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TOPIC: Excellent Advice for newly diagnosed

Excellent Advice for newly diagnosed 8 years 8 months ago #8344

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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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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Re: Excellent Advice 8 years 4 months ago #11195

  • dhars11
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Thanks for the excellent and so touching adviced!
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Re: Excellent Advice 8 years 3 months ago #12413

  • dianatebo1
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Hi Sandi,

I want to thank you so much for your words of encouragment. I was recently diagnosed with ITP after a routine physical. My first count was in December 2010 and was 69 and dropped to 51 in January. I have been searching the internet for everything and anything I can find out about ITP in case my counts drop again and treatment is suggested. I have been very scared and worried, but reading your words about your experience with ITP has helped calm me down.

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Re: Excellent Advice 8 years 3 months ago #12415

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Actually, Steve wrote it, I just posted it. I'm glad it helped though - that was the intention!
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Re: Excellent Advice 8 years 1 month ago #13692

  • hilary
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thanks sandi and steve, just read your advice and loved it i am just finishing my pred treatment (next week is my last tablets) cant wait lol. counts are good and am staying optimistic they will continue to be. yes the last few months have been a trial but i did it !!! this site is a great help and i have learned a lot from all the amazing people on here.heres to happy counts and good health for all. Thanks Hilary xxxxxxxxx

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Re: Excellent Advice 8 years 1 month ago #13710

  • milly
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Hilary, don't know if I have breached a copyright law,(lol) but I have printed this advice and it is posted to my fridge. Every time I have a little meltdown I take time out and read this.
The advice is fantastic but it also makes me stop and think and breath for a minute or two. I agree with you the people on here are great help and comfort.
There is no practice run in life.

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Re: Excellent Advice 8 years 1 month ago #13730

  • hilary
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hi milly good idea have done the same, no we are not breaching copyright as long as its for ur own personal use.hope ur keeping well and thanks :) xxxxxxx

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Re: Excellent Advice 8 years 1 month ago #14164

  • brenda
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Thank you Sandi and Steve, I also printed this out and I am sure I will keep rereading these words !!!

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Re: Excellent Advice 8 years 1 month ago #14299

  • heidio
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Amazing post! Very encouraging!!!

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Re: Excellent Advice 8 years 3 weeks ago #14662

  • RedBeard
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Sandi,

Thanks for this Helpful information, I will pass this onto my Mother.

RB

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Re: Excellent Advice 7 years 11 months ago #16251

  • Trish
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  • Diagnosed with ITP 02/26/2002 Facilitator of Chicagoland ITP Support Diagnosed with Hypertrophic Cardiomyopathy May 2008 http://chicagoitpsupport.org "When you're going through hell, keep going." ~Winston Churchill
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I would like to add something...hopefully I didn't miss it in that thread...

The doctors work FOR YOU. It's YOUR body, and you don't have to do any treatments you don't want to do. If you'd prefer to do something else, say so. If they won't listen, find out why - and find a new doc if you have to.

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Re: Excellent Advice 7 years 11 months ago #16256

  • eklein
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Perfect advice Trish, and nice to see you!
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: Excellent Advice from Steve (Gort) 7 years 7 months ago #18693

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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This is Steve, not me:

No, when my counts are low, I never stop being scared. Even after 40+ years of this. It's called being human. But the fear does not deprive me of free will. Even scared, I have the choice to let the fear ruin my life, or not. ITP won't ruin my life, almost certainly, so the issue isn't ITP. The issue is fear. If you don't fear low counts, then you aren't paying attention.

I have a little quote taped to my desk: "If you have fear of some pain or suffering, you should examine whether there is anything you can do about it. If you can, there is no need to worry about it; if you cannot do anything, then there is also no need to worry." The best treatment for the fear is, of course, education. With ITP, knowledge controls, but does not end, the fear. Nor should it. The fear reminds me to love every minute of my life. The fear reminds me that, ultimately, the answer to almost everything is compassion.

You have many, many choices with ITP. Not always easy choices, especially when insurance is involved, but choices just the same. Remember, baby steps, one at a time. What is the next action you need to do? Focus on that, not next year or next month or even next week. One baby step at a time, today, that's it. ITP is a journey, a path, and you walk along armed with the knowledge that, for virtually everyone, ITP is not the end and for most it is relegated to an inconvenience, after the initial shock and understandable (and expected) fear. And, even if you are one of the very few for whom ITP is more than this, would you be doing anything differently than you are now? Then why not do those things, now?

It gets better. It is doable. It is live-able. ITP has gone with me on my journey -- getting married, law school, my family, my children, many mountains climbed and a determination to conquer a few more, many long lines at Disneyland and many sand castles on beaches spread across the globe. I am not naive about ITP or its fear -- far from it. But, neither do I let the fear control me or my life. Each one of us has that simple choice to make. It's not always easy, but when it is not, friends, family and education fill the gap.

Remember, the presence of fear means only that fear is present, nothing more. The fear does not mean you are going to die from ITP, it does not mean your counts will drop next week, it does not mean your Rituxan won't work. In fact, it does not mean anything about the future; it means only that you are responding, quite appropriately, to a difficult situation. Educate yourself, have a plan, take it one step at a time, get your sleep, eat a healthy diet, and be compassionate to others in all that you do. Then this is doable, almost easily most of the time. And, when it is not, you ask for help.

