Friday was the big day! Well, one of the big days.
I went to the hospital to have the physical done. I got there and got to meet the doctor and she talked to me a little bit about the process. She asked me a lot of questions pertaining to my health and she took a thorough health history. After all of the questions, they drew more blood. They took 9 tubes, 2 of those tubes were going to be sent out and stored for that one consent form that I signed allowing them to do so. They told me that the recipients get so much more blood drawn though... something like 12 tubes. Crazy. I think this was a repeat infectious disease test because they wanted to make sure I didn't contract anything since I had the test done before.
The doctor looked at my veins briefly and then had the apheresis nurse, who would be putting the needles in, take a look as well and they both seemed to think that a line in the femoral vein would be best because I have such small veins. This isn't something I'm really crazy about doing but it will probably be better. On the day of the donation, I'll receive my last shot of filgrastim in the morning, then they have to wait an hour before doing the donation after the injection so between the shot and the wait, a vascular surgeon will insert the line. Like I said, I'm really not crazy about the idea, but it is what it is. At least with this, I won't have needles in my arms.
After the blood was drawn, I got an EKG. It took longer to put the leads on than to do the actual EKG itself so the girl that was putting the leads on chatted with me for a while. I'm guessing she knew I was a donor when she looked at my chart so she started talking about it and said how awesome it was. I can't remember how it came up, but she didn't know that I don't actually know the recipient so when she found this out she thought it was the greatest thing. She kept thanking me for what I was doing and the doctor thanked me as well. I wasn't quite sure how to respond because I'm not doing it to get recognition or thank yous, I'm doing it so this woman can have another chance at life... another chance at having a family, a chance to reconcile relationships, a chance at doing something she always wanted to do but never did... like traveling or learning another language. I'm doing it because it's the right thing to do and it's something that I hope someone else would be willing to do for me if I needed it. It was hard to know what to say to that.
Anyway, after the EKG, I went and received a chest x-ray. That didn't take very long either. I was supposed to go and see where I'd be doing the donation but it was already so late in the day by the time I had finished with everything so I didn't get to see it. I figure that I'll be spending a good 6-8 hours there in a few weeks so I'll get a really good look at it then. :p
Once the day was coming to a close, I received a phone call from Lee. He was checking on me to see how the day had gone and how everything else was going. I have to say that they have been so awesome at the NMDP and they have been there every step of the way.
Before I end this tonight, I'm curious how other donors have responded to these thanks and what their reasons for signing up to be a donor were/are. Please share your experiences and responses, I'd really love to hear them!
Lee and I had the 1 hour information session over the phone this past Wednesday. I think we ended up talking for about an hour and 20 minutes. What took the longest was we went through all of the consent forms and he explained to me what each form meant. These were the forms that asked for my permission to be part of this and that study so Lee went thoroughly through them with me to make sure I was still okay with signing them.
He started off with asking me if I had any questions. I did have a couple so that took a little extra time. One concern of mine was how I'd go to the bathroom during the donation because I was told you had to lay pretty still the entire time so I was afraid I'd have to get catheterized. Luckily, that's not the case. What I learned is that we really only have to keep one arm fairly still. I believe the arm that is receiving the blood back after it has been sent through the machine can be moved around a bit. So I'll get a bed pan or commode lol... much better than being cathed though.
We started talking about the recipient; there isn't much information he's allowed to tell me. All that I know is she's a 45 year old female with acute myelogenous leukemia and she lives within the United States.
I'll be going for the physical on Friday, October 19th. The physical will probably take 2-3 hours because of all the different places I'll have to go. I'll get an EKG, a urinalysis, a chest xray, a health history will be taken and so on and so fourth. About a week after, Lee should be notified if I've been cleared to continue on with the donation.
Since the donation will take place on November 14th, my recipient will begin preparation on November 5th. She'll receive chemo and/or radiation and she will be admitted to the hospital the day before the donation. They are severely weakening her immune system and preparing her to receive my stem cells. Although I have the option to back out at any time, they do request that I try to make my decision before she begins preparation; if not, her immune system will be so weakened from the meds that she'll have major complications or won't be able to recover. For some people this might be an issue and I'm sure that would create more guilt than anyone could handle if they backed out when it was too late for their recipient, so if you're teetering with the idea of going through with this, make sure you're sure. For me, there was never any question.
