologist for treatment. If you have had symptoms since you were young then X-rays should assist with diagnosis but much of diagnosing arthritis, if it is not osteoarthritis, is very much an art by the doctor. They basically diagnose by elimination and much of that is with a thorough exam and answering many questions because there are many types of arthritis that can not be diagnosed, or ruled, out with bloodwork. If you are early in the disease process joint damage will not show up with imaging. That is enough from me because I’m not a doctor. I’m pleased you are going to follow up with a rheumatologist to be sure. It is not unusual for people with AS to wait 10-15 years for a diagnosis and it is often not negligence of the doctors. Best of luck as you manage your health. It is a tiring and time consuming task but you are your best advocate. I get it. I’m following up with a cardiologist regarding heart palpitations that are probably nothing but it’s not worth finding out the hard way that I’m wrong.

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