Interferon!

As ya'll can see from my previous updates, I haven't been too excited about the two drugs my doc mentioned. So, like the good patient advocate that I am, I researched things on my own and came across some studies for a drug called Pegylated Interferon (the pegylated part has to do with what it binds to and it's ability to stick around in the system longer...so you only have to take it once a week).

For the geek in all of us, here are links to two abstracts:
http://www.ncbi.nlm.nih.gov/pubmed/19826111
http://www.ncbi.nlm.nih.gov/pubmed/18650451

So,what does this mean in good ol' plain English? Well, this particular drug has been used to treat hepatitis and some smarty pants decided to see how it would work with people who have PV...perhaps because one of the side effects of the drug is bone marrow suppression (which is exactly what us PV folks want!). In many patients it created a COMPLETE REMISSION (or "complete response" as the abstract states), and in some cases it REVERSES the gene mutation! Holy Cow Batman!

Anyway, I emailed the studies to my doc and he responded right away that they looked very promising. We are planning to meet on Monday, so let's cross fingers that he's done some more research and can get me on this drug (and that it works, of course!).

In other news...planning a brunch for a few friends on Sunday (and yes, we're going to eat outside in the semi-madeover backyard if it's not too hot). Cleaned out the fridge today, found a bunch of healthy stuff I had forgotten about in the cabinets and managed to fit my dehydrator AND juicer in the kitchen! Hoping to start doing more raw-foods, and having a permanent home for the ol' dehydrator beast should help.

Gotta get back to work!
Hugs,
Mo

All by myself....

I have that song running through my head...All By Myself.....lalala. Why? Because I am going to spend the night all by myself for the first time since this diagnosis. Hopefully I'll be able to sleep, though of course, I'll be waking up every two hours as is my norm. Not planning to sleep through the night until the platelets are below 600,000. Anyway, just reporting in...wish me luck!

My platelets are stupid

Just spoke with the doc...he'd left me a message the other day saying it was time to start considering platelet-lowering agents. The two he mentioned, Hydroxurea and Anagrelide, have icky side effects and I'm not too keen on taking either one of them. So, when we touched base today I thought he was definitely going to push for meds. However, since my hemoglobin has dropped to normal he says I'm not "high risk" for stroke right now...I guess just moderate risk (which is still rather poopy), but since I take an aspirin every day he says we can watch the platelets for a bit and see if they continue to go up or if they drop down below 1 million. If they stay below a million, I can just take an aspirin...otherwise it's time for meds.

I have, however, been reading some promising studies regarding something called 'pegylated interferon'...apparently plain ol' interferon is nasty stuff, but people seem to tolerate the pegylated version much better. Studies have been done on patients with PV and it has shown an "excellent" response...some people even go into a lasting remission. I plan to print these out and take them to my appointment on the 1st.

Now for some awesomeness...Tom and I are giving our backyard a little touch-up. Not a total re-do, but we're putting in a fresh layer of decomposed granite and new bender board for the flower beds. It has made such a huge difference! I'm going to get a few new plants on Friday and re-mulch the beds...it is going to be party ready in no time! If we can finish our bathroom project we could potentially have an end-of-the summer bash. Fun fun!

And...without further ado...our new addition!

And here is a shot of the interior:

Isn't she just adorable?
Hugs to all!
Mo

New car and more lab results :-)

Ok, let's get the business end of this out of the way...went to the vampires yesterday and got another unit of blood drained. My hemoglobin is now 11.9 (goal was 14...so I'm well under that), WBCs are back to being within the normal range (on the high end, but still within normal limits), and my platelets are still climbing, though at first glance it looks like they haven't jumped by quite as much...but what's it really matter when they're over 1 million anyway (normal is 150,000 to 400,000)? Call me Super Clotting Girl! Ok, not funny...since a clot is the evil little demon lurking around the corner of my every thought these days. Hence the reason I set my alarm for every two hours in the middle of the night...I figure if I wake up and find I've had a stroke, I've still got an hour to get to the hospital and start thrombolytic therapy. I seriously can't wait until I can sleep straight through the night again...I wonder if this is how parents of newborns feel? Well, they're probably a lot happier than I am right now...my mood has been a bit on the downer side and I have to say, I do not like it. Not one bit.

And now for the awesomeness....I got a new car! An adorable little Subaru Impreza hatchback...she's white with beige interior. I'll take some pics soon and put those up.

Ok, off to get ready for work. The awesome thing about being at work is that I hardly have time to think about my health...I'm too busy taking care of others. It's a wonderful feeling, and I'd do it more often except for the fact that: a) overtime is frowned upon, and b) it's totally and completely exhausting.

Day off tomorrow! Yay!

Hugs and fuzzy warm kitties,
Mo

I'm almost there!

Got my 2nd phleb done yesterday and my levels today were almost to goal! Yay! The nurse at the infusion clinic initially thought it would take about a month to get to these levels. She obviously did not know who she was dealing with. However, my platelets are all out of whack, so not really sure what's going on there. WBCs are also on the rise. Could be due to stress or just this icky disorder. Meeting with the Doc on the 1st, so will find out more then.

