This is how it all began. This is how I was told by a doctor (while he was standing in the doorway, not even with one foot in the room) that I was having renal shut down. My first thoughts were, okay this can be fixed. Now, I am by no means an overly optimistic person, but in those first few moments of thought, I actually thought, it won't be that bad. Things like this don' t happen to me. I take care of myself, I'm a good mother and wife, I have a beautifully rewarding job where I improve the lives of children....surely at age 28 it's not going to be that bad. Boy was I wrong! It was going to be much worse than I could even imagine.
It all started in December of 2008. I had been sick off and on that month. Mostly upper respiratory infections. I worked with children so I assumed I was just catching everything going around at work. My back hurt a lot but it was probably from picking up the kids and not using proper body mechanics...I thought. I went to the doctor 3 times in December. As many know, I have suffered from OCD for all of my life and am a germ-a-phobe! Well, my PCP at the time knew this and in my opinion blew off my symptoms, threw some antibiotics my way and sent me on my way....all 3 times. Now, on this last visit in December, I had been vomiting for 5 days, I was covered from head to toe in black bruises, some the size of softballs and I requested labs to be drawn, since my doctor never felt it necessary at my 2 previous visits. My labs came back very abnormal. I had a platelet count of something like 75 (way low) and some other out of whack numbers. But again, he said it was probably a "fluke" and I should go home and come back the following Monday to redraw the labs. I left that doctors office and went home and literally fell to pieces. I was sure I had some sort of leukemia. I fell to my knees and begged God to please, whatever happens, please do not take me away from my daughter Madeline, who was 3 at the time. Actually she had just turned three. I remember laying in the floor of her room with the worst feeling in my gut I had ever felt before. I know you can't bargain with God, but I remember crying out loud to him and saying I will do whatever it takes to stay here on earth with my Madeline.
So, this was all happening on a Friday and I was suppose to return to that doctors office the following Monday. Well, that didn't happen. That Friday night I ended up in the local E.R. My memory is very foggy regarding that night, but I do remember lots of pain and lots of shots. My parents came over to help Chris, my dear husband, with Madeline and me. I remained in the E.R. for about 8 hours and was finally admitted to a room. I was there for 4 days with fair but not good health care. It was sometime I think on day 2 when the doctor in the doorway said, "well the good news is you don't have leukemia but you are in renal failure." He said it like, "well we don't have the chocolate pie but we've got apple!" He was so matter of fact and pretty heartless in my opinion and I don't remember seeing him again. My family, on the other hand, was not finished with him yet.
The days at this hospital were just bad. When you are in kidney failure, in many cases you cease to urinate, as in my case. So, as my mom would say, I was swelling up like a toad frog. I was get so big I was unrecognizable to myself. At some point, I had a blood clot in my left arm, so IV's and labs had to be taken from my left arm. In addition to having a germ phobia, I have always had a HUGE blood and needle phobia. SO getting labs from me were like pulling teeth. I was so dehydrated I had no veins and only one arm to work with. That was until "Know it all Danny phlebotomist." One night after I had been given a high dose of pain meds and was finally asleep he entered my room to draw labs. At this point I had been poked so many times I needed a break. But Danny wasn't having it. His words were exactly, "I came into this room to get blood and I am not leaving until I get it." Jerk! Well, he got his blood and I got an arm full of blown out veins that were now useless, triple the size of my other arm and black! My family and I were all pissed and had had enough of this hospital. Here is where God intervenes. My aunt Susie, who happens to be a dialysis nurse, remembers a story she heard years ago about a really sick girl. This girl lived but she told my aunt something that for whatever reason, stood out in my aunt Susie's mind. She said, "If you ever have a really sick person and doctors can''t figure out whats going on, get them to Barnes Jewish Hospital in STL, MO. So, Susie told my husband Chris this. He began researching this hospital and learned it was #5 on the list for top kidney programs.
Well, this was good news because STL is only 4 hours from our house but this "matter of fact doctor" said he "didn't know anybody at Barnes and preferred that I go to Little Rock for a kidney biopsy." Chris told him (in a completely edited version here on my blog site) that he didn't care who he did or did not know, but he wanted me transferred immediately to Barnes. You see, Little Rock didn't even have a bed for me but Barnes did have a spot and was willing to take me.....but the doctor had to make the call. After much arguing, he finally made the call and on the 4th day I was transferred to Barnes Jewish Hospital. This is where I would spend nearly the next month of my "life".
So, just for the record, the PCP I have talked about in this post is NO longer my physician. And the local hospital (we have 2 here in this town) left a really bad taste in my mouth, so I no longer go there. I learned from the above, that sometimes doctors are wrong. There are many great physicians in practice and I am to meet some of the countries best and brightest and can't wait to tell you about them but these recently discussed examples, are examples of the bad ones. Had I not been transferred to Barnes when I was. I feel confident I would not be typing this blog today. I would be dead. SO ask questions, do research, get second opinions because it is your life and your right! Do not let doctors blow you off because he thinks you are "worrying too much" or "over reacting". Because you know your body. You know when something doesn't feel right. Please do not let someone elses oversight cost you or a loved one their life!
Linda Burke left a comment for Jeff Wilhelm
5 months ago