Monday, March 17, 2014

Chronicling the process

Update #2:
As mentioned below, about six months after the initial donation, I had heard that the patient was recovering. About a month ago, I was contacted asking for another donation. This time, it was not for another donation of stem cells, but for T cells, a specific type of white blood cells. The method of donation would be the same (apheresis- diagrammed below), but I would not need to go through the progression of injections as I had before.

The initial process of the donation was similar- phone interview asking if I was willing and able, a questionnaire asking whether or not I had any diseases (still no), and then a physical and sets of blood tests to see if I actually had any diseases (all negative). That put me in line to donate the T cells.

For those of you that don't know, your immune system is comprised of a variety of cells that do a variety of things. For this donation, I would be donating T cells. There are several types of T cells, and they can be classified simply as helper T cells or cytotoxic T cells. Helper T cells recognize infected cells, and activate other parts of your immune system. Cytotoxic T cells attack infected cells. If you want to learn more about the immune system, you can go here. The donation will help bolster the patient's immune system and help the donation I made a little more than a year and a half a go take hold.

Prior to the actual donation, I went through a physical, and two rounds of blood test to confirm that I was disease free. All the results came back appropriately, and with the date set to donate, all I had to do was go to the hospital.

As mentioned above, the process of donating T cells was the same that I had undergone previously when I donated bone marrow. This time, they would be skimming a different layer of cells out of my blood. The whole process ended up taking 7 hours. Like last time, my dad came with me for the first part, and the mom arrived with a burrito for me to eat and she hung out for the second half of the donation. With a needle in each arm, I sat, read a little, and slept. After having 24 liters of my blood filtered (that's roughly four times a typical person's blood volume), they stopped the process.

About a day after the donation, the patient will receive the T cells via an IV. If there is more to update, I will update this post again. The initial story of the process of being a bone marrow donor is below.
This is the machine that separates the blood coming from my body. The right, brown colored bag is what the patient will receive. The other bags are saline solution to keep me hydrated through the ~5 hours the process took.
Despite it being the offseason, I still have a resting heart rate of 52. Not too shabby.

For a quick, too long, didn't read complete synopsis- In college, I signed up to be a bone marrow donor, I matched with a patient, and in March of 2014, I donated peripheral blood stem cells. Read more below; it outlines what the process was like.

Update #1: I found out on Friday that the recipient of my donation is doing ok!
While I had no control over whether or not he would improve, I am incredibly happy. I won't be able to find out for a year after the donation who the person is, but someone out there is doing ok due to the efforts of doctors, nurses, his family, and to a very small part, my bone marrow. Sign up to be a bone marrow donor here. You can help someone. It is super easy. 

The original post:
This post chronicles my experiences as a bone marrow donor. Just as a disclaimer, I try to explain as well I can and as much as I can the science behind what is going on. This post is rather lengthy. The more "sciencey" sections are in the boxes. You can skip these sections if you so desire. There are a ton of links in this post, linking to further information. If there are any factual inaccuracies in here, please let me know and I will correct them promptly.

Back at William and Mary, I signed up to be a blood marrow donor with the National Marrow Donor Program. I don't really have that much memory of that process, but I do remember filling out some paperwork, but that is about it. I think they took a cheek swab or maybe a small vial of blood. To be completely honest, I didn't even remember whether or not I had actually signed up for it; the thought would pass through my mind as the occasional call for bone marrow donors would hit the media to help someone in need. I found out early this year that I indeed did sign up for the the NMDP.

Why do individuals need bone marrow transplants? 
Bone marrow is the site of some forms of stem cells, and the stem cells that arise from the bone marrow go on to become parts of your immune system and blood (these kinds of stem cells are called hematopoietic stem cells, for they are limited in what they can become (as opposed to embryonic stem cells, which can be totipotent-meaning that they can become any type of cell in the body)). The people who are most typically in need of bone marrow transplants are those who have some form of leukemia (cancer of the blood cells) or lymphoma (a more specific form of cancer of the blood cells that directly impacts immune system cells). Some well known cancers beyond these that can be potentially treated with a bone marrow transplant are multiple myeloma, and neuroblastoma.

In early January, an email came through from the NMDP saying that I was a potential match for a person in need, and that if I wanted to be a potential donor, I should either call or email back. About twenty minutes later, I got a phone call from my brother, telling me that he also got an email, but with my name. What I later found out was that when you sign up to be a donor, you give back up contact information for people who can get in touch with you if the NMDP can't. Dan had received the email, he wanted to make sure that I knew that I was a match.

