Bone Marrow Donor Support Network

bone marrow donation peripheral stem cell donation donor education donor recovery donor support forum & chat room

The Need To Give

Who, Where & Why
My name is Marianne Guarena, the founder of The Bone Marrow Donor Support Network and my wish, more than anything, is to be matched with a recipient. Anyone, as many as I can, if possible. I don't have to know them, they don't have to be a boy or a girl, they don't have to be young or old, they just have to need a little gift I can give them if I can. Why you ask? Honestly, I can't even explain this need to help someone in this way. But I can tell you how it all started and share my story with you.

My boyfriend, Marc, and I moved to Las Vegas in October of 2003, we were busy as always working in our company, Enhancement Media, which provides a free Internet patient education service for those interested in plastic surgery. Time was flying by, you tend to become preoccupied with work, work, work and next thing you know a few years goes by before you know it! Granted, I feel we help others in a different avenue, aesthetic enhancement--and not that I feel guilty for it but I wanted to some how do something even more meaningful. Plastic Surgery is elective, it is totally voluntary. Those who suffer from leukemia, Hodgkin's and non-Hodgkin's lymphoma, and other deadly disease--it's completely involuntary and they have no choice. They don't elect to have their life-saving surgeries, their painful treatments, nor elect to take maintenance medications every day. With my potential gift, I hope I am able to at least give one person a second chance at life.

I met someone here who says she has leukemia and immediately brainstormed for things I could do, from donating marrow to peripheral blood stem cells (PBSC), fund raisers, donor awareness events, Leukemia Fund Poker Matches--anything and everything. I figured I'd start off small by getting on the registry myself. I started searching around the Internet regarding who the best organizations is to donate to or go through. Everything seemed to point towards the national Marrow Donor Program (NDMP). So, I visited their site and read up on the ways to donate, the steps to take, etc.

My Thoughts On My Particular Gift
Not to toot my own horn but I I feel to receive my marrow one would get off pretty good! I have NO allergies to anything, whatsoever. I cant tell you the last time I even had a cold much less the flu or anything (my immune system is pretty strong), and have no real history of disease in my family other than Type 2 diabetes which is totally metabolically triggered by their poor diets. Anyway, what I mean is, I hear that since the recipient gets your marrow, they also inherit your immune system, your blood type, your allergies, even your DNA. Wow! I read a story where one recipient loved peanut butter, but his donor was highly allergic to it. While this is unfortunate, he is healthy and living so mission accomplished. But still, peanut butter is sooooo good, I can imagine it being disheartening just a *little*.

I hope I am able to be matched with someone!!!

The First Step - Early May 2005 - Requested Bone Marrow Donor Information
There is no donor recruitment facility in Nevada so one in Arizona oversees our area National Marrow Donor Program at United Blood Services, 5757 North Black Canyon Highway, Phoenix, AZ 85015-2209 Telephone: (602) 242-5431, Toll-free: (866) 360-0000. So I call. No answer. No answer??? So I call back, no answer then voicemail. Better, but surprising. I leave a message with my name and telephone number, for more information on how to join. I believe this was on a Friday because they called me back on a Monday.

Marc answers the phone and tells me it is the NMDP, I jump for joy! I am excited! A not-so-friendly man announces who he works for and gives me a run down of info. He asks me was race I am. I tell him, "Well, I am white," I say in a weird tone which he might have taken wrong (like an "as if I am anything else?" way??) But I really only said it that way because I was trying to explain that I am like half Italian, half French, and a speck American Indian." He kind of snickers, but in a condescending way and says, "You're Caucasian." "Okay, yes, technically I am but I thought you wanted specifics." Apparently not, my mistake. So, he takes my name, address and phone number and says they will send me out a donor packet.

Two weeks go by, no packet, they are in the next state over so I think there has been an oversight. So, I call back and this time someone answered. A nice lady answers the phone and after hearing my plight she says, "Well, let me have your name so I can check, because we just got some materials and are sending out a lot of packets this week." They had been out of advocacy materials until a shipment came in a few days before. She comes back and tells me that I am on the list to have a packet sent out that week. YAY! and she shows her enthusiasm as well, I am excited! She is such a Saint.

May 23, 2005 - Received Bone Marrow Donor Information
I get my packet! Actually I get two packets lol! I keep one to give to a friend who is joining as well. Now you can see what the donor packets look like, the requirements and the questions they will ask you for the preliminary testing.

