Psychological Effects from ITP: PTSD-like symptoms

I haven't been on here in a really long time; I've been in remission since last March. I was diagnosed last January after finding a mysterious rash on my legs, which of course was petechiae, and black spots on my tongue. Admitted to the hospital with a platelet count of 2,000.

I've been told my hematologist was very extreme with my treatment: by 7 weeks in I'd been through high-dose prednisone, IVIG, had a PICC line put in, splenectomy (which initially (?) failed), high-dose Dexamethasone, 3 doses of Rituxan, and finally, Nplate injections. I had started Rituxan prior to splenectomy, but my counts weren't ever getting above 25k and would drop back down to 1 or 2k within a few days. It seemed like everything was moving really fast and my doctors made me feel like I was on the brink of death at any moment, even though I wasn't having many bleeding symptoms.

A week or so after my splenectomy my counts plummeted, and I was pretty depressed and suicidal, watching my friends at college carry on with their lives and the seeing leeching effect I was having on my parents with my medical bills. I was literally just lying on their couch waiting to heal up enough so that I could kill myself; I had even started planning out the notes I'd leave to family and friends.

Later that week, however, I ended up finally getting better after my last dose of Rituxan, which was intended to be sort of a "throw it in the mix, see what happens" sort of solution. But it worked. After another month or so of Nplate, I started getting counts of 450k+, so we stopped everything, and that's where I've been since.

I realize there are many people who've been through a hell of a lot worse than me on here, but I suppose I'm reaching out to see how you've coped with recurrances and especially the uncertainty of everything. I'm nearing the 1-year anniversary of my diagnosis, and I find myself honestly scared shitless that this thing is coming back, even though I probably have little reason to feel that way. For awhile, I pretty much blocked out all memory of having ITP, but the past few weeks, nearing the 1-year anniversary of my diagnosis, I've been having almost PTSD-like symptoms. I have nightmares about my counts taking a dive again and needles getting stuck in me at every turn (I have a pretty intense needle phobia, which has been loads of fun), and I'm really jittery and distracted most of the time. I keep replaying some of the worse moments of the entire ordeal in my mind, and I honestly can't think of anything worse than being back in that situation again: going from being a high-energy, successful college student to this terrified shell of myself in a hospital gown.

I'm sorry if this sounds terribly dramatic. I feel bad even putting this on here because I know I have it so much better than most with my counts being sky high, but I really don't know what to do or where to go. I don't want to burden my friends or family. Everything just feels so impermanent, like I could lose everything at any moment. Has anyone felt like this before or have any advice on how to deal with it?

Thanks,
Sarah

Sarah, don't be to hard on your self, I remember I felt the same around the one year mark and was sure I was never going to have a normal life again, but time really does make it easier and you get past the one year mark and life continues on.

The thing that helped me was number one talking to long term itpers on here and two coming to the resolution that hey I have done this once, twice I can do it again if it happens. Try not to think about it too much, just find a spot in your mind and park it there.

Medication can make you think crazy thought and so can doctors that overreact and make you think that this is the end, if you think that this is giving you bad thoughts, get some help, don't let your mind take you to dark places and not tell someone.

You do start to think of ITP less and less as the years go on and some of the people on here will come on soon and I am sure they will help you out, there is some real long term ITPers and they have great advice, so hang in there.

Sarah:

I've said quite often that a doctors reactions can affect the patient for quite some time, and it's true. You had doctors that did seem to overreact a bit and it scared you. It's a shame that you didn't have one that handled things calmly and slowly. You'd be a lot better off right now.

I think you need to get it in your head that as long as you have counts over 30k, you're okay. That is considered a safe count....counts do not have to be normal. Try to accept that so that if it ever happens again, you will be prepared.

You also need to figure out exactly what you are afraid of. Low counts? Dying? Treatments? Which part? Once you figure that out, you can begin to figure out how to deal with it. Life with ITP does not have to be fear-filled and debilitating. Many people just keep going without much of a blip. You take a deep breath, do what you have to do, and fill your life around that.

