What Does It Mean to Live?

Phyllis and I met 2 years ago this month! Can you believe it?! She is doing well and she just got back from a trip to Hawaii with her family. Traveling and spending time with the ones you care about most are what I envisioned for her back before I knew her. When I first learned I was going to donate, my hope was that by me donating, someone would have a second chance at life. And when I think about life and living, that's what I dream about... traveling, exploring the world while being with the ones I hold nearest and dearest to me. Everyone has different ideas of living, but when it comes down to it, we are all human and we all want the same thing - love.

You often hear people ask, if you found out you only had X number of days to live, what would you do? So what would you do? Make the most of today and of every day. Put down your phones and live in the moment. Be present. You'll never remember the best day of technology you ever had but you'll make memories that will last a lifetime and when you're taking your last breath, you'll know that you truly lived.

Happy Friday!

Donor/Recipient Meeting!

I can't believe I haven't updated since 2013!

It is now April of 2014 and I have some wonderful news! Phyllis and her family planned a trip to the East coast and I was lucky enough to be able to meet up with her and her family members this past week. It was, by far, one of the greatest days in my entire life. My recipient is one of the most beautiful people, inside and out, that I have ever known and I was and am still at a loss for words. We got to spend a couple hours together but the time flew by. When it was time for us to go, I instantly felt like part of me was leaving. It hasn't even been a week since we met and I've already decided to start planning a trip to where she lives :)

Phyllis

Well, the one year mark from the donation came and went. I sent Lee my info out right away but considering the lag between NMDP and such, I assumed I wouldn't hear much for a while. To my surprise, within a couple days I received an email directly from my recipient! Her name is Phyllis and she lives almost completely on the other side of the country. We have been emailing back and forth since then and it has been such an awesome experience. I look forward to hearing from her and always smile when I see an email from her pop up in my inbox.

She's doing well and I've even gotten to speak with some of her family members too. She's an amazing woman and I so look forward to getting to meet her and her family and finally give her the hug I've been holding onto for her for over a year now. 

I cannot believe how much things have changed in over a year. I looked back at some of my older posts and was reminded to keep counting my blessings. 

Almost 1 Year Since the Donation!

Throughout this past year, my recipient and I have been able to correspond through letters that pass through NMDP to ensure anonymity. I have received letters from her husband, sister, mother, and son and I get so excited when I hear from her and her family. I just received a couple of letters last week that had been written back in September (there's about a month lag with sending it through NMDP and all).

But now, in exactly 10 days, it will have been 1 year since the donation and we will be allowed to release our contact information and correspond without going through NMDP. I've been counting down the days for a long time but since November started, I've been unable to contain my excitement!

Almost there!

Hello all,

No news lately but I'd assume that all is going well. I realized yesterday that we are midway through July which means we're 8 months in and only 4 more until the 1 year mark!

I hope everyone is enjoying their summer and getting some time to relax!

More Letters!

A couple days ago, I received an email from Lee with a letter attached from my recipients sister. It was such a beautiful letter... she told me how beautiful her sister is, inside and out and how her sister is such an amazing person full of love, laughter, generosity and strength - pretty much exactly how I pictured her.

It warms my heart when I hear from them. :)

Wonderful News!

A little over a week ago I received a letter from my recipient saying that she's doing really well. She was released from the transplant facility before day 100 and actually could have gone home sooner than she did but her family was sick so they didn't want to risk it. She also said she was looking forward to meeting me and being able to hug me and thank me in person.

As everyone can imagine, I was so excited to get this letter - it truly means the world to me and I'm eagerly counting down until the 1 year mark in November :)

Precious Time

Time has so quickly escaped me. I've been experiencing my own personal struggles lately and have let the stress of life grab ahold of me and bring me down.

Unfortunately, I do not have any more updates on my recipient, but I did realize that it has been more than 100 days since the donation and those were the most critical days. I hope everything is going well for her and her family. I will post an update as soon as I get one.

Engrafted Stem Cells!

I received a phone call on Friday with some news about my recipient. The stem cells have engrafted so she's making my blood cells now! She is doing well and was discharged from the hospital which is great news!

Merry Christmas!

2 Weeks Post Donation

Well, it's been 2 weeks since the donation took place. The area where the line was is still healing... I have a massive bruise in the groin/thigh area and a tiny little scabbed area where they inserted it. I rested up for a couple days then got busy and was on my feet a lot and I noticed some new bruising and swelling so I had to try to stay off my feet and ice the area for a day or two. It's looking much better now though. It's pretty much the coolest looking bruise ever and I wish I could show it off just for fun, but it's probably not socially acceptable to say to someone "hey, wanna see my cool bruise?" then whip off my pants to show them ;)

Anyway, I haven't heard any word from or about the recipient. I guess I am a little disappointed to have not heard anything yet but hopefully I will soon!

