33 Y/O Male with ITP, Intro

Hi There,

My name is Mark - hello.

I'm so glad I found this forum. I came into the ER two days ago with platelet count of 5,000. I went google crazy and self-diagnosed myself with Leukemia.

The Doc said that he doesn't think I have cancer, just this ol ITP thing. So I googled that to find all the fun stuff that you get with IPT: mainly frustrating roller-coaster rides of high, then low, then high again counts. Possible splenectomy etc...

I'm a very active Coloradan. I ski, hike, trail run, bike everywhere. So this is really cramping my style.

Currently I am in a room on the Oncology floor with immunoglobulin hooked to me with an IV. We tried steroids yesterday which didn't do anything. I went up to 16K with the transfusion, but this morning it was back down to 5K. Oh, the ig is done. OK so now what?

I really miss the fresh air. I miss my dog. I know I am sounding like a real whiner. I worry that I am going to die, and that's not really an exxageration. I have never been in this position before. But I am so frustrated. For some reason I have Vanilla Ice (Ice Ice Baby) on repeat. Maybe that would be a good song to die to. Either that or some Swiss German Yodeling music.

I worry - what if nothing works for me? They can't just keep me on platelet transfusions every day.

Ughhhhhh I hope someone out there can send some positive thoughts out to me. I assume most people here are not cured of this. The cured folks are out enjoying life, right? :blush:

Hello! my name is denise, and I am 52 years old and diagnosed about 3 wks ago. I was in the hosp with chest pains, and bad headaches, came out with ITP..platelets at 35,000.
Yes, it is scary....true. But i think once we get over the shock, and do our research and reading ...i am finding out I have a lot of great people in the same boat...
Scary for me, my dad died in March of last year of bone marrow cancer, and my sister at age 55 died in October of bone and blood cancer. So when they walked in the room and told me i had a blood disorder, i freaked out....but the doctor stands by the diagnosis, and says it is just my platelets....so i am trying to relax, and learn all i can.
I have read a lot of great stories here, and alot of success stories. I think most the people that are posting, though, are like you and me, they are upset, depressed and trying to learn more. So we have to remain positive, educate ourselves and trust the doctors.
I can sympathise with you, because it is indeed scary and has put a cramp in my life style too. But i do understand that your platelets can go back up just as quickly as they went down....so lets keep hoping for a better platelet count tomorrow!!!!! Lets learn all we can, and realize we arent alone!@
Sorry i dont have a great story to tell you right now, but you are not alone......learn all u can, and ask lots of questions!
I go to my doctor tomorrow, first visit with her since being released from teh hosp, and have tons of questions written down,because my platelets have dropped the last 3 blood tests....
Good luck to you, and keep us posted!! Ask your doctor questions....we can all compare notes!

Denise

Poor you! It must be horrible to be stuck in hospital and to not be having any luck with treatments at the moment.

Just wanted to say that actually some of the people who aren't cured are out enjoying life too! My son is 11, he's had ITP since last May. He had six months of counts under 20, mostly around 10K. In November his count improved for some unknown reason, and it has fluctuated wildly since then. On Monday it was 31K. Anyway, my point is that he has got on with his life during all that time. He's gone to school with a count of 1K, he's continued to play sport (albeit with some changes when his count is very low) and right now he is down at the youth club, probably playing soccer and hopefully having a great time. Yes, he has some downs where he rails against the restrictions ITP has meant to his life, but most of the time, ITP is in the background for him, irrelevant.

There are loads of people on this board like my son, out there enjoying their lives, making some adjustments, but getting on with it. ITP is a nuisance, its highly irritating, its a pain in the a*** even, but you CAN live with it and still enjoy your life. For what it is worth, I would suggest trying to stay calm and getting as much info as possible on treatments etc because then you can feel in control more.