Documents I was sent:

Thursday, May 26, 2005 - Sent Medical Questionnaire and HLA Typing Fee
I filled all of my info out and sent my $65. check in for the HLA typing fee. Since I lived in an area where no donor facility exists, they are sending me a Remote Donor Kit. Wait, wait, wait. Story of my life. Also received by donor card in the mail today! I am a real official living donor!!

click for a larger image

Step 2 - Wednesday, June 16, 2005 - Received My Remote Bone Marrow Donor Kit
I received my donor kit right before leaving for vacation do I will have to wait until I get back from Florida before making an appointment to collect my sample. I wish my mom lived close, I could just get her to do it. When she was going through nursing school, we used to run from her when she was in the practicing injections and withdrawals semester. "Here's an orange to practice on, mom. Have fun and may you always get A's" and we'd leave the house!

I called a day or so before I went to get my blood drawn for my typing, asking about the clear fluid that was in the vial. There was no answer on all of the numbers I called, so I left a voice mail to call me back and my question. Was it supposed to be in there? Did I get the right tube? etc. I just didn't want to mess anything up. No one ever called me back, not even to this day. They are starting to really upset me. You'd think they'd be a little bit more professional, supportive and enthusiastic.

I forgot to scan copies of instructions they gave me but I will get a hold of another copy. I thought Id have time but the phlebotomist took my instructions and other paper work and put it in my box that got shipped to the NMDP. She wouldn't let me do anything. She even forgot to use the adhesive (black "C" in photo) to secure the bubble wrap. Instead she used medical tape she had. She said it was her first draw for marrow donation.

Anyway this is what I got in my Remote Donor Kit. (I took the pic on the seat where you get your blood drawn at the lab.)

Click Photo to right for a larger image

A. Collection tube for 10cc whole blood in yellow top ACD tube
B. Bubble wrap to protect sample tube
C. Adhesive seal to secure bubble wrap (black "C" on white strip)
D. Inner Bio-hazard bag
E. Outer Bio-hazard bag
F. Protective Cardboard Box (also contains lab & other paperwork)
G. Pre-paid Fed-ex Clear 'Clinical Pak' for shipping diagnostic specimens.
1. Absorbent pad (black "1" on white strip in bag E)

Wednesday, July 6, 2005 2:41 PM - Had Blood Drawn For Preliminary HLA- A, B, C Typing (Class I Antigens)
I went to Quest Labs in Henderson, NV- same place I did my CDC, Hep B and HIV tests in May of 2004 for an elective surgery I had. Quest Labs does not require appointments. You just walk in sign in and the wait is pretty fast as long as it isn't flu season or something like that. I just had to show up and sit with all the other people (not many that day, only about 4) and wait my turn to be called. I had been to this particular lab before to get my labs done before my surgeries for the Discovery documentary we did in May of 2004.

You can see what happens for the Preliminary HLA- A, B, C Typing (Class I Antigens) blood withdrawal below. Nothing different than a blood specimen standard withdrawal. But you only give about 10cc of blood.


the alcohol swab	initial injection hurt a wee bit	now I am fine

finishing up the draw	applying pressure	packaging the test tube

All finished and ready to ship!

Thursday, July 7, 2005 10:40 AM - Fed-Ex Picked Up My Blood Specimen
First and foremost, if you cannot send it that day, DO NOT REFRIGERATE YOUR SPECIMEN! My car had to go to the shop right after I had my blood drawn so here I am with this Fed-Ex envelope and no Fed-Ex store. So I see a (an??) FE truck at the stoplight and thought seriously about going up to him but the light turned green. My friend, who was driving us back home, didn't have time to get me to a FE store. So, I went home to make a FE account online. I made an appt for them to come pick it up the next morn and gave them instructions that it was a bone marrow typing specimen.

The next morning like clockwork, here comes Fed-Ex. The FE lady was super cool and so very nice. How cool is that when people are enthusiastic about what you're doing. So much that they consider doing it themselves. It gives me more faith in humanity. Presently.

I started working on the BMDSN website more over the weekend and while looking up some info I see that the specimens should not be refrigerated. In big, huge, honking letters! OMG! What have I done!??? I start Googling left and right and sure enough it is everywhere. DO NOT REFRIGERATE SPECIMEN, KEEP SPECIMEN AT AMBIENT TEMPERATURE. Now I've done it. So, I stress all day about it.

