Thursday, September 27, 2007

More Rituxan

Just back from my first Out Patient Treatment. Man, what a difference it makes. My heart is racing (I think from the steroids and the increase in BP from all the IV fluids). Not bad but I'm going to go rest in a minute.

Platelet count now better than the majority of the population. Back to clotting when needed. Excellent.

First Out of Hospital Therapy

I am closing in on feeling normal. I started to exercise yesterday and it is surprising how little effort it takes to make me completely wiped-out. Still, at least I'm getting closer to thinking and feeling like before the whole incident. I know it will be a while since the steroids will keep playing with mood and blood sugar levels but sooner or later ...

I'll be heading off to an appointment in about 4 more hours to get my weekly dose of Rituxan and get my platelets counted. My doctor assures me that the office count is considerably faster than the hospital count. I guess he doesn't have as many people competing for results or he is after only specific immediate results. I'm sure they'll check everything since you have to visually check for red blood cell shapes and others.

The whole thing is still a little nerve-wracking and I'll be glad when it is done.

Monday, September 24, 2007

Homecoming

What a delight. My platelets keep returning and sticking around (pun intended) for a while.

Due to what? Time? Steroids? IV Immunoglobulin? IV Rutuxan? There is no one on Earth who can say.

In any case, I'll stay on the steroids (a quick switch to Prednisone) and keep up the Rutuxan for a few weeks and ease off the steroids so that I don't suffer a relapse.

I don't want to go back, not in that capacity.

Platelets as of this morning, 88 thousand. Well along the lines of recovery.

Sunday, September 23, 2007

Cautious Optimism

I am unsure how to handle the news and it is hard to keep a hard grip on caution. My platelet count is significantly higher today.

Again, there have been errors in the past during my stay. We're all human and I make more than my fair share of mistakes but if this is real and if it continues tomorrow, I could be discharged.

I cannot tell you what that would mean to me.

Saturday, September 22, 2007

ITP - Idiopathic Thrombocytopenic Purpura

Blog time.

I ducked into the hospital 9/12/2007 for a problem. I'm still in here 10 days later.

I apparently have a condition called Idiopathic thrombocytopenic purpura or ITP for short. It means that I can bleed without stopping because my autoimmune system has gotten confused and thinks that my platelets are an infection and they are being killed quickly. Usually for a sudden onset of this with no family history of the condition, they blame it on a virus (idiopathic means "unknown" origin) that may have had some similar proteins to whatever my platelets are carrying. So, the immune system takes on the virus and when that's gone, it looks at all the platelets and screams "OMG, LOOK AT ALL OF THEM! ATTACK!" Or whatever the equivalent is.

So, I have the "super power" of being able to bleed like the Hoover Dam if I want. My count is so low that the doctors don't even call it a number. It's all just zero at the moment. Your normal Joe has about 150,000 - 400,000 platelets in a sample. I have 5000. That's not enough to stop a bloody nose. It actually means that walking down the hall I get spots because blood vessels break in my skin and I look like I've got measles.

Stick me with a needle and you've never SEEN such a bruise.

So, I'm a little more colorful now-a-days. I'd trade it for my usual pasty-white and never complain again, believe me.

There are other things that can cause this condition but they've never found anything that is causing this for me. Don't get me wrong, I don't want anything else unless it can be easily treated.

I'll include some links for anyone interested. There is some super reading out there and you can bet I've been going through it all and absorbing what I can.

I may be able to participate in a new study for a drug that increases platelet production, they're looking into that.

I may be able to regain my platelets back in time on my own (although that is starting to not look possible).

I may have to have them remove my Spleen ... but there is only a 60% chance of that working either. I'm not really thrilled with those odds.

In any case, life gives you what to live and doesn't ask if you like it. Enjoy what you've got, it could literally be gone tomorrow.

Here are the links about ITP for quick reading.

ITP

http://en.wikipedia.org/wiki/Idiopathic_thrombocytopenic_purpura

Good, generic explanation with a photograph.
http://www.nhlbi.nih.gov/health/dci/Diseases/Itp/ITP_WhatIs.html

Good explanation.
http://www.drweil.com/drw/u/QA/QA47079/

A little more technical.
http://www.pdsa.org/itp-information/index.html

Excellent technical resource.
http://www.emedicine.com/med/topic1151.htm

My latest treatment is Rituxan
Rituxan
http://www.medscape.com/viewarticle/426998_8

Here are conditions that can bring on the same effect but would require their own treatment. I do not (so far) have the markers for these conditions. In a way, that's a relief.

Non-Hodgkins Lymphoma
http://www.leukemia-lymphoma.org/all_page?item_id=7087#understanding

http://en.wikipedia.org/wiki/Lymphoma

Ominous Consequences of Immunoglobulin Deposition
http://content.nejm.org/cgi/content/full/329/19/1422

Splenic marginal zone lymphoma
http://en.wikipedia.org/wiki/Splenic_marginal_zone_lymphoma

Hodgkin's lymphoma
http://en.wikipedia.org/wiki/Hodgkin%27s_lymphoma

Non-Hodgkin lymphoma
http://en.wikipedia.org/wiki/Non-Hodgkin%27s_lymphoma

Non-Hodgkin's Lymphoma

(Platelet adhesion to wound site)
von Willebrand factor


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