And so begins the final chapter in my peripheral blood stem cell donation saga. I know you all have been dying to hear the rest of the story. Well, actually, maybe you have been, but I just remember where we left off, which is terribly exciting.
As a reminder, it was about 10am, I was just starting a movie, but I desperately had to go to the bathroom. I've got to add a disclaimer before we begin: I'm just trying to describe my whole experience as accurately as possible, so I hope this isn't weird to read. Not that I think it's that bad, other wise I would definitely not be sharing this!
Anyway, I was warned before the whole process that I would likely have to use the bathroom, because who can hold it for 5 plus hours? All the nurses were very sweet and told me not to worry about it, because everyone has to go during the extraction. It really wouldn't have been so awkward, but you can't just get up and go into the handy private bathroom and be hooked to the machine at the same time. For one thing, the tubes aren't long enough, plus I couldn't move very easily on my own. It's amazing how much you use your arms (yes, I know, duh!) but I really take full movement for granted. I couldn't even scoot up in my bed without help. And they didn't want me to anyway, because it could cause too many problems.
So the solution to not being able to go the toilet, is to bring one to me! Yeah, you bet I was excited! It was just a little backless chair with a hole in it. It had a bucket attached to it for obvious reasons. I suppose to make it easier to clean, etc, they put another removable bucket over the other one, just under the seat. I wasn't too stressed about it, because I'd rather use the potty chair than wet the bed, plus, I learned to lighten up after giving birth twice. Of course I prefer modesty, but when it comes to medical situations, you just go with it. I had been reclined in bed for over 2 hours, and without the use of my right arm, it was a slow process to turn and scoot off the left side of the bed. And I had to be careful to keep my right arm straight the whole time too. I felt very clumsy as I tried to pull down my sweat pants, since I could only use my left arm...seriously, try it sometime, not easy. But I finally got it, and was all set.
I think sometimes I just don't worry enough about certain things. I didn't think this would be a big deal at all, in spite of the fact that I have naturally low blood pressure, and some of my blood was currently circulating through a machine, rather than flowing through my body. Perhaps you can see where this is going. Almost as soon as I sat down, I started feeling light-headed. I knew immediately, having vast experience with this feeling, that I was headed for a blackout. So the two nurses came right back over to support me. (They were trying to give me a tiny bit of privacy by moving to the other side of the room.) I had to put my head between my knees, as best I could, but despite my best efforts, I did blackout for a second. If you have never passed out, it's a sensation that's pretty unique. I could tell that I was literally only out for a split-second, but it's exhausting. Well, when you don't have enough blood flow to your head, I guess that's a logical side effect. They put a pillow on my lap, and I just remember trying to keep my head down, but supported with the pillow, without smothering myself. And I was yawning uncontrollably.
At this point the nurses just wanted me to pee and get back in bed! I know it's silly as a grown woman, but I still have a bit of stage-fright when it comes to using the bathroom around other people, and then when you add trying not to fall on my head, it was hard to relax! I had to just force something out of my bladder, anything, to relieve the urge to go so I could get through the rest of the morning without going through that again. The whole experience was pretty frantic, and I had at least 4 nurses in there at one point. The sad thing was that I couldn't even wipe myself since I was so woozy and and flushed and tingly. I get really hot when I pass out, and actually sometimes that's the cause. So they took my socks off, at my request, and ended up taking my sweat pants off when I was getting back into bed to keep me cool. I had to get in bed and be laying down before I could be modest and pull my pants back up, but what are you going to do? The head nurse took off my sweat pants, and told me I could just leave my "uh...shorts on." I would have laughed if there was someone else there to share the joke.
I was told I looked horribly pale, no surprise, and they reclined my head even more in bed. Once I was laying down, I felt much better, but my hands were very tingly. That's a side effect that the calcium alleviates, so I got another push. This time I was either so flushed to begin with that I didn't notice, or I got it a lot slower, because I didn't have any more hot flashes. I got to eat some crushed ice and that was really refreshing. For the rest of the time, I had a blood pressure cuff on my ankle to monitor my condition. It didn't take long for me to feel better, but it took a while for my pressure to go up. My blood pressure is usually around 115 over 90, but it was 93 over something (can't remember!) right after I got back into bed. It eventually went up to 135 over something else...and then normalized by the time I was finished.
