I have tried to explain many times to friends and family how it felt to lose my ability to think. Being able to think through problems or even to write was such a vital part of my personality that when I lost it for a time, I felt like I lost myself. The only person who even understood what I tried to say has a hole in his brain from an accident that should have killed him twenty years ago. It is one of those things that if it hasn’t happened to you, then you will never understand.
When I was put into the ambulance on my way to Homburg hospital, a small teaching hospital some distance from Ramstien, I didn’t know what was ahead for me. I felt some relief that I was going somewhere to someone who would be able to rescue me from my symptoms. I wouldn’t die.
I was carried into the hospital because by that time I couldn’t walk or even lift my head. I looked up into the faces of a man and woman in white coats. They asked me in German to tell me how I came to this point. I told them of my eyes, my roving pain, then going to the opthalmalogist. I talked about an autoimmne disease. When I was finished, the man (who I found out was one of the head doctors and instructors) patted my shoulder.
He then said in English: “You can relax now. We will take care of you.”
There was such relief. I had been holding my brain, my mind, my heart together. I knew they would find out what was wrong with me. They would not leave any stone unturned.
The next day the nurse who spoke a rudimentary English tried to take 20 vials of blood out of my arm. She couldn’t get more than a drop from my arm. So at that point they scheduled me for a blood transfusion.
Because my brain and body was filling up with creatinine, (I was up to 8.8), I can’t remember the actually timing of events. I know that they took me down into the lab so that they could put a tube in my neck into my carotid artery that went to my heart. It was used for my blood transfusion.
Also, they started me on a procedure called hemofrieze. I think that it is actually called hemo pharesis (or something like that). The patient is connected to a machine and her blood is circulated through several filters. The albumin is stripped out of the patient’s blood and replaced with new albumin. This procedure saved my life. I had it done three times a week for two weeks. It is very cold unlike dialysis. I had one dialysis procedure (which is warm)… They didn’t want my body to get used to dialysis because my kidneys might not heal enough to come back.
Additionally, they took a biopsy of my kidneys during the first couple of days. I laid on my front, while the doctor put a needle in my kidney. It pinched for a moment. They made me lie on a stone for 24 hours so that it would heal. I was sore and hurt for awhile afterwards.
It is amazing how a person can adapt to almost any situation. I began to use some of the German that I learned in school. I talked to other patients. There was an older man who was connected to the dialysis machine for 8 hours a day. I think now that he was at the end of his life.
Because of the creatinine levels in my blood, I was unable to think clearly. And then two weeks into the treatment, one of my doctors told my husband that he had good news. They could treat me and even save my life because I had a vasculitis disease.
“What’s that?”… we had no idea. My husband looked it up when he got home from the hospital. But after looking up information on vasculitis and Wegener’s Granulomatosis, he became grimmer than ever. In 2003 the information online was not hopeful.
That night they gave me my first infusion of cytoxan. The doctor who prepared me for the infusion explained that I might have some adverse reactions (nausea and possible vomitting) after taking the infusion. Fortunately for me, the first infusion was fine. I have to admit that I was in tears when I was told that the cytoxan would most probably make me infertile. Funny, I was 41 and had never thought that I wouldn’t have a child eventually.
But it was necessary. I have learned to use those words. It was necessary. And it saved my life. I was able to get up and walk the next day. I began to show some life in me. I even showed interest in books and movies. I didn’t read well because I was on 100 mg of prednisone. I still slept a lot. And because my kidneys were not stable yet, I started having high blood pressure. Even worse, I lost so much weight that I was a skeleton. I went from 180 pounds to 140 pounds. I didn’t look good at all.
It was a personal triumph when they took out the tube in my neck. And when I was allowed to go home, I was so happy. But it wasn’t over yet.. not by a long shot.
(story continued tomorrow)