Conversations with my brother frequently go like this: Science. Family. Science. Work. Sports. Women. Science. We are both pretty dorky. He was excited that I was able to be a donor, and we talked about the process and what would happen going forward. We were both pretty familiar with what could happen, now it was time to get it going.
Throw some lab goggles on us and we would be just as comfortable.

In the email, they ask you to call or fill out a form for an initial contact. After filling out the form, the next day I received a phone call to discuss the potential donation. The call took about twenty five minutes, and the woman I talked to outlined the process, answered some of my questions, and then we went through a survey that took about 10 minutes. The questions ranged from do I have any tattoos (no), have I ever paid money for sex (no), to have I ever been exposed to deadly diseases A-Z (hopefully not), with the end goal of identifying if I have some form of communicable disease that could potentially be passed on to the donor, and to see if I was a good match.

Obviously a questionnaire is not sufficient to determine whether or not I have any potential issues that would make me a poor match for the patient, so at the end of the survey, the representative set up a blood test for further testing. The blood test would screen for particular communicable diseases, and better determining whether or not I would be a good match.

Determining a good match:

 So what determines a good match? When doctors are examining a potential donor's cells and comparing them to a patient's, they are looking deeper than just the blood type. They are looking for similarities in a particular protein, known as the Human Leukocyte Antigen (HLA). As a class of proteins, antigens act as identifiers on the surfaces of cells, allowing cells to recognize each other. These identifiers are relatively unique to each individual, and when an immune system encounters an antigen it doesn't recognize, the immune system releases antibodies to attack and help remove the foreign cells. Check out the video below and my caption for a visual representation of the relationship between antigens, antibodies, and a potential immune response:

The foreign cells are the red blobs with the two purple bits (antigens) that are attaching to the larger cell. A specific human antibody (the Y shaped molecule) attaches the antigens presented by these foreign cells, and when a foreign cell has been targeted by these antibodies, it can prevent the foreign cell from invading other cells, and the foreign cell is now marked for destruction. The cell eventually is killed by a particular type of white blood cell.

What is so special about the specific antigen that the NMDP is looking for (the Human Leukocyte antigen (HLA))? The HLA is part of the Major Histocompatibility Complex (MHC) (don't you love all these acronyms? Science can very much seem like a foreign language.) The MHC is a set of cell surface markers that interact with the immune system. Remember that individuals present different antigens (cell identifiers), the NMDP is looking to ensure that the HLA from the donor matches closely with the HLA from the patient so that the immune system does not target these new potential cells. You can read more about the standards for determining a match between donor and patient that the NMDP uses here.

The next night after the questionnaire, I went home to discuss the news with my family. My dad told me to slow down, to do more research, asked questions, and then offered to go with me for my appointments if I made it all the way through. My mom did the classic hand clasp of excitement/concern, listened and asked questions about the process and timing.

A few days later, I was in a local blood testing clinic having blood drawn. Just FYI, you are supposed to schedule your appointment early in the day, but I did not know this when my appointment was made. The reason-your blood is not tested by the clinic where it is drawn, but rather by the NMDP, and it needs to be sent overnight via FedEx, and FedEx needs a two hour window to schedule a pick up. With my appointment at 4pm so I wouldn't have to miss school, there aren't two hours left in the business day for FedEx to get there. After a phone call between the NMDP and the lab technician, a plan was developed to spin my blood down in a centrifuge to be stored until the next morning, where it would get picked up and shipped.
Once you see the arrow in the logo, you can not unsee it. 

The lab tech drew six small vials of blood, and sent me on my way. Here are the little vials of blood. Here is something neat about the vials-apparently the tubes have had the air inside pulled out, so it is essentially a vacuum on the inside, so the pressure difference helps pull the blood out of your arm faster. SCIENCE.

After the blood test, the whole process of being a potential donor disappeared from my head. It was the weeks before finals at the high school, a month out from the start of the high school swim season, and my own training was starting to gear up. Then, in February, my phone started buzzing in my pocket during class-not a text message, but a phone call. After the buzzing, a second buzz-phone call and voicemail. And then I got an email with this subject: "URGENT! National Marrow Donor Prog/ Please call..."

As I was teaching a lesson on gas laws, things quickly came into focus. The phone call and voicemail were telling me that I was the best match. The email, when opened in between classes, confirmed my suspicions, and that the patient was in need of a donation in March. When I figured that out, it became difficult to focus on my classes for the rest of the day.