I'm happy to report that the rest of day was fairly uneventful. After the delays with pressure in my return line and that whole bathroom incident, my end time was pushed back a bit. I should have been able to walk out of the hospital at 1:30, but that's when the cycle was completely finished. At 10:30, when things settled down, I was able to watch the almost 3 of the 4 hours of the movie I brought. It was a really fun movie and it really helped pass the time.
I have to admit that I was counting the minutes for the last hour or so. Not because I was bored or anything like that, but the fact that I had a short bathroom experience previously made me anxious to relieve myself! Also, my right arm was getting kind of achy. I'm sure some of it had to do with the fact that it was straight for five and a half hours, but obviously a lot had to do with having a large needle in my elbow.
When 1:30pm finally rolled around, and the machine stopped, the first thing to do was remove the needle. Yea! But I still had to wait for the blood to finish it's course through the machine and return in my left arm before I could be all unhooked. Now I know the bone aches are uncomfortable and sometimes painful, but that was nothing to the pain I experienced when I had to bend my right arm to stem the flow of blood when the needle was removed! I know it sounds crazy, but my arm was so stiff that I couldn't move it on my own, and the nurse had to do it for me...ouchy! Once the blood flow had slowed down enough, she wrapped it up, and that arm was done.
But I still had to go to the bathroom too, and worse than before. But there was no way I was trying the chair again...disaster. It took probably 5 or 10 more minutes for all my blood to return to my body and for the nurse to heat seal the return line so it could be cut. While that was wrapping up, they took a few more vials of blood to test again to make sure I was ok to leave. After that was done, the nurse let me go to the bathroom with the return line still dangling from my arm so I wouldn't have to wait any longer than necessary.
The other pain that ranks in the top two worst of the whole experience was when the nurse took the plastic tape off my arm that was right over the return line. It was a really sticky plastic sheet that kept everything in place, not that hardly-sticky medical tape. Because I was able to move my left arm a little bit, the return line had to be completely secure so it wouldn't come out. Pulling that off hurt worse than getting stuck with the needles. I'm actually surprised that those things hurt the most because they were secondary to the actual procedure. I got that arm wrapped up and I was all done!
Even with my stiff arm, I was able to put my pants and shoes and socks all by myself. I felt like such a big girl! I ordered lunch right before I was finished, so it arrived while I was waiting for Jon-Michael to show up to take me home. I also had to wait for the results of my most recent blood tests.
Ok, now for the cool part. Pictures! I actually don't have that many since I couldn't take them myself. The nurse was really sweet to take them, but I didn't want to make her take fifty of them like I would have. So this is a close up of the machine that separated my blood. The red bag on the right contains my stem cells. The next one contains some of my plasma, which the patient also needs. I'm not sure why, but I don't know all the medical details! The clear bag with the blue writing contained a saline drip that was included in my return line. I'm not sure what the other bag is, but I'd be willing to bet it contained the anticoagulant that kept my blood from clotting. You can see from all the tubing that my blood had to travel pretty far to get from one arm to the other. I'm seriously amazed at the medical technology that allows such a crazy thing like this to happen.
And here is another charming picture of me in bed. It was close to 1:30 when all these pictures were taken, and I had some awesome bed head. It didn't help that I had cold washcloths on my forehead and neck for a while to cool me off after I passed out because my hair dried all funny. I guess it's good that how I look doesn't affect the stem cells! The bottom portion of the machine is where the blood spins around and is separated. I think that would have been cool to look at, but it was obviously all closed up.
