My platelets have been holding steady in the normal range. Normal counts are 150,000-400,000. People with chronic ITP can have counts between 50,000-80,000 and doctors are ok to keep a close eye on it supplementing with steroids and IVIG as needed. I’ve been getting blood tests every week and the latest one has my counts at 238,000!! Super exciting and now I only need to get blood tests every 2 weeks and if they continue to be normal the blood tests will become less frequent unless I see symptoms.
I’ve been doing the same things since mid April including no alcohol, no aspartame (artificial sweetener), trying to keep stress low and I’ve now switched to the taking 2 capsules of the papaya leaf supplements a day instead of the drinking the tea. The pills are stronger than the tea and much more convenient. I did have a big jump from 172,000 to 238,000 maybe because the pills are stronger. I can’t really be sure anything that I’m doing is really helping considering the I in ITP is idiopathic (no known cause) but I’d like to think it is – no reason to believe it’s not – right?
I’ve really been feeling great and can’t thank everyone enough who has called, texted and kept up with my progress it’s really meant more than I can say. I’m praying that I can stay on this path and really get back to normal life soon. This weekend I may try a glass of wine and see how that effects anything since I have a blood test coming up next Thursday. Keep you posted!!
I stayed in the hospital for 3 days until my platelets were above 20,000 and I could be released. It was a long 3 days – I don’t want to complain because there are people who are hospitalized for a long time- but it was a long 3 days. There really wasn’t much they were doing for me besides keeping me on steroids since this is the first way to treat ITP to get the platelet count to go up.
When I was ready to get released I asked both my hematologist and another doctor that was checking on me – ” What should I do – What should I not do?” Both said there wasn’t anything to do or not to do since there is not cause for this – “ideopathic”. All this time I’ve been trying very hard to not google or research what was going on because we all know how that never ends well. Googling any symptoms always ends up the worst way – cancer- death. So that’s what I did – went about everyday life just as before. Went back to work, had my nightly glass (or 2) of wine and figured my platelets would keep going up. The whole thing with this is – I never felt bad- I was working out, living life and never felt sick. I was released on Friday and worked all weekend with my next blood test scheduled for Tuesday. Tuesday morning I went to get my blood tested and then to work. A few hours later in the afternoon my phone started blowing up and I could see it was the hospital and figured this probably wasn’t good. I was surprised to hear my platelet level plummeted to below 2,000. They wanted to admit me into the hospital again but I convinced them I would go straight home, wrap myself in bubble wrap and not do anything. They scheduled me to get what is called IVIG which is an infusion of globulins the next day.
The next day I went to the hospital to get an infusion took about 4 hours and then the day after the same thing. These globulins are supposed to bond to the ones you have and build up your system. It worked my levels went up so that was good news. So, then again, I went about life.
There are two kinds of people – the kind that go to the doctor and the kind that DON’T. I definitely fall into the second group. I’m very responsible when it comes to my annual mammogram and gynecologist appointments but other than that I avoid the doctor at any cost. I feel that if I let something go long enough it will self correct and everything will be fine. I’m lucky that I really don’t get sick. I had a physical at age 40 and another one right before turning 50, but that’s it.
And then…It all started with me getting alot of significant bruising for no apparent reason. I explained this by saying I was working out and I can be a little clumsy. I got a large bruise on my chest and I just thought I must have bumped myself at work or something. At this point my husband said ” you need to make a doctor’s appointment.” I continued to ignore all of this going about my normal routine. I woke up in the middle of the night and needed to blow my nose and it was bleeding – not just a little but pretty significantly. I’ve never had a nose bleed in my life. At this point I though maybe I should make an appointment so I scheduled one in the next week. A few days later I came home from work and noticed little red dots on the top of my hands and my feet – not raised like a rash but as if someone had taken a red pen and dotted it on my skin. I walked downstairs and said to Paul “something is wrong, really wrong. I need to go to the emergency room now. I had my doctors appointment scheduled for two day from now but nothing was stopping me – I was going to the ER.
W e got to the ER and I explained everything that had been going on and they took blood and started testing. We waited and I expected them to come back with something like anemia and we’d be on our way. Instead, they came back to take more blood and said they were retesting for some things. At this point it’s taking very long and I’m starting to get very scared. “Re-testing to me meant checking for something serious.”
Finally a doctor came in and said they believed I had ITP – ideopathic thrombocytopenia purpura which causes your blood platelets to drop. My platelets were below 2000- normal platelet counts are around 150,000. They explained they had never seen anyone with platelets so low and they were admitting me into the hospital.
WAIT—– WHAT??? I couldn’t wrap my brain around this. So I said ” I’ll go home and come back tomorrow morning.” The doctor looked at me and said ” no you’ll need to stay here in the hospital and you can’t brush your teeth, floss and if you cut yourself or fall you need to press the emergency button immediately.
And then she looked at me and said something that changed my life…..”It’s ok, you’re going to be ok, you don’t have cancer.