Lindsay's transplant story.
Some of you may not know or may not remember that I donated for a stem cell transplant back in 2002. I wrote up the experience in another location (I didn't get on LJ till 2003), but I never posted them here. So I copied them out below to have in this location.
I don't think about it too much at this point, but a few weeks ago I got an invitation in the mail from City of Hope (where I did the transplant), for an Open House "Honoring our loyal Blood Donors, Platelet Donors and Marrow Donors for their commitment and dedication". The even includes a light meal, live jazz, and "the honoring of our dedicated donors". I don't know if I like the honoring part so I'm deciding whether or not to go. It's not that I'm affraid of getting up in front of people - I'm not. Hell, I used to compete in oratory contests, perform musically, and even occasionally do some emceeing. It's just that I feel weird being honored for doing something that I think anyone would have done. Yeah, sure, I had a few shitty days. Big fucking deal. The woman I donated to got to live an extra YEAR in exchange for that. I hope to god that no one I'm friends with wouldn't be willing to go through that in order for the chance to save someone's life.
Please, if you aren't on the National Marrow Donor Program registry already, sign up. http://www.marrow.org. Please. I beg you.
The day I found out I was a match - originally posted elsewhere 8/13/2002
Last February I signed up to be part of the National Bone Marrow Donor Registry, and I was contacted on July 1st by someone at City of Hope who told me I was identified as a possible match for a 50-year-old woman with Non-Hodgkin's Lymphoma (NHL). I went in for secondary testing (Confirmatory Testing) about a week later. First they made me fill out some paperwork with consents to draw blood and test it for infectious diseases and the like. They gave me some more reading material to look over detailing the possible outcomes and what they were screening for (DNA markers in a nutshell), and informing me I could decline to donate at any time even if I proved a match. They told me there was less than a 10% chance that I would be a successful match for the patient, and that they would let me know the outcome sometime within three months.
Well, yesterday they called me and told me I’m a match! Not only am I a match, the woman told me that I was “the very best donor they could have asked for”!! The woman said her doctor probably gave her a pretty grim picture of finding a close enough match, so the fact that I registered not long ago is rather amazing. The patient (I’m not allowed at this point to know anything about her other than her age and condition, which I’ve already stated) is doing well, but since NHL is a very aggressive form of cancer they want to proceed quickly.
There are two ways to donate the stem cells that my patient needs. One is by harvesting my bone marrow through a surgical procedure, in which I would either be given an epidural or a general anesthetic and then a large needle would be insert several times into my pelvic bone to extract the marrow. The other is by doing a peripheral stem cell donation, where I would be given daily injections of a growth factor called Philgrasten (Neupogen) to increase the stem cell supply in my blood, and then over the course of about eight hours I would have blood removed from one arm to pass through a machine called a cell separator where (obviously) the stem cells would be removed, and the remaining blood will pass back into my body through my other arm. The patient’s doctor has determined that the patient would most benefit from the peripheral stem cell collection, so that’s what I’ll be doing.
The next step is to go in for a full physical exam at City of Hope, and have an EKG, chest x-rays, and full blood work up. I’ll also attend an information session with one of the donation counselors, and I’ll sign the Intent to Donate form. Once I sign the form, the patient gets told that a donor has been found and has agreed to the procedure, and she prepares for the stem cell transplant. She’ll be given a course of chemotherapy in preparation to prepare her body for my cells. At this point we’re looking at six weeks from now until I donate - so probably the end of September or early October.
So, now that the technical part is now out of the way, how do I feel about all of this? Somewhat excited, somewhat nervous. The injections of Neupogen will apparently give me flu-like symptoms for the week preceding the donation, and I’m not all that thrilled about the prospect. I’m thankful I wasn’t asked to do the bone marrow donation because that seems like a much more invasive procedure, and to be honest I was pretty uncomfortable with the possibility of an epidural. A needle into my spine? Unh unh.
I suppose I feel sort of proud, too. It’s great to know that there is something I can do to help someone in need. And something so simple, at that! Have someone give me shots, feel a little under the weather for a week, and sit in a chair for eight hours while my blood is cycled through a machine? I can do that! The only possible downside I can see is that it means I’ll need to take a few days off of work for all this to happen. I’m contacting the Human Resources department to ask about the possibility of getting additional sick days of to take care of this. After all, if I’m doing something to help someone else I don’t feel that I should be penalized. Even if they say no (cross your fingers that won’t happen!), I’ve talked to the Dean of the School I work at and made preliminary arrangements to work out some sort of deal so that the time off wouldn’t be counted against me.
