Mark and I thought it may be helpful to give a little background information about Mark's health and some more specific information about his disease-IgA Nephropathy. Some of the information is a little discouraging-so the lighten the mood of the post-I am posting a picture of Mark Thomas!!!!
Diagnosed in 1998: We discovered Mark had IgA in an unusual way to say the least! At the time, Mark was working for UPS. He had a terrible ingrown toenail and had gone to a physician in Harlan to get it removed. Before the doctor began the procedure, the nurse who was checking his blood pressure happened to comment to Mark that his blood pressure was really high. She dismissed it as him being nervous about the removal of the toenail. The next week when Mark was delivering a package to a local doctor's office, he told the nurse about his blood pressure being high. She decided to check his blood pressure and was shocked to discover that it was still very high. She immediately scheduled him to see the doctor. This started the ball rolling and a couple of months later we were seeing our current Nephrologists who performed a kidney biopsy and diagnosed Mark with IgA.
1998 to 2008: As we mentioned in an earlier post, for the past ten years, Mark has been living pretty normally with IgA. In fact, people often find it hard to believe that Mark has a kidney disease! Mark appears very healthy and is very lucky in the sense that IgA hasn't caused any discomfort thus far.
We have been visiting his Nephrologists every 3 to 6 months (depending upon how well he is feeling) and an Endocrinologist every 12 months who have monitored his health. Because IgA is a progressive kidney disease, there is nothing that the doctors can do to reverse his condition. It is our understanding that they can control things like his blood pressure and diet to help preserve the kidney function that he possesses.
When Mark was first diagnosed with IgA, the doctors estimated that he possessed 41% kidney functioning. After ten years, our most current estimation is that he possesses 18% kidney functioning. Typically, when a patient reaches 15% kidney function, he or she receives a transplant. However, it is not an exact science. In other words, we can't assume that Mark will need a transplant the minute he reaches 15 % functioning. Our nephrologist mentioned that some people who have 18% kidney function are already on dialysis and some may have already received a transplant. The fact that Mark is tolerating the presence of his disease is really encouraging. To be honest, we don't really understand a lot of transplant process. Hopefully, we will learn more soon and will be able to post additional information.
IgA nephropathy: As we mentioned, IgA is a autoimmune kidney disease. It is also referred to as "Berger's disease" or "IgA nephritis." Basically, IgA causes protein to be deposited and trapped in the kidneys. This can lead to inflammation and scarring in the kidney. The cause of IgA is unknown and there is not a "cure" at present. A transplant is a treatment not a cure for IgA. In other words, even when Mark receives a new kidney, he will still have IgA and his body will continue depositing protein in the new kidney.
I am posting the links to two websites that have been helpful for us. As we learn more about IgA, I will definitely share it on the blog.