Good luck with it all, Ali

Thanks everyone. This forum is encouraging. I think I am mostly getting cabin fever here in this hospital room. I need to stay positive: They don't think it's leukemia, my cat scan passed (nothing on my brain), they did an HIV test which I have never done before so that had me scared... but it came out negative, too. So all things considered, there's three things right there that I don't have to worry about.

I really just want out. I want to go running. I don't want to be scared of dying. But it sounds like there's a good way around that!

I just really appreciate everyone's stories. Even the bad ones make me feel that I am not alone.

Here's to everyone's progress. Thanks...

Hello Mark,
In my short time with this ITP thing, I've come to the conclusion that the ITP itself isn't going to kill me. It's just something that I have to deal with. The medications are a pain, figurativly and literally! but ITP will not be the cause of my death! In all my research I too have found that people may have to make some adjustments, but for the most part life does go on as "usual" You know, worrying doesn't do any body any good at all. It produces no results, except for pain and heartache. I'm not saying that we all don't worry some, but we gotta remember to not let it become our way of life. Life is to short to let worry take over!

Mark I'm in Colorado. Not sure how low my count got - it was 11k when taken one morning and I got a call that night from my MD.

Have you looked at the treatment page? Here is the conventional treatment page - you can click on the various types of treatments and that will take you to a page with them on it.
www.pdsa.org/treatments/conventional.html

Hi Mark:

I wouldn't die to Ice Ice Baby. Nah...pick something better than that. Oh wait - you're not going to die!

Seriously, very, very few people die of ITP. Most respond to treatments eventually. Sometimes it takes time. An important thing to consider is symptoms as well as counts. Are you actively bleeding? If not, you may be able to tolerate the low counts well. I was still working and having a normal life with counts of 3, but I did respond to Prednisone so they never stayed down that long. I did go months with counts in the 20's and just did my normal thing without treatment. Just letting you know that life can go on and you don't necessarily have to have normal counts to be set free.

There are still other treatments to try, plus, the ones you've had might still work. They don't necessarily work instantly. Hang in there - it's not gloom and doom.

Hi Mark,

I'm a 44 year old guy with ITP as well. I've had it since I was a kid. You hang in there. I had my ups and downs.

Sometimes, stop thinking that I've platelet disorder helps me to move forward.

I agree with everyone here who has replied to you. It is a pain, but this is the card we have been dealt and we all have to learn to deal with it the best we can. It is not a death sentence, sure it can become very serious and potentially dangerous when your counts are really low, but it is something you can live with. Most of us here live a normal life.

I do everything i used to be able to do, granted i did get it when i was very young. I was about 5 and i am now almost 25, so i have had it for 20 years.

The aim of most of these treatments are not to get a 'normal count' but a 'safe count'. There isn't a cure for ITP, although some of the treatments can put you in remission, the same way that chemo works for cancer, it is not a cure so it could come back at any time, don't want to scare you, but just want you to know the real facts so you don't get false hopes that any of these treatments are cures.

You need to be positive, of course will will all have days where we think why me, but you need to stop this negative thinking that ITP will kill you because that is just going to make you worry and stress out and stressing is not good on your body or your heart, so you need to try to chill and relax.

I know what you mean about being bored and having nothing to do. I was bed-ridden at home in december because my platelets were 6. I didn't need a hospital stay because i know have been dealing with this long enough to know what i should and shouldn't be doing with that kind of count and the dr said being in hospital will make me sicker as i was starting high dose of pred and i would get all the germs from around the hospital.

I hope it all goes well for you and one of the treatments work and hope u get out of hospital soon.

