Archive | Uncategorized RSS feed for this section

One month update

28 Nov

I just received a one-month update on my stem cell recipient!

The transplant has engrafted and my recipient is doing well and has been discharged from the hospital!

“Engraftment” means that my stem cells have migrated to my recipient’s bone marrow and have begun to repopulate her body with healthy white blood cells, giving her a new immune system (made of cells with my DNA!). That she was discharged means (I hope) that she has not experienced, or has experienced but recovered from, any of the immediate risks associated with the transplant process, like infection. She still likely faces a number of challenges related to the treatment in preparation for the transplant, which is extremely taxing, the risk of graft-vs-host disease, and the possibility of relapse, but I am wishing her the very best and hoping for more good news.

As for me, my Neupogen side effects completely vanished by a couple days after donation, so my biggest challenge now is wrapping up my first semester of grad school. After hearing the good news about my recipient, I did a little research on the process of allogenic stem cell donation, particularly in older patients, so if I have time, I’d like to write a post explaining a little bit about what I’ve found out there. In any case, I’ll be sure to update when I hear more about how my recipient is doing!

The actual PBSC collection!

18 Oct

Today was the day of my stem cell collection!

I arrived at the hospital at 8:30 AM and walked up to the now-familiar infusion center (with my dad, who kindly agreed to sit around and keep me company during the collection). My doctor spotted us on the way in and pointed me to a bed, which looked way cushier than the very hospital-ish (whatever that means) green vinyl chairs which I’d been seated in for all of my Neupogen shots. Since all the action was happening only in my arms, there was no changing into a hospital gown, which I appreciated. We got the last Neupogen injection taken care of, and I was ready to go! Well, almost. They kindly reminded me that I’d be attached to the apheresis machine for about four hours, so unless I wanted the full bedpan experience, I’d better make sure to stop by the restroom.

How it goes:

Before they stuck any needles in me, my doctor and the infusion center nurses explained how the whole procedure worked. I would have a larger, rigid needle in one arm, attached to the “out” tube taking my blood to the apheresis machine, and a smaller flexible one in my right arm, putting the blood back in once the machine had taken out some stem cells. In between the in and out, my blood would be mixed with anticoagulant so it didn’t clot outside my body, it would be spun by the apheresis machine so that the different cells and plasma would separate into layers, the white cell/stem cell layer would be collected by the machine (at about 50% efficiency, so I’d still have plenty), and then everything would be mixed back together to go to the “in” tube, supplemented with a little calcium to counteract calcium deficiency caused by the anticoagulant. This would happen continuously for about four hours, cycling all the blood in me through the machine more than twice!

For the purposes of preserving the anonymity of my recipient and myself, I couldn’t take pictures of myself hooked up to my apheresis machine, but the machine looked like this.

apheresis machine!

All that tubing is actually one closed unit, so that my blood never comes into contact with the machine. Thank goodness for smart nurses and the helpful color-coded diagram for linking up the tubes! The bags hanging at the top would include one for the anticoagulant, which is what you can see in the picture, plus one for my stem cells, and one for a little plasma they collect to freeze the cells in if they need to store some for later (most will not be frozen and will be given to my recipient within a day or two).

How it went:

Having learned all I ever needed to know about apheresis, it was time for the jabs. The smaller “in” needle went in first. Normally they can put this one in the forearm so that this arm has a little mobility, but they couldn’t find an easily-visible vein in my forearm, so it had to go into the crook of my elbow. It felt about like all of the blood draws I’d done so far. The pain continued after the needle was in, but faded away in about half a minute. The “out” needle hurt enough that I gasped involuntarily, but this pain also faded away fairly quickly. The tubes were all taped down to my arms and, after a little blood was drawn off to check my cell levels, the machine was switched on. The tubes in the machine start out filled with what I imagine is some sort of saline solution so that there is no air in the system. As the machine starts, the harmless solutions goes through the system into the “in” tube, while the blood from the “out” tube takes its place. I watched the tubes slowly turn from clear to red, and eventually the stem cell bag started to fill. My doctor said the machine could filter out about 1 cc (cubic centimeter) of stem cells every minute, and we were shooting for a little over 200 ccs, so it would be about four hours.

