2 Reds Straight Up, with a Platelet Chaser

Now that I have my new Port in place and can no longer partake of my favorite wine and beer, the wine analogies have taken over my impoverished brain.  If someone tells you, "Don't even THINK about apple pie!" then all you'll see are apples, pies, pie a la mode... I'm sure there is a psychological term for that, but I digress.

Monday's blood work showed Low's & High's:
Hemoglobin: 7.9  (low)
Hematocrit: 24.9  (low)
Platelets: 62  (low)
Whites:  3.1  (low)
Neutrophils:  33 (low)
MCHC: 31.6 (low)

High are Bands, Metamyelocytes, Myelocytes, Anisocytosis, Poikilocytosis, Polychromasia, and Schistocytes.  (I'm still looking up all these from the Manual Differential test).

Next thing I know, I'm here at Gwinnett Medical Center's Out-patient Transfusion Center.

Good to the last drop!

2 units of platelets

My appointment is for 7:00 am EST. 
Yes, you read that right! 7:00 AM
Hells bells, I wasn't a morning person on my best, healthiest days!
Kudos to my wonderful daughter who brought coffee to my bedroom this morning ~ at least it got one eye open.

I'm getting two units of Red Blood Cells and 2 units of Platelets. This is the first time I'll receive platelets and third time receiving RBCs. 

I must give a shout-out of THANKS to the blood donors from Gainesville, Florida who made their precious B negative blood available to me. Thanks also go out to the platelet donors who are saving me today. 

 Thank you! Thank you! Thank you!

Close up look at the port in use.

My last blog entry shows what the port looks like (please excuse the leftover betadyne stain on the skin. Here are pics of the port in use. With great advice from another patient, I applied a dollop of lidocaine 5% on the port and covered it with a clear sticky sheet the nurse gave me the day before when I went in for the blood match and cross. I put the lidocaine cream on the port site about 20 minutes before my scheduled appointment. 
The nurse, Amy, was fastidious in her preparations and the IV hook-up. We both wore masks during the process. I barely felt the needle go in through the skin! Yay me!

Turns out she worked in the transplant unit at Northside Hospital (where I will be). I was quick to recognize her knowledge of blood stem cell transplantation and peppered her with questions throughout our day together. Her candor was professional and refreshingly frank. 

When I asked about how to best prepare for the big fight (other than eating well, avoiding illness, and exercise), she recommended that we prepare for the enormous physical and emotional toll it will take on me. It can be frightening to someone who doesn't understand that it is part of the process. Others have told me that the intense chemo takes you to death's door, leaving you to crawl back to the land of the living.    

Well folks, I'm not sure we'll be sharing photos of that grandeur (but you never know).

While the platelets were dripping in, the hospital chaplain stopped by. Now, I don't know why, but when an official person of God shows up in my hospital room my first reaction is, "Why am I the last to know? How long do I have? Holy crap! What sins should I be confessing? Is eating ice cream out of the carton (double dipping of course) and sticking it back in the freezer a deal breaker?"

Platelet Pole Dancing

We talked for awhile, while I was under the influence of Benadryl, and I think I confessed to a lot of anxiety about this whole silent sickness / need a transplant / need an unrelated donor situation. The speed at which this seems to be progressing is really throwing off my well-intended plans to hit some Bucket List items before the transplant. She listened attentively, likely wishing she picked another room. 

As I talked, my eyeballs got a bit sweaty and I decided to lighten the mood. I asked the minister to take a picture of me pole dancing with my platelets. She kindly indulged me as you see here.

I'm home now and feel exhausted. Time for a nap!

The Outs and Ins of MPNs

My last phlebotomy was on June 29, 2012. It took about 15 minutes to withdraw 500 ml of that RBC-rich blood from my body. Now, almost eight months later, I'm receiving my first transfusion of packed red blood cells.  What a ride this is!

When my hemoglobin (hgb) and hematocrit (hct) was not stabilized with Hydrea last summer, I needed a couple of phlebotomies to get me back in the zone. Since last fall, these counts have slowly but steadily fallen. 

Now, with Hgb at 8.2 and Hct at 27.4, I can't walk up the stairs without my heart pounding. I get light-headed and dizzy when I walk or stand for much time around the house. (You know something is not right when you find yourself looking for things to lean against as you move around. Similar to when I was pregnant and had to scope out the nearest restrooms)

One of the great take-aways from the Joyce Niblack MPN Patient Conference held in Arizona this month was encouragement from experts like Susan LeClair, PhD and Ruben Mesa, MD that blood counts and ranges are not absolutes for every patient. We are encouraged to pay attention to our individual symptoms and let our doctors know.

This gave me the confidence to let my local hematologist know that I need a blood transfusion now (with at Hgb of 8.2)  -- I don't want to wait for it to reach 8.0 (the standard accepted level to begin transfusions). I've been very fatigued with it in the 9's for the last few weeks; when it fell lower this week, I had to cry "uncle."


Additionally, I plan to start taking Jakafi when it's approved by my insurance. Since blood counts often drop during the first few weeks, I want to start from a position of strength.


So yesterday I went to the hospital's outpatient infusion center to get my blood typed and cross-matched. Here is a good explanation of the blood transfusion process.

My "energy pack"

Today I'm getting 2 units of B negative packed red blood cells from a donor in Riverdale, Georgia. A nurse came in with a cooler that contained what I'm now calling my "energy pack." After verifying the info on the blood bag with the info on my wristband, the transfusion commenced.

As I sit here and write this while someone's generous gift is flowing into my veins, I feel quite humble. Someone took time (and energy) from his/her daily routine to help a stranger. It is an unconditional gift. No questions or judgments about my race, religion, age, gender, political views, sexual orientation, family situation, employment status, or the reason I need the blood. A pure gift of care and concern for others. 

One of the nurses explained that this donor helped me with the red cells, and another with the white cells, and a third person with the platelets. How is that for leveraging a donation? 

My mom was an ICU nurse while I was growing up and we learned how important blood donation is to saving lives. I started donating blood when I was 18 and in college. Because "B negative" is not a common blood type, the blood bank would sometimes call me in. I continued donating until my early 30's and quit due to chronic anemia. Later, in my 40's, I became symptomatic and diagnosed with Polycythemia Vera. I've been assured that my blood was good and safe for donation in my early years; the JAK2 mutation that triggered the PV occurred later. 

I have no idea how much blood I donated in my healthy years. But I'm sure it not enough to cover the blood I will be receiving over the coming months. Some have told me that they would like to donate to someone they know. I remind them that should they ever need blood (due to illness or accident), the donor who saves them will likely be someone unknown to them. 

Blood donation is the ultimate random act of kindness. I receive this gift of kindness and life with love and gratitude. It is yet another reminder of the interdependent web of life.