Patty came back and met me to pick up the stem cells and plasma because she was on a deadline! She ran an ice-filled cooler containing the bags down to a special courier who sent them on their way. She told me that I would go home, take a nap, eat a good dinner, and have a good nights sleep. And I did! And by Tuesday morning, I felt great. I was still a tiny bit tired, but that's how I feel every morning. :) My elbow was, and still is a bit stiff, but much, much better than Monday afternoon. I just can't hyper-extend my right arm, but it's getting better all the time. I have a bit of bruising in my right elbow, and at my two blown veins. You can tell where the needle was inside my arm, because I have a bruise following my vein about an inch and half up my arm. Before I left the hospital, my red cell count was the same as when I was admitted, and my platelet level was a little low, but that was completely normal. So really I'd say I'm completely recovered.
Patty called me yesterday and again today to make sure I was feeling ok, and to give me some updates. The cells arrived at their destination, which is good! She told me that I could get an update on my patient as soon as 30 to 45 days, but more likely 45 days. Sometimes, though, it's hard to get updates on international patients, so I could potentially be waiting for months. It's really out of our control, but hopefully I'll hear sooner rather than later.
At this point, I've done all I can do. And I hope it's enough. But if not, I hope my patient's family can feel the same peace mine has experienced. I feel like this has really come full circle for me, and it's a real blessing. It's so hard when you feel like there is nothing you can do for someone you love, and this is the best thing I think I can do for someone else in that situation. My sister told me that the family is probably so grateful to me, and I know it seems silly, but I didn't even think of that. Honestly, I'm just as grateful that I've been able to serve someone else. I testify that the words of the Savior in Matthew 16:25 are true. "For whosoever will save his life shall lose it: and whosoever will lose his life for my sake shall find it." Not that I've given up anything that I will ever miss. My health and life expectancy will not ever be affected by this experience, but my spirit forever will. The opportunity to serve gives us the chance to understand how much love our Savior has for us. My love for this man that I will probably never meet is such that I don't even know how to express it. I can't help but cry as I type this because I don't know how else to express my emotions. I'm so grateful to have had this opportunity, and still wish I could do more. Though the physical experience wasn't necessarily pleasant, the spiritual experience is overwhelming. I would do this again and again and again, purely for selfish reasons! I feel so blessed, and it has been so rewarding to work with such wonderful people in the Colorado Marrow Donor Program and everyone else at the Rocky Mountain Cancer Center and Presbyterian/St Luke Hospital. I'm a bit sad that this is over, but still full of gratitude to share this, hopefully, life-saving part of myself with someone else.
Thank you to all of you who have read this. It makes me feel so good to know that you have enjoyed the journey with me. I love reading your comments, and though I don't deserve all your praise, it does make me feel really good! The thing that makes this so much more rewarding is to hear that someone else has joined the registry. Really, besides documenting this experience for myself, I hope that I can inspire another to be willing to possibly save someone else's life. I promise it will be one of the best decisions you will ever make.
Wednesday, November 3, 2010
And so begins the final chapter in my peripheral blood stem cell donation saga. I know you all have been dying to hear the rest of the story. Well, actually, maybe you have been, but I just remember where we left off, which is terribly exciting.
Tuesday, November 2, 2010
I'm already anticipating that this will be a forever long post, because the last few days have been nearly novel-length, and they were just about my injections! Wow, it's crazy for me to think that this is really all over. But we'll get to all of that later, let's rewind back to yesterday morning.
I had to be at the hospital at 6:45am to get the whole process started. That meant that the rest of my family had to be ready to leave with me at 6:25am because I was getting dropped off at the hospital. I could have gone all by myself, but I knew this would be a bit tough on my body, so I thought it was best to be driven home. Jon-Michael and I got up and got ready, and got Caleb ready-poor kid was pretty tired, but excited to go to the before school program, so that got him going. Bryce spent the night at my parents house. Built in babysitter, plus he didn't have to get up early.
I met Patty, the CMDP director, in the hospital lobby and we went up to the infusion center of P/SL. It was the same place I had been getting all of my injections, plus, it was just down the hall from where my father-in-law spent his last few months.