5 days before the donation, I'll begin receiving an injection of a medication called filgrastim (Neupogen®). This medication stimulates white blood cell production. They said I'd probably experience some bone pain and fatigue. They will arrange for a visiting nurse to come to me and do the injection each day. The last day will also be the donation day, so when I go in, I'll receive the last injection before they start the process. I was told to avoid any aspirin products for the bone pain because this will thin my blood while filgrastim may cause thrombocytopenia which is a decrease in platelets. When platelets are decreased, this causes a slower rate of blood clotting so you'd be more likely to have bleeding occur. Adding aspirin into this mix would not help the cause, thus it's important to use nonaspirin products.
On donation day, I'll likely have to show up around 7am. I'll be there for 4-6 hours and I'll produce a bag of stem cells and the bag will be hand-delivered to the patient at her location. She'll receive the stem cells the way a blood transfusion would occur. The first 100 days are the most critical for her recovery. Lee said that when I get my first update, hopefully it will be around 30 days after the transplant, I shouldn't be surprised if I find out she has some sort of infection which would be a result of the immunosuppressants. In an ideal world, what they would like to see is that in the first 3-5 weeks her biopsy results show that she's producing 100% of my blood cells. Although it's not usually 100%, they want to see a huge percentage of my blood cells that are being produced and a much lower number of her own.
Lee will begin checking in on me either on the day of the donation or the day after and track my recovery. He'll check in again around day 7 and until I'm back to feeling like myself again. Then around 1 month he will contact me and hopefully he'll have an update for me. After that I won't hear from him again for about 6 months, then 1 year. For the first year, I will only be allowed anonymous contact with my recipient and after 1 year, the NMDP steps aside and will allow us to disclose however much or little information we would like with one another. I know that I would be beyond thrilled to be able to meet my recipient and hear about her progress. I do hope that she'll feel the same way. I hope that the stem cells will take and she will be able to continue on with her life and live in good health and happiness.
I've spent a lot of time thinking about this 45 year old woman that I know nothing about. I wonder about how she's feeling, what she's going through, if she has kids and how old they are. Who is taking care of her? Siblings? Parents? Children? I wonder what she looks like, what hardships she's faced in her life and I wonder about her faith. In my experience, being around people that are at the end of their life or are battling a life threatening illness, they are often able to find God or find comfort in religion. When she receives the stem cells, will she realize what an amazing gift she's been given from God? This certainly isn't my doing. God created me and God created her, and He made us similar... similar enough that my cells are like hers and hers are like mine so she could receive this donation. There is nothing heroic or special about what I'm going to do; this is an act of love and an act of God. I just feel so blessed that God has chosen me and is using me to work in someone elses life and for this, I'm grateful. My goal in life is to live for Jesus and exalt Him in all that I do. God is giving me the opportunity to do that.
About 1 year ago, the National Marrow Donor Program (NMDP) visited my school; I had class or something for the few hours that they were there doing cheek swabs so I missed them while they were physically on campus. I decided I should participate and found their website online and requested a kit to be sent in the mail. I swabbed my cheek with 5 (I think?) q-tip type things and sent it back in. I received a letter back thanking me for my samples and just started to receive emails with updates and current news from the site itself.
In all honesty, I had no idea anything like this existed. Sure they have blood drives all over to donate blood, but I had never seen this before and it sparked my interest. I've been around cancer all of my life. My mother is a nurse and worked in an oncology office for many years. Throughout those years, I went into work with her and spent time with her patients while they received chemo. Even as a young girl, I built relationships with these people who did eventually lose their battle to cancer, but that doesn't mean the war has been lost. These special people remain close to my heart and their memory lives on. My step father is currently battling thyroid cancer, my grandmother beat breast and skin cancer, my own mother had a close call with a calcification found in her breast that eventually might have progressed into cancer, and my step grandmother died of multiple types of cancer as a result of many years of smoking. So in this war where we feel so helpless, what can we do as individuals to help?
On September 7, 2012 I got an email... "You've been identified as a possible marrow match for a 45-year-old female in need of a transplant. Please call me immediately..."
I honestly thought it was spam at first... some sort of scam or something and they'd get me to call them and try to steal my identity or something. I called and it was the NMDP and I got really excited when I found out that it was legitimate. After speaking to a lady at the program, we discussed whether or not I was still interested in donating and what would happen next if I was. She mailed a kit to a lab nearby to further test if I was the best match and if I had any infectious diseases.