Mark,
Stuff to know about the IVIG treatment: good hydration, tylenol, and benadryl throughout the infusion and for a day or so after can help prevent the excruciating headaches that can come after IVIG. Decadron for a couple days after can help, too. We didn't know that the first time my teen got IVIG. By the way, my teen was a sporty kid when she got ITP, and we had to find sports she could do during the low times. Mild tennis was allowed as long as she was over 30K, and more vigorous sports at various higher levels. There's a link somewhere on this site to an ITP kids sports page, that has some guidelines about which sports are safe at which counts. (I think the logic would be the same for an adult athlete.) We're heading into summer now, so maybe kayaking on calm lake water (not whitewater) would be a good workout? My teen is now three years past her diagnosis, doing well, and having mostly normal counts, so don't give up hope. (Those early months were quite weepy for my, worrying about whether she'd ever have a good quality of life again, and I know this has you down.) She now plays any sport she likes. If you ski, a helmet is good advice for everyone, but it's critical for an ITPer. (By the way, I'm envious of your residence state. I'm in SC. No hills for a person who likes to ski, but man we have some nice sunny mild winters.) Good luck.
Norma

Thanks everyone for responding to my post. I am on my 2nd day of Ig / steroids. Just a slight bump from 5K to 7K after my first day of it, but whatever, I will wait and see.

It's so encouraging to hear everyone talking about how they can still live good active lives. I just want to hit the trails and go for a run with my dog and a couple friends so bad. I will consider that as something to look forward to.

I am almost scared to be positive though - like I am jinxing myself, so for now I continue to just be real about it. I am praying for no bad news. I think I mentioned I am on the Oncology floor, even though the doc feels good that it's not cancer. But being here, catching pieces of conversation outside my room of all the bad news being delivered to other families has been so unsettling.

I will tell you what, this whole experience is really making me re-evaluate my priorities in life. From THAT standpoint, I can be as positive as I want.

Thanks again, this is such a great forum. I have been pretty freaked out. I hate waking up at 4AM getting my blood drawn! But it's all what you make of it.

Mark

I am going for my 1st Rituxin tratment tomorrow and will be in the Chemo room. So I know how you feel about being on the Oncology floor. But, need to think positive. This is NOT Cancer! Need to think positive. The blood test are kind of becoming just somthing part of my routine. I go for weekly blood tests. It is a pain, but I try not to let it get in the way of living my life. Hang in there!! Something will work!

Hematologists are oncologists, so you just have to keep telling yourself that you are a hematology patient, not an oncology patient. That is the truth.

You said it....keep telling yourself there is a lot to look forward to. Get your counts up a bit and you can go running with your dog and your friends. Probably around 50 and you'll be able to do that. Stay positive, you won't jinx yourself. Positive thinking has a lot to do with things; I'm not saying you can cure yourself with your mind...that's bologna, but you can keep stress levels down that way and that is good in the long run.

Like Sandi said, hematology and oncology go together, and if you're the doc, you want your patients all in one area of the hospital, to make rounds easier. Being there reminds me, though, that this is not the worst thing that could happen to my kid. I forgot initially to tell my kid that we were going to a pediatric cancer doctor until we got there the first time. When we saw all the cancer patients, I took her to a restroom to reassure her she didn't have cancer, and to explain the same type doctor treated both things. She was almost 13, and just looked at me and said, "Yeah, mom -- duh." Indeed, she's taken the whole ITP thing a lot better than I have from the start.
Norma

Hi Mark- Steroids and IVIG, Rituxin did not work for me either. I have been on WinRho Insusions for the past 4 years and they kept me in a safe range, but I am not responding as well anymore. I am going to get a splenectomy this month, it has been 9 years since i was diagnised.

My point is, there are a lot of treatment options. Go through each one with your Dr. It is scary at first but you will find a way to live with ITP. Many Dr,'s will try a couple of things and push your toward a splectomy right away. You are in charge of your health, make sure you are making these decisions with your Dr., but make sure they are working with you to each a decision you are comfortable with.

Good Luck. I am sending positive thoughts and Platlets your way!

Jennifer

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, naked, 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.

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."

I digress. The operation went well. Back to my friend, the priest. Knowing of my love for poetry, the other day he stopped by my hospital room and left me a snippet from one of my favorites:

My former thoughts returned: the fear that kills;
And hope that is unwilling to be fed;
Cold, pain, and labour, and all fleshly ills;
And mighty Poets in their misery dead.
--Perplexed, and longing to be comforted,
My question eagerly did I renew,
"How is it that you live, and what is it you do?"

