Tuesday, December 17, 2013

I Have No Words.....

In some ways this will be a tricky post to write because what started my day was a talk I had with Thomas. I learned so much about what his delusions contain and I can't talk about them here. Let me just say this, I have apparently been living in the dark about him because what he told me knocked me backwards quite a bit and I left a bit disoriented right now.

What I can say is that his job is causing him increased paranoia. He told me that when he started his job he was at a 0-1/10 in his paranoia and he is now a 5/10 and for him a 5 is incredibly high. He left work early on Sunday because he couldn't manage the paranoia anymore and he had to get out of there right away. All of the usual culprits that increase paranoia are there. Between the crowds of people shopping due to the holidays, him having to go outside in the dark and gather carts alone, and most importantly and most telling, the security cameras in the store are causing him a immense amount of paranoia and accompanying anxiety. He is suffering terribly and came to me yesterday a defeated young man and was desperate for some relief. He said he felt that his Geodon is no longer working and he's scared that nothing will ever work for him for very long. I told him that many people with schizophrenia suffer the same fate, discovering that a medication only works for a short time for them and then they find themselves quite sick again and needing a new medication.

What I can't say here is information about who he believes he is, who he really is (not who he is as my son but who he believes he is) and there are many other things that are very scary that I just flat out cannot even come close to figuring out how to help him with. I am completely dumbfounded but at the same time now have explanations for things that I have seen in him that I previously couldn't figure out about him.

With that said, let me move on to his appointment with his PNP (psychiatric nurse practitioner) Chad. We went in and I handed him the notes that I had taken while I was talking with Thomas earlier in the day. I also asked him if he had read the letter from Thomas' therapist and he said he had. He took my notes and read over them and set them down and turned to Thomas. He told him that he wants to put him on clozaril. Now, I am aware of this medication, I know it is considered a "last resort" medication and Chad even confirmed that to me. He pulled no punches with what he said next as he outlined the risks of the medication. He told us about the weight gain and the sedation and inevitably about the damage it can do to Thomas' white blood cells. In a moment I will never forget, he looked straight at Thomas and he said,

"The odds are it will be ok but (and here is where I lost it inside) it could kill you."

I looked at Thomas in that moment and watched as fear and something I don't have words for washed over his face and he said a quiet, "OK".

Chad continued to outline side effects and that since Thomas had reacted so strongly sedation-wise to his Geodon (apparently Geodon is one of the meds that usually doesn't cause much sedation) that in all likelihood Thomas would fight off serious sedation while titrating up on this medication. Then he asked Thomas,

"Are you on board with this?"

"Yes, I am." came a quiet voice from Thomas.

Then...as if what I had already learned about Thomas' inner world and his fight to stay at work wasn't enough...as if being told he could die if he takes this medication wasn't enough...Chad then informed us that he was leaving the practice and 2 others there would be going with him. He told me that the second opinion from a psychiatrist that Thomas' therapist had recommended wouldn't be possible here in the valley because there is only one and they are in his practice and they are completely booked into the forseeable future. He also looked straight at me and said with disgust,

"I wouldn't even recommend this person anyway and even more so this entire operation (which includes our one and only psych ward in the area)."

Now, I have heard there was some unrest in the practice but having heard Chad say he wanted nothing to do with the operation let alone that he was so unhappy there that he was leaving on January 3rd scared me to death. So now, not only was he about to throw us to the proverbial wolves by prescribing clozaril and not remaining in the practice to follow Thomas' progress but he was giving us nowhere else to go for help.

I told him that I would drive elsewhere to find help for Thomas and Chad recommended a doctor in a far away town in the same office as my psychiatrist and he said he would try to get him an appointment with this man but it would be hard because he can't really fill the doctor in on Thomas. was he kidding me??????? I then asked him,

"Can Thomas sign a release so that you can say everything you need to say to this doctor so that he will hopefully better consider taking Thomas on?"

That thought hadn't even crossed his mind (which scares me because c'mon, he's the professional here, it shouldn't take little ol' me to come up with that) so he pulled a release of information out and I made Thomas check every box on it so that there was nothing Chad couldn't talk about.

After that Thomas and I went out to the parking lot and I called my psychiatrist's office and asked for her and ended up leaving a detailed emergency message with the receptionist asking my psychiatrist to help us get an appointment with this doctor that Chad recommended. That is when the receptionist said to me,

"Oh, he's not taking on any new patients right now. He is booked."

 What? WHAT?!?!?!? Seriously?!?!? So there are no psychiatrists in my area that can see Thomas???? Who is going to follow up on his
clozaril? We're seriously going to start this very serious drug with no professional back up??

I left my message anyway and desperately asked the receptionist to have my psychiatrist call me.

Then we went to the pharmacy to fill the prescription. Within minutes the pharmacist tracked us down in the store and told us that they couldn't fill the medication because they aren't on the national registry and they had called another pharmacy in town that tends to handle specialized medications and they, too, are not on the registry and not only that but They don't know of anyone in the area that can fill the prescription!!"

Oh. My. God. Seriously?????

So now what? I got back on the phone with Chad's office and told them what was happening and Chad called me back a few minutes later and I explained to him what was going on and he told me he would call me back. When he did, he had found a small, obscure pharmacy in town that would fill it so in the darkness and coldness of the night I drove over to that pharmacy to give them the prescription. Oh my God you would think I was trying to buy crack or something the way they handled me and the prescription. Ultimately they told me they wouldn't fill it until they had Thomas' blood tests (which we got done after seeing Chad) and that they would call me tomorrow.

So here we are right now, a tattered flag hanging on by it's last strands in a hurricane and today I am beaten down but am in fighting mode. I have calls in all over this town and a town far from here trying to get my boy some help. My hope is that everyone will get back to me today. Somehow I don't see that happening.

As we were driving home after all of this Thomas sat next to me in the car and he grabbed my hand and squeezed it tightly and he said,

"I'm very scared mom."

And I said to him,

"So am I kiddo but we'll get through this together. I am not leaving your side for even one second ok?"

And he said ok and then quietly piped up,

"Mom, I don't want to die."

There it was. My worst fear, my saddest moment for my suffering son. He sees that he could die and he's scared but he's suffering so much from his paranoia that he's willing to lay down his very life in order to feel better. He is my hero and he is brave beyond comprehension and I will never ever leave his side.

1 comment:

  1. I have several patients doing well on Clozapine.At the start the med is upped very gradually, usually starting with 25 mg. Pulse rate and blood pressure will be checked regularly. The doc checks the blood levels too, to see how much he needs and to check the white blood cells regularly.
    Usually they do blood work every weeks during the first period and then they reduce that to uptil once every month. Good to know that the white blood cell problem only occurs in 0,5 to 1 % of patients and you have the blood checks for early intervention. And when he gets a fever its good to do an extra checkup on that.
    Another side effect can be bowel problems.But havent seen that often,Good to know though. If he gets serious abdominal pains go see a doctor. One of the side effects can be ( not everyone has it, dont worry) hypersalivation. If thats annoying theres a med available called glycoperoniumbromide, it helps for that. Its on prescription.
    Ive have seen many lives improve on Clozaril. It often works where other meds do not.
    You need good support and a psychiatrist to monitor it all.Good luck !

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