How To Tell When Your Immune System Is Running Your Life

Wow. That last post I made was prescient. The very next day I was flat on my back in the hospital. Talk about powerless!

The title of this blog and the sentence above this one were as far as I got for several weeks. Life intervened.

I have so much on my heart that I have writer’s block.

I did have a shaky and frightening ride through the medical system at the first of June. I spent a week in the hospital with elevated liver enzymes, in pain, and nauseated, while the doctors diddled around not knowing what to do. I finally had a biopsy and some imaging tests done but it was much ado about nothing.

I was released on a Saturday with an infection in my bladder that was two weeks on with no improvement. The doctor who released me told me the infection was resistant to what they had been giving me in the hospital and to get to my urologist soon.

By that Monday I was really sick and the infection had spread. I saw my urologist and she suggested I try a fairly rough antibiotic while she re-cultured the infection and we gave me 24 hours to either improve or go back into another hospital.

This was frustrating and depressing. I ended up in ER and due to all the messing around and past history of IV drugs once a month, I have no veins left: NONE.

The nurse in ER could not get an IV into me even with an ultrasound machine and after forty minutes of looking.
She managed to get a tiny vein to hold for about an hour and that was the only I got any medication at all. I could not get a bag of badly needed fluids or a second round of medicine in the vein before it collapsed.

This whole thing with my veins is becoming a huge elephant in the living room.

None of my doctors wants to sign off on letting me have a port a cath placed (which is an IV line that is accessible through your chest and just stays open).

The reasoning is two fold: 1. I am not receiving any sort of infusions at this point that require venous access on a regular basis. I take my immune system meds subcutaneously through my tummy each week. 2. A port a cath can become infected and that is very dangerous.

I understand both points. However, when I do need someone to access my veins, it is a nightmare. All of the nurses that work with me ask, “why don’t you have a port?”
I get stuck over and over and over and everyone gets frustrated. It becomes very painful and stressful for me.
It hurts like hell to get ten pokes for one little IV that then blows up.

The question is: which doctor is going to order the thing?

I don’t know.

I need to have out patient surgery on my eyelid and I am scared to even go because of the IV problem.

It’s ridiculous.

But, in further news, both my gastro doc and my rheumy have fired me. So, I guess moving on is a good idea.
It is depressing but I know this happens with people who are complex and ill.

On a more positive note, I have prioritized taking care of myself as a much higher item than I was. I have decided it is a non-negotiable item.
To that end I am joining couple of groups that I think will help me out.
I am also going to stress out less about my kids. They will manage.
So, June has been tough but I managed to come out ok.
And what about today? Today is the 22 of June, 2015.
It is the 50th anniversary of my birth.
That is crazy!

I think I’ll just put all the bad stuff on the shelf and LET THE GOOD TIMES ROLL!!!!

2 Replies to “How To Tell When Your Immune System Is Running Your Life”

  1. What?! Two docs have fired you? I hope one isn’t the lady you really like?
    I had NO TROUBLE with my cath – I think you’d be a great candidate.
    Hang in there sweetie.
    Happy birthday!!!

  2. Yes. Doctors fire difficult patients. I have heard of it all over the place in the CVID community. I think there should be some sort of protocol for it. My experiences have all been pretty awful. It is a feeling of:
    if so and so the doctor can’t fix me and does not want to see me anymore, then what does that mean?
    I try to just bury the emotional side of it and soldier on to the next doc. I have, however, learned to spend less time worrying about it. I just have to move on and hope the next Dr. will have a better answer or at least operate out of a sense of integrity.
    At this point, I am very jaded.

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