Update #2 - 3 Years Post-Donation

Now is as good a time as any to make a second update on my blog since some very exciting changes have happened since my first update.

This past fall (I believe in September or around there, maybe a little later) I received a call from the Rhode Island Blood Center saying that they had some news for me, could I please give them a call back. So at the first chance I got, I called back. The news they gave me was wonderful - my recipient had signed paperwork requesting that we exchange contact information!

Considering that I had been warned not to be too hopeful of this exact thing happening it was music to my ears to hear that my recipient was the one to initiate the process of undoing the anonymity between us.

I filled out my half of the forms, scanned them, and e-mailed them in to RIBC. Then waited, and waited, and waited some more. It was quite the waiting game, these things have always seemed to take some time. Finally on March 7, 2013 my recipient's information arrived in my inbox. Where it sat until 2 nights ago.

Let me elaborate: it isn't that I didn't want to e-mail my recipient, because I did. The struggle I had was what to say. How do you start an e-mail to someone who you do not know, yet, feel so closely connected to?

I didn't have an answer to that. So my e-mailed waited. Then, two nights ago, after getting home from work, I couldn't sleep. My mind kept cycling through things I could say to my recipient. Since I didn't know what to say I was thinking of all the things I could tell my recipient that would tell him about me as a person. An e-mail began to form so I got out of bed, sat at my laptop, wrote it and clicked the send button. Initially I thought I would just get up, type my thoughts out, save it as a draft and then re-visit it later. But instead, it just felt right to click send

. Yesterday I received a response, two as a matter of fact (one from my recipient and one from their spouse). My heart is so filled with joy and excitement. I am hopeful that we will remain in touch and become friends.

I will continue to keep you updated.

Update

Doreen from RIBC called me today with news on my recipient, the blood center finally got the update we'd been waiting on...

My recipient is alive and doing well! Doreen said that they receive very coded responses when they get updates from other donor centers but what she could tell me is that his recovery is going well and that it is unlikely he is completely back to pre-transplant activities. She said that it is often a long recovery period and that it isn't uncommon for recipients to need plenty of time to resume normal activity levels.

I want to write him a letter, but it is so hard to begin. What do you say to someone when you can't reveal too much personal information? Doreen suggested I use lots of open-ended questions but even trying that makes it hard to write a cohesive letter. I guess I just need to sit down and concentrate solely on the letter (no distractions).

6 Months Post-Donation & Why I Decided to Register

It is hard to believe that it has been 6 months since my PBSC donation in Rhode Island. I am still attempting to get an update from the Rhode Island Blood Center, so far no luck. RIBC is still waiting to hear back from my recipient's donor center.

Now on to some reflecting - why did I chose to register with the National Marrow Donor Program. It is a question I've been asked more than once, "Why did you register?" To be honest, I'm not 100% sure myself. I don't have a family member or friend that I registered in honor of. No one close to me has had to battle blood cancer. I just knew that it was something I wanted to do.

I'm not trying to make myself seem like a saint, I'm far from it, but I have always been a selfless person. It is one of my best qualities and also, at times, one of my worst. People sometimes take advantage of how much I want to help others and put them before myself, but I wouldn't change how I am because of a few rotten apples. I always tell my Mother that I'd rather have too big of a heart than too small of one.

So when the Nursing Club at my university sponsored a registry drive I took advantage and signed up. All they asked for was some basic contact information and 3 Q-tip swabs from the inside of your cheek. Piece of cake. I crossed my fingers and hoped that someday I would be a match for someone on the waiting list. I never realized that less than 3 years down the road I'd be donating.

When it comes down to it, I guess the reason I registered with NMDP is simple: I'm young, I'm healthy, and I want to help people. You get one life and I am bound and determined to make sure I do everything in my power to not squander the gifts I have been given. To share what I have and make a difference. That is why I registered to become a bone marrow donor.


For more information on how to register to become a bone marrow donor and the NMDP click here.

4 Months Post-Donation

It has been four months since I went to Rhode Island to donate and there has been a lot going on so I thought it would be good to update everyone on the happenings.

One month post-transplant my recipient was out of the hospital and doing well. I was told that he had to remain near his transplant center for a while so that he could go to daily appointments but that he would likely be able to go home again soon. I haven't heard anymore, partly due to my own lack of correspondence which I plan on remedying after I finish this blog.

The same week I found out my recipient was doing well I graduated from college magna cum laude on my Nana's 66th birthday. It was an amazing day.

