WOWZA! Good News - Sorry for the post lag!!

SO platelets are 173 and looking good! - that after an incredibly embarassing lag in posts... my bad, I apologize if I caused unnescessary concern BUT this is actually a great sign that life is getting back to its incredibly normal busy busy pace for moi :) as I am feeling MUCH better!

What I failed to post was a test in November which was normal but not great. Then I left for holidays in Colorado with family and a lovely week in Turks with John! Upon returning to chilly NYC in Jan I was caught up in changes at work, and a BIG MOVE to my new fantastic home in TriBeCa :) John & I are officially re-located to 88 Leonard Street #424 New York, NY 10013. This was a welcome change from my beloved but microscopic studio in Nolita, and I am excited about exploring my new 'hood! Now that I am somewhat settled I've made a point to slow down a bit and recoup.

This current Platelet count is very welcome for all of these reasons - going going going for the past 2 months and my body seems just dandy :) - Minus some slightly puffy eyes. This was actually the very first blood test that my Hema said is completely "normal", apparently all sorts of elements in my blood were always too high/too low and this is the first time he's gotten a completely OK read - which is great!! This is making a lot of sense when considering the length of time my treatments were expected to stay in my body. The prednisone should be flushed out by now, and the Rituxan is on its way out with the effects on my B cells also beginning to wear off. I should start re-growing Bcells right about now, and if I can make it to summer with good blood levels my body should be pretty stable. Beyond then, I hear from others that the 2year remission mark is the hardest to cross without relapse. If I can do that, the sky's the limit!

Platelets are 221 and I'm moving to 6 week testing! :)

So I'm clearly leveling off nicely with a 221 count! So happy with this news I can't even tell you. I'm still having some trickle - through headaches, and low energy but even this has improved over the past month. My weight and hair are back to normal (woohoo!) and I am gaining a lot more confidence in my body's ability to handle normal life again.

There is a TTP support blog that I subscribe to, where I can talk to others around the world with this condition, and this group is rallying to get more attention and understanding for TTP. If anyone has suggestions please share! :)

I was able to make one last trip to visit Grandma again in late Sept. and this time my sister Kristin was also there, so I had a nice visit with them both. As the weather rapidly cools here in NYC I am taking extra precautions to avoid the early fall bugs, so that hopefully I'll make it through this winter in much better condition!

My next blood test will be the first week in November, I'll let you know it goes! Hope everyone is happy & healthy :)

Up to 232!!! Woohoo!

My Platelets are up to 232 after the first whole month away from MDs! This is great news at nearly 3 months off all meds :) This means that my body is truly starting to level itself out independent of medication.

I am feeling better and better, still a bit low on energy and depending on coffee, but other than that I can finally say that the small bits and pieces of normal life are finally feeling normal again. I am really starting to feel like the me that I was all the way before my symptoms even started last summer. Its funny because I couldn't have verbalized what still didn't feel right a month ago, but I can tell that its starting to feel normal again now... such a relief!

The trip to Michigan was short but VERY nice :) It was fantastic to see my Grandmother again! I hope to return for another long weekend before the summer is through. Here is a link to some pics:

http://gallery.mac.com/linda.marie#100198&bgcolor=black&view=mosaic&sel=0


My Next test is set for late September, I'll give the update then!

179 and I've graduated to Monthly testing!

SO this week's test showed platelets at a not-so-high, but definitely not-so-bad 179. My white & red blood cell counts are also normal (often I get a high white & low red) and my hemoglobin is also level. So Dr. Pastore thinks this is all good news at almost 2months off medication, and has given me a whole month till my next test :)

I am very very slowly starting to feel normal again... my energy is still not what it was, but improving ever so slightly as the weeks pass. I think my hair has stopped falling out so much, and I can see a bunch of little baby fuzz hairs coming in again from my partline :) I've fallen into a pattern with daily coffee to get my energy up, and although the caffeine can't be great for me it must be better than any of the meds they offered to do the same trick. So all in all things are looking good and I'm crawling back to normal!

The last trip to MI was cancelled after 5hrs of plane delays at the airport; so we are making one more attempt this weekend - think happy traveling thoughts!

I'll let you know how things look in late August!

194 - Holding steady :)

Wow, I don't know where the week went - but 194 was the level this past Monday :) staying about the same as my last reading which is good! Both Dr. Pastore and I would be a little more comfortable with something in the 200's for a bigger cushion, but I'm definitely satisfied as long as I'm not in the hospital :)

I'm feeling good - still trying to get back to my usual energy level and working on flushing the drugs out of my system, but in comparison to the past 6 months I'm much much better :) Next weekend I'll head back to MI for the first visit with my grandmother since this whole debacle began in November 2008 (oy!). She is very excited as am I, and this time we will have the safeguard of John and my mother present, as well as the contact info for an emergency center where they are able to treat TTP (courtesy of a MI patient I met on my TTP support blog). I am not worried about anything happening but am grateful for the comfort :)

Next test will be in the beginning of July!

Platelets are 178 after the first big month of work and trips!! :)

So my platelets are 178; a bit on the low end, but technically still in safe range (100-500) which is a big relief after my first big month of daily work, work travel, and a fantastic trip to the beach with John! (Pics http://gallery.me.com/lauren.aichinger#100546) My body has not had so much activity since summer '08 and I'm so happy that it seems to be functioning properly :)

My Hematologist Dr. Pastore was a bit nervous by this number because the last time I was off meds and had a reading in the 170's he brushed it off and 2 days later I had relapsed and was hospitalized again. SO I'm taking it VERY easy this week and going back in just one week for another test to be sure.

I hope this finds everyone well and I'll let you know Monday's results!

224 and holding steady!

Hello! Today's test showed platelets at 224 (great!) which is pretty level with the 230 from a week and a half ago, so I'm very happy!

I'm feeling well and looking forward to the summer. I have one more week at every other day prednisone dosing, then I'll be COMPLETELY OFF after that!! Very exciting :)

Next test is Friday the 22nd!