Steve
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Re: Excellent Advice 7 years 7 months ago #18939

  • Grumble
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Great Stuff, Thanks,

I've been dealing with chronic illnesses for a long time, Heart disease, kidney disease, diabetes, C.O.P.D., and recently ITP...

I agree with the idea of living with gratitude, Enjoying the good things around us, Living in the moment, Making happy memories... Live with no regrets... tell those we care about, "How much we love them", "How important they are", etc...

I'm not married, never had any kids, but, I have 7 nieces and nephews, several siblings, both parents, Aunts, Uncles, Cousins, and one grandmother, I spend every chance I can with them, since I got sick,
No Regrets, live large

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Re: Excellent Advice 7 years 7 months ago #18941

  • milly
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Hey Grumble, I started a discussion about the good side to ITP a fair while ago and the things you mention are some of the things we sometimes take for granted but ITP has certainly changed my attitude to these things as well. It is like a little wake up call.
There is no practice run in life.

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Re: Excellent Advice 7 years 6 months ago #19564

  • jerig47
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So well put! In that first week, 39 yrs ago, I can now remember and laugh how my father called my boss and quit my job. I stayed home for almost a week, in disbelief, before I realized that I couldn't give in and called to get my job back. Funny now.

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Re: Excellent Advice 7 years 6 months ago #19650

  • redmage20386
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This is one of the best article i have ever read, thanks Sandi!

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Re: Excellent Advice 7 years 6 months ago #19660

  • Michellek
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Thank you so much for this advice. I was just recenlty dianogised with TIP and jusst posted about it.

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Re: Excellent Advice 7 years 6 months ago #19690

  • malee76
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:cheer:

This was wpnderful advice. Thank you for sharing this! I've been diagnosed for a month now, and it was scary at first. Now, I'm trying to find the treatment that'll work for me. I'm appreciating life a lot more, that's for sure. I've also started a blog to share my ITP experiences. Love the support. Thanks again! :)

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Re: Excellent Advice 7 years 3 months ago #22159

  • Michael P
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Thanks for your post was diagnose a month ago went in the hospital with 4 plateletes it was arime thinking 5 days they put 3 days of iv stuff in me got me to 186 lost 55 already doc set n appointment for 2 months from now don't have any clue what to expect until then

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Re: Excellent Advice 7 years 3 months ago #22343

  • debrasla
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Thank you so much for the advice and education. It has answered so many questions and concerns regarding my son. I am going to make him read this also. A journey, a journey. My son will be getting a spenectomy next I suppose, it was mentioned Friday after his platelets dropped to 9000 after the Rituxan treatments. So, just another form of treatment.

Thank you!

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Re: Excellent Advice 7 years 3 months ago #22438

  • sonyam
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That is the best advice ever, love your perspective on life, it is so heart warming :)

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Re: Excellent Advice 7 years 2 weeks ago #24409

  • Nitin
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Thanks Sandy and Steve for excellent advise.
I have been recently diagnosed with ITP and went through what you have written.
Thanks again....

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Re: Excellent Advice 7 years 4 days ago #24661

  • amandadinwiddie
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Thanks for the good advice. I was diagnosed 2 months ago and can just now talk about it. I was so overwhelmed with the diagnosis, treatment options, and feeling horrible, that I didn't want to talk about it or have any more information given to me. After having a negative reaction to IVIG and having steroid withdrawl, I began the Rituximab treatment. After 2 weeks of treatment, my platelets began to rise. I have been finished with treatments for 4 weeks, now, and my platelets are holding in the 400,000s!

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Re: Excellent Advice 7 years 4 days ago #24667

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Amanda - that is great after only having ITP for 2 months. Not many people are that lucky!

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Excellent Advice 6 years 5 months ago #29670

  • TJHUNT07840
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My 17 year old son was diagnose a month ago with ITP, you post was so right on the mark and also touched me. Thank you for this post, this is one of the most difficult things i have faced, although, as you note, my son seems to be dealing a lot better than !!

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Excellent Advice 6 years 5 months ago #29812

  • Zachsmumjo
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first i wanna to say, i am indonesian, my English is not good enough.
i have diagnosed that i got itp, when i was in junior high school, but actually it was recovered at that time,unfortunately, when i was 17 years it comes back, and now i'm 23 and it does not get well.
in addition, i am still consuming ciclosporin medicine that is sandimmun neoral, corticosteroids, methylpredisolone, it is not common disease in my town. are these drugs appropriate enough?
i'm afraid of wrong disease actually.

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Re: Excellent Advice 6 years 2 months ago #31014

  • Bella
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Thank you trish. So many people just let any dr do anything he/she wants..........Also a note on ex advice. To say there are no cures, when they dont know what causes it per individual is ? ?
We stopped the pred, & never gave it to her longer than 17 days { It was Highly Against the Drs advice} But we were also aware that the Prednisone was VERY DAMAGING......
So here we are after a on offf on offf prednisone war. This time we have been giving her Vitamin K. Its been 90 days & zero purpura. We also give her lots of greens.....

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Excellent Advice 6 years 2 months ago #31015

  • Bella
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We think Its important to look into Vitamin k. & if it helps him pass it on.

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Re: Excellent Advice 6 years 2 months ago #31016

  • Bella
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We were told about Vitamin K.

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