ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to greta799@yahoo.com. We want to hear from you.

Friday, November 9, 2012

TO I.T.P. AND BEYOND

Ros and her daughter Calley in Perth.
Ros Bryan lives in Australia. She has had her ups and downs with ITP but support from her ITP friends and her family has kept her strong through it all. Here is her story.


Hi everyone, you are about to get a warts and all story from me, in fact, honestly I don’t even know if now is a good time to write it.  For all of you that have ITP, or know someone with it, you will know it can be a default line in your life. Right now for some reason, probably because it’s coming up to the one year anniversary, of the most dreadful time of my life, I’m going through a really big downer. This is where living in Australia, is not ideal, lol, because right now I’d kill for a hug from one of my ITP friends.

My story began maybe late Oct, early Nov 2011, I noticed I had a rash on my stomach. Being the laid back person I am, I didn't really care. I figured it may be washing powder, fleas from our animal’s, heat rash, there was a million things I put it down to. I did promise myself next time I went to the doctor I would ask. Meanwhile I was also spitting up and blowing blood from my nose, lol, still it didn't bother me.  A couple of weeks later when I did see the Doc, he immediately gave me a referral to a lung specialist, thinking maybe I had lung cancer.  I forgot about a rash, until I was on the way out, so I then ran back in to show him, he put it down to viral. So I was none the wiser, lung cancer did concern me, but not overly.
 
A couple of days later, the rash appeared on the back of my hands, this did freak me out. I decided to go to Mum’s doc, to get a second opinion. He immediately sent me for a blood test. This all happened on a Friday, since I had not seen him for goodness knows how long, he didn't have my contact details.  Being a Friday night about 7 pm we were just about to walk out the door to my daughter’s netball. I had a phone call from my Mum, the doc had contacted her, because he couldn't get me, to tell me to get to hospital immediately, I only had 2000 platelets. I remember telling her sure, I’ll go after netball, that’s when mum had to relay the message if I didn't get there immediately I may die, oh yeah, and don’t fall over or bump your head on the way!! 

I think my legs gave out from under me, and my head certainly spun, as I was hysterically   crying so much I couldn't see.  My son took my daughter to netball, and myself, my hubby, and Mum went to hospital.  I knew it must've been bad, no doc, ever rings at 7 pm over here.  A little detail I do remember is the nurse shoving, and I mean shoving a canula in, while coughing all over me, I was a bit calmer by then, but  besides babies, I had never been in hospital before, and I was certainly not staying there this time!! LOL, or so I thought. After me giving them a lecture about how I was going home, so hurry up and fix me, the Doc, had to tell me if I walked out that door now I would die (one of my greatest fears), so rest assured I wasn't going anywhere, Mum was with me, trying to small talk, gee, I was horrid, telling her to shut up etc. I was in over night before meeting a Hemo the next day, who told me I needed a transfusion because I had ITP. After asking questions, I still had no idea what it was. That day over 6 hours I had a hemoglobin transfusion, (I think, see I still don’t know)!!! My platelets came up very slowly and I was released about 5 days later, with 2700 platelets, and a 2 page brochure, about the blood disorder. One page, was actually pictures, that’s how well informed I was!!! I was a nightmare for my hubby, poor thing.

I had to go back for an outpatient 2 weeks later. I was on 130 mg of steroids so my platelets had gone up. I also not wanting to whinge mentioned to my doc that my arm I had the transfusion in  was still really sore, probably nothing, and I wasn't worried. She insisted on getting it checked, but forgot to give me a form for an ultrasound. Meh, I didn't care, I was sure it was nothing, but she posted one out, and told me to go. For that I went to a different closer hospital. Of course I had a blood clot in my arm, superficial, so it should be okay but it seemed every time I went to hospital I was taken into an emergency room and given more bad news, and was booked in too see a doctor there. That’s where the memory of the Nurse came back to me. I reported that to the doctor, I have never seen one so angry. Well I didn't make it because the blood clot had moved to my lungs. A PE man, I couldn't catch a break. 

You know when you go to a public hosp and report in, and they chuck you on a bed and rip off your clothing, that something is really wrong!! So I had to stay in the hospital for a couple of nights observation, as the Cat Scan had shown a lesion on my lungs. They had to be wary in case it was cancer!! I was a freaking mess, by this time. Home from hospital though, cry enough and they’ll let you go!! They started me on a needle called Clexane, a Warfarin type drug, but couldn't actually give me warfarin itself in case I needed a biopsy, and of course I would probably bleed out. So for about 6 weeks I was on needles given by nurses at home 2 times a day, a great service we are blessed with. I couldn't sleep in my bed, I was frightened to moved off the lounge, I love my daughter with all my heart, but didn't want her cuddles, I had just lost the plot!!

