Monday, October 20, 2008

Report from the Patient Education Group

Thanks so much for all of the positive responses we've received from everyone about the blog. But most importantly...thanks for the concern and prayers for Mark. We are adapting to the news slowly, but surely. We are holding tightly to God's promise that He will not place anything on us that we cannot handle without Him! We also believe that God's plan for us is a perfect plan (despite how we may feel at the moment)!

Last week, Rhonda, Larry, Mark, Mark Thomas and I attended a patient education group in Lexington. The focus of the group was mainly on dialysis, but we received a lot of additional information as well. We were able to speak with a Dietitian, Social Worker, and Nurse. We had received mixed opinions from our Nephrologists with respect to dialysis in the sense that some of the Nephrologists in the practice assured us that Mark would never need dialysis, while others have mentioned that he may have to have dialysis. After attending the education group, we can kind of understand these mixed signals a little better. The nurse informed us that the ideal situation is for Mark to receive his transplant before he ever needs dialysis. She also told us that while this is ideal, it isn't always possible. In other words, if we are still in the process of finding a living donor or a donor from a cadaver when Mark's kidney function gets to the point of being too harmful, Mark would have to go through dialysis. However, unlike many patients with end stage kidney disease, Mark's dialysis would be a temporary fix until he received the transplant.

The good news about dialysis is that there are two types that allow the patient a little more freedom in choosing which option works best with their lifestyle. One is known as "hemodialysis" and uses the blood, while the other known as "peritoneal" dialysis uses the peritoneal cavity. Although hemodialysis typically involves going to a dialysis clinic (usually 3 times per week, 4 hours per visit), peritoneal dialysis can be done at home while you are sleeping. This is the option Mark is considering the most. (I'll post more information about dialysis at a later time.)

Although our conversation with the Dietitian at the patient education group was brief, she did direct us to several useful websites and gave us a great cookbook that has really been a lifesaver! Mark's diet has been restricted in hopes of "lessening the load" on his kidneys. We are restricting sodium, phosphorus, potassium, protein, and cholesterol. Needless to say, it is quite a challenge to balance all of these restrictions. We've found that foods that are low in one area may be high in other areas. I guess it is a good thing that we live in Harlan where we are not tempted by lots of different choices in restaurants! I'll have to brag on Mark's dedication to his diet. He is being very mindful of what he is eating and has been exercising more regularly. He has already lost 9 pounds. He looks even more handsome than usual!

That's all for now...Thanks again for your thoughts and prayers. They mean more than you know! If you find any low sodium, low potassium, low phosphorus, low cholesterol recipes, please send them our way!

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