Moving along - 8/13/2002
Wow. When City of Hope decides to move ahead with something, they go full steam ahead!
I just got a call from Narissa, the woman who will be my coordinator (bizarre name, no?). I'm going to go in for the physical tomorrow morning. First I'll meet with Narissa who will explain what's going to go on that day, then I'll meet with a Nurse Practitioner who will do the bulk of the lab work. Following that I'm going to meet with a physician who will talk over the lab results with me, and let me ask any questions I have regarding the procedure itself. Then back for a meeting with Narissa to discuss the procedure and give me a chance to ask questions about the non-medical aspects of everything. And then I'm free to go on my merry way.
8/15/2002
So. Meeting with the donor coordinator - done. Blood tests - done. Physical - done. Chest x-ray - done. EKG - done. Medical history - taken. Family’s medical history - taken. Meeting with the nurse practitioner (and her student nurse, who just so happened to be the daughter of one of the hospital physicians) - done. Meeting with the physician in charge of giving the all clear - done. Signing of the release to go ahead with the transplant - done. I had a busy day yesterday.
I got to City of Hope pretty early in the morning, and let me say right off that everyone there was so nice and accommodating. I got the feeling that some of the people had completely moved around their schedule for my benefit, and were glad to do so. I got to the donor center and met with Narisa, who it appears as though I’ll be speaking with frequently for the next year or so (there’s a lot of follow-up after the procedure because it’s still technically in the investigational stages), and from there it was sort of a whirlwind. Here are some of my general impressions of my experiences - the good, the bad, and the ugly.
First, you’d think that with all the advances in modern medicine someone could have come up with a more dignified way of providing a urine sample. (Now, I know this may seem like TMI, but you’ve all done it before and I’m sure you’ll all do it again.) I mean, the specimen cup is clear for cripes sake! It’s like an open invitation for passersby to draw conclusions about the state of your waste excretion system. Yeah, the part where I had to bring out my cup from the tiny little restroom to the front of the hematology lab, where there were five or six lab techs just standing around staring at my sample? Not my favorite. On my way out Narisa let me in on the fact that every now and then someone will bring out a brown sample or some other color, and all the nurses then talk about it. One word: eeeeewwwwww.
Having never had an EKG before, I had no idea what to expect. What I certainly didn’t expect, though, was a bunch of little strips, which stuck to my skin perfectly, and lifted away with no residue when the test was completed. Random, I know. The test was fine - my heart is about as healthy as it comes. The chest x-ray did indicate I have a small heart (think of all the jokes that could be made right about now), but there’s no reason to think that that should ever be significance. My lungs on the other hand, are large. Hah. 11 years playing a wind instrument, baby. :o)
I won’t get into the details of the PBSC procedure as it was explained to me at this point for two reasons. First, anyone who’s interested can find out plenty at http://www.marrow.org/ , and I’ll probably end up giving some updates as it gets closer to the collection, itself. However, there was one thing that stuck in my head as being completely fascinating. Whatever I am allergic to now, my patient might become allergic to after the transplant. Imagine living your entire life without having hay fever, and suddenly you walk outside one day and can’t stop sneezing. Poor woman.
This afternoon I got a call from Narisa, and we set the days for my collection: October 2 & 3.
8/21/2002
When I found out that I was being brought in for secondary testing for the bone marrow donation, I asked a lady I work with (R), who went through the same testing, what her experience was. R had been tested about a year ago, but she was not a good enough match to go through with the donation. When I found out that I was a match for my recipient, I told R, who was thrilled.
She was so excited she in turn called the woman (K) who set up the registry drive at one of the other consortium schools. K lost a sister to Leukemia, and ever since then has set up a drive each year with City of Hope in the hopes that she would be somehow able to help some other patient in need. Several times over the years people from the consortium drive have been called in for secondary testing, but a viable match has never been made… until me. So when K found out I was going ahead with the donation she called me in tears and wanted to know all about everything. She told me how her sister had been suffering with Leukemia and had been trying to find a suitable donor for quite a while when suddenly they found a match. But the prospective donor refused to go ahead with the procedure (Ack! Evil, horrible man!! If you aren’t willing to donate, don’t go on the registry and give people hope. Schmuck. I hope he comes back in another life as an ant and that K gets to squash his measly little form into a squishy mess. Hmph.), and K’s sister died a short time later. After K and I got off the phone she called the president of the University she works in to thank him for letting her run the drive all these years, and to tell him all the work had finally paid off with a match. The president was apparently immensely gratified, and called their school’s PR department, who in turn called the LA Times, and spoke with a reporter who seemed interested, and said he would follow up with me. The PR department called the president, the president called K, and K called me to tell me she had given them my contact information and I should expect a call shortly.
