numbers Numbers NUMBERS!!!

I feel like my life revolves around numbers!! I can tell you what all my blood level numbers are, what they should be -the normal range and how long it's been since they were normal.  I've now been taking my Pegasys for a month - tomorrow is my fourth shot and I've had 4 blood draws since I started my shots. I got my results for my blood draw on Monday and it's still not where we want it be.  The whole point of me taking the Pegasys is for the side effect that it has of making your blood counts drop - that's the whole reason for me to take - all of the awful side effects that it has that's only one that will help me.

For the last almost 3 years my red blood cells, white blood cells and platelets have all been almost double then what they should be. The mutation that occurred in my bone marrow now causes it to make way too many of all three of those which leads to all sort of other issues. Since taking my Pegasys my white blood count and my platelets have both been cut in half and are now both on the low end of normal! YAY!! However my stubborn red blood cells have either stayed the same or have got higher! These are the ones we really need to come down because these are the ones that crowd your blood and makes it thick which could lead to stokes and heart attacks. The last 3 weeks my red blood cells have actually been above the point of where I need to have my blood let out.  We had been taking a wait and see approach to see if the Pegasys would bring it down. Once my levels hit a certain point I have issues with extreme headaches, fatigue and fainting spells which have been occurring more frequently as my level stays high. So I'm waiting for a call back from the doctor to see if we will keep waiting or if I will be scheduled to have my blood let out again. I think at this point I would opt to have it let out and hope that once it's low the Pegasys will just keep it in check.

The shot has been pretty brutal if you know anything about interferons they are AWFUL!! They can be life saving but they come with a cost! Pegasys hasn't been FDA approved for PV however it's been used successfully in MANY trials and is becoming a standard treatment option! The list of possible side effects that comes with the medication is a page and a half long! NO JOKE! On Wednesday night I take the shot then spend the next 12 hours throwing up, with chills, and severe body aches! It's kind of like having the flu times 10! Once that goes away I have a really really bad headache that nothing will touch for about 24 hours and am super tired - I sleep almost all day Thursday once I stop throwing up. The rest of the week isn't too bad it does mess with my emotions a little bit - it's been known to cause depression really bad - and actually can make people suicidal at which time they take you off of it - however it remains in your system for 6 months once you stop the shots so that's something that watch VERY closely. Some other side effects that I've noticed is I'm losing my hair - it's VERY thin I'm not sure how much more I will lose but hopefully not much.  It's suppose to grow back once you stop the shot but this is something I might have to be on the rest of my life... so I'm not sure how that will work... I might have to get used to wearing a hat! :) I've notice little change in my vision but hopefully that will go away. My mom has been great helping with the kids because I'm pretty useless from Wednesday night until Friday morning. Keegan really did not like the first night I was sick - he's gotten better and once I'm feeling better on Fridays Triniti is usually glued to my side. Sometimes the side effects get better with time and that's what I'm hoping! :)

This is the cooler my Pegasys comes in every month straight to our front door!

This is what $1500 looks like - that's how much this one shot cost without insurance! And it's only a one week dose. We are so thankful that we have insurance that covers it and our co-pay is only $40 a month.  We are VERY blessed!

That's it - this little shot can do so much good - yet so much bad at the same time! :)

Thanks to everyone for all the support you've given us - all the calls, e-mails, text, and facebook messages checking in seeing how my shots are going! They really keep up going! Hopefully this kind of gives everyone a glimpse of what we've been going through the last month!