I’ve always loved playing Powerball. Chance of winning is one in 300 million. I have two season tickets. My biggest prize has been $50. I enjoy receiving the small winning checks of $14 dollars once in awhile. Of course, I always lose more than I win in any one year.
Well, I guess I won another lottery that I did not sign up for! It is called Goodpasture disease—-one in 1 million chance of getting this! For some reason, something turned on my auto antibodies to attack my kidneys. Additionally, I suffered from giant cell arthritis. If I combine both conditions, the chances of one being effective are extremely low. It is one in every 2 million! I’m a real winner!!! I’m sure that Ernest Pasture was a great scientist. Yet, this disease is neither good nor a delightful walk in a beautiful pasture! I’ve always loved reading case reports, and now I have become one. The young medical student working with me is eager and talented. He is going to write this one up. He will probably win a prize for it!! Like I did, he will join the military after medical school. It’s exciting to see him so interested in medicine. It’s also great that he is taking interest in my case. He has been my advocate, speeding up my biopsy and telling me all the updates.
He brought me pictures of my renal biopsy. They showed the glowing antibodies. These antibodies are destroying the cells, the membrane, and the filtration system of the glomeruli of my kidneys. The pictures were art like, but for me not so much! The nephrologist affirmed that only 46% of my glomeruli have been affected. I interpret this to mean nearly one half have been attacked by my own auto antibodies. It is just unclear what activated these at the beginning of November. This activation has caused such devastation not only to the kidneys, but also to the entire body. My recovery, they say, is about 80 percent. The need for long-term dialysis is 20 percent. This is certainly improved from 20 years ago due to research and drugs.
Ironically, this is the week I’ve been waiting for. The series by Ken Burns, “The American Revolution”, was 10 years in the making. I researched this topic for the last year. I walked the Boston Freedom Trail with Justine. The American Revolution was a long battle, not just one fight. My own immune system is the enemy and the battle to quiet it will take time.
Yesterday, I began day one of 21 of the fight. This regimen includes daily plasmapheresis and intermittent, temporary dialysis. I am taking a host of new drugs. One of these drugs is so powerful that it requires special handling. Cyclophosphamide is required because of all the toxic effects that can have in the future for me. These issues extend to providers who touch this medication. The active medications are counterbalanced by drugs that are trying to protect me from diseases, such as pneumonia and fungus. I used to take little medicine. Now I am taking many medicines. They all have horrible tastes or serious side effects. The sessions in the dialysis clinic are long but fortunately, the staff are kind.
This day ended in an unrestful night once again. I found myself staring at the lights of the city out the window. I was hoping I allow myself into a deep somber. I actually felt refreshed with just 3 hours. I’m sure the steroids are messing with me. The day started early, at four this morning. I tried to clean up and feel human. I was capable of walking the floor and that felt good. We’ll see what today brings. I hope that this 21 days of therapy will turn off my immune system. It seems so much to want to punish me. I beg for it to be at peace and quite hoping these therapies quell its furor.


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