So. As it stands now there may or may not be a story written. And the fact is that even if there were to be a story my name wouldn’t be used (The National Marrow Donor Program insists on anonymity between donor and recipient for at least one year, and I suppose they think that the recipient might read the story, thus breaking the anonymity.). But it’d be great to save a clipping and know that it was me they were talking about. :)
8/30/2002
As of a couple of days ago I still hadn’t heard anything back from the Human Resources people about my request for additional leave to do the transplant procedure. So I finally got fed up with not hearing anything and I called B in the HR office for an update. She told me that she had taken my request to the senior staff for a decision, and they said no.
First she gave me some c0ck and bull story about how they’d had similar requests before, and the answer has always been no. She said that she remembers something similar being requested at least three times since she’s been here (though she did admit those instances were not of the same magnitude), and that all have been refused. She said one option I could use would be to take our Voluntary Disability Insurance for the two days the collection will be done, and possibly the other five days I’ll be getting the Filgrastim, if I wanted to stay home for those also. And in a nutshell, she sent me on my merry way.
I went home and reviewed the material they gave me about the VDI. The conditions of getting that aren’t even ones that I can take - I won’t be hospitalized for the Filgrastim shots, and I would still be capable of working, so those days aren’t applicable. And the collection days aren’t acceptable either because I won’t be in the hospital overnight, or something along those lines (can’t remember at the very moment). So basically, the information they gave me was useless. My only options are to take the days off as either sick days or vacation days.
Excuse me while I vent for a while…
WT?!? How hard would it be to do something as simple as donating two sick days to help save a woman’s life? She says it’s been asked before? So in her ten years memory, even if three people requested the same thing (which I highly doubt) that means a whopping six days of sick time donated over ten years. Big frigging deal. This university talks a great game about wanting their employees and students to contribute to the community, but when it comes down to the wire they aren’t willing to do anything to facilitate that happening. Sure, they give us a generous sick leave policy, but everyone knows that’s because they pay us far below what we should be getting for the amount and quality of work we do. If this is the way they are, well then, fine. I’ll remember this when deciding whether to say here or look for employment elsewhere.
When I told R (the woman I work with who was called in for secondary testing, but wasn’t an acceptable match), she was outraged. She offered to give me one of her own sick days in exchange. And G (another lady I work with) also offered me a sick day. Heck, she offered me as many as I want - she has something like 110 saved up. While I appreciate their offers, I wouldn’t take their days from them. They earned them and they should be the ones to benefit from them. And it’s not as though I need the days, either - I have enough so that I can take off the whole week if I needed to. It’s even more unnerving knowing that this company give free days and half-days at seeming their seeming whim, but when asked to do so for a good and valid reason they refuse. It’s the principle of the fact that this company doesn’t value their employees’ actions. They don’t care that I have little respect for this company as a result of their decision. And they apparently don’t care that they are doing nothing within their power to assist in the (hopefully) life-saving treatment of a very sick woman. Well, I believe in kharma. I wouldn’t be surprised in the future if they needed someone’s help and were unable to get it. Schmucks.
9/18/2002
Well, this morning is the first act to gear up for the donation. Narissa, my coordinator is driving out to my work to draw a couple of vials of blood. I know they're running another pregancy serum test and another round of infections diseases screenings, but I don't know what the rest is for. Presumably just to make sure nothing has changed with my blood since the last time they tested me. Well, if nothing else I know for absolute certain that I'm in great health!
I am thinking about writing a note to my recipient to be given to her on the day of her transplant. (We can exchange annonymous notes and cards and whatnot, as long as we refrain from any identifying information.) Actually, I'm not truly deciding - I decided long ago I wanted to write something. But now I'm having some trouble figuring out what to say.
"Dear recipient, I hope you are feeling well and your proceedure goes smoothly. Bye."
Ummm, no. It's difficult to try to write to someone and have no idea what type of person they are or how they will take something I write. And for that matter, I don't even know that this woman speaks English.
9/29/2002
Well, I had the first shot of Filgrastim yesterday. Ugh.
Thankfully my reactions appear to be perfectly normal, even if that still means I'm uncomfortable. Not horrible, but definitley not normal.