The first hour was actually a lot of fun, since so much was going on. My doctor, nurse, and observing medical student were gathered around while the results of my day-of blood cell counts came in. My white blood cell count had increased eightfold since before I started Neupogen, and my stem cell levels were good (yay!). I was offered warm blankets (since the blood isn’t heated before it comes back in) and briefly experienced the slight tingling in my nose and lips that is caused by the anticoagulant before the calcium counteracts it. My contact at the NMDP was also there to wrap up my final Neupogen side effects survey, and remind me that she would keep in touch to make sure I was in good shape a couple days, a week, a month, and six months after the Neupogen experience.

The second hour was a little more relaxed, and I mostly talked with my dad about the news of the day and watched the stem cell volume readout on the machine slowly increase. Around the two hour mark, my “out” vein decided to start misbehaving, which in the context of apheresis means that it started to spasm around the needle. This didn’t hurt at all (it’s sort of a fluttering feeling just at the needle site), but it decreased the pressure of the blood going into the tube, so the machine beeped at me and paused its pumping. This is a pretty typical occurrence when the donor’s veins are small, so it was nothing to worry about, but it would prevent the apheresis from continuing. We tried a number of things to keep the pressure in that vein up, including squeezing a stress ball every now and then, moving the needle in the vein a bit, and putting a rubber tourniquet on, but these only helped temporarily, so the needle had to be put in a new vein. Obviously, I wasn’t thrilled, but it was a quick change, and it would be worth it if that machine would stop beeping and stopping.

After the needle move, the apheresis went smoothly, without even one more beep. The hours felt longer without all the excitement, but I talked to my dad, watched some of a movie, and filled my mom in on all the events of the day when they switched shifts sitting with me. Let me say it now, stem cell donation is totally possible on your own — the doctors are great and everyone is really kind — but it is infinitely nicer to have someone who actually knows you to talk to and to watch out for you during the process. A good friend or family member or two are highly recommended by peripheralblogstemcells for an ideal PBSC donation experience.

By the last twenty minutes or so of apheresis, I was well ready to be done. I had read in another donor’s blog that it was advisable not to drink too much fluid morning-of, advice that I followed, but that didn’t stop the half-liter of anticoagulant from taxing my bladder after four hours. On top of that, my “out” arm, which had had to stay straight the whole time was starting to ache in a way that was tolerable, but made the minutes creep. The minutes did eventually pass, and I felt liberated when the nurse came to take my needles out.

The “out” line could be removed immediately, and it hurt a bit, but it felt so good to be able to move my arm, it really didn’t matter. The “in” line had to stay in a while, because the machine still had a bunch of my blood in it, and I needed that stuff back. The machine returns the blood by running clean fluid through to push the blood back into my “in” arm without taking any more out of my “out” arm. This only took a few minutes, then the last needle was out and I was free! Since I didn’t actually lose any blood, I didn’t have any lightheadedness from trying to get up, but I took it slowly and sat up drinking a kindly-offered and enthusiastically-received cup of chocolate milk before I tried walking around.  Once I was pretty sure my legs still worked after being still for so long, I used them to get to the bathroom speedily, so I could actually focus on the wrap-up my doctor was giving me.

After a little explanation of how the cells would be given to my recipient, and a thanks for my good deed, I was all set to go. I headed home, took a little nap, and wrote this. As far as the donation goes, my work is done. The NMDP will follow up with me for a little while to make sure the Neupogen wears off well, and will contact me in a month to a month and a half to let me know how my recipient does. At the same time, I will follow up with you! In the next few days, I’ll keep track of when the Neupogen side effects disappear and any feelings I have about the donation process from the other side of it. Hopefully in a little while, I’ll be able to pass on some good news about my recipient, though I know the chances for people who have reached the stem cell transplant stage are not great.

I can say right now, there was not one moment that I regretted deciding to be a PBSC donor. The little discomfort during the tests and the collection felt like nothing compared to the good I know I’m doing by giving my recipient hope, even if the transplant doesn’t work out. If you are healthy and able, please think about becoming a potential donor, and if you believe that you could go through with the process if chosen, join the Be The Match Registry.

 

 

Neupogen day 4

18 Oct

Monday was my last day of Neupogen injections before the stem cell collection!