The infusion center is basically a bunch of curtained rooms, and two private rooms with beds for stem cell extraction. Apparently, most of the extractions done there are by patients donating to themselves. Obviously, only in certain circumstances is that feasible, but I found that very interesting. Cases like mine are less frequent, maybe once a month. I got settled in my private room, which had a tv and dvd player, a private bathroom, a bed, and a bunch of machines.
I got settled in and things got started right away. I had to sign a few more consent forms, answer more questions about how I was feeling, and get my final set of filgrastim injections. But by then, the effects were last thing on my mind. By the time I started feeling the anticipated irritation in my stomach, my blood was already moving out of my body.
The first thing my nurse did, after the other stuff, was check out my veins to determine where blood would come out and go back in. My best looking vein is in my right arm. I already knew that, but I was hoping they could figure out a way to use my left arm, since I'm right handed. Oh well. So the return line needed to be somewhere in my left arm and they did that first. My nurse started with a vein just above my left wrist. It wasn't meant to be, because my vein immediately blew. I knew that wasn't going to kill me, but the nurse seemed a bit stressed about it, mostly because she had to pull the needle out right away, and stop the bleeding, and she couldn't reach everything she needed. Fortunately another nurse came in and was able to help out. So she tried one in my hand. Same result. As I mentioned in a previous post, I'm prone to fainting. It's kind of embarrassing, but I think a lot of it is mental. So I'm sitting here, listening to my nurse be frustrated that she blew two of my veins, after two exceptionally painful sticks, and by some miracle, I'm able to remain calm, and more importantly, conscious. (I don't watch them stick me, because yuck!) But after that, I can look at it. It was actually interesting to see everything that was being done, once the needle parts were over.
I didn't really know what it meant when she said she "blew the vein," so I asked! Beware, if you get queasy...although I'm sure I've already made you sick if that's the case! Apparently, it's when the needle tears the vein instead of just poking in it. The thought makes me shudder, and I've still got small bruises as reminders. Since it was turning out to be difficult to stick me, the supervisor came in and did the return line in my elbow. It was significantly less painful, and she said, "That went in like butter!" Kind of an icky visual as it regards a needle going in my body, but I can see why she said that, being on the receiving end. I had to get a bunch of vials of blood taken from there to check various levels in my blood, and for some other things I don't know about...but there were 7 or 8 of them. Then I had to get the big important extraction needle in my right arm. The first nurse did that one, and it went in just fine, thank goodness. Once everything was placed and taped down, they turned on the machine. 8am on the dot.
I learned that I personally have approximately 4,749 ml of blood in my body. (Calculated based on my height and weight.) Since I'm not an expert in metric, I had to look at it in familiar terms. That's about two and a half two liter bottles, like pop bottles. Does that seem like a lot of blood, or not very much? Can't decide...weird to think about though. The nurses were great about explaining things. They don't get healthy donors in there very often, and the sick ones apparently aren't as interested in the whole process. I told them I have been blogging about it, so I think they were being extra helpful. My nurse told me that my entire supply of blood would have to be cycled through the machine 4 times. Apparently the machine isn't 100% efficient, so it would take more than once through the machine to glean all the peripheral blood stem cells needed from my blood.
Somewhere between all the needles and the explaining, I got to order breakfast. I've heard the breakfast burritos are good...it's true! And I got some fruit and milk. Things were running really smoothly, and my nurse was making various adjustments to the machine as it got going, so I was happy to just watch and answer questions while I waited for my breakfast. Another interesting tid bit is that white blood cells are actually white! After extracting my blood the machine spins it to separate it. The red cells are the heaviest, then the white, then platelets and plasma. I think. Maybe the last two are reversed. (Haha...it was still too early for me when the nurse told me all of this!) Anyway, the stem cells are in with the white cells, so that is what is routed to the collection bag. The rest is routed back into my body. You could see that in the collection bag...it was white (yellowish) liquid! The nurse told me that they take some of the red cells too, just to make sure they are getting the entire level of white and stem cells. So the end product looked all red.