You know that feeling when you're just getting over the flu and your muscles feel like they've been worked hard and are achey? That's sort of how I'm feeling. The muscles in my thighs ache the most, closely floowed by by neck and shoulder muscles. And then there's the bone aches. I'm feeling bones I haven't felt in quite some time. My sternum, for example. I feel it acutely every time I take a deep breath in. And my hip bone isn't exactly un-noticeable, either.
Then there's the headache that I've had since yesterday. I wouldn't mind if that disappeared.
And I'd love to say that I could go to sleep and it would all go away, but sadly that's not the case. Insomnia is one of the side effects, and I wasn't able to sleep all that well last night.
Ah, well. Two shots down, and three more to go. I can do this.
10/01/2002
Add joint pain and a touch of nausea to the littany of symptoms I posted yesterday, and you have how I feel today.
10/05/2002
It's over, it's over, I'm done! WHOOOOO-HOOOOOOOO!!
Wednesday
We (my mom came also) got to City of Hope (COH) at 11:30, just like they asked, and I had Narissa paged. First thing on the list was yet another dose of the Filgrastim in each arm, and another CBC (Complete Blood Count, I'm fairly certain) to make sure my white cells were up where they needed to be. They needed to make sure my white counts were very elevated so that my body had been producing enough stem cells - the normal range is something like 4-10 (my baseline count was 8), and the goal was to get me above 34. When they tested me that morning I was hovering around 53. Yeah, I'd say those shots did the job well.
Then I was ordered to go eat and drink something. And I do mean ordered. We were given meal tickets and shown the way to the caffeteria. Narissa recommended that I drink something like a soda that would take longer to go through my system, but nothing with caffeine, which would constrict my blod vessels. Slight problem being that I still felt queasy. I looked through that entire caffeteria, and the only thing I felt that I could eat was a tuna melt and Sprite. That was utterly bizarre, since I'd never had one before in my entire life. Patty melts, yes, but never a tuna melt. It came with nothing on the side, and wasn't a particularly large sandwhich at all, but I was barely able to finish it.
We came back and I had to fill out a few papers stating I knew what I was doing, and it was voluntary, and I didn't expect to be compensated in any way for anything I was doing. Narissa explained to us why the proceedures are so strictly annonymous - apparently years back it wasn't so difficult to find out names, and a prospective donor found out that he was the only match for a hockey player (personnel?) living in LA. He contacted the player and introduced himself as the only chance he had for survival, and demanded a large payment before he would donate. And there was another situation where parents of a sick little girl harrassed the prospective donor by driving to his house and demanding he agree to donate.
Once the papers were signed I went in for the donation interview. Anyone who donated blood knows what I'm talking about. "Have you ever slept with a man who has slept with another man who has slept with someone who shares hypodermic needles and the like in a completely consequence free society where the spread of sexually transmitted diseases and other unmentionables is rampant?" Well, maybe that wasn't one of the exact questions, but you understand what I'm talking about.
Then it was time for one last trip to the loo before getting hooked up. Once I got on that machine I was going to be immobilized for at least four hours, so the trip to the loo was absolutely required. I walked back to the treatment room, and I was directed to my station. I had one of those very comfortable chairs to sit in, and Narissa and a nurse named Alma bustled around me setting things up and getting the machine ready. First there were more vital signs taken, and another CBC (I had two or three a day), and then they started looking for good veins to use. And looking, and looking, and looking.
The vein running through the crook of my left elbow would be fine for the removal, but they couldn't find a good vein in my right arm for the return. They settled on trying to use the semi-large one on the back of my right hand. They normally give lidocane (sp?) to numb the area of the needle insertion, but they said my left arm's vein was on the border of being too small and since sometimes the lidocane can constrict the vein they didn't want to take the chance and they would have to skip it. Then I saw the needle they were going to be inserting directly. Omigod. That thing was freaking HUGE! A good two inches long, and the width of, well, I don't know exactly what, but it looked monstrous from where I was sitting. So they prepped my right arm - alchohol, betadine, more betadine, gauze to soak up the extra betadine, and in went the needle. Ouch. The tubing was connected to the machine to start priming whatever it is that the machine did, and drip bags of saline and anti-coagulant were connected.
