Update

I can't believe it's been just shy of a year since the last time I have posted!

Phyllis is doing wonderful and we talk regularly. I flew out to see her in June I think it was? Then I took a trip across country this past summer and made a stop along the way to see her. We live so far apart but we were lucky enough to have several opportunities to meet up. 

She has had some minor graft vs host type complications but from what I've been told, it's a fairly common thing. Yay for being healthy :)

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!

Leukemia Free!

I received a card from my recipient midway through last month. She wrote me to let me know that at her 6 month check up she was still leukemia free! Amazing news! She wrote the letter in mid July so I've come to learn that it takes about a month for it get from her all the way to me.

At this point, it's been almost 10 months since the donation and I get more and more excited knowing that come November, we will no longer need NMDP to correspond.

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 :)

Connections

My recipient had been on my mind all night Saturday night. I sometimes wonder why she weighs so heavily on me at times and then think that maybe it's because she's thinking of me too and our thoughts are connecting. Days will pass and life gets busy and the donation doesn't even cross my mind but then some days I can't think of anything else and I'm amazed all over again at how blessed I am to have been able to be part of such an awesome thing. I wonder about her often and I wish I knew how she was doing. I haven't received an update so I'm going to assume that no news is good news.

Do something amazing today :)

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!

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 #4

Well, today is day 4. Tomorrow is the big day and the last injection. I'm definitely more nervous than I thought I'd be and I'm looking forward to getting the filgrastim out of my system.

I'll be leaving soon for the hotel because we have to be at the hospital at 6:30am! Good thing the hospital is only a couple blocks away!

I took some Nyquil last night so I could get some sleep and it definitely helped. I think I was asleep before 11. Since I'm home, my mom came in and laid down with me and got a heating pad for me. I always want my mom when I feel icky so I was glad to be home. The heating pad was really helpful! I'm so lucky to have such an amazing mother. 

I woke up around 6am and took a Tylenol; my mom saw my light on and came in and rubbed my legs for me and I went back to sleep until 9 or so. I was awake until at least 11 or maybe even noon but I fell back to sleep for a good amount of the afternoon. I spent most of today in bed just because I could. I've been fairly achy on and off all day and still feeling kind of nauseous on and off too but thankfully no vomiting. My head hurts too. Pretty much all of the same side-effects as the last couple days. My mom was nice enough to bring me home some soup for dinner since I haven't really been eating much. 

Wish me luck and send lots of prayers my way and to the recipient!

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!! :)

Filgrastim Injection #2

Well, I've made it to day 2! I woke up today not feeling the greatest... my legs were really achy, a dull ache in my lower back and my throat felt a little sore/swollen. Sometimes when I'm really overtired my legs feel that same ache so I almost thought that was what it was. I took some Tylenol and took a nice long shower and felt much better afterwards.

I did my shot around noon and it wasn't that bad. I'm actually kind of happy I'm doing it myself so I don't have to drive anywhere to get it done. A little pain at today's injection site and still a bit from yesterdays... almost like a bruise but that is to be expected.

I started to get some busy work done and was able to finish it but then I started playing some mindless games on my phone and instantly fell asleep on the couch. I actually slept most of the afternoon away... probably a good 2 hours or so.




Tomorrow is another day!

Filgrastim Injection #1

I just gave myself the first injection. I was really nervous but it wasn't that bad. I injected 2mL of filgrastim, which was a 600 micrograms dose. Luckily you can inject up to 2mL subcutaneously so I only had to do one injection. Those receiving a greater volume of the medication may get an injection in more than one site.

I inserted the needle and started pushing the medication slowly. The slow injection was the key for decreased injection pain. Your body can only absorb so much fluid in a short amount of time so by giving it a little extra time, it makes it a bit less painful.

The area was a little sore and it radiated around the injection sight for a little while but it's fine now and it's 9pm and I'm still doing well. No side effects yet! I'm still going to continue taking Tylenol regularly in hopes that it will help with what's to come.

Until tomorrow!

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!