Last week Wednesday after getting my dialysis supplies delivered, I went to see an ENT doctor. He and a medical student looked in my ears and did not seem too concerned. A preliminary hearing test was done, and this test showed that my ears seem to be ok up to 15 decibels. But, just to be sure, the ENT wanted me to go and see an audiologist. Unfortunately, the audiologists had left for the day by that time, so I would need to come back the following Wednesday.

Luckily this week is reading week at school so I could go to appointments freely…and I had one appointment each day from Tuesday-Thursday.

Yesterday, I had an appointment to see a bone doctor. My last bone scan showed that my bones were quite weak. It is always hard to prescribe bone drugs to dialysis patients. The doctor assured me that I am young and…well, I guess she was trying to say that I’m resilient. She prescribed me a nasal spray to use, and hopefully if I get a transplant in the near future, she can precribe me more effective drugs.

Prior to my appointment, I went to the home dialysis unit to get my cbc checked. We’ve been checking that regularly. But I also wanted to get my wbc and c3/c4 checked as I’ve been experiencing some joint pain, especially in my shoulders, fingers, and wrists, for a couple of weeks. So, if you’re experiencing joint pain, who should you call? Your rheumatologist obviously! So right then and there in the dialysis unit, I called.

Unfortunately my rheumy is away until Monday, so I was put on the phone with someone who said they were taking my doctor’s place until he returned. After giving this other doctor the run down of everything that has happened to me in the last month, the first question this doctor asked me was: have you taken tylenol?

I’m annoyed. Instantly annoyed. For crying out loud please don’t talk to me like I’m some sort of idiot. So what it I did? My joints are NOT SUPPOSED TO HURT, so in my opinion whether or not I took tylenol is irrelevant. At any rate, I told the doctor that I hadn’t taken tylenol. I personally don’t see a need to load myself up on even MORE drugs that won’t do anything. I was asked why I hadn’t taken tylenol, and I explained why. I was then asked if I had taken ibuprofen. Again, I said no. I told the doctor that I couldn’t remember the reason why, but I was told not to take ibuprofen in the past. The doctor seemed shocked as “we always tell lupus patients to take ibuprofen”. I told the doctor that no two patients are the same. Is that not obvious?

I was then asked if I had gone to see my family doctor. I said no. Again, I was asked why. I explained that it was not an easy task to get an appointment with my family doctor, and also this was obviously a rheumatology issue so it only made sense to call me rheumatologist!!

I was then asked to rate my pain on a scale of 1-10. I said between 6-7. The doctor then said..geez. Get this:

“It doesn’t sound urgent to me”. What? I asked the doctor how they defined “urgent”. My question was ignored as the doctor went on to say “take tylenol, and in the morning if your pain is still there come in and see me”. Over the course of a few seconds, “come in and see me” turned into “go to emergency”.

Annoyed, after the doctor said go to emergency, I said “have a nice day”, and I used my finger to click the phone off before this doctor could say anything else. SOO annoying! Luckily by that time, Dr. Chan had walked in and heard the exchange between myself and this doctor. He was shocked at the response I had gotten and gave me some real information. He said that they would check my cbc results, and when I came back for my audiology appointment the following day, if my hemoglobin was holding strong, they would put me back on the stopped MMF (cellcept), and this should help. I was happy with that response.

When I came back to the hospital today for my audiology appointment, I went to the home dialysis unit where my nurse told me that my hemoglobin was 97 (or 9.7). So it’s on its way up, which is great. My c3/c4 hadn’t come back yet, but my wbc was 13 (or 13000). Normal range is around 4.5-10 (or 4500-10000), so it is a bit high. My nurse and I both figured it must be lingering infection from my ear.

I went to see the audiologist and then the ENT. I looked at the report as I walked back to the ENT, and it showed that I had mild ear lost in my right ear, and minor ear loss in my left. I don’t know which one is supposed to be “higher” or “worse”. The (new) ENT looked in my ears and at the report and said that everything appeared to be ok where my ears are concerned. He didn’t feel that I needed more antibiotics. He said that after 1 month, 70% of people no longer have the popping sensation in their ears. After 3 months, that number goes up to 95%. If my ears still have fluid in them after that point, I would need to go back to the ENT whereby they would remove the fluid manually.

This doctor didn’t feel that my wbc had anything to do with my ear, and he felt i should go back and talk to my nephrologist about that. I have an appointment to see him tomorrow. So we will have to see what he says. I do feel that perhaps this wbc value might have something to do with the pain I’m having if it is some sort of rhuematalogic(sp) response.

But hey, I’m not a doctor…so excuse me while I go and take some tylenol.


1 comment on “Passing the Buck

  1. These experiences are incredibly frustrating. I was passed around yesterday from doctor to doctor and I am sick of it. Also, that rheumatologist seems like he just doesn't know what he is talking about. It's good that you stuck up for yourself…I should get lessons in that.
    I'm glad your ears are doing better and that you updated!



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