(Of course, there’s one more injection immediately before the collection.) Thankfully the side effects were pretty minimal, because I had to work until eight and I didn’t want to come home all sore and crabby. As in the last couple of days, the muscle soreness and neck soreness had either disappeared or been completely erased by the ibuprofen (my hero), leaving only the back-crampy effect which I’ve mentioned before, and  little soreness in my skull and jaw. I do think that pain in my back has gotten a bit stronger, but maybe it’s just because I’m getting sick of it. Anyway, I took it easy Monday night and went to bed early so I’d be well-rested for the collection.

Takeaway from the first four days, be diligent about the ibuprofen! Next up, the collection blog!

Neupogen days 2 and 3

17 Oct

I got my second and third Neupogen injections this weekend.

My overall muscle soreness thankfully did not get any worse after my second Neupogen injection (on Saturday), but the soreness in my neck did increase a little bit, and I did start to notice my ribs and lower back feeling like they were cramping briefly sometimes, especially when I stood up or stretched quickly. I was much more diligent about taking ibuprofen every six or eight hours and that more or less negated the muscle soreness, so I just felt a little creaky and old all day.

The takeaway from Saturday for me was that even if the injections make you a little tired, exercise is not a bad idea. In the afternoon I went on a walk in Devil’s Lake with a couple friends, and even though I felt tired pretty early that evening, the fresh air (along with the amazing changing leaves!) and the walking definitely loosened up the Neupogen stiffness, if only by distracting me from it.

Sunday went about the same way; I repeated the pretty-leaves-and-crisp-air self-treatment and went pumpkin picking, which again, with the help of some ibuprofen, pretty much wiped out all of the Neupogen side effects beside the sore neck and the weird rib/back crampy thing, though it did help both a bit. The only increasing side effect I noticed was the fatigue, which didn’t set in until the end of the day, but did have me pretty much beat by 9:30 PM or so. I suspect I’ll want to sleep early after my fourth injection.

I’m almost at the end of the day after my fourth injection now, so updates on that soon!


It begins: Neupogen day 1

15 Oct

Yesterday morning I got my first Neupogen (filgrastim) injection.

But! Before I get into how that went and the side effects I’ve experienced, I want to talk a little bit about what it’s been like interacting with all of the people involved with this process. I didn’t meet anyone with the NMDP in person until I was actually chosen to donate.  Even the preliminary blood labs were done by a private testing company not formally associated with the program.  Once I heard that I was going to donate, I was a little worried that I would be bounced around the hospital to a hundred different people whose names I wouldn’t know and whose faces I’d see only once. This didn’t turn out to be the case at all.

Before my physical, I was contacted by someone in the local branch of the NMDP who walked me through the consent forms, explained the donation process, and helped schedule the physical and the collection. I met the same person at the hospital on the day of my physical, and she walked me to each test, and introduced me to the doctor who would be doing my collection, who spent a good twenty minutes explaining the process again and addressing concerns I didn’t even know I had. My doctor showed me to the infusion center on my first day of Neupogen, gave me the injection herself, and introduced me to the staff in the infusion center. She also gave me her phone number so I could contact her directly if I was worried about any of the Neupogen side effects. I explain all this because I want anyone who plans to donate to know that the NMDP won’t just be friendly on the phone and then dump you into the system. Everyone you meet along the way wants to make the donation as easy as possible for you, and everyone thinks you are brave and generous to be donating.

So, how was the first Neupogen injection?

It wasn’t bad at all. Since it’s the first of my five injections, my doctor took a blood sample beforehand to get a baseline for my white blood cell count. The infusion center staff also took my blood pressure, pulse, and temperature, and asked a few questions about if I was feeling any discomfort. They will take these measurements (except the blood cell count) each day of Neupogen injections to monitor my response to the drug, and my experience of the side effects. The Neupogen came in two little vials of clear liquid, which my doctor kindly combined into one syringe so that I wouldn’t have to be stuck more than once. It’s a subcutaneous injection, which means they just inject the liquid under your skin wherever there’s a nice fat pad to absorb it, and they use a teeny little needle. I got mine in the stomach and barely felt the needle go in. The injection of the fluid stung a bit, but definitely no worse than a flu shot. After the shot, they had me stick around for a few minutes to make sure I didn’t have any bad reaction to it, which I didn’t, and I was good to go.

The side effects?