This is the question I cannot answer, but it haunts me. Why me? Why any of us? Why us and not someone else?

Don't fall into that dangerous trap. It will make everything worse. Instead, focus on "why me -- why do I have so much to live for?" For me, the Spock part of my brain tells me this is just random luck, really just entropy that was set in motion billions of years ago, but that won't cut it. Such a profound experience requires real meaning. I woke up. I will forever be unable to express, to anyone, how profound that common, every day event was.

I know this -- and I hope you will forgive me for drolling on about this stuff, I just cannot help it -- Life is about helping others. ITP has taught me that. I have been to the edge, I have seen over the edge, and I promise that when you get there (which I hope is a very long time away), your thoughts will not focus on wishing you had made more money or gotten that promotion or anything having to do with material possessions. Instead, like me, you will pray/hope for one more weekend with your family and friends. You will regret those times when you could have easily, without any real cost to yourself, helped someone but did not, because you were in a rush to get home to watch Survivor or whatever.

This is the final lesson of your journey with ITP -- life is about building wonderful, thick, loving, meaningful relationships and about helping others. That's really all there is to it. Don't let ITP take that out of you. Find someone who needs help, and help them. It'll help your ITP, every part of your ITP, I promise.

I can't type anymore. Best wishes.

Wow, Steve! It is so good to have you back. We've all prayed and hoped for your full recovery, because you ARE so helpful to others, and you have such insight into this experience. Mark, Steve is right. You can have a really good life even if ITP stays with you. It can become a minor inconvenience.
Norma

Wow, Steve! It is so good to have you back. We've all prayed and hoped for your full recovery, because you ARE so helpful to others, and you have such insight into this experience. Mark, Steve is right. You can have a really good life even if ITP stays with you. It can become a minor inconvenience.
Norma

Thanks for your words of encouragement Steve. I soo understand what your saying, I was at the edge on the 2nd of jan this year. All I thought about was how much I loved my friends and family and I wanted more time with them. Now I find I love them my life and my self so much more. ITP has made me a better person.

Wonderful advice, Steve. Glad to see you here!

Hey Gort... or are you Steve?

THANK YOU for taking the time to write all of that!!! WOW!

This ITP stuff, I feel thankful that I have an opportunity and a condition that will always remind me how fragile and wonderful and short... life is.

I ordered one of those "got platelets?" bracelets. haha But I plan on wearing it as a constant reminder of what ITP has taught me.

And I am looking forward to getting back to my routine again.

After my first week out of the hospital and my 2nd week on Prednisone, my counts have been going up, and were at 215 as of yesterday. They were 5 when I went in. So I know that as I start coming down off the prednisone, so may my counts. I am on 60mg per day right now.

I think I have had this my whole life, really. The nurse disagrees with me because I had a normal platelet count the last time I was in, but I sort of feel that counts just go up and they go down. Last week mine just took a dive. Anyway, whatever the case may be, I will just deal with it. I have a new appreciation of life and in that aspect, I am lucky to have gotten ITP. A week in the hospital was a well needed time out for me.

Also now that I am out (and on prednisone), I want to take better care of myself. So I am eating so much better. Fast food is not worth the risk. I am done with it. Fast food will kill you faster than ITP. In one way or another! I have a really great new eating routine of whole grains - I LOVE QUINOA!! - fresh veggies and fruits, chicken and fish. Low fat, low sodium, low simple carbohydrates. Maybe once a week I will splurge on something naughty. But this is really motivating me to keep the diet healthy.

This is going to be a long learning process, but it's all what you make of it.

I will keep y'all posted with my progress. I really appreciate this community.

