Category: Blood work

Challenges Show Us What We’re Made Of

Challenges Show Us What We’re Made Of

I’ve heard it said many times before, ‘Challenges aren’t there to stop us; they’re there to show us what we’re made of.’ If that’s true, then I’m made of medications. It’s my daily medications and my as needed meds (such as Valium) that allow me to face my challenges. Okay, maybe I’m being a little dramatic, but I honestly don’t think I would be able to do anything without my meds. I can do a lot without Valium; it’s just there in case I need it. While on vacation, I have needed it more, but there have been times this past week when I did things without taking any. I’m going out with my mom and grandma this afternoon for mother’s day and I’m going to do it without taking any Valium, or at least that’s the plan. I can do it, I can do it. I tell myself over and over and eventually it helps. Everyone faces challenges on a daily basis, big and small. Even if I have to take daily medications and some other medications as needed to get through these challenges, at least I’m getting through them. At least I give it a try.

One challenge I’m dealing with right now is getting my weekly blood test results over to the pharmacy so I can get my prescription for Clozapine. I had my blood drawn at the local hospital and then I was told that they could not send my results to the pharmacy even though my psychiatrist requested it on the lab order, he gave them the pharmacy fax number and everything. All labs are closed on Sundays where I am, even the one in the hospital. So tomorrow morning, I have to call the hospital lab and Quest labs and explain the entire situation to them. Hopefully they will have my results and will fax it over to my pharmacy. If not, then I’m going to have to go to the hospital to talk to someone in person. The hospital is 40 minutes away. If that doesn’t work, then I don’t know what I’m going to do, but I will find a way to keep trying. There has to be a solution.

This is a huge challenge for me. I’m extremely uncomfortable talking to people. My anxiety increases, I start rocking back and forth, I lose my words, my heart rate increases, and I start shaking. Maybe no one else notices it, but I feel exposed. I feel as if everyone in the world can see that I can’t even ask people questions. I’m getting a little better at it, but it’s still terrifying to me. Sometimes, I write down my questions in case I lose my focus due to the anxiety. That way, no matter what, I can get my questions answered. I need to at least try to do it. The times that I try and it works out, I feel so proud of myself. It’s a huge accomplishment. I do my best not to let my challenges stop me; I try to find my way around them, one thing at a time.

My Lab Results Finally Improved

My Lab Results Finally Improved

For the past several weeks, my blood work results have been getting worse. My white blood cell (WBC) count, eosinophils, and absolute eosinophil have all been high and increasing every week. My WBC should be somewhere between 4 and 11 k/mm3, instead, it got as high as 13.6 k/mm3. My eosinophils should be between 0 and 7%, but it maxed out at 26%. My absolute eosinophil should be in the range of 0 and 0.7 k/uL, but my got to be as high as 2.9 k/uL.

I don’t really know what these levels mean, except that it makes it very difficult for me to get my Clozapine prescription filled every week. My psychiatrist and my pharmacist get copies of my blood work results every week, and every week my pharmacist questions whether or not to fill my prescription. It becomes a huge deal and I usually have to have my psychiatrist call my pharmacy to tell them it is okay to fill my prescription. It’s never an easy task, and starting next month, it’s about to get even more difficult. My pharmacist told me there are new protocols being put in place starting in May. If blood work results are off, like they have been every week, then they have to be sent to the central Clozapine database. The database will decide if the prescription can be filled instead of the pharmacists and doctors making the decision.

Luckily, I think all of these problems might be coming to an end for me, hopefully. For the first time in a month, my levels are finally going back to normal. It might take a little while to completely return to normal, but at least it’s headed in the right direction. My WBC is within normal limits at 9.7 k/mm3. My eosinophils are down to 17% and my absolute eosinophil is down to 1.7 k/uL. Those are all huge improvements for me; I’m hoping my pharmacist will see this and fill my prescription without question.

I have been living week to week for the past month, never knowing if I’m going to be able to stay on this medication. Every week, I wait for blood work results and then wait to find out if my prescription can be filled. My bipolar disorder already causes me not to have control over my own life. The Clozapine blood work, test results, and weekly prescription fills have allowed me to have even less control than I normally have. I’m hoping that since my blood work results are finally improving, I won’t have to keep worrying about whether or not I can get my prescription every week. I am concerned about what will happen when he increases my dosage again, but I can only worry about some many things at one time. I don’t want to add this to my long list of worries, especially since it is also something I have no control over.

Beyond Frustration – Clozapine Refill Issues

Beyond Frustration – Clozapine Refill Issues

One thing after another, it never seems to end. There is always something that needs fixing or needs to be completed. I had my weekly blood work done on Friday and I’ve been checking for the results a couple of times a day. Normally, it’s done and I get the results the same day or early the next morning. For some reason, this week and last week, it took longer for my results to come through, but they finally did this afternoon. Once I know that my lab results are in, I call my pharmacy to make sure they received a copy. I usually spend the first five minutes of the phone call with them telling me they didn’t receive a copy until they finally look in their fax machine to see it sitting there.