A week later my Nan collapsed after a doctor's appointment, banging her head as she fell and had to be admitted to the hospital for a week. The doctors (heart doctor & lung doctor) refused to listen to anything we told them and instead played the blame game with one another. We had to fight with the hospital to get them to send my Nan home with oxygen (her blood oxygen levels were in the 70%s, it only needs to be under 88% in order for home oxygen). We hoped that the oxygen would help, and it did, but there was still something wrong and every doctor we saw didn't care. Her regular doctor told her she couldn't ask questions "because she was scheduled for a 15 minute appointment and she'd used 13 minutes already" (not verbatum but this is actually what a medical doctor told a woman who had just been in the hospital for a week).

On July 24th my heart was broken forever when my Mom found my Nan dead in her home. I was the last person to see my Nan alive (Friday the 23rd). I am very grateful for the time I spent with her that day but I am also struggling with my own guilt. Even though I know it is illogical I keep asking myself "What did I miss? What could I have done? Did I not see something I should have?" There is an emptiness in my heart I fear will never leave. My Nan was like a second mother to me. She helped my mother raise me and losing her has shaken my world. I wake up every morning and go to bed every night sad at the loss of such an amazing person and mad at medicine for failing her.

I am going to end this post now as I am getting myself quite upset. Once I hear back from Doreen I will update again.

Pictures

Reflections

It has now been a few days since I arrived home from Rhode Island and I have been working on settling back in to school, my job, and my personal responsibilities. Tuesday was a bit rough around the edges for me, I was very sad to be leaving and it showed. Even after I arrived back at my apartment I was blubbering a bit. Everything just seemed so overwhelming.

Now I am back into the grind of school Tuesdays and Thursdays, work almost every day, and everything else I have to do. The past few days have given me a lot of time to reflect on the experience I have been fortunate enough to have and I thought I should post some of those thoughts on here.

Doreen thanked me for "making them look good" at the Rhode Island Blood Center, but I can honestly say that the only thing I have done is raise awareness of how amazing the staff is there. They make themselves look good, and, if anyone is given the option of donating in Rhode Island, take it. You won't be disappointed. The people at the blood center weren't only the people handling my donation, but they became my friends as well. I can't thank them enough for looking after me and making sure that I had the most positive, uplifting experience possible. I also have to give them credit for introducing me to Nick, who helped make my days a little less lonely and my apheresis more awesome by bringing cheesecake. Even though he likes to root for the Yankees when they are playing the Red Sox so we can have friendly competitions about who is going to win, I count him among my friends.

As for the after thoughts about the donation itself I feel very fortunate to have been given the opportunity to give someone another chance at life. Although the donor center argued with me on the matter, to me this has never been about me. Like I explained to my Mom, who at the beginning wasn't sure of the process, I am not the type of person who could wake up every morning and live with myself had I said no. I couldn't live with myself knowing I had the chance to help someone and simply chose not to because it might disrupt a week of my time or make me uncomfortable. Yes, at times I was in pain due to the filgrastim, but I reminded myself of the person I was doing it for. If I was in pain, I couldn't imagine how much he must be going through in order to get ready for his transplant. Filgrastim is nothing in comparison to chemo and radiation. Hearing Doreen tell my Mom that he would more than likely receive the cells I donated in less than 24 hours made everything that much more real for me. I have been asked for an update, so in 30 days I will hear from Doreen about how he is doing. I am genuinely hoping for good news, but I hope that my recipient as well as the blood center knows that I am here and will gladly, if need be, donate again as many times as necessary.

One of the most emotional aspects of this has been the response I have gotten from my family and friends. One woman from my home town posted on my wall this week that she had just mailed her swabs back to the registry, all because she heard what I was doing. Granted, it may only be one person, but that is one more person than before that is willing to help if they are called upon. To know that my experience has helped at least raise awareness for the Be the Match program is beyond words. I hope that others will take the time to register too, thinking about it now I would much rather have people thanking me by registering with the Be the Match donor program...

Day Six, Entry One

Today has been a bit chaotic. Up early again for round two of apheresis, thankfully no shots needed today. Got jabbed with needles again, found out my white blood cell count climbed to 35, even without more filgrastim. Since I had 15.5 liters of blood filtered yesterday I could only do 8.5 liters today so I was only hooked to the machine for 3 hours rather than 5.

Everything went smoothly, although my vein was fluttery today due to a valve. It was an interesting feeling, almost as if I had a bumblebee stuck under my skin trying to get out.

After they unhooked me I got to talk to Doreen and say goodbye to Jackie. Mom and I grabbed sandwiches from a little pizza shop and I started to get emotional. I'm not 100% sure why, but I've cried a few times today. I don't know if its leaving (I met so many amazing people that I didn't want to leave behind) or just being overtired and overwhelmed or what.

My Mom has dropped me off and I am back at my apartment, feeling kind of glum still. Its been a long week and I guess now that its back to "regular" its all catching up with me. I guess I just need to catch up on my sleep and take deep breaths, let things come one day at a time. In 30 days Doreen should get an update about my recipient and I have been asked to be hold how he's doing. I can only hope that its good news.