Lee will probably give me a call within the next couple of weeks and maybe have an update for me about her and how she is doing. Until then, I hope everyone had a lovely Thanksgiving and aren't stressing out too much this Christmas season... keeping in mind the real meaning behind Christmas :)

Prayers For Her

Well, I'm not sure which day the recipient was meant to receive the transplant, but by this time she has definitely received it!

The next 100 days are very critical to her recovery. Please pray for her :)

Donation Day Details

We got there at 6:30am after not sleeping at all the night before. They took vitals and had me sign some consent forms. They drew some blood to check all of my baseline levels and we had to wait for the results to come back before I could get the last filgrastim injection. In the mean time, the vascular surgeon came in and started to prep me to get the line put in. The process was quick and they used lidocaine to numb the area. They did the entire procedure right at the bedside. It caused a bit of discomfort but it wasn't anything major. There were 2 tubes connected to the line so the entire process was done through that... no needles in my arms all day! That was really nice! Otherwise I wouldn't have been able to move my arms around at all.

My handsome honey being manly carrying my bag 

The blood work came back and I was able to give myself the last filgrastim shot at 8am. Yes, I asked to give myself the shot because I've mastered it over the last 4 days making it completely painless. Per the NMDP, I had to wait 1 hour after the filgrastim injection for the process to begin so that was finally started at 9am. During the process, they want to make sure your blood isn't clotting through the tubes while it's being sent through to the apheresis machine so they use an anticoagulant to avoid that. The anticoagulant they use decreases calcium levels in the body so they give you a calcium drip. Symptoms of decreased calcium include tingling of the lips, possibly fingers, nose or other extremities. Probably 10 minutes in I started to feel my lips tingle a bit so they increased the calcium drip until the tingling subsided.

We were exhausted!

The entire day was just a lot of waiting. I think around noon the lab took a sample of what had been collected so far to see how the sample was looking. They said it was looking good so I hopefully wouldn't have to continue with the collection tomorrow because they were worried about that. One of the nurses told me that my CD34 cells were really high which was a good thing so that was promising. I reeeeeally didn't want to spend the night in the hospital with that line stuck in me all night!  

The apheresis machine

Around 3pm the collection ended and they took samples of the stem cells to send to the lab. From then I had to wait to see if they had gotten what they needed, and if they did, I had to wait 2 hours for the line to be removed. I found out that they got almost twice the number of CD34 cells that they needed so the countdown to 5pm was on! I couldn't wait to get that line out! They took the line out at 5 and the nurse had to put pressure on it for 30 minutes. The nurse literally sat at my bedside and put pressure on my groin area for a half hour... we had a fun conversation lol. The protocol at the hospital was to treat the vein as an artery; since they weren't stitching it shut, that meant the 30 minutes of pressure, and after that I had to leave a 5lb sandbag on the area for an hour. It stopped bleeding almost right away but I had to wait anyway. An hour and a half after the line was removed I was able to get up and walk around and they wanted to make sure the clot held while I moved around. They patched it up with some gauze and tape and by 7pm they wheeled me downstairs while my lovely boyfriend got the car and we were able to go home. The second the nurses walked in at that 1 hour mark for the sandbag I started taking the sandbag off and the gauze and popped right up out of bed because I was so eager to leave (and also go to the bathroom!)

Lee checked in with me a few times during the collection to see how I was doing. He was there for me through the entire thing and everyone involved was absolutely wonderful! The stem cells were being flown out with the curriur this morning (Friday). Hopefully once she receives the transplant he'll let me know and keep me up to date so then I can keep the blog up to date!

Yesterday was certainly a very long day! But I feel awesome today! The side-effects have been gone since Wednesday evening (day 4 of the filgrastim) so that was certainly really helpful so I wasn't aching all day during the collection. I honestly feel completely back to myself aside from the slight pain and tenderness from where the line was.

My cells!

I sent this picture to a friend of mine and she replied: "amazing to think there's someones future in that bag." That really made me think. This could save someones life. We forget how delicate and precious our lives are until we fear we might not have another day. I'm so honored to have been given the opportunity to do this... and how easy it was for me to do it. Sure, it took time out of my life, but it was worth it and I'd do it again in a heart beat.

Donation Day!

