This past week has been a nightmare- an absolutely awful nightmare. I don’t even know where to begin.
As I wrote previously, my surgeon said one of the proactive things I could do before having my thyroidectomy and neck dissection was make an appointment with an endocrinologist. So I did. One he recommended at one of the hospitals in my state, Colorado, with an excellent reputation.
When I made the appointment back in MAY, I specifically pointed out to the scheduler, that my surgery was June 12th, and the appointment with the endocrinologist wasn’t until this past Tuesday- July 21st. She assured me that was fine. I asked her again- that six weeks wasn’t too long to go. She told me again, it was fine. These are the “experts” so I figured I was in good hands.
Six weeks later I am a hormonal, emotional, tired, wiped out mess. I feel like I have aged 50 years in the past six weeks. Evidently the hormone your thyroid produces regulates all kinds of bodily functions- like energy levels, emotions, metabolism, memory, concentration- just to name a few. When I met with the endocrinologist on Tuesday, Dr. S., (another Dr. S.) she was shocked to find out I had not been on any thyroid hormone since my surgery. She looked at me and said, “My god, I bet you feel like crap.” That is one part they did get right. She told me they would rush my radioactive iodine treatment (RAI). Only problem- I haven’t been on a low iodine diet.
I called a week after my surgery and asked this same office if I should be on a low iodine diet. They told me no- I would receive all that information at my appointment. I pointed out again, that I had a six week time frame, and they told me it was fine. I’d learn everything about the diet during my appointment.
Since I can no longer manage this mess by myself, my sister, Vanessa, called bothered them until she got the person on the line that could help. That is how we found out the scheduler had “old” information. The treatment coordinator, B., told her I could have received RAI three weeks after surgery, but I have to be on the low iodine diet now for ten days. I could have started the diet the week I called to ask them about the low iodine diet, and have had all of this behind me. But now I have almost two more weeks of “feeling like crap” and trying to figure out a diet and what I can and can’t eat. Vanessa expressed the displeasure this has caused me, and the state I am in. B. apologized and sent me a personal e-mail apologizing as well. Vanessa scheduled the RAI treatment for me, for August 3.
I am so mad and beyond frustrated at this hospital. I talked to a friend who is a nurse, who told me this is negligence, and there is no excuse for something like this happening. But, what can I do? It isn’t B.’s fault. It is one of those nightmare things that you never imagine will happen to you, but it does. So somehow, my family and I have to get through the next 2 weeks to make it to the appointment where I can receive the RAI treatment.
I still don’t know how long after the RAI treatment I have to wait until I can receive the replacement thyroid hormone. As it is now, it will be 8 weeks and counting. In the meantime, I am losing more energy every day, my boys are suffering, and I am missing work.
I am having a hard time with this blog post. I said I was taking a break from it two weeks ago, but then I said I wasn’t, but I am going to be forced to now. I mentally and physically do not have the energy to write much until I am finally on the thyroid replacement hormone. For now, what energy I do have, I have to put into my boys and into my health. I will try to post quick updates on Twitter when I can.
I appreciate any thoughts and prayers you can send my way- two weeks seems like an eternity right now, but there is nothing left to do, except get through them. Thanks again to everyone for all their support, love, and help. I literally could not do this without my family and friends. Love you all.
Heather