I sit here exhausted, but I wanted to give an update.
My hemoglobin is on a downward slope. In the span of 24 hours, it went from 68 to 62 to 54 (6.8 to 6.2 to 5.4). I have had bloodwork done for many different viruses, so I suppose when I go back to the hospital on Monday morning they’ll be able to tell me if I have any of these viruses. Also, what started off as a mild blockage in my left ear turned into severe blockage in both ears and terrible pain.
The doctor that saw me (a doctor I had never met before) and told me that my severe ear (and subsequently, face, neck, behind the ears,etc) pain was probably due to my low hemoglobin. I was in some of the most severe pain I had ever experienced. The idea that he attributed it low hemoglobin was, quite frankly, shocking.
When he came back for a second time, i told him how severely I was in pain. I told him this as I squinted through the tears in my eyes from all the pain I was in. Again, he told me that it was probably my hemoglobin and asked me if I had tylenol. I told him that I took tylenol and it did nothing for me. He said i would probably feel better after I finish getting the blood I was currently receiving from the transfusion.
I was shocked. Was he really going to allow me to sit here, in severe pain and crying, based on the fact that “maybe” the transfusion would help…??
I continued to squirm around and cry quietly as the home hemo unit was quite full and I didn’t want to “bother” anyone. One nurse came around and saw the pain I was in. She put her hands on both sides of my face starting from my temples and gentle pushed her hands into my face. She gently moved down my face and kept doing this. It seemed to slightly bring relief to the searing pain in my face.
When my nurse came around and I told her again about my severe pain, she asked me what the doctor had said and if he had looked in my ears. I told her what he had said about the hemoglobin, and that he didn’t bother to look at my ears. In anger, I also said “NOBODY HERE IS HELPING ME!!” rather loudly. My nurse went off to call the doctor, who by then had already left the home hemo unit.
When he came back, do you know what he said to me? He said “How can I help you? What’s wrong”. Seriously?
I repeated “My ears hurt.” I went on to tell him it was my entire face hurting. He was still convinced that it was my hemoglobin but he finally agreed to look into my ears. When he looked, he said both of my ears/ear drums were clear. That said, he finally”relented” and authorized the ordering of “Tylenol 2”. I knew this wouldn’t help either…but what could I do?
The worst part was that the tylenol needed to be ordered from the pharmacy. My nurse told me 10-15 minutes. Ugh.
After about 20 minuts, I asked again. The nurse then told me the pharmacy said 30 minutes. “Why so long??” I asked, now upset. I had sat there for hours in pain being paid no mind, and now i’m being told I have to wait a total of nearly an hour for pain medication?? She told me that it is what the pharmacy said but she would follow up. A few minutes later my nurse informed me that another nurse was on the way to pick it up.
I got it, I took it, and 30-45 min later, as I suspected, no difference.
Oh, did I forget to mention that this doctor had asked me to STOP taking my cellcept/mmf because it can sometimes lower your hemoglobin?? Oh wait, you mean the medication I’ve been taking without incident for about 12-13 years???
I’ve had a situation where a doctor I never met before in my life came out of nowhere and started stopping/changing stuff. 2 weeks later I was in the hospital…getting wheeled in a hospital bed to the procedure room where they would be entering a cathetor for dialysis into my chest. I always knew my kidneys would fail, but this trigger happy doctor certainly sped up the process for me.
I thankfully got a second opinion. After being home for a bit and massaging my temples from the severe pain I was in, I began to feel fluid trickling down my right ear. I grabbed a tissue and saw the clear fluid that was slowly coming down my ear on the tissue. It also started to come out of my other ear too. Um, weren’t both of my ears “clear”?? After speaking to another healthcare professional, I was able to get ear drops which made me feel a million times better.
Soooo irritated. I wonder what I will say on Monday when I go back for a follow up??