Then it was time to put the return needle into my right hand. This time I got lidocane, even though that vein was smaller than the other. The lidocane definitely did it's job - I could feel some pressure when the needle was inserted, but no pain. They connected the tubing to the needle site, but the blood wouldn't flow. They worked on that vein for a while. but nothing seemed to help - heating pads were applied to the insertion site to try and open up the vein more, but nothing happened, and then tried for a good twenty minutes to draw the small amount of blood they had though the tubing with a syringe, but finally they gave up on that, too. The vein had blown, and there was nothing that could be done. They decided to try and find another vein. The needle was removed, and I was bandaged up tightly where the puncture site had been. They finally settled on a vein running alongside my wrist, near my thumb. That one seemed to look alright after prepping it with some heat and pressure. More betadine, more lidocane, and another huge needle, and that arm was set up.
More later.
11/22/02
So, finally, both needles were in my arms, and I was ready to be hooked up to the machine. First of all, the machine is huge, and looks surprisingly old-fashioned. Kind of like the “computers” they used to show on old science fiction movies - big, boxy, and with lot of square buttons and moving wheels. The anti-coagulant bag was suspended from a bar across the top of the machine, alongside an empty bag for plasma and a bag for the stem cells. Narissa gave Alma a couple of last minute reminders, and she left, promising she’d be back in a while to check on me. Alma continued pressing various buttons on the machine for a few minutes, and finally took the tubes and hooked them up to the machine. I was to all intents and purposes completely immobilized - my arms were set out at certain angles, and I was sitting in a bucket-style chair that made moving without the help of my arms very difficult. Alma put a blanket over me, and then the clock started.
Way back when I’d gone to COH the first time for my health screen, I had asked Narissa if there was anything I could bring to keep me occupied during the four hours. She had told me that there were VCRs that could be used, and there was a selection of older and newer movies from which to choose from. Well, after everything seemed to be set up I asked Alma if I could turn on a movie I had brought with me, and she said she needed to see if the VCR was free. Wha? Turns out there is one, and only one VCR that can be used, and everyone who’s having any treatments in that area can see the movie by flipping to the station. Alma came and told me that someone had already turned a movie on for another patient, and she could turn on my movie after that one had ended. She asked if I wanted her to turn the movie on for me. I agreed, and she put a pair of earphones over my head and angled a TV down from its place on the wall to rest suspended in front of me. She turned it on, plugged the earphone jack into the outlet, wiggled the volume for a few seconds, asked if there was anything else I needed, had me take a couple of calcium citrate pills to counteract the side effects of the anti-coagulant (tingling in the extremities, especially the lips and fingers), and then she was off to look after another patient.
For the first, oh, three minutes or so it was pretty neat looking down and seeing my arms covered with tubing and seeing the wheels on the machine turning steadily next to me. Almost hypnotic in a way. Then the initial novelty of being a human pincushion wore off, and I looked around me at the other patients in the room. One older gentleman smiled at me from down the room - a friendly sort of welcome to the club, smile. Everyone was in his or her own world of tubing and machinery, and all were settled into their blanket cocoons.
I looked to the movie on the screen, and it took me a few minutes to realize I was watching the beginning of Braveheart. Once I figured that out my heart sank a bit. I was hoping for a movie where I’d be carried away - where the story would be so engulfing the time would pass swiftly. What I got was a movie I’d seen before and never particularly liked with plenty of battle scenes and gore, and the knowledge that it was a long movie. A *long* movie. I’d brought Jane Austen with me, and instead I was sitting in front of scraggly looking men in skirts wearing blue makeup waving swords around and bickering about land. While it’s not one of my favorite movies by any stretch, I’m sure I was especially hard on it due to my circumstances. I wanted something that was going to make me feel homey and comfortable, and that movie didn’t fit the bill.
I was having a rough time there, in the beginning. The movie wasn’t captivating my interest, so I was left to think about the occurrences so far that day. The more I thought about it, the more convinced I was that they were going to have to put in a central line the next day (central lines are when they can’t get adequate veins and they insert a large tube into one of three places - the jugular ((along the side of the neck)), the femoral ((down the side of the leg, probably would have to insert in the groin area)), or the sub-clavicle ((under the collarbone)). It’s a much more complicated procedure because you’re tapping into a major blood transport.). Frankly, that thought scared me a bit. Just imagine how big those needles must be. (!) And I was feeling more than a bit powerless, because I couldn’t so much as adjust the volume on the TV, or scratch my nose without someone assisting me. Suddenly, the four hours seemed like an eternity.
