I finally looked up my diagnosis codes from my Medical History to find out what they meant. I did this because after 2 attempts to get answers from the Nephrologist without any I had enough. I saw the Nephrologist over 3 weeks ago. His secretary is also the secretary for my father’s Nephrologist. I have had to talk to her before on behalf of my dad. She isn’t the nicest or most patient person. She was irritated I couldn’t get out what needed to be said because of my stutter and word grasping. She never returns phone calls and neither do the Doctors.
Today I decided to call my Urologist to see if the results were sent to him. The nurse told me she talked to the other doctor’s secretary who said she never received any phone calls from me. The nurse then interrupted me while I was trying to tell her that I have talked to this person before because of my dad. She said “Wait this is about you so could you stop talking? I don’t know what you expect me to do about this. The other doctor was on vacation and your file is in his bin to go over. IF our Doctor had seen anything IMPORTANT in what was sent to him he would have called you.” I tried to explain that I was confused and didn’t know what to do next. I was being told I would have to live with stents for the rest of my life or eventually have tubes going into my back directly to my kidneys. This didn’t sound acceptable to me. With the stents I would be going under anesthesia every 3 to 4 months. That isn’t good for someone like me.
My Conversion Disorder almost prevented me from waking up from the anesthesia the last time because I was stressed and scared. My brain wanted to make everything go away and leave me in a Catatonic state. So imagine doing that every 3 to 4 month for the rest of your life. I don’t even want to think about the tubes coming out of my back.
I don’t like being spoken to like I’m a bother or not important. I don’t like being dismissed and embarrassed. I really don’t like being ignored.
The lack of compassion I have seen in most of the doctors I’ve visited lately is overwhelming. I am disgusted. I have no idea what to do next when I’ve been to everyone in my state and a specialist at Mass General.
Here are some of the diseases/disorders/abnormalities I have been diagnosed with.
- Bipolar Disorder
- Conversion Disorder
- Celiac Disease
- Chronic Kidney Failure Stage 3
- Vitamin D resistant Rickets
- Intestinal Malabsorption
- Monoclonal Gammopathy
- Spinal Stenosis
- Gallbladder Disease
- Iron Deficiency Anemia
I’m pretty sure I’m missing something but you get the point.
By the way the Nephrologist just called and was very kind and sorry about not getting back to me. He explained that he had a few more labs to go over but was pretty sure that there really isn’t anything anyone can do for me. It looks like the stents are my only option. He was nice and sympathetic but why did I have to go through so much to get one person to care?