Merry Christmas!
Monday, December 24, 2012
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!
Merry Christmas!
Friday, December 7, 2012
Letters and Thankfulness
I'm currently on the west coast for some pharmacy conferences so I've been kind of out of reality for a few days and was surprised to see I had received a phone call from Lee. I listened to the voicemail and he had just wanted to check in because it has been about 30 days. He said he didn't have an update for me so my heart sank a little with disappointment but then he said he had a letter for me from my recipient! Obviously I called him back immediately and we chatted for a few minutes and he offered to email me a scanned copy of the letters (her husband wrote me one too!) and he's mailing the originals home so I can have them.
My recipient hand wrote me a letter and told me she had just gotten remarried and 24 days after she got married she was diagnosed with AML, which certainly changed their plans. Between the two of them they have 8 kids and 3 still live at home. She thanked me up and down and said that hopefully I'd meet them someday which absolutely thrilled me because I'd love nothing more but to be able to meet her and her family!
Then I read her husbands letter to me and I think I cried more through his letter because he told me what he had to watch his wife go through and that they couldn't find a donor. He said I was the only match in all of the US and Canada and if they couldn't find a match they were only going to do one more round of chemo and try some experimental medications. He told me that I saved his wife's life and I was their hero. This of course turned on the waterworks even more. I don't really feel like a hero, I really just feel honored to have been able to take part in this, but him telling me that means the world to me.
I've been really stressed out with trying to find a job after graduation and trying to figure out what I'm going to do and where I'll be within the next year and this just makes me realize how much more there is to life and what is truly important. I was able to spend Thanksgiving with my loved ones and will do the same in a few short weeks for Christmas and I couldn't be more thankful to be surrounded by people I love and by people that love me.
My recipient hand wrote me a letter and told me she had just gotten remarried and 24 days after she got married she was diagnosed with AML, which certainly changed their plans. Between the two of them they have 8 kids and 3 still live at home. She thanked me up and down and said that hopefully I'd meet them someday which absolutely thrilled me because I'd love nothing more but to be able to meet her and her family!
Then I read her husbands letter to me and I think I cried more through his letter because he told me what he had to watch his wife go through and that they couldn't find a donor. He said I was the only match in all of the US and Canada and if they couldn't find a match they were only going to do one more round of chemo and try some experimental medications. He told me that I saved his wife's life and I was their hero. This of course turned on the waterworks even more. I don't really feel like a hero, I really just feel honored to have been able to take part in this, but him telling me that means the world to me.
I've been really stressed out with trying to find a job after graduation and trying to figure out what I'm going to do and where I'll be within the next year and this just makes me realize how much more there is to life and what is truly important. I was able to spend Thanksgiving with my loved ones and will do the same in a few short weeks for Christmas and I couldn't be more thankful to be surrounded by people I love and by people that love me.
Thursday, November 29, 2012
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 :)
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 :)
Sunday, November 18, 2012
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 :)
The next 100 days are very critical to her recovery. Please pray for her :)
Friday, November 16, 2012
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.
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.
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!
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 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.
Thursday, November 15, 2012
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. :)
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!
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? :)
Wednesday, November 14, 2012
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!
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!
Tuesday, November 13, 2012
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!! :)
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!! :)
Day 2-3 Side-Effects
It's the morning of day 3 so I haven't gotten the third injection and I'm really uncomfortable. I was up a lot of the night tossing and turning. It hurts to sit still for too long. I have this dull but constant ache in my legs and lower back. I've had a super headache on and off too. I'm feeling a little nauseous but I can't tell if that's from the medicine or lack of sleep last night.
I have to drive home today which is about an hour and a half drive... Not too long but I really don't feel like moving, let alone packing up my car and driving.
This really makes me cherish my health. I know cancer patients sometimes receive filgrastim treatments so they go through this too and I'm sure this is nothing compared to chemotherapy. I can't even imagine. I wouldn't be strong enough to do that.
I have to drive home today which is about an hour and a half drive... Not too long but I really don't feel like moving, let alone packing up my car and driving.
This really makes me cherish my health. I know cancer patients sometimes receive filgrastim treatments so they go through this too and I'm sure this is nothing compared to chemotherapy. I can't even imagine. I wouldn't be strong enough to do that.
Monday, November 12, 2012
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!
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!
Sunday, November 11, 2012
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!
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!
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!
Wednesday, November 7, 2012
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.
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.
Friday, November 2, 2012
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?
Thursday, October 25, 2012
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!
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!
Sunday, October 14, 2012
1 hour information session
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.
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.
Friday, October 12, 2012
Becoming a donor
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...
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...
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