I didn’t feel any side effects of the Neupogen until the afternoon. My muscles started to get a little achy, sort of like I had had a good workout the day before. The soreness increased slightly through the evening, but the worst it got was a mild soreness in my muscles all over, and a slightly stronger soreness in my neck. I didn’t take any painkillers until I went to bed, but I took a couple ibuprofen this morning and it worked well (and quickly). I didn’t feel any bone soreness, nausea, or headache, which was nice, and since the soreness made me feel like I had exercised, I actually slept really well.

I had my second injection this morning, but I won’t blog about it until tomorrow so I can wait and see how I feel later today. So far, I’m still totally on board with the donation, and the discomfort is minimal, especially with a little ibuprofen. More updates tomorrow!

 

O hai, NMDB! (Becoming a PBSC donor)

6 Oct

I am a peripheral blood stem cell (PBSC) donor (-to be). I’m writing this blog because I was helped greatly by reading others’ donation experiences when I found out that I was a potential donor, and I’d like to explain the experience to other potential donors and friends/family/people wondering whether they should join the registry.

Okay, background: 

A few years ago, I decided to sign up with the National Marrow Donor Program (NMDP), also known as the Be The Match registry, at a drive going on at my college. This entailed writing down some basic personal information and getting a quick cheek swab, and I did it with little consideration that I might actually be called upon to donate bone marrow at some point. This is not what you (or I) might call the right way to decide to be a potential donor (you know, the carefully considered way) but sometimes we just do good things because they seem good.

A couple months ago, i.e. years after I joined the registry, i.e. when I had totally forgotten I was on the registry, I got a call from the NMDP letting me know that I was a potential match for a patient, and would I be prepared to complete a 15 minute phone survey about my health, followed by secondary testing to see if I was the best possible match. At this point I experienced a little adrenaline storm inside, mumbled something about can I have a day or two, and hung up the phone. I mean, they wanted to take things out of me, and put them in some other person. Fortunately, adrenaline wears off, and I called back after the weekend to confirm that I was ready to do whatever extra testing they needed. I was ready to maybe help save someone. After answering a few questions to make sure I wasn’t infected with something awful, I was all set up to do a blood draw at a lab nearby. This went about like any ordinary doctor’s appointment, and then it was time to wait. My contact at the NMDP (who, I might mention, was the same person every time I was called, was completely understanding of my apprehension, and carefully explained every step of the process to me) said it could be as long as two months before they chose the best-matched donor, and the patient was ready to move forward. Almost exactly two months after my blood testing, I learned that they had chosen me.

So now: 

My recipient (about whom I am only allowed to know age, sex, and disease) has a type of leukemia, and the best kind of treatment for her is a peripheral blood stem cell (PBSC) transplant. PBSCs are stem cells from your bone marrow that are floating around in your bloodstream. These stem cells become white blood cells, and in a patient with leukemia, they become cancerous and stop functioning properly, so they must be killed and replaced with healthy cells. A bone marrow transplant collects healthy bone marrow (containing stem cells) from a donor through a needle inserted into the pelvic bone, and puts it into a patient whose own marrow stem cells have been killed off, so she can again generate healthy white blood cells. A PBSC transplant instead involves boosting the number of those stem cells floating around in the donor’s blood with a drug called Neupogen, then filtering them out with a machine to collect them for transplant. PBSC donation is less invasive and doesn’t require general anesthesia.

This week I had an EKG, a chest x-ray and another blood draw (for various tests) to make sure I’m fit to do the PBSC donation. It seems that I’ve passed, so I’m scheduled to start my Neupogen injections (one for each of the four days before donation, and one day-of) on October 14th, and donate on October 18th. Even though the idea of spending time in a hospital is a little strange, I’m mostly just excited to get to help someone fight such a terrible disease. I know that I was only chosen to donate because I have an HLA type (a compatibility factor) similar to my recipient’s, but I feel blessed (and I do not use that word often) to have this opportunity.

Coming soon:

I’ll explain a little bit more about how the actual PBSC collection works when I get closer to doing it, and hopefully snag a picture of the machine they use on me (called an apheresis machine). In the meantime, I’ll be updating once I start my Neupogen injections to record any side effects I experience (typical ones are supposed to be bone soreness, headache, and nausea, but different people experience them differently or not at all), and my general feelings about the donation. See you on the 14th!