Something that this disease has taught me is humility, and that there is nothing wrong with asking for help when you need it. In fact there are many people in your circle who are waiting for an opportunity to help you in any way they can. After being in a rut for several weeks at the alarming cost of a visit to Patient’s Medical I began to think of solutions. I couldn’t just sit here and not at least try to do something. So I checked my credit card balances and saw that I had over $10,000 in available credit. Now we all know what this really means. This amount if spent would turn into almost $40,000 of debt. But if I died, who cares how much debt I had? So I decided to bite the bullet and make an appointment with Dr. Kamua Kokayi, the doctor recommended by the girl from my Bible Study.

I was nervous for many reasons: 1. I didn’t know how much I would have to pay at the end of the visit 2. What would he actually recommend for me? 3. Was I putting too much hope into this treatment/doctor? 4.What would I do if it didn’t work? I’m not sure if I had ever been this nervous for a job interview or a date, but then again this was life and death. In the meantime, I was able to be somewhat useful to myself during the few weeks I spent as a hermit. I went to a nephrologist at the recommendation of the cold-hearted rheumatologist I had visited a while back on the Upper Eastside. The UES doctor said he detected that there was some kidney involvement with my disease, and I acted like I didn’t hear him. He wanted to be sure so he was going to do a few more tests and have a nurse get back to me. Well she got back to me and told me that I would need to see a kidney specialist, and that they could set up that appointment for me if I like. I did not like, but I went with it anyway.

I went to his office and it felt like a home. There were large comfortable couches in the waiting room, framed by a warm blue paint on the walls. The receptionist was actually nice! I already felt more relaxed but the reason for my visit remained in the back of my mind. There was a large screen flat TV and a comfortable couch so I decided to relax and watch television. As soon as I had settled in and was probably two minutes away from taking off my bra and spreading out to take a nap, I heard the nurse call my name to come to the back. Hearing my full name out loud jolted me back to my reality and the reason I was sitting on this plush couch. I walked back with her to do the usual vital checks and she left me in a room undressed with a hospital gown on waiting for the doctor to come in.

He walked in with the warmest smile on his face and kind voice. I really appreciated his cordial manner, as I am sure he could sense my anxiety. He started out with some conversation asking me questions about who I am, what I do, where I am from. After we got past the niceties he plainly, but gently laid it out for me. He told me that according to my labs I definitely had some kidney involvement with my diagnosis and that he would like to do a biopsy on me to get more information. He told me that the procedure was not very invasive, but I would have to come in to the hospital and be placed under general anesthesia. He told me not to get nervous or anything because right now it may not be that severe. He started discussing having his nurse schedule the time for the biopsy, and then he asked me if I had any plans for the weekend. What, I thought, who cares about a weekend, why do I need a biopsy? My mind was racing and I was confused to how this disease went from covering me in rashes and lesions, to taking out my hair, taking away all of my energy to now affecting my kidneys. What kind of schizophrenic disease is this? I told him that I would prefer if they called me to schedule and as soon as he left the room I got dressed and left the office as soon as I could.

This was all to much for me, so I put it out of my mind as soon as I left the building.  This was crazy talk and I couldn’t even imagine having issues with my kidneys.  I never scheduled that biopsy, looking back on that moment I wish I had.

 

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