And then, even with the blanket, I was cold…very cold. When the blood is taken from you it’s obviously at body temperature, but it takes several minutes to cycle through the machine, and by the time the cells are removed and the blood returns into the body, it’s at room temperature. It was the strangest sensation when the first of the blood returned, to actually feel the cold seeping into my arm and to be able to track its progress throughout the rest of my body. Within about 5 minutes of the return starting, I felt entirely cold all over - kind of like when it’s suddenly turned cold outside and you’re stuck walking outside without a jacket. A half an hour after I started feeling cold, I started shivering.
Jill, the coordinator I’d met the very first time I came in for my secondary testing came by and asked me how I was doing (Actually, I couldn’t hear her at all because the movie was playing through the headphones. For all I know she could have been telling me she was wearing purple socks or something equally ridiculous.). I told her I was very cold, and she came back with two more blankets and placed them over me. She looked at the machine for a few seconds and pushed a couple of buttons and then headed out of the room. The blankets felt nice for a while, and then the cold seemed to seep back all around me, and I felt the shivers starting again. The next time Alma came back to check on me I told her how cold I still was, and she did something for which I will be forever thankful - she brought me a blood heater. It’s this cylindrical apparatus they attached to the bar at the top of the machine that heated up an inner core of some kind, and the tubing with the blood got wrapped around a coil-like opening flush against the heated area, warming up the blood. I felt the first moment the warmed blood entered my arm. It was absolutely luscious. :) Like sliding into a hot tub on a cool night. It was only then that I started to feel like I could get through the day.
There were a few other bumps in the road that day, but for the most part it was rather pale in comparison to the beginning. Braveheart was, of course, gory at times, but after I got more physically comfortable I was able to settle down and watch the movie with some degree of interest. It came to time to switch the tapes, and Alma said that since no one else seemed to be watching the movie station, she could put my tape on for me. So that was nice. Plus, while Alma was doing some checking on the machine before putting the tape on, she took my earphones off me and we chatted for a bit about selling things on Ebay and whatnot, and she even scratched my nose for me and gave me a few sips of cold pineapple juice. :) Mmmm.
After my movie was on for a bit, I noticed my lips were tingling up a storm. I told Alma, and she injected a needle full of calcium into my return line, and within a matter of a minute or two the tingling died down. That process was often repeated that afternoon- my lips and fingers would tingle and I would tell Alma, and she would shoot my line with calcium. The only problem was that my return vein was still not very strong, and it couldn’t take the pressure of the additional liquid, so the machine kept giving warning sirens that told her to lower the pressure on the return vein. The problem with that, of course, is that when you lower the pressure of the machine, it takes longer to collect the same amount of product. And since each day’s donation only ends when you collect a certain amount of the product, it just meant I was going to have to be hooked up to the machine longer.
About an hour from the end of my movie I started paying more attention to the readout of the machine (reading it was very easy), and I kept checking back to see how much longer I needed to be on the machine for. Right about then I realized that as soon as I was unhooked from the machine I’d want to get to the restroom. A whole IV full of anti-coagulant had been pumping into me for hours, and it all seemed to be deposited in my bladder. I kept checking the machine. A half an hour left. Fifteen minutes left. Ten. Five. And finally the machine read that it was going through some sort of returning cycle. Alma came over and busied herself taking a few last samples of blood and stem cells and plasma. The machine cycled for what seemed like an eternity, and finally it indicated the tubes and needles could be removed. Joy!!!
When the needle was removed from my right wrist, I saw that there was some major bruising going on under the skin. Both arms were wrapped tightly with gauze, and I was able to sit up slowly and then finally able to move. I stopped by the waiting room to tell my mom that I was basically done, and then headed off to the restroom. Ahh. I went back to collect my things, and Narissa gave me some instructions for that night (eat a full meal, even though I was still nauseous, drink a lot of fluids, no caffeine, get a good nights rest), and told me what time I needed to return the next day. Alma told me that she wouldn’t be there the next day because she wasn’t scheduled to be in, but she’d make sure I got a full bed instead of a chair, and she’d leave instructions to make sure I had a blood warmer from the very beginning. And then I was free to get some cold juices from the refrigerator and to go home.
2/18/2003
Okay, this is getting ridiculous. I just need to finish it all up before I forget it all! I’m already forgetting certain things, so I know I need to write down whatever I remember at this point.
The next day my mom had decided to come and sit in the waiting room again, so she came sometime around 6:30 to get me that morning. I still felt somewhat sick to my stomach, but I had been ordered to eat something, so we went to the only place by us that was open: McDonalds. I don’t know how long it’d been since I’d eaten there, but easily several years have gone by. But beggars can’t be choosers and all that nonsense, so I got an Egg McMuffin and some orange juice (I know you’re all dying to know what I actually ate, right?). The evening before Alma had given me some Calcium Citrate pills to take early in the morning to prevent some of the anti-coagulant side effects (the dreaded lip tingles), so I swallowed those, and tried to sleep a little more on the way to the hospital.
