My journey is long and continuous. It covers many states and has many opinions. I would like to start on a good note. My doctors at Barnes Jewish were top of the line. Like Susie says, "If your really really sick, get to Barnes Jewish." The doctors at that facility are very engaging, respectful, intelligent, professional and polite. But even more important, is that they don't give up on you. They give you hope, not false sugar covered hope, but REAL hope. They can do this because they are brilliant and good at their job. I have one of the best hematologists in the world at Barnes. Later in my story, I meet a brilliant nephrologist, who has opened so many doors for me such as the Mayo Clinic and Iowa. One of the lead nephrologist during my HUS stay was so kind and smart and everything you could want in a doctor. My lead immunologist at Barnes was able to make me smile even on days I felt like throwing in the towel. I cannot find enough positive adjectives in the English language to make you understand what a top notch facility Barnes Jewish is. I guess that is how you feel about a place when they save your life......twice. And I guess after receiving top of the line health care, it is hard to go backwards.........welcome home!
I don't even know where to begin. Everything I described in the above paragraph is the exact opposite of my experience here. And for the record, I want it to be clear that this is how I was treated. These were my experiences. Like they always say, there are two sides to each story and I am very aware of that fact, but sometimes there is a right and a wrong. I do not have grievances with our health care system. If it wasn't for the system, I would be dead. If it wasn't for medical advancements, I would be dead. But I also know there are good doctors and bad doctors and I have experienced both.
My family saw some of the crazy things that happened at my hometown hemo clinic. I have never been happier to have a family full of nurses, especially that dialysis nurse! If it wasn't for her, I would probably be very sick or possibly dead. She taught me about dialysis. The right way to do something and the wrong way to do something. I had an insiders view of this dialysis world. Unlike my fellow dialysis friends, I knew things were not right with this clinic. I watched the staff very carefully. You do that when your life is on the line. I had friends that witnessed some of the madness. Sometimes, it was just absurd what some of the staff would say or do.
I am a believer. I believe in God. I believe I have kidney failure for a reason. I believe that reason is to educate and help others get the health care they deserve. I am an advocate. I believe in the patients rights. I believe anything can happen. Although as I am writing this, my kidneys have been shut down for 15 months, useless. But I believe if God wanted to right now at this very moment He could heal these small, atrophied, peanut size kidneys. He could bring them back to life. I do believe that. Now medically does that sound reasonable, probably not. But here is how my hometown nephrologist put it to me. I was on hemo and had been for about 3 months. I asked him, "what would be a sign my kidneys were waking up?" He told me if I started urinating that might be a sign. So I prayed all of the time for pee!!! And one day I began peeing, just a little and by the time I saw him next month I was peeing about once a day. I am a believer and I believe that prayer was working. So at the next month rounds, I tell him about my urine! So excited and hopeful. He then asks me, "well what color is it?" I said "clear!" Because for a healthy person, urine should be clear, right? He said, "No! Your urine needs to be yellow to rid the body of toxins." Okay so I began praying for "Yellow Pee!" I had everyone I knew praying for yellow pee. So, by the next month, I am beginning to get interested in transplant information. He basically tells me this, " there is no point in doing a transplant because as soon as you got one, your blood disorder would re attack it and probably kill the new kidney immediately and we wouldn't want to waste a perfectly normal kidney." Then he proceeds to tell me about a lady he read about who had a DIFFERENT kidney disorder, and as soon as they attached the new kidney to her, it died. That is not hope. That goes completely against, "Do no harm!" That crushed my spirit and I lost hope for a little while and it was the beginning of a really bad relationship with this doctor. He may not have harmed me physically that day, but emotionally he did. No doctor at Barnes ever said that to me that way nor would they. I knew it was a possibility a transplant might not be an option but you have to give your patient some small amount of hope, a will to fight. It was still so early on in the game. He had no right to take that from me.
Linda Burke left a comment for Jeff Wilhelm
11 months ago