End of Week 8

Today I can type a little, so I'm taking advantage of it. It was a rough Thursday/Friday/Saturday, but here is the update.

I have still not been able to connect with my vascular surgeon. All I know is that my ortho case manager told me he had a plan to get me admitted into the hospital, and made it sound like I could bypass any crazy treatment the Ohio doctors wanted to put me through. But, I still have no confirmation on this.

On Friday I saw the hematologist and Brad was great enough to go along. The doc wanted to put me on a multi-week NPlate treatment, but when I told him I wanted to have my surgery on the 13th he then recommended Rituxan. Actually, he wanted to do another one of his crazy steroid treatments, but I told him my ortho office was against it due to the fusion.

The doctor and his nurse manager were unwilling to give us much information, including side effects on the Rituxan. Since we were there though, we had to schedule a time for the one-time treatment. I was scheduled for 10:30 on Monday (tomorrow), and was told it would take up to 6 hours to administer through an IV.

Rituxan is usually used for lymphoma patients. The hematologist wanted to try it, and told me that if he saw my platelet count raise at all that he'd approve me for surgery. However, despite the treatment it would not raise my count high enough and I'd have to have a platelet transfusion prior to the surgery on Friday. My platelet count - though I found out that evening - was a personal low of 9 on Friday. This was down from 32 on Tuesday and 25 on Monday. In other words, my platelet count is all over the place. What is so strange is that I have absolutely no symptoms. Even when they did the three blood tests this week there was no mass bleeding - or actually any real bleeding - afterwards. There was no bruising. I had a papercut, and was fine. It just doesn't make sense.

The hematologist and his nurse manager, in their own subtle way, made it clear that they think my issue is not related to nickle. They think it is ITP, which, other than the low platelet count, I do not have a single symptom of. They made it clear that they figured they would be seeing me again soon, after which we could discuss a long term treatment plan. I certainly hope in the end it is not ITP, but if it is, this is the last place on earth I'd go to.

After a lot of research, what I found out about Rituxan is that it has a lot of horrible side effects that can not only occur immediately during/after the administration, but up to 12 months after. They are also long-term and deadly. On a reputable site it said to check with your doctor before taking it if you have a low platelet count (which I do) and to check with your surgeon if you are to have a surgery (which I am).

This being said, I have come to the same conclusion I had in November. This hematologist is crazy, treating me like a cancer patient, and I think is trying to kill me. I am therefore - with the strong blessing of my husband and parents - canceling and refusing the treatment. We understand this may delay the removal of the filter, but all of us agree that these treatment options are unacceptable.

Tomorrow I will once again try and try to reach the vascular surgeon. I need to know his plan. I'm hoping he truly does have a way around this whole Ohio mess and I can just have whatever I need done in Maryland.

So that is what is going on. Saturday was a horrible day; so much so that I almost went to the ER on several occasions. I don't think I have ever been so scared. The only reason I didn't go was because it was a Saturday and I figured it would be busy and I would have to sit around and wait forever. Plus, I was so bad I didn't even know how I would make it there. If I had woken up today in the same pain I was going to go in the morning, at least for some pain medication. As bad as the pain was before the surgery, this is even worse and scarier. The medicines I take provide little relief, and it's really terrifying. This Friday - which will hopefully happen - cannot come soon enough.

Today, for no particular reason, is a better day. I am still in a lot of pain, but my brain is able to tolerate it better. I'm still about a "9", but it's better than the "50+" I was yesterday on the pain scale range.

I'm finding it difficult to type any more at this point, so I'll end it here. Hopefully my next post will be giving the all-clear to go to Maryland have this filter removed.