We got there bright and early (umm, 7:30, I think?). I was very nervous - even more so than the previous day. This time I was brought right in with no filling out of form or last minute blood draws. I made one last dash to the ladies room, and then went to start the second day of the transplant. I just kept thinking about how difficult it was to get the tubes in the day before and wondered what they would have to do this time. But the nurse I had from the beginning that day was just wonderful, and put me at ease right away. I think her name was Ofelia (I remember it was what seemed like a derivation of Ophelia, but can’t for the life of me remember what it actually was).
I had a lovely wide hospital bed, and that day I was to one side of a wall, and away from the corridor (where I was the day before), so I had a lot more privacy. And since I was the very first person in that day I had the VCR option all to myself. :o) I had brought Apollo 13 with me (good, captivating, long movie), so Ofelia turned that on while I was being hooked up. Ofelia had read the charts ahead of time and had warming packs for me to place on my hands/wrists/elbow crooks to expand my veins, and the blood warmer was standing at the ready. For whatever reason, my veins were better that day, and it was apparent that they had two good veins to use from the very beginning. She assured me I wouldn’t need to have a central line put in (YES!), and that did a lot of calm me. That day I had the tubes reversed in terms of position. Whereas the day before the removal tube was in my left elbow and my return tube was in my right wrist, the new removal tube was in my right wrist, and the return tubing was in my left elbow. I made sure to get more of the lovely lidocane for each of the needle sites, and as sad it sounds I was getting used to having things stuck through my skin, so it was more bearable than the day before. This time I watched as the needles went in. Rather like watching a documentary. I felt a lot of the ‘it’s not my vein they’re sticking that into, I’m watching a health documentary’ feels as the day before. But before I knew it the tubes went in with little difficulty, and the pressure was set at a rate that would take just under 4 hours, and there were no problems with that at all.
As much as I liked Alma, I felt in even more capable hands with Ofelia. But guess who came to visit me after I was on the machine for 45 minutes or so? Alma. She said she was worried about me and wanted to check on me, so she came in on her day off to see how I was! What a sweetheart.
The hours still passed slowly, but I had made a good choice with the movie, so I was off somewhere in the stars for a couple of hours. What was truly very nice is that I actually had some use of my right arm that day. The vein was in place on my hand, and I had a board that my forearm was strapped to for stability, but I could bend my elbow a tad and wiggle my fingers a bit, so I was able to actually adjust my earphones and the volume level of the monitor. When the movie finally ended I was able to actually turn something else on instead. That part was absolutely a treat.
The rest of the day went by actually rather pleasantly, except for one hitch. And that had to do with the fact that my bladder felt like it was about ready to explode. I had been ordered to drink fluids the previous night and that morning, and I’d dutifully complied, but that combined with the anti-coagulant that was being pumped into me resulted in being in excruciating agony. Torture, I’m telling you. No matter how badly in your life you think you’ve had to go to the restroom, I can assure this was exponentially worse. I knew I wouldn’t last two more hours. From time to time I had seen men in other beds in the same large room motion to the nurses for assistance, and the nurses would bring over a urinal, and then draw the curtains for the patient’s privacy, but I had no idea what would be done for women. I tell you, it was by far one of the most humbling things I have ever done in my life to say to Ofelia that I wasn’t going to be able to hold out until the transplant was over. And then they brought out the chair. I won’t get into the details, but suffice it to say that when a woman with immobile arms wearing button down jeans needs to use the restroom and can’t go anywhere because she’s hooked up to major machines, she’ll need some help. Not one, but two nurses needed to come to my rescue. Oh, the humility. But that was finally over, and the last couple of hours passed simply.