Anyway, now I can cut it short, the lesion came down in size with every fortnightly cat scan, so they were confident it was only a clot, not the dreaded “C” word. However my doc, told me he would continue to pray for me, man that totally freaked me out. I couldn't at the time see it as a nice gesture to me. It meant I had to be dying.

Eventually after 6 months I am off the warfarin, however I still have to have another cat scan, that I am putting off until I go back to the hemo on Nov 12, so I will arrange it then. I am being weaned off steroids, I think this is my 3rd time. Of course, then I crash and go back on them. Thanks to all you out there, I am aware of different meds and treatments. Short term I have had no trouble with steroids, except extra sweating, and not being able to see 3 feet in front of me. I was told by my Hemo that steroids cause a thin watery lining over your pupils and basically seeing is really hard, and it is. I do know from previous experience it will go away though. 

I'm certainly going to inquire about the other drugs and treatments though, I think steroids is just the easy option. He must dread me coming, with my list of questions, that makes me sound really clever and knowledgeable.  Of course they are just stolen from all of you, but it keeps him on his toes. I do share care with my doctor though, because mine is fairly standard !! I’m hoping this time will be THE time, that it works, and ITP just disappears, I really don’t want it anymore.

One thing that I do know for absolute certainty, that without my ITP GROUP, that I accidentally found, I would be nowhere. Further, I have gained so much knowledge, love in abundance, and friends that will last forever. I'd love to name you, but you know who you are!!!  My hope is to start something like this in Australia. Without my group, I wouldn't have had the confidence or support I need to be even able to think that. I don’t have a rash, I don’t bruise, I just don’t have platelets, so I guess really it doesn't or shouldn't effect my life the way I let it. I don’t all the time, just sometimes like now!! 

Somewhere in between this, we have moved state for my husbands job, I know absolutely no one in our new State, but it’s kinda cool. I don’t have to meet someone and say, "Hi I’m Ros, and I have ITP." I have 3 children and one has gone back to our old state, because he is at the end of schooling and the curriculum is just too different between states. He is happy and living with my parent’s. I try to tell myself its just like boarding school, but just thinking about him not being here makes me cry, I need him, lol. My hubby has been fab, taking me to my appointments etc, but truthfully I think he may be sick of hearing about it.  I think maybe I am suffering a little from PTSD, maybe, but I will cruise through it,(reading what I've just written, I guess I'm entitled though). Well that is my plan, but I'm not silly. I will get help if I need it. Like I mentioned earlier though, I really would give my right teeth, to have a hug and cuddle with Greta right now. xxx

Ros, here's a big hug from me and all the other ITPers reading your story. Thanks for sharing!!


10 comments:

  1. ITP is the roller coaster ride that none of us paid for and find it very hard to get off of! Stay strong and try not to get to dizzy from the ride!

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  2. Thanks Hap! You are a great example for the rest of us to follow!

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  3. Meredith PrescottJune 18, 2013 at 1:45 AM

    Awesome article!!!

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  4. Great article, thank you for sharing your story. You are very brave...gk

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  5. I love reading other stories about itp. so interesting to hear about something that's hits close to home. Thank you!

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    1. Thank you Anne, Meredith and Gen,
      We are all in this together and have to support one another. Sharing our stories is a great way to do that!

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  7. Hi Ros, where were you living before you moved state? I am a clinical research doctor in need of some ITP contacts. I'm particularly interested in speaking to Victorians (or people nearby) with ITP. Could you please contact me? email: contact (at) trialone.com.au

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  8. Hi, I was diagnosed with ITP in October last year, was treated and relapsed in February this year. I live in Far North Queensland and I would like to find a support group or something so I can see how other people deal with this. I don't know anyone else with this condition and had never heard of it until I got it. If anyone knows of a group in the Cairns area I would appreciate hearing from you. Thank you

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    1. Hello there,
      Roz has a Facebook group "ITP for Aussies" that will help you find other Aussies in your area. https://www.facebook.com/groups/165628813638408/
      Good luck to you finding some other ITPers in your area.

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