I'd suggest that you read this. Very good advice!


www.pdsa.org/forum/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice.html

Sarah,
The loss of health (and even the loss of the future that we envisioned, due to illness) can cause a grief as deep as losing a parent or loved one.

We feel alone, we don't want to burden our family with our fears, we feel scared about the future. These are all normal reactions to grief. Perhaps this is what you are dealing with.

You should get to know about grief, it's stages and different ways to cope. Here are 2 good websites to help you through:

www.helpguide.org/mental/grief_loss.htm

and www.recover-from-grief.com/other-grievous-loss.html

You may also find it helpful to talk to people here, people who know what you are going through. Most folks need to tell their story, (and more than one time!) it helps them heal emotionally. Go ahead, write to us about your life, how your treatments are going, that crabby nurse that couldn't find a good vein, your worries, your hopes! We are an attentive audience, we've been there, done that, and we offer you our support and encouragement!

Hope I have been of some help.

Sarah

Sorry to hear about your PTSD.

You're getting good advice here. I'll just add that one approach might be to treat your PTSD directly as such. Learn what you can about the syndrome and how to treat it- I imagine there is a fair amount of information out there these days.

Also, perhaps find a good therapist who specializes in PTSD... the thing about a therapist is that it makes a big difference to shop around and try a few until you find one that is helpful...

Mark

Sarah, hope you feel better. That does seem like a lot of treatment. When i first got low platelets they were 19, they didnt treat it went back up by itself. Second time, i was 21, this time it was 6, they did nothing and i mean nothing for a week, then high dose of steroids, which i was on for a furthur two weeks while staying in hospital. Went up to 9 and back down again. So eventually gave me ivig which sent it up hugely and not a problem until six years later. My point is they seem to be treating it very aggressively. Today, they tend to wait and see. The only reason they gave me ivig is cos i had this big nose bleed but even if i had a rash it was more wait and see.
I dont know what to say to you to make it better but the one thing i know is though i still struggle to accept it, that may be the only way to move on. Remember you are more braver then most people you know. People think being brave is something to do with whether you can bungee jump or do a sky dive. No, its not. Its about being able to cope with the what gets thrown at us. Yes you have itp, but you must not let that rule your thoughts. Try remembering what is was like being a child,and remember that you want to protect this little person, You! Protect yourself but dont let it consume you. You can do little about it but you can change your view on it,there is nothing you can do but do. Its not easy when i see those familar red spots i admonish my body for not being able to react emotionally well to it. I ask, why body can you not work. Feel better! Also please check vit d level, a proper profile they may identify if there is a trigger

Thank you all for being so kind and supportive. Especially after looking at those grief pages, I think once I got better I pretty much blocked everything out because it was easier to deal with that way. I tried talking to my dad (he's a doctor) about it when I was home for Thanksgiving break, but he's convinced I'm being neurotic and the fact that I had a splenectomy fixes everything. But then I read these studies with people having recurrances a year or so later and I get all freaked out again.

As far as what I'm afraid of... pretty much all of the above. But especially the treatments. My veins are so difficult they have to use an ultrasound to get an IV in, and one of the times I did an outpatient infusion I had a 3 hour long panic attack thinking my vein was going to burst because the nurse didn't have it in far enough. Basically my only option to stay sane was a PICC line. I had a love/hate relationship with that thing... I was so glad to not go through the ordeal of an IV every time I needed an infusion, but I was always afraid of it being torn out and my dad was convinced I was going to go septic from getting bacteria in my bloodstream, which he felt the need to remind me of every damned day. Plus the entire time I was on steroids or Rituxan my mom wouldn't hardly ever let me see anyone or leave the house for fear of getting sick while immunosuppressed. So basically, I fear ever being put in that situation again.

I'm going to try to get in at student counseling tomorrow. I think I just need an action plan so that if and when it comes back I'll know how to handle it. Right now, I really don't think I could.

Thank you all again for your kind words.

Sarah

Sarah:

People all around you are overreacting and scaring you....no wonder you feel panicked! Counseling is a very good idea. I hope it helps you.