My Problem With Drs; Part 1

              

                           Photo just because... 

I have been sick for years.  Many, many years I caught everything and had a chronic sinus infection.

I was with a team of Drs who oversaw my care for 32 years.  I trusted them both, but mostly saw one.  I kept asking why I always seemed to have a sinus infection.  His answer was “because you live in south Louisiana and are allergic to it.”

I got a yearly physical with my husband’s company and it said my lymphocytes were low.  I would alway ask my Drs why my lymphocytes were low.  Every year for 16 freaking years, I asked why they were low.  He said “Because you have a sinus infection!”  For 16 YEARS!  If he had bothered to do a subset test of my lymphocytes, he would have found out I was in dire straits medically.

We moved to and from from Singapore and eventually sold our home in south Louisiana and moved to Oklahoma.  I went to an immunologist for my sinus infection.  She listened to my frustrations and in 15 minutes told me that she suspected I had an immune deficiency.  

She also asked if I was sick all the time.  My answer was, “no more than anyone else.”  She said, “Strange.”

She tested my allergies with the shots in your arms and back; 300+ actually.  I did not test positive for even one - not even the false positive.  That was the second time as I had the same results with my immunologist in Baton Rouge whose statement was, “very strange”.  Nothing else was done.

She kept testing.  It took 8 months for her to diagnose me with a very rare and serious immunodeficiency: Idiopathic CD4+ Lymphocytopenia.  Nothing can help and she assured me I would soon die.  Then, since she couldn’t help me, she dismissed me from her care “as I can’t do anything for you to help.  Good luck.”

It took another year of going to a Drs and them walking me to the door as I “was in danger being in their office”.  Frustration was high so I went for a long time without a Dr.  Finally on an immune deficiency Facebook board, a nurse had me come in to her Dr.  I told her she had to SHOW him my blood results and be sure he would see me.  She did and he blocked off 2 hours for me.  He is still my Dr.  

One time I told him about my immunologist question about being sick all the time and me telling her no more than usual. He stopped what he was doing, and said “she should have asked if I had ever been well.”  It was like a reverse movie in my mind thinking of all the times I was well and I’ll be darned if I could think of even one!  I remember going to an ENT from the time I was 4!!

I said to Dr, “Good point.”  His response was “you have never been well to know how it feels because your entire life you have fought this.”

So that is my ICL story.  Drs do not know how I am still alive but I guess the Lord isn’t ready for me and my body has worked around the t-cell deficiencies.

I would love to find any Dr who would care for me doing physicals and not so much my immune system.  I have finally got an amazing Immune Dr who focuses on immune problems, but physical stuff?  Not so much.  

But I don’t like being walked to the door when I go to a Dr.

I am writing this because I know someone needs to see it.  Someone else has an immune deficiency that they don’t know about and realize Drs don’t know it all.  If you are sick a lot, get to a CLINICAL Immunologist, please.