At 8:30 or so, another nurse came in to give me a calcium push (a syringe injected into my return line). They give patients calcium to offset the effects of a drug donors are given during the extraction to prevent clotting. I was watching her and she would push a little into my return line, and then let my blood pressure fill it with blood and then she would push more in, and then let some blood back into the syringe, and so forth. I didn't question what she was doing, because I figured there was some purpose to that, besides, I suddenly felt very hot. It was like a hot flash, and I could feel it all the way down in my feet. It was the most bizarre feeling, because it came on so quickly. As she was injecting the calcium, she said she lets it dilute quite a bit with my blood because if you do it too fast, the patient start getting hot flashes! Well, I knew exactly what she was talking about! It went away after a minute or so, and I was fine. Then she set up a calcium drip in my return line for the remainder of the procedure.
Well, that calcium drip started a whole new round of problems. Besides separating my blood, the machine monitors the pressure and speed that the blood leaves and returns to my body. After the calcium drip was set up, the pressure in my return line was too high. I don't know how or why that happened, and apparently neither did the nurses! Apparently, medicine is as much an art form as it is a science. So removed the calcium drip. While nurses were switching dials and adjusting the return line in my arm and all sorts of other things I didn't really understand, my breakfast arrived. Since we couldn't risk it getting cold and my "usable" left arm was being worked on, I got spoon fed my breakfast. It's really quite funny. The nurse who did that was really sweet and we managed to not spill a single drop on me, in spite of my reclined position.
The only way to stop the high pressure in my return line was to turn down the speed on the machine. That was a potential problem, because if I didn't have a high enough amount of stem cells, it would take too long to get them all out of my body. We were on a deadline to get the stem cells out the door and on airplane to where ever my patient was. One of the tubes of blood that was taken earlier was to check the amount of stem cells in my blood. The nurses decided to wait for that result and see if my levels were high enough. If not, they would have to find another vein to put the return line. You can imagine how thrilled I was. But the nurses were equally concerned because my other two good options were not options anymore. They decided they would try higher up on my wrist vein (which was still tender a couple inches up the vein from the initial stick) if they needed to move the return line. Fortunately, the results came back and I had a good saturation of stem cells in my blood, so they could leave the machine at a slightly lower level and not stick me again!
It was 9:30am or so by the time everything slowed back down. I was left to relax, or watch tv or whatever I wanted at that point. I brought the BBC America version of Emma which was 4 hours long. It was the perfect time to watch it! I had a nurse put it in for me, and then she left to attend to other things. Unfortunately, after the lengthy previews were over, the dvd just stayed at the main menu! And I didn't have a remote for the dvd player! I didn't want to be obnoxious and yell, and I didn't think that warranted pushing the "call nurse" button, so I just laid there and watch the main menu screen. Unfortunately, it wasn't that interesting, but it has charming music. By the time the nurse finally came back in around 10 am, I had to go the bathroom, so we decided to do that first, and then start the movie.
As that experience was an adventure in and of itself, and this is so long that no one has probably read to this point anyway, I'll continue the story tomorrow. But if the bathroom experience doesn't make you want to keep reading, or if I haven't made everyone ill with my descriptions, I'll have a couple more pictures tomorrow! (And I have to save something interesting for tomorrow because most of the rest of the time I was just watching the movie...which is awesome, by the way!) Until then, thanks so much for reading my blog. I'm glad I can share this amazing experience with you.
Monday, November 1, 2010
I'm pretty tired today, which seems funny because I've literally been in bed all day long. So I'm going to give you all the details tomorrow. But here's a picture so you can get an idea of what it was like for me! I was nearly finished when this picture was taken, so I'm definitely not looking my best. You can see the return line there in my left arm, but my right arm, where the blood was drawn, is covered up. That is the machine I was hooked up to. As I said, I'm feeling tired and my arm where the blood was drawn (which had to remain straight for 5 and a half hours) is a bit stiff, other than that, I feel pretty good! And it was a success!