Big decision about my PICC/central line - HELP

Hello everyone,

This is my first post on this site - I'm a college student very recently diagnosed with a very aggressive case of ITP that was refractory to most treatments. Within the last 60 days, I've failed Prednisone and Dexamethasone bursts, had mixed results with IVIG and Rituxan, been hospitalized twice, and had my spleen removed (this didn't seem very effective, at least not initially). I'm now receiving Nplate weekly, and I've finally passed 100k, but I'm a little concerned about offering any one treatment credit for it as we didn't exactly have the luxury of trying things out one at a time.

Now onto the PICC line (also known as a central line) - we had this put in for two reasons: 1. I am an incredibly hard stick, as in nurses can almost never get blood out of me without multiple pokes and most times need an ultrasound to start an IV, 2. Because of some emotional trauma in my childhood when I had heart surgery, I have panic attacks whenever the poor nurse who's assigned to me has to dig around to find a vein. The PICC line allows them to both infuse me with whatever they want and draw blood needle-free.

Now that I'm beginning to stabilize, both my parents and doctors are really pushing me to remove the PICC line due to infection risk, but I'm terrified as soon as I do my counts will tank again and I'll be getting needles stuck in me daily. We're still not even sure if my improvement is due to splenectomy, Nplate, or Rituxan (which would, of course, require more IV's). Despite the annoyance with maintenance and Saran-wrapping half my arm in order to shower, sometimes I feel like this line is the only thing keeping me sane, particularly now that I'm back at school several hours from home and managing my care by myself.

I guess more than anything, I'm just scared. Has anyone out there had any experience with a central line? Are my parents and doctors being overly cautious, or am I really being reckless keeping this thing in me?

My first question to you is: how are your symptoms when counts are low? I'm asking because if they are not that severe, you may not need daily blood counts.

It's unusual for anyone to have counts done that often, even when counts are low. I've never gone more than once a week, even when counts were under 5. Could you handle getting a CBC once a week if need be without the PICC?

You're having amazingly aggressive treatment. What have your counts been like through this? And do you bleed heavily with the low counts?

I agree with Sandi, daily counts is way over the top. Maybe they are not experienced with treating ITP and are over reacting a bit.

Thanks for the replies! I'll address each below:

Sandi -

My symptoms are never overly dramatic until I reach 2-3k, then I bruise incredibly easily and get a lot of petechiae, particularly on my legs. I previously had some bleeding in my eye around 13k though. I probably could handle once a week (that's what I've just started doing the last 2 weeks) if that was all it was, but I'm more afraid of what will happen if I don't remain stable and need to start doing treatments of Rituxan or IVIG again - I know I couldn't handle that once a week.


Ann -

It has been aggressive, and I'm honestly not sure if that's normal or not. My counts have been all over the place, most notably I've had drops from 479k to 9k in five days and more recently 331k to 37k in two days. I attributed the frequency of CBC's to the sheer unpredictability of my body, and I agreed to it because it was the only way they wouldn't admit me to the hospital (and I really wanted to get back to school).

I don't bleed heavily actually when I'm low - at worst was a small eye hemorrhage, but I bruise incredibly easy and have ferocious petechiae on my legs at times. y doctor seemed really nervous to have me out of the hospital if I was under 6k, which is where I was a good part of January.

Cyclone, it's not really normal. Lots of us here are the same with unpredictable counts but aren't ever admitted to hospital and with counts of 1 or 2 I just go to work and carry on as usual. Petechiae and bruising are not important.

You shouldn't have any more Rituxan. If it doesn't work first time then that's it. It will have done its job of wiping out the B cells and having more of it won't make any difference. I'm using Nplate now too and the aim is to get a count of 50 and not a normal count. A normal count on Nplate is not a good idea as all the new platelets made are large and sticky and liable to clot if in large numbers so you don't want too many of them. I don't like being higher than 100 myself. Having said that, if your high count is due to Rituxan and not Nplate then the platelets would not all be large. They should be able to see which it is by looking at the blood under a microscope and then they can tell if the Nplate is necessary. Having so many treatmets at once makes it difficult to manage.