Saturday, July 9th, 2005
So, I am flipping out about the refrigerated specimen bit, right? So I go to call the NMDP to ask them a question. No answer, surprise! Instead of leaving voice mail I decide to email them through their website email form this time since I never got a call back about the clear stuff in the vial the last time I called. You would think the person who handles the questions for the main website would know this general answer. I highly doubt I am the only person who has ever refrigerated their sample before. Instead I get Donor Cruella. Although I truly think it is a Cruell-O because this certainly must be a guy. Females are more mouthy and long-winded. Guys are blunt and to the point, no fiddle faddle in their emails. If you want to read the email exchange between this person and I, feel free, but if you want to spare the drama then skip it. The run down is that I simply asked, via email, if the sample could be ruined because I refrigerated it. They tell me to call my donor recruitment center, I got upset, went off on this person for being so dang lazy and uninformed and then they got even more snarky with me and told me basically if I failed to call them to find out it was my problem, I wrote back to thank them for their extraordinary effort (sarcasm). So I probably overreacted. Who cares, it was a cumulative effect that I even went off the deep end.

I don't call because I am fed up and I know I will just get an answering machine anyway. I am bummed about the refrigeration of the specimen, the email exchange, the extraordinary difficulty in even trying to get on the registry in the first place. I spend the weekend doing what I do best--working.

Monday, July 11, 2005 - 2:51 PM
I can't take it anymore, so call *my* donor recruitment center to find out. OMG I got the saint lady again, I need to find out her name. She is like Mother Teresa for Marrow Donors. Always nice, always pleasant, can turn my day around with a bat of an eyelash. Totally erased all ill feelings I had about the NMDP. I will call her Donor Teresa from now on.

Anyway, Donor Teresa said that the sample was already on its way to the lab and she will call me to let me know if there is a problem. She said what they test for, the samples are pretty tough, so she said not to worry. This is all I wanted to know, I adore this woman. Donor Cruella (DC for short), on the other hand, should take lessons from this wonderful human being. May DC have a month of bad hair days.

The Waiting Game...
NOW! I just wait to be called if, and when, they find me a primary matched recipient. That is, of course, barring my sample was not ruined. I am told it takes about 24 hours after my information is entered into the computer if there is a recipient in the present system with my initial antigen match. If a match is found I then become what is called a "potential match."

If I am upgraded to being a potential match for someone, then I do another typing test called an HLA DR, DQ Typing (Class II Antigens). This is a more expensive test for which the donor does not have to pay. The recipient's insurance pays for it. I honestly don't even know how much it is but I heard it is costly. I will find out though.

The Class II Antigen test is to further determine if you are a match to the possible recipient. It requires 2 vials 10cc of whole blood in yellow top ACD tube. Basically two of what I did before.

Donating your marrow isn't like donating blood. You know, how O blood can be accepted by A. B or O patients. It's not like that one bit, you need 6 matches out of 6 if you are unrelated, 4-5 if you are related but they really don't like to go ahead with a low match because of the Graft vs. Host disease, and other complications, unless it is absolutely dire. I have been told the chance of a perfect match is 1 out of about 20,000 so the odds are not in the favor of the greater good.

Tuesday, July 19, 2005 - 1:50 AM
I can't believe it has already been 8 days. 5 of those days my car was in the shop, fun. I went to LA over the weekend and didn't think about bone marrow donation (BMD) too much. I think I only mentioned something about it 15 times over the course of 3 days instead of the usual 115 times.

Whenever will they call? At last to tell me I am in the system and my sample wasn't ruined. I will call in one week to make sure.

Thursday, July 28, 2005 - 11:38 AM
I called the NMDP in Phoenix (my recruitment facility) which of course, there was no answer. I left a message on a man named Oscar's voice mail, which I probably will not receive a response once again. I just asked if my sample was fine and I was indeed in the system. That's all I want to know.

Friday, July 29, 2005 - 7:00 PM
Still no return call.

Monday, August 8, 2005
Still no return call but I was sent a receipt for the $65. HLA typing fee from the NMDP so I assume I am "in." I may call them tomorrow. I read a lot of children's leukemia memorial sites tonight. It absolutely breaks my heart that so many children have died before they are even old enough for school. :(

Tuesday, August 9, 2005
We launched the forum today! Bailey announced it on all the PS forums. There was a huge welcome!! I am so thrilled to be in the company of such great, giving people!!! So far 4 people have made the first step in becoming a living donor. WOO HOO!!!

And NO, Oscar has not returned my call. A few of the girls got the same treatment from their facilities, Annie is being tenacious as well, she will call again tomorrow. Mia went to a drive and got right in on the spot! Good for her!!

I guess since I eventually received my donor card I am definitely on the list. Now I guess I just wait...

In The Mean Time
I started donating platelets every month. I first gave plasma and then decided on platelets since I can do it more often, and they are needed more since they aren't any good after about 5 days. Also, those who are undergoing chemo/radiation, or have undergone a BM transplant need them so they don't bleed out. So I figured I'd share some of mine. Why not, right?