Thanks,
Mark

I always nag my ITP teen that, even if better nutrition doesn't change counts or prevent relapses, it keeps you healthier and in better shape for what may come. A healthy body will withstand a lot more than a sick one, so she may as well stay as healthy as possible in every other aspect.
Norma

Mark, I'm so glad to see the pred is working for you, it might get challenging with food because the pred can push your limits of craving!! So keep up the good choices. I'm finally back on track after 2 years of keeping my extra 30lbs of pred weight, it's finally gone and I'm eating better and exercising more.

Steve, buddy, your words of wisdom are so valuable. Your journey is our inspiration. I admire your resilience.

Michelle

hang in there ive had itp for 22 years

Mark,
Glad to read that you are responding to pred. My daughter was diagnosed with ITP last April and we are coming up on a year since her diagnosis. She responds to IVIG, and pred and also to WinRho but they all don't last very long. She was very active in sports and we had to make alot of adjustments over the last year. She has always seemed to handle the diagnosis better than I have.
I don't write often, but I just wanted to let you know that alot of the best and comforting advice I have read have been here from people who have been through what you are going through. ITP has really changed our family life for the better, that is one good thing that has come from this. Good luck to you!

And I truly enjoyed your post Steve, it was really wonderful advice.

Karen
mom to Jordan

What a wonderful post, thank you from the bottom of my heart. I have printed this out and taped it to my computer stand so i can read it any time i want to.....
IT came at a very appropriate time for me. I was diagnosed 5 wks ago.....and had my first rituxan treatment yesterday......
I had a bone marrow biopsy and CT scan last friday, and am waiting the results....
Thanks again for taking the time to make a difference in so many of us.
Denise

Wow....steve = awesomeness. That was so uplifting. Thank you.

mark i definitely feel your pain. im 15 and i cant enjoy being a kid when i have a platelet count of 3000. i miss my bike as well.

Hey Ian,

Sounds like both you and I are new to this! Are you currently at 3000? I saw in another post, you mentioned that you were up, so just curious. But here are some things I have found that make me feel OK and I hope will be encouraging to you, too.

1. While most people have 150,000 plus platelets, really we only need about 50,000 to ride bikes, ski, and do whatever. We ITP stricken folk, just don't have a surplus.

2. As a kid, you have a great chance to respond long-term to your treatment. It's harder when you are diagnosed as an adult, and even then, we are still able to continue with a very normal life! We all just have to watch our bodies for petechia and bruising, and those sort of things. I was back-country skiing just a couple weeks after going in to the hospital with a 5,000 count! Of course I didn't go without making sure my platelets were raised to a safe level, first, but I was out there rippin it up!

3. I think in a way we are blessed to have ITP. I bought one of those purple bracelets to remind me of how scared I was in that hospital room. I spent a week in the hospital and I never ever want to forget how scared I was. This bracelet reminds me of how unpredictable life can be. And so I live each day to the fullest, having as much fun as I can, and spend more quality time with the people I love! I feel lucky to have a new outlook on life. MANY people spend their whole lives obsessing over stupid stuff like money and work, and meanwhile they are really missing out and taking their entire lives for granted. All they care about are designer jeans and celebrity gossip. Those people really are not living. I feel bummed out for them! Not me! Every day, I live it up!

Before my visit to the hospital, I was a very selfish entrepreneur. I was selfish with my time, and put important people on the backburner of my life. I really just wanted to make my first $Million and get a sweet house and a nice Range Rover. Now suddenly I am thinking I'd rather cut back on work and make more time for outdoor recreation. I can enjoy a simple life, and I want to think about having a family! My relationship with my girlfriend is so much better, and I treat people in my daily run-ins with more respect.

Like anything in life, it's what you make of it. You can't control your fate, but you can control your attitude and THAT is what will make this experience a good one for you.

You have something that probably most of your friends don't, and that's a whole new way of looking at life! Get out there and have fun and make this a positive experience for you and your family and friends!

Hi there Steve, so good to see your back to us!!! I think your post should go on a page of its own for anyone new and old to see and be inspired, you should really write a book!
Hope you had a good rest after all that
Julia