“Mom, I’m broken.”

Enter 2014, May 1, and I went straight to the emergency room after finding out my serum Dilantin/Phenytoin level was 50 mcg/mL. My daughter drove. Actually, it was higher than 50—probably more like 64 or higher. Just take my word for it. I was toxic. I remember the guy/doctor/intern…someone saying, “You were right.”

Yeah. I knew that. Now, just fix me was my response. 🙂

 

Normally, your system if working properly will flush out the toxins in due time but there was something more than just my meds being out of whack. I have been taking the same dosage for years. I needed an IV drip right away.

 

After getting back down into the normal range and beginning to wean off this stuff I have taken for so long, I came home on a new seizure medicine. Oh, goody. I was better but having side effects and withdrawals. I was also taking Phenytoin from the same manufacturer as I was before I went to the hospital (clears throat)… My serum Dilantin/Phenytoin level began to rise again and I didn’t understand what was happening.

 

After arriving home, I had sense enough to get a new prescription but not enough sense to know I should have taken it a step further. You have to remember that I still didn’t know for sure what had happened to put me in the hospital. No one did. I was being treated for symptoms. The cause wasn’t being treated because no one knew what it was.

 

I called around and found a pharmacy that had the same generic Phenytoin as I was taking in the hospital—the same manufacturer. I began to take it and the level dropped again—back to where it should have been. So, my conclusion… what made my level spike to the toxic range was the manufacturer. Something was not right with that batch of drug I received. It was what I was taking before I went to the hospital and after I came home. Both times it caused my level to spike. I have been on this other Phenytoin since a week out of the hospital and the level has not spiked but has remained where it should be.

 

It was a new manufacturer my local pharmacy is using to save money. I do not know why there is a difference only that I could be dead today. I could have died from the toxicity (which is not common but can happen) or something else. I am very lucky and I shudder to think of people this may happen to and they not know it. Perhaps it will not affect others as it did me but I know this type of thing happens. I have been searching the internet trying to find answers. The only thing I know is that not all generics are the same and they should be.

 

Do you know how many people take it for granted — that what is in the pill they take is ok for them? We all do it. We take so much for granted. We put our trust in our doctors and nurses and our pharmacists but there is truly no one who is responsible for myself other than me and that is a very scary thought. When I am almost comatose I cannot make those decisions for myself and yes, I do question doctors and their decisions. I wouldn’t be here if I didn’t take this seriously.

 

There is so much I want to talk about. I know everyone has something they have experienced. There are people who are dying who cannot get meds that will save their lives and I’m not talking about cutting edge technology. I will be one of those people one day. What do I do then? (In all honesty, I am closer to that time today than I was when I wrote this yesterday. 😦 )

 

We fight about all types of things but healthcare…simple healthcare…it’s a right to have healthcare. Fight about guns and other trivial stuff (sorry but I look at things differently) but healthcare…we should all agree and it should not ever be political — NEVER!

 

If you care for or have a loved one, think of that loved one in a situation where he or she cannot look after herself or himself and there is no one else. We all should shoulder the responsibility for others. That might sting but I believe it. Along with it comes responsibility for all of us.

 

I never want to worry about what I put in my mouth or body—if it will damage me. I would love to have someone I can trust with my life but I don’t feel that I can, not from what I have experienced these last few months.

 

Mom, I’m broken.

Can you please help me?

 

Amy planting seeds. 🙂