They generally talk down to me, as if I don’t know what I’m doing. Today, the pharmacist kept telling me that they need to receive my lab results every week in order to fill the prescription. If only she would have stopped talking, she would have realized that I’m well aware of that and it was even the reason for my phone call. Shortly after hanging up with the pharmacist, I received a phone call from her. She called to tell me that my white blood cell count was high and she was concerned about filling the script. I explained to her that my count has decreased, improved, since last week and that my only current side effect is fatigue/low energy, but it is almost gone. I told her that I would have my psychiatrist call her. Then, she informed me that she would fill the script, but starting next month any time my lab results are off, they would be required to send my results to a central database location. The pharmacist would no longer be able to decide if it is okay to fill the script or not, someone at the central database would have to decide.

Now, I’m sitting here thinking that I could be taken off Clozapine any time if my blood results are off. I’m basically living week to week, never knowing if I’ll be able to get my next prescription of Clozapine filled. It’s adding on so much anxiety to an already stressful life. My psychiatrist says that they need to be concerned about a low white blood cell count, not a high count; however, I have so many more questions.

  • If at some point the pharmacy, or central database, won’t fill my script, do I just stop the medication immediately or am I supposed to titrate down off the medicine?
  • What side effects can I expect from going off Clozapine?
  • What levels of a WBC (white blood cell count) are good, and which are bad?
  • Is it bad that my eosinophils count is very high? At what level does that count make a difference?
  • If I have to go off the Clozapine, what medication would replace it?  I’m no longer on Seroquel or any other antipsychotic.
  • How long would it take for a new medication to start working?
  • How likely am I to have a major episode if I go Clozapine?

Once I know the answers to these questions, I will let everyone know. Hopefully, I won’t have to worry about any of this. Hopefully, my next blood test results will be back to normal. Until then, I am just going to stress over it all.

Weekly Blood Work – Same Phlebotomist

Weekly Blood Work – Same Phlebotomist

I have been nervous for days now about the blood work I had to get done today. Most of my nerves were because of the inappropriate phlebotomist from last week that kept asking me personal questions and telling me what I should do for my bipolar disorder. I have been practicing all week just what to say to her if she was the one drawing my blood again. I was prepared; at least I kept telling myself I was prepared. I was ready to tell her, “I don’t want to talk” if she asked me a question, or to ask for someone else completely. To be honest, I wasn’t prepared. I took a Valium to calm myself out of my anxiety attack and I went to the lab.

I arrived at the lab and stood in line to check in. I made a 2pm appointment, but they were running late. At least my Valium was kicking in, I was able to breathe, my chest pains stopped, I started shaking less, and my mind began to slow. I looked behind the counter and only saw one receptionist and one phlebotomist. Then my heart started to beat a little faster again, it was the same woman from last time. As I walk past her, she asks me “Did you think about what we talked about last time?” I can’t believe that she was that invasive two weeks in a row, better yet, she broke HIPPA laws two weeks in a row. I was surprised, but my response comment came to me quickly. I told her, “Yes, and I’m happy with the way I’m doing things.” I couldn’t believe it, but she actually backed off. The only other things she said was just normal chit-chat, to make time go by quicker. What I said was nothing like what I planned on saying, but it still seemed to work, and that’s all that really matters.

If she says something to me again next week, I will report her. It’s really hard for me to report her or tell her boss about the situation; I’m not sure why it’s so difficult, it just is. My husband keeps telling me I should report her. He’s probably right; I should probably do it for the people she treats after me. Even just the thought of reporting her, or having my husband report her, makes me start to have a panic attack. I don’t know if I could do it; I don’t know if I want to do it.

An update regarding the Clozapine: My fatigue has been decreasing every day and I have no other side effects that I’m noticing. I informed my psychiatrist these facts and that I completed my weekly blood work today. He told me I could up my Clozapine dose to 125 mg. I was so excited when I heard, I was worried he was going to stop the medication because of my blood work results, but he is still allowing me to move forward on my dosages.

Clozapine Rechallenge – Day 16 Problems Arise

Clozapine Rechallenge – Day 16 Problems Arise

So apparently I have to go to the doctor today. It was either that or the ER, and luckily my PCP’s office had an opening. I was shocked. My psychiatrist was concerned about my most recent blood work, which took 3 times as long to complete as normal. My psychiatrist wants me to be checked for Clozapine-induced myocarditis. His reasons are because of my recent symptoms (which are now gone) such as shortness of breath, fatigue, chest and throat pressure, and eosinophilia (this is his concern from my blood work); as well as my previous reaction to Clozapine the first time I tried it, which was a high fever; and of course my genetics. When he refers to my genetics he is talking about my Ashkenazi genes.

