I've been requested to sticky this advice given by Steve (aka Gort) because it is excellent for those who are newly diagnosed. If anyone would like to add to this, please let me know.
Steve's advice:
OK this will take me forever to type what I want to say, so get some popcorn.
1. Freak out. It's ok. This diagnosis is a shock. Confusion, lots of questions, a seeming inability to find any firm answers to anything, ever doctor has a different opinion, people shoving all sorts of needles into you, drugs you can hardly pronounce and have never heard of. And, the worst is the fear you see in the eyes of your family and your children. You should freak out a bit -- it's called being human. This thing called ITP still scares me at times, and I've had 43 years to wrap my head around it.
2. But, don't freak out too much. If you are like most of us, the first week is awful. But it starts to get better. The key is education. That's the best thing you can do for yourself. Read everything. Begin to understand that this is a journey -- whether your journey will last 6 weeks or 6 months or 60 years, no one knows. You start your journey alone, afraid, with a doctor's finger pointing to a little number on a lab report that is at the same time both meaningless and terrorizing.
3. Use the education to build up the tools you will need for your journey. Very soon, you will learn that the vast, vast majority of ITP'ers live long and happy lives, with ITP being an inconvenience. You will learn this is not a death sentence. Far from it. Strap these tools on as you walk. You will need them. Write them down. I did.
4. Your next job is to find a drug that "works" for you. By "works," I don't mean that cures you. There are no cures out there, sorry. You may go into remission, you may stop your ITP journey after only a few steps. But, get out of the "headache" mindset -- you have a headache, you take a pill, the headache goes away. Sorry. ITP isn't like that. Instead, a treatment that "works" will get your counts up above 20 or 30, in a pinch. There are many, many options. No one can predict what will "work" for you and what won't. The most common are IVIG, steroids (various kinds), Win Rho, Rituxan, N-Plate and Promacta. You may have to work through every one of these before you find your magic pill. The vast majority of ITP'ers find something on that list that "works." If not, there is an entire other list you can try, but focus on those common meds first. Which order -- that's up to you, in discussions with your doctor and family. Your ITP may just go into remission, but don't let yourself think that your life is ruined if it doesn't. Don't build your happiness around that false hope.
4a. Sooner or later, someone will mention splenectomy to you. Don't freak out. Yes, it is surgery; it can be done in either of two ways, "open" which means you get a long, nice scar, and "scoped" with means they use a scope and make three very small incisions. Which method they use depends on your count, your surgeon and other factors. The most important thing to understand about a splenectomy is that it is just another treatment, it is not a cure. It was the standard of care for ITP for many, many years, because it has a pretty good success rate -- around 60% of the time, it "works," with, again, "works" meaning it will raise your counts, not cure you. Some people get long -- even lifelong -- remissions out of the surgery. Others get nothing except the scars. There is pretty good evidence that suggests that past about age 40, the "success" rate begins to decline.
You will have to decide for yourself if you want to try this treatment. Many ITP'ers, probably most, decide to try the drugs first, and save splenectomy for when/if you really need it. But, there is that age thing to consider, too, if you wait too long.
5. Another good tool you will pick up as you walk this path is to learn the truth about counts: you will drive yourself crazy if you follow them too closely. I am not suggesting you ignore or skip counts. Counts are an important piece of the puzzle, but they are only one piece. Don't fixate on them too much. Learn the truth that there really isn't much difference between a count of 25 and 30, or 75 and 100, or 150 and 200. Learn that, for most of us, a count over 30, or maybe even 20, is just fine. Everyone is different, but, for me, I consider above 20 "normal" and I really don't limit my activities at all. Between 10 and 20, I go see my doc and we chat about treatments. If you have your "go to" treatment (see #4 above), you use it. If not, you talk about what new treatments are out there, which you will know because you have educated yourself (see #3 above).
6. You will find the journey is almost impossible without another tool: patience. Be a patient patient. Some treatments can work quickly (such as IVIG), but many (most?) take some time. Get your head around the fact that your journey is a nice walk in the woods, not a sprint on the track. Things that happen quickly with ITP usually aren't good. The good takes time.
7. Have compassion for your family and friends. They won't understand, at least at first. Don't deny the seriousness of your condition, but use your education (see #3 above) to calm their fears. It's worse for them, most of the time. Remember how much easier it is for you to deal with ITP, because you have educated yourself. That's part of your job now -- ease their path as you walk.
8. Find a doctor who communicates. Some do, some don't. If yours doesn't, dump him/her and find someone new.
9. Pay attention to your insurance. No matter what your financial situation, you need to start paying more attention to your insurance – both health and life. On health insurance, study your coverages. Many ITP treatments are extremely expensive. All of that fine print and boilerplate that you used to ignore – well, it’s time to start paying attention. Many insurance companies will designate ITP as a “pre-existing condition” or, depending on your situation, will refuse outright to insure you.
10. Ask for help when you need it. Don't be shy. I would walk over hot coals for my friends here on the ITP forum because they have helped me so much. Send Sandi your phone number. There is nothing better than a phone call from someone who has been there.
11. Most importantly, remember and cherish your humanity. Love your life and live it with passion and gusto. Hold the gifts ITP brings -- relish them, cherish them, consume them. What? ITP brings gifts? Absolutely. A love of life. A better appreciation of your family and friends, and your health. Squeeze your kid just a little tighter. Give your spouse that extra kiss that "before" you would have skipped. ITP will be with you on the journey, however long it lasts, reminding you that life is wonderful and precious. Don't let the fear make you forget that. I had some surgery recently. The last thing I remember, before they put me out, was laying on a bed, they had me on my side for some reason, and I was having this slow discussion about life and death and charity with this Catholic priest I have gotten to know over the past 3 years (he is the hospital chaplain; I am not a religious person). One of the docs was standing there and obviously gave me something, and the next thing I knew it was 6 days later. So, my first thought on waking up from the operation wasn't "wow I'm glad I woke up," but instead was "crap, I wanted to finish having that conversation. Let's go back."
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