The day is going well. We arrived around 6:30am and they drew some blood to check my white counts. I gave myself the last injection around 8am and then we had to wait an hour before the collection could start. They put a line in my femoral vein and the process was kind of uncomfortable. The doctor used lidocaine to numb the area and they did it right in my hospital bed. I was totally fine with everything until I started to feel blood trickle down my leg and I started to get a little light headed. I don't do blood well. It feels like a weird pressure in my groin area but it's nice to be able to move both arms. 

The side-effects are completely gone and I'm so thankful for that because it would make sitting here even more uncomfortable. 

We are hoping they get a full collection today so I don't have to stay until tomorrow and it should be ending around 3:30pm. The line has to stay in for 2 more hours after the collection and then once they remove it I have to wait around for another couple of hours to be monitored but then I can go home hopefully. :)

6 am

It's 10 minutes to 6 and neither of us slept much. I'd say we both got maybe an hour or so. My honey stayed up with me and kept me company because I was so anxious. He found a vending machine and brought me back my choice of snacks when I was hungry earlier :)

I have to say the aches are hardly noticeable and haven't been since last night so that's certainly a nice change!

Anyway, the next update will probably be from the hospital!

So Close!

Well it's 2am and I haven't slept at all, nor has my boyfriend because he's been awake with me. He gets an A+ for being awesome. I slept a lot earlier today so maybe that's why I'm not sleepy. I'm really nervous so he's stayed up talking to me and helping to calm me down. I'm oddly hungry to the point where it hurts so the boyfriend went downstairs to find some crackers or something. How awesome is he? :)

Filgrastim Injection #3

I went to the doctor today to get a blood test done to make sure everything is going okay. I've been getting really bad headaches and Lee wanted me to get checked out. I assumed it was just a side-effect of the filgrastim and was reluctant to go to the doctor but she told me to come in and get blood work done so I did and everything was fine. I've noticed that I feel worse at night and in the mornings; once I'm awake and moving around I feel a lot better.

Side-effects include: headache, achy legs and lower back, some back and neck pain, slight nausea at times but no vomiting.

More than half way there!! :)

Changes

The injections were supposed to start yesterday, but for an unknown reason, it was requested that the donation be moved to Thursday so the injections will begin today.

The outpatient infusion clinic I was supposed to go to for the injections is closed today and all of the VNAs kept bailing out, therefore, I will be giving myself the injections. Lucky for me I've been trained to give flu shots, I work with needles when making IVs and I've also had a lot of practice giving subq injections to other people. The filgrastim is a subcutaneous injection which is basically the fat layer of your skin; it's directly below the dermis and epidermis so the needle is pretty small. I am a little nervous because I've never given myself an injection before so we will see how it goes... I'm kind of eager to just get it done and over with. I'm thinking I'll start taking some tylenol beforehand to try to avoid some of the aching side-effects I'm expecting to experience.

I'll be back later to update!

One More Week!

The donation is exactly one week away from today!

It really hit me yesterday because Lee mentioned that he'd be mailing the injections which will start on Saturday and then he emailed me a hotel confirmation number for Tuesday evening. I live about an hour away from the hospital that the donation is taking place at so we'll stay over at a hotel near the hospital so we won't have to get up so early on the morning of.

I sent my recipient a letter in the mail Monday but it has to go through Lee first. He'll get the letter and make sure it doesn't contain any identifying information and then he'll pass it on to her, wherever she is.

I've been thinking about her a lot and thinking about what she's going through as she begins preparation for the transplant. All that I know is that she'll be receiving chemo and/or radiation to basically destroy her immune system so her body can accept my stem cells without rejecting them. The NMDP website has information on what the patient will experience in preparation of receiving the transplant which can be found here: http://marrow.org/Patient/Transplant_Process/The_Preparative_Regimen.aspx

I know I've previously talked about my mother working in an oncology office and spoke of the many patients, that turned into friends, that lost their battle with cancer. When I think about my recipient, I picture her being every single one of those people I once knew. I picture them all getting the second chance at life that they all deserved and the thought warms my heart. I hope I make them proud.

More Tests

The donation is less than 2 weeks away! I've been so busy that I've completely lost track of time and haven't had much time to think about it.

When I went for my physical, they forgot to do a urinalysis so I had to go to a local lab and get a urine test done. I got an email from Lee today telling me he'd clear me for the donation. They also needed to do another pregnancy test just to be sure. 

Lee said I could send a letter to the recipient as long as there were no identifying factors in it. I started the letter a couple weeks ago but haven't gotten very far. I'm really not quite sure what to say to someone I've never met and know nothing about. I mean, what do you say?

Let's get physical!

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!