Awesome thing of the day....Trudi!!! She is sporting one of her many costumes (she's the canine Cher, I tell ya), and it just makes me smile. Animals are indeed AWESOME.
Hugs to all!

Awesome News!

I got blood drawn at the lab today...and I am happy to report that my hemoglobin dropped by 1.8 points...after just one phlebotomy! My platelets are still rising (darnit), but am trying to focus on the positives. At this point the platelets are close to 1 million (normal is about 100,000 to 450,000), and I'm not sure at what point meds come into the picture. I have an appointment with my doc on the 29th. Stay tuned.

Something awesome happened today:

My friend, the Yoganazi, surprised me with this over-the-top surprise present. What's the occasion? She's awesome, that's the occasion! Apparently, this particular bag was chosen because it will match my new car...hopefully going to pick it up tomorrow! Will the awesomeness ever end? Let's hope not!

Diagnosis

The past week or two have been a real roller-coaster...hope mixed with terror, curiosity mixed with avoidance...it's been trying to say the least. Based on my EPO levels (a hormone produced by the kidney to stimulate the production of red blood cells), my doc has essentially confirmed that I have Polycythemia Vera. It's a disorder of the bone marrow that causes it to produce too many cells..in my case RBCs and platelets. This causes the blood to essentially become too thick leading to awful things like blood clots which manifest as stroke, heart attacks and pulmonary embolism. Not happy thoughts.

So, the goals of therapy are to get the blood levels down to normal ranges while reducing the blood's tendency to clot. To do this I take aspirin every day and also get a phlebotomy 2x a week until my levels are normal. A phlebotomy is basically like donating blood except they throw it in the garbage. Here is a picture of me after my first phlebotomy.

I was very nervous going in...but my good friend Kerry came along and held my hand when they poked me with the huge needles. When the first set of IV tubing clotted off almost immediately due to the extreme sludginess of my blood, I got a little bit scared. Happily, nurses are very clever, and they figured out how to use a different type of tubing that was a little larger in diameter. I hear that as the phlebotomies progress and the blood gets thinned out, you can see the difference in how easily it's able to move through the tubing. I'm going again tomorrow, and will video tape it. Yes, I know it's dorky...but I'm doing it anyway :-)

Referral

So my doc referred me to a hematologist (who also happens to be an oncologist). So when I called to make the appointment, the woman who answered the phone said "Oncology, this is So-and-So." Needless to say, my heart dropped down to my shoes. After setting up the appointment time she says, "Now, I don't want you to freak out, but when you come to the appointment, the door says 'oncology'...it's all in one unit." Don't you think she could have said that FIRST? Geez!

Regardless, I am still a bit freaked out as there is obviously something funky going on. And the reason my doc is both a hematologist and an oncologist is because blood disorders and cancer are so closely related. Great. Anyway, I have vowed to stay off the internet and stop trying to self-diagnose myself. In the meantime, I'm just focusing on drinking my 64 oz of water every day and eating foods high in iron. For breakfast, I had a green smoothie with blackstrap molasses, which is super high in iron. Plus, it was yummy! And high in fiber! And full of vitamins and nutrients! Loooove my green smoothies. I think I could work this angle and get Tom to buy me a Vita-Mix...hm.....

Anyway, Tom gets home today from a camping trip...he cut the trip short so he could be with me in my freak-out-edness. I think staying busy is the key. It's when I get in bed at night and there's nothing to distract me that my mind starts going to those scary places. Today has been good so far...this morning I went to an ICU Skills Fair for work where I had to get checked off on a bunch of stuff like ScVO2 monitors, IVDs and lumbar drains, temporary pacemakers, PA caths, sepsis screening, pressure ulcer prevention, rotational therapy...so, that was nice and busy! Saw lots of people from my unit there...starting to feel like less and less of an outsider. In a few minutes I'm picking up my pal to grab lunch and go scrubs shopping...she starts her new job on Monday, so now all my friends have found nursing jobs...awesome!

Ok, off to make the house look like I semi-cleaned it before T gets back from his trip. Hugs to all!
Mo

Honk if you love my blog.

Hey friends and fam...I don't update this much because I am not sure anyone else reads it. Probably due to the fact that I have my privacy settings set to "If I told you, I'd have to kill you." Anyway...if you've been in touch with me at all lately, you know I landed my dream job in the ICU. It is all kinds of awesome!

In other news...dealing with some troubling blood work but am trying not to get too freaked about it. My red blood cell count is high which means I've got a horrible disorder or I'm pretty darn dehydrated. I'm going with dehydrated and as a result am drinking a ton of water...I downloaded a little app for my iPhone called Water Tracker. It's pretty neat...you can set random reminders throughout the day that say, "Hey, drink some water!" I've set my goal at 12 8-oz glasses and have done good for two whole days in a row! Apparently it takes a bit to reverse chronic dehydration, so I'm going to stick with it until I get my next blood test. I also have super high platelets, which can also be a horrible disease or an iron deficiency. Since my ferritin levels came back low, I'm hoping that's the reason for it and not Something Else. Tom (and everyone else) thinks I need to eat beef every now and again...and honestly, I probably would because this shilolah is scaring me awfully bad. However, I'd like to try alternatives first...and one of the things I've been reading about is celiac. Apparently, a significant number of people who are diagnosed with celiac have NO gastrointestinal symptoms at all....they get tested for it because they have iron-deficiency anemia (like moi). With that said, being a vegan AND following a gluten-free diet would be rather restrictive, and I may have to throw something back into the mix to replace my beloved seitan (which is 100% gluten and one of my all-time favorite things). Sigh...we shall see. I just want to get this blood work back to normal so I can stop lying awake at night thinking about all the horrible things that can happen. And I also may have a B-12 deficiency...I'm telling ya, I am one really untalented vegetarian! I am sure my doc will do more tests, so stand by...if anyone is out there, that is.