Are your doctors experienced with treating ITP? If not that would account for their aggressive approach and you might want to get a second opinion. Having doctors who panic is not going to make you feel confident either.

Ann -

We're looking into getting a third opinion, actually. Both my current doctors seem to be at a loss with what to do with me as I'm starting another downward trend. I'm getting it checked tomorrow afternoon, so here's to hoping...

I guess I just don't understand about the low counts being acceptable... from everything I've been told being below 10k you're at risk for internal bleeding if you fall or something. I also don't understand how the bruises and petechiae aren't important, that's bleeding, isn't it? When I was first diagnosed at 2k I had both of those and black spots on my tongue, and all the doctors I encountered were very concerned about those symptoms.

I've also heard of people repeating Rituxan months later if it works the first time, and seeing as it fell in the right timeline, it's possible that's what caused my upward trend.

I apologize if I sound contentious, it's not my intention, I just really don't understand why everything I've been told up to this point isn't aligning with what I'm hearing now. It's really difficult to make sense of what's going on.

What I mean about the bruising and petechiae is that it is an important sign of a low count but of itself it isn't important. Nobody died of a lot of bruises or petechiae. The doctors will have been concerned about the low count that the bruising indicated and not the bruising per se.

Also of course you must treat when under 10 but there's no need to panic. As my haematologist reminded me once, they don't treat children (in the UK) at all and they do just fine with low counts.

And you can do Rituxan more than once but only if it works. No point if it doesn't. If it works it'll keep counts up for probably a year or more and you won't want to keep the line in for that long just in case.

Here's hoping you stabilise with a high count and just forget about ITP for a long while. It sounds as though you need the break.

Cyclone:

There used to be a protocol for hospitalization, but I can't seem to find it. I'll try to look again over the weekend. If I remember correctly, hospitalization was warranted if counts were under 20 and there was serious bleeding. I'm not trying to second guess your doctors, but what do you think happens to people who can never get counts up? They can't be hospitalized indefinitely. Most doctors will look at symptoms. Some people seem to be able to handle low counts. I felt I was one of them. I had counts of 3 and at the time, had large black bruies and petechiae, but did not have serious bleeding and was never in the hospital. I just treated. I did respond to Prednisone though. I also spent a month with counts under 11 and continued to work - I was getting Rituxan infusions at the time.

The risk of death from bleeding with ITP is very low. Recent studies have shown that mortality rates from bleeding vs infection are equal, yet people will pound their bodies with one treatment after another (including splenectomy) in a frantic attempt to get counts up and not think twice about that. I'm not sure where the true danger really lies.

There have also been a lot of blood clots and strokes going on around here. More than ever. With the new TPO's, there are so many unknowns and honestly, as Ann keeps pointing out, they are designed to keep counts around 50, but people just keep trying to get normal counts and above. Mixing splenectomy with Rituxan and TPO's in a short period of time can be just as dangerous as low counts.

Years after my ITP diagnosis, I found out that I had APS antibodies. APS is a clotting disorder that can sometimes go hand in hand with ITP. It is estimated that 33% of ITP patients have APS also. When I found out I had it, I had to start taking aspirin every day. I wished my counts were lower than 100, but I was in remission and counts have been in the 200's. I'm more afraid of clots than I am of low counts and bleeding. I was also very glad that I did not have a splenectomy when it was suggested because that also raises the clotting risk.

People with ITP have larger than normal platelets because they are all young and fresh. So even though you do not have many platelets, the ones you do have work well. Many people with ITP also have Platelet Microparticles. These are tiny platelet fragments that are too small to be counted. They also help with clotting and can even cause strokes and TIA's in some patients.

There can be so much to juggle here and just seeing a normal number may not always be the right answer. Keeping a safe number is okay and many have to learn to live with that. My advice is to do your research and learn. Doing that in combination with knowing your body will guide you through this.