From the second I found out I was a possible match, I knew in my heart that I was going to be chosen as the best match. Some may call this wishful thinking/hoping, intuition, whatever you may have it, but me? I call it divine intervention. I knew it was going to be me.
As a current 6th year pharmacy student, I've been spending this year completing my clinical requirements and am no longer sitting in a classroom. One of my clinical rotations was at a hospital nearby so I opted to get my blood work drawn there so I could do it on my lunch break. The kit consisted of 8 tubes that needed to be filled (about 60 mL of blood). I went in to get the blood drawn and it took two people to do it -- one held all of the tubes and handed them off to the other that was filling the tubes up with blood. Around tube 6 I started to get really light-headed and pale. I remember another lady coming over to make sure I didn't pass out. Looking back it was actually quite comical. I'm fairly petite so that was a lot of blood for me! (a reason I've never donated blood.) Normally, when you donate blood, they take ~450 mL (1 pint) so this was nothing in comparison. But nonetheless, the 3rd lady kept making me talk to her and asking me questions to make sure I stayed awake. They gave me some water and a lollipop and I was fine after 5-10 minutes; I think I scared them a little though.
Since I was working at that hospital for my current rotation, I later ran into the one lady that drew my blood that morning; she was a small, middle aged Indian woman with a thick accent so I had to really listen to understand her. She was such a sweetheart... she tilted my chin upwards toward her and said she wanted to look at me and make sure I was doing better. Then she told me that I was doing something great and could really help someone and that it might hurt and be a painful process, but it's all part of helping others. That really meant a lot to me.
At this point, I still hadn't been informed of my being the best match and I had no idea how long it would take for them to get the lab results back.
I think it was September 24th or 25th, so about 2.5 weeks later, I received a phone call from the NMDP. I believe it went something like this:
"Hi, this is Lee from the NMDP. You recently had blood work done to determine whether or not you might be a good match for this recipient. (short pause) Well, you're a match" (side note: Lee is the work-up specialist who is my main contact right now and will be following up with me through the course of this amazing opportunity I've been so blessed with.)
I was completely overcome with joy! He asked if I was still interested in donating and we talked a little bit about what would happen. He told me that the doctors would prefer a peripheral blood stem cell donation if that was okay with me and he explained what that consisted of. A link was emailed to me with information from the NMDP's website and he sent me a huge stack of consent forms that I received from the FedEx man 2 days later.
There were 4-5 forms that I had to sign giving consent to this and that. A lot of them were studies that I had consented to be part of so it gave permission to allow them to call me after the donation and for X amount of years later they will continue to contact me with survey questions. The studies aren't mandatory but I want to do whatever I can to help and if that includes being a statistic that could give scientists some insight, I'm all for it. Most of the studies are just surveys but one study will take 2 tubes of my blood and freeze it indefinitely to do whatever with... I just asked Lee that tiny humans not be made from my DNA and all will be right with the world. :)
I mailed the consent forms in and Lee and I worked out a date for a physical to be conducted to evaluate my health and if I am healthy enough to donate. We also determined the day the donation will take place. He gave me a list of hospitals that were closest to me and I was able to pick the hospital I wanted to go to. Lee scheduled the physical for me and sent me all of the paperwork that needed to be completed before my appointment. The physical has to be completed at the hospital in which the donation will be taking place so the doctor in charge of my case can be the one to evaluate me. One week from today (Friday October 19th) I'll be going for the physical and by the grace of God, I'm a healthy young woman and I pray I will be able to continue on with the donation that is set for November 14th. I have to admit that I'm pretty excited for the physical next week because that means I'll be one step closer to the donation date and Lee said they would probably show me around and show me where everything will be happening on the day of the donation.
We then scheduled a time for a 1-hour long information session which everyone has to do. In my next entry I'll include all of the information that Lee and I talked about during the information session.
Before I wrap this up, I just want everyone to know that throughout many of these phone and email conversations, I was and have still been given the option to opt out of this. I was in no way forced to do this or forced to continue to do this. I was not pressured or guilted into this either. The recipient is still unaware that this is happening; all she knows is that there is a possible match for her. She won't find out until a few days before the donation takes place that she's even having the transplant as to not get anyone's hopes up and then have them find out the donation can't happen because I opted out or failed the physical.
I guess that's enough for one night. Until next time...