In other exciting news...Tom and I found a little house we'd like to buy. It's two streets over from us and is absolutely darling! It would make a great little rental. Not sure we have enough saved for a down payment yet, but T is supposed to call a lender tomorrow and get some ideas. I may have talked him into staying in this house, but there are some things I'd like to do to it to get it more organized and functional. Namely, I'd like to turn the office into a humungous walk-in closet. That would be The Most Awesome Thing In The World. It would also cost Way Too Much Money, but could possibly be a fun DIY project. We'll see...need to buy the little rental first, so stand by.

Oh, speaking of buying things, I bought a new car. Or rather, I committed to buying a new car. It is enroute from some mysterious place and will arrive on the 20th...only 16 days away! Yippee! It's a white Subaru Impreza hatchback. Super super cute. I'll take pics once it's in my hot little hands...or maybe a video using Tom's dorky GoPro camera. YouTube here I come!

Ok, that's enough rambling...do me a favor and post a reply if you are still reading. I'd kind of like to see which of you I've suckered into following this almost non-existant blog.

Love and hugs,
Mo!

Is there a hematologist in the house?

Before I graduated from nursing school, I told myself I would blog more often...especially about the trials and tribulations of my first year as a nurse. Ha. I've been way too busy, way too exhausted and way too overwhelmed. I've been working at my new job in the ICU for eleven weeks and this is the first time I've even felt like sitting down to write about it. But, truth be told, that's not what is on my mind this morning...I am dealing with some troubling lab results and that seems to be all I can think about.

I went in for my annual "girlie visit" and asked the NP about getting my cholesterol screening done. She said she'd like to throw in a CBC and chem panel as well, so I said, "sure"! You know how us ICU nurses love data...the more the merrier! So I get my results back and started with the cholesterol (excellent), worked through the chem panel (fine and dandy) and then got to the CBC (not awesome). The results are troubling and I am wracking my brain trying to "self-diagnose" myself into a non-terrifying explanation (I've since had a follow-up draw, so that's the second set of results):

WBC: 10.2, 10.9 (normal...whew!)
RBC: 6.56, 6.66 (range 3.6-5.7)
Hgb: 17.1, 17.2 (range 11.5-15)
Hct: 51.8, 51.9 (range 34-46)
MCV: 79, 78 (range 80-100)
RDW, RBC: 17.5, 18.5 (range 11.9 - 14.3)
PLTs: 859, 858 (range 140-400)

Of course, I made a little diagram showing all the possible causes for each of these results (per my lab book, so probably only a portion of the possible causes, but I had to start somewhere). The happiest, very best explanation for the elevated RBC & Hgb would be that I am chronically, chronically dehydrated. I know I don't drink enough water...I absolutely know it. I am hoping like hell this is the reason. The other possible cause is polycythemia vera, for which there is no cure. Even if I don't have PV (and knock on wood that I don't), a RBC and Hgb this high is pretty scary...stroke, organ dysfunction and pulmonary embolism have all been circling around in my head for days. Sadly, as a nurse, I know just enough to scare the crap out of myself...but not enough to be reasonable and rationale.

Moving on to the high PLTs, I've been hoping against hope that I have an iron-deficiency anemia (because, trust me, the alternatives are way cruddier than that). AND THIS JUST IN!!! I just got a lab result back and my ferritin level is 9 (normal is 22-291)!!! Ok, normally this would be huge cause for concern, but I feel like this is something I can control. The other possible causes (things like cancer, polycythemia vera, rheumatoid arthritis, inflammatory conditions, chronic heart disease, cirrhosis, essential thrombocythemia, leukemias, pancreatitis, TB, ulcerative colitis) are super scary.

The thing that's throwing me is that with I.D. anemia, my RBC and Hbg would be low...but possibly the dehydration is causing such hemoconcentration that it appears high despite the anemia? I did have microcytes...which is also a sign of anemia...so I don't know. I am definitely feeling better about things than I did when I sat down to write this, but I am pretty sure my doc will send me to a hematologist. In the meantime...I'm upping my water intake to 12 glasses a day and eating iron-rich foods. I've been a pretty lazy vegetarian for a while now, and am hoping I won't have to resort to eating meat. Hoping I can just get back to eating lots of greens and such...we shall see. This is scaring the pants off me, so I will do whatever I need to do to get healthy...even if it involves eating a cheeseburger. Let's hope it doesn't come to that.