I have an appointment in less than an hour and I’m ready to go. I’ve printed out my last 3 weeks worth of blood work and my psychiatrist’s notes. Hopefully nothing is really wrong; I’m sure it’s all fine. However, my stomach is killing me right now, probably from the anxiety.

Update:  I went to the doctor and I’m not even sure that she really listened to me. I read the notes after the appointment was over, and half of them were wrong. It was extremely frustrating. Either way, they did more blood work and referred me to my cardiologist for an ultrasound. I asked if they could call to make the appointment, that way I could get in sooner, but they said they couldn’t do that. Then when I called the cardiologist myself, they said they don’t have my referral and can’t make the appointment until they have it. Now, I’m even more frustrated. My psychiatrist said I can wait on the ultrasound; I don’t have to go to the ER today, which is the first good news I’ve heard. I really am pretty sure everything is fine, I think it’s just a precaution. Although, the likelihood that I will be able to stay on this medication is decreasing. I’m doing everything I can to be able to continue taking the  Clozapine, I’m just not sure if that’s enough.

Clozapine Rechallenge – Day 13

Clozapine Rechallenge – Day 13

I’m almost at the 2 week mark, which is where it all fell apart for me last time. However, this time, I’m doing so much better. I woke up this morning with no side effects; I’m feeling better and better every day. It’s amazing that I feel okay. No muscle soreness, no chest or throat pressure, no dizziness, no unsteadiness, and no fever. I am gaining weight, which can be a side effect of Clozapine. However, I was already gaining weight before I started it, so I don’t think that the weight gain has anything to do with the medication. I did get tired yesterday after running a couple errands and I ended up falling asleep on the couch for about 30 minutes total.

I stayed at 100mg again last night. I’m waiting for my blood work results to come in so I can get my next prescription. My psychiatrist wants me to have my blood pressure and pulse taken the next time I’m at the pharmacy. I will do my best to remember that when I’m there.

Inappropriate Phlebotomist: Difficult Blood Work Visit

Inappropriate Phlebotomist: Difficult Blood Work Visit

I had quite an interesting visit to the lab today to get my weekly blood work done. I went to the same lab I normally go to, and as usual, I ended up with a new phlebotomist. I signed in for my appointment 10 minutes early and then sat down in the waiting room. Within a couple of minutes, a woman yells my name and says, “Come back and go to room 5”. Normally, they come into the waiting room to call your name and walk back to the desired room with you; I was already off to an odd start. I sat down and she entered the room moments later. I told her that they normally use my right arm.

She looks at me and asks if I’m okay. I said I was very tired, that it’s a side effect of the new medication I’m on, the med that is causing me to have my blood work done every week. Then the odd and inappropriate questions and comments began. She asked what medication I was on that required weekly blood work; I told her it was Clozapine. She asked why I decided to go on this medication; I reluctantly told her I’ve been dealing with suicidal ideations for 5 or 6 months. I didn’t want to answer her questions, but I have a hard time saying “no” to people. She asked if I see a therapist; I said I see both a therapist and psychiatrist; I informed her that I’ve been dealing with this since I was 14. She asked what I was being treated for; I told her I’m diagnosed with bipolar 1 and PTSD. Then she asked why I was diagnosed with PTSD. None of this is any of her business, but I was so uncomfortable and struggle to tell people to back off, so I hesitantly told her it was from a bad relationship.

Then she started to tell me that her husband was schizophrenic and he took medication too, as if that’s supposed to mean something to me and make it okay for her to ask me these questions. At this point, she began telling me what I should do to help my disorders, as if I don’t try to help myself and I don’t know what’s good or bad for me. She told me I should start doing some kickboxing or martial arts, which would help to empower me so I felt better. I told her I would think about it, but she kept telling me that I should do it. I explained that I had a double knee surgery and I have to take things easy, and she told me I was using that as an excuse. She asked if I used meditation; I told her it was something I was working on. Her next question was if I took time journal at all. I told her that I just started a blog and I found it extremely helpful. She responded by telling me that I should write everything out by hand, that typing doesn’t have the same effect. I told her that it works for me, but she kept telling me what I should do.