The only hindrance came at the very end when they were unplugging me from all of the machines. The majority of the unplugging was going fine, but towards the end I had asked if I could have one last shot of calcium for the tingling (I had needed to get regular doses of it the whole time). Ofelia inserted the needle into the line, and I felt the tingling disappearing, and then went to remove the needle and syringe from the tube. Well, the syringe came out, but the needle was stuck, and blood spurted all my tubes, the bed, my arm, and my white t-shirt. It was like a slasher movie! Ofelia felt really sorry and cleaned me up the best she could, and gave me a nice and clean COH t-shirt to put on. As soon as I could get up I walked over to my mom to show off my new gory look (hee), and went to change in the restroom. When I came back Ofelia took my t-shirt and disappeared to another room for a couple of minutes. Did you know that hydrogen peroxide completely foams away blood - even off a white t-shirt? I didn’t either. Narissa came over and spoke to me for a few minutes and told me as a thank you I got to choose a pair of tickets from a list they had. I told her I was having trouble choosing between two of the, so she gave me two tickets to *both* the San Diego Zoo and Wild Animal Park. Very cool. A few more last minute instructions, and I was told that I could go home and that she’d call me after a couple weeks had gone by to see how I was. She said she definitely wanted me to eat something right away (to replenish fluids and nutrients) and I was given a couple of passes to the cafeteria. And that was it. I was completely finished. :o)
We went to the cafeteria and ate something (don’t have a clue what I ate), and then Mom drove me home. I slept most of that afternoon, to the sounds of the Fellowship of the Ring in the background. By the next morning the aches and pains, the nausea and the headaches were fleeting, and I was feeling like my old self again. A couple of days after that and I felt as though it had all been a dream. It feels that way still.
12/03/2002
Narissa just called me to give me an update on my recipient, and to find out how I am since it's been two months since to proceedure. (Ugh. I guess that means I actually have to finish up writing what happened. Oh well, at least I posted the second installment.)
I am truly happy to report that Narissa gave me good news.
My recipient is doing well, and was recently discharged to live at home again. She is able to care for most personal needs herself, but needs varying amounts of help for other tasks. She has not had any infections, and the stem cells seem to have ingrafted without problems. The best news is that she has had no relaspe or reacurrence of the disease as of yet.
This is fantastic news! There's still plenty that can go wrong and this first year is going to be very iffy, but this is definitely a good start. A *very* good start.
6/10/2003
Got another update, and it's... interesting.
I was contacted by a new coordinator, Lori at City of Hope (Narissa is on maternity leave), who asked me if I would be willing to come in and do another donation. Apparently it's a fairly rare request, but it seems as though my patient isn't doing as well as they would have liked to have seen at this point, so they're hoping that an infusion of my white cells will help the engrafting process. How, exactly, this is supposed to happen is somewhat beyond me because I would have thought that by now the cells would have either engrafted or not and there wouldn't have been much hope of a change at this point. So I agreed to the donation, of course. The upside is that this time I can expect much less discomfort as it's a much easier process - no shots in preparation, and few previous COH contacts. I went already to do a blood draw (they need to re-screen me for infectious diseases), and I'll do a phone interview with a physician at some point, but other than that all I have to do is show up. Next Wednesday, in fact. I'll take a full day off work, the proceedure will take about 2-3 hours (which in my case probably means 3-4 hours), and then go home and hang out with a book for the afternoon.
And now COH has another working VCR and a DVD player for the donors to use. ;o) It's the little things, you know?
7/02/2003
I did the second transplant I had mentioned in the previous post a couple of weeks ago, and it went very smoothly.
The initial blood screen was fine, and I didn't even need to have a doctor's phone interview, so there was very little in the way of preparation I needed to do. When I showed up I was told that the proceedure was going to take a little longer than they had initally thought. As in it was going to take more like four hours, and I ended up being hooked up to the same machine as before for about five hours. Even though I had been told the collection was for white blood cells, it was basically a standard PBSC donation - the PBSC are gathered in the white blood cell layer - which makes a lot more sense than why they could have wanted white cells only. This time I felt much more comfortable because I knew what was going to happen and because much of the pressure I had felt for the previous donation was gone. My patient was already surviving, and this could only help things more. This time when I finished I was wiped out for the afternoon, but I felt completely back to normal the next day, and went back to work as though nothing had happened.
As much as I wish my patient hadn't needed additional product from me, I'm delighted to know that because I signed up to the registry and then donated her health is improving. I'd love to get in contact with her after the year deadline passes, but for now I'm satisfied knowing that she's still alive and that her outlook is better than before.
1/29/2004
The final update on the transplant patient. And, unfortunately, it's not good.
My recipient died sometime in the fall. I don't know when because even though I'd called COH to request an update I'd never gotten a response. Lori called me and asked me to come in and give a blood draw (I'll be going in roughly once a year for the next goodness-knows-how-many years), and she told me then.
It's sad, and I did take it rather badly at first, but time passes, and I realize that maybe she had an extra year of experiences that she may not normally have had.
If COH ever calls me again and asks me for a donation I won't hesitate to say yes.