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As of Jan. 29, 2001 I will be leaving for Rochester, NY a week from today. I can't wait. Although there is not too much that can be done, I am hoping for an andersen's diagnosis so it can bring me some much needed answers. I am still having a lot of problems with my j-tube including swelling, pain, more than normal nausea and vomiting, and low grade fever. I am scheduled to go to Hershey Med this Friday (Feb. 2) at 2:00 for an endoscopy so that they can go down and see what is happening. Fortunately they will knock me out for this test, and I've had many so I know what to expect. I am hoping that it will not be a major ordeal to correct the problem. I am praying for no snow next week so we can have a good trip. As of Jan. 13, 2001 I received a letter today stating that my SSDI claim has been approved on the first shot. I am very thankful because I have not been able to work very much and funds have been very tight. My case will be reviewed every three years. Backpayments go to Feb. 2000. As of Jan. 10, 2001 I am having new problems with my j-tube. There is a lot of swelling around my tube. The swelling is on the inside, and gets worse while I am feeding through it. I am also having a lot of pain related to the swelling and increased nausea and vomiting. I have also been running a fever which at times reaches 100.4. I am pretty run down from all of this. I spent Friday afternoon at Hershey Med while my doc looked at my tube and took x-rays. There is not an obstruction at this time. My doctor feels the swelling is caused by my tube formula being too thick. I am now diluting it in hopes that it will clear up the problem. However, so far I am not having any success and the swelling continues, plus the formula is backing into my stomach which is making me very nauseous and making me throw up. Saturday I almost passed out six times because of the severe nausea, and about 5 or six other times because of dehydration. I'm pretty bummed about all of this. As of Jan. 3, 2001 My trip to Rochester, NY has been postponed for a few more weeks, but for a very good reason. I received a phone call yesterday from the neuromuscular clinic at Strongs Memorial Hospital where I will be evaluated for Andersen's. They are just starting a new research study for Andersen's patients, and if I would like to participate in the study, they will cover all travel expenses including airfare, or mileage for driving, motel, tolls (if there are any) as well as all of the testing. This is a huge answer to prayer. The study does not begin until week of Feb. 5, so I had to postpone until that week. It will be worth the wait though! I will also be seeing the cardiologists there as well for evaluation of my long QT interval. I had a very good Christmas. I was able to relax and I spent Christmas day with younger sister, her fiancé (John) and my Bobsey Twin, Karen. Since I don't feel like doing too much, I have become a big movie buff and watch at least five or six a week, sometimes more. It's better than TV though if I have to lie around.
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