I called my mom as soon as this appointment was over and told her all about it. I don’t always know what’s appropriate and I needed to make sure I wasn’t overreacting. I wasn’t sure if being offended was necessary, I don’t trust my emotions lately. My mom reaffirmed my emotions. She told me that it was okay to be upset; this woman should not have asked me these questions. My mom told me I was “should on”. She made me laugh and loosen up a little bit. Since I struggle so much with saying no, my mom helped me find the appropriate words in case it happens again. I can say, “I’m not comfortable with this conversation. Can we please stop talking?” She also told me that I could talk to a supervisor if I wanted or I could simply ask for another phlebotomist. Talking to my mom validated the emotions I had about my experience. While I decided I don’t want to do anything about it unless it happens again, my mom helped me feel more comfortable with what I could say if I decide to talk to a supervisor about it. After having a short conversation with my mom, I felt as if I could take control next time; I could decide what I’m comfortable saying. I’m no longer nervous about my next appointment. I always feel more comfortable after talking with my mom.

Clozapine (Clozaril) Labs & Registration

Clozapine (Clozaril) Labs & Registration

Friday was the beginning of the Clozaril rechallenge (generic is Clozapine) process. I had my blood work done; there was some difficulty getting the lab to send the results to my doctor and my pharmacy. It was partially my fault, I did give them the wrong fax number for the pharmacy, but it took 4 phone calls to try to fix the mistake. Even when they finally said the problem was resolved, it turns out that it wasn’t; the pharmacy never received the results. Luckily, I ended up talking to one of the nicest and most caring pharmacists since my father and aunt. He was happy to call the lab himself and request my results so that I could get my prescription. Once he got my lab results, he realized that I had to be registered again in the Clozapine Database because I hadn’t taken the medication since this past summer; all patients need to be registered by both their pharmacist and their doctor. My pharmacist told me he would call me once the registration is complete so I can get my prescription filled. There aren’t many pharmacists that are as polite and happy to help as he was.

Sometime tomorrow I should receive a phone call from the pharmacy letting me know I can bring in my prescription. I admit that I am nervous. I’m not nervous that I will end up with some of the horrible side effects of Clozapine such as neutropenia, which is an abnormally low level of white blood cells, making the patient susceptible to infections. This is why there are so many protocols with Clozapine. I feel like I should be nervous about it, but I’m not. What I am nervous about is the fact that I don’t know if this will work or not. I’m trying to remain positive; I keep saying that this time it will work, I won’t get a fever, I won’t have to go to the hospital, and there won’t be any problems. I’ve been so nervous about this rechallenge, my anxiety level has been much higher than normal; I’m anxious even sitting at home in my comfort zone.

Is this weird that I’m more concerned the medication won’t work than I am concerned that the med will cause serious side effects? I think it’s just because I don’t know how much longer I can live like this. I have had suicidal ideations for more than 5 months. My hallucinations keep getting worse making the paranoia intolerable. And in my mind, the worst part of it all is that I won’t do anything about it. I can’t take my own life, no matter how much I think about it. I know that technically that’s a good thing, but if you lived in my mind for even a day, you would understand. Every day I put a smile on my face and do my best to pretend everything is okay, but inside I’m a disaster. I want to live and be happy to be alive. I need this medication to be the answer. I’ve taken pretty much every other medication and I still do ECTs. I currently take 7 other psychiatric medications, 2 additional meds to treat side effects, and 3 other medications for physical conditions. I just need to catch a break, I’m hoping that will happen with this Clozapine rechallenge. We’re all about to find out.

 

Blood Work Starts Now

Blood Work Starts Now

As my husband left for work this morning, he brought the mail inside. One of the envelopes was from my psychiatrist. It contained a weekly standing order for blood work to monitor the Clozaril along with a prescription that I can give to my pharmacy once I hear back from my doctor about my blood work.

I wasn’t nervous until just now. In fact, I was slightly excited to start Clozaril because I was hoping it would help level me out and particularly get rid of my hallucinations. I was thinking that it could be the solution I’ve been waiting for. However, now that it’s time to start the process, my heart started to pound, chest pains developed, my breathing quickened, I became sweaty, I started rocking back and forth when sitting, and I couldn’t remain still when standing. Basically, it was a minor anxiety attack. I didn’t know where my fears were coming from. I don’t like anything new, but this isn’t new. This is a rechallenge. I tried it for the first time last summer with no success.

I still want to believe that it will work out, but right now, I’m not so sure. I worry that my Ashkenazi genes will cause problems again. My mind is going a million miles an hour, and it’s going to some bad places. I keep thinking that if this doesn’t work, then there’s no hope left for me. Technically, I know that’s not true, but sometimes fear takes over the mind. There are still a few other options, even though I really don’t like them, they are there. And there is always research being done resulting in new medications and treatments that are often very successful. Will I ever be a part of the success when it comes to treating my bipolar disorder? It’s been a long time that I’ve been unstable; it just makes me question a lot of things.

I simply needed to get all of these thoughts out of my head so I don’t continue to obsess over all of it. I think this has helped clear my mind even just a little. At this point, I feel calm enough to drive, and that’s all I needed. I have stopped shaking and I can breathe better. I don’t have to leave for another 40 minutes. I’m going to take that time to continue calming myself.