At lunch, as requested by the email and the voicemail, I called the NMDP and spoke with a representative who again told me that I was the best match, and that the NMDP would send me a packet via FedEx that I was to read.  The representative asked me what I think was the same set of personal health history questions that I had been asked before (still no tattoos, no new infections), and told me that I would be doing the PBSC style of donation.

PBSC Donation

There are two ways of collecting stem cells from a donor to give to a patient-one is a direct collection of bone marrow from the hip, and the other is called peripheral bone marrow stem cell donation. For the former, the donor is sedated and bone marrow is surgically collected from the back of the hip. PBSC is a non-invasive style of collecting bone marrow. It involves the donor receiving injections of a drug called filgrastim for the 4 days leading up to the date of collection (and then once more on the day of the injection), which stimulates the body of the donor to produce more stem cells and release them into the blood stream. The filgrastim is a protein that is produced by genetically engineering E. coli to produce it, and then the protein is harvested from the bacteria.

After receiving the injections over the course of 4 days, the donor comes in on the fifth, receives the last injection, and donates the stem cells that his/her body has been producing. This is done through a process called apheresis: blood is collected from one arm of the donor, is separated using a centrifuge (which separates solutions based upon density), the cells of interest are skimmed off, and the blood is then returned to the other arm of the donor. The whole process takes ~6 hours to get enough for the patient.
A simplified image of what is going on in the machine that is separating my blood.

If you want to know about marrow donation from your hip, go here.

Donating via PBSC has a faster recovery time, and is obviously less invasive. To be honest, I was somewhat grateful to be doing this style of donation. It would interrupt my life less in terms of missing school, amount of discomfort, and I would miss less training.

At the end of the phone call, I was told that I would be FedEx'd a package that would contain much more information for me to read, and forms for me to sign consenting to undergoing the process. I was told not to sign anything until after I had another phone call, which was scheduled a couple days after I was to receive the FedEx.

Within the package, there was lots of information and legalese. My parents and I both read over it. It contained information about donation, treatment, what could go wrong/side effects/etc. A couple of items of note stood out to me: With the filgrastim, there were really high rates of side effects-roughly 80% of individuals who receive the injections experienced some amount of physical discomfort. More reading showed that the drug is not only given to donors, but also can be given to patients. Filgrastim not only causes stem cells to be produced, but other white blood cells as well, so this can benefit patients who have certain conditions. The other bits that stuck out to me was that I could be called upon to give again to the same patient, and that survival rates 2-5 years out from the procedure were in 30-60%.

A few days later, I received the promised follow up call. One thing about the NMDP is that they are punctual and complete. I was able to ask the few questions that I had, and then confirm that I was willing to donate. A physical was set up to make sure that I am completely healthy for donation.

The Physical
At the physical, I gave another blood sample, had an EKG and a chest x-ray done, and had a brief discussion with the physician who will be helping me through the process. It was really interesting to have the blood work and EKG done- as a science nerd, it was interesting to see all the information about myself.
More little vials of blood for testing.

My chest x-ray. Yes ladies, there is a heart in there. That thing in the middle apparently.

I have blocked out my numbers from the blood test, but these are the things they test for. They had the results done by the time I was done with my physical. I asked for a copy so I could look over it. It was fascinating to see where I was high or low on the scale. I spent the afternoon on google researching all the ones I was unfamiliar with.

My EKG. Further evidence that I have a heart. And a heart rate of 50 bpm. According to the doctor, if I had this done at some point in the past, they would have diagnosed me with having too large of a heart. 

After the physical, I received a phone call from the NMDP letting me know that they had received the test results, and that I would have to go back for more testing because one of my markers had come back too low- my platelet count more specifically, while within the range for the hospital that had done the testing, was below the acceptable range set by the NMDP by just a little. If my numbers didn't go up, I could still donate, just not through PBSC, but through the marrow donation method. After receiving this news, I googled everything I could about getting my platelet level up. I couldn't find anything concrete that I could do other than to eat healthy, and to take Vitamin B12 and folic acid. There are treatment options for people who have a really low platelet count, but most of those involve a prescription or removing your spleen, so off to CVS I went to look for Vitamin B12 and folic acid supplements. I had 4 days until the next blood test, and I wanted my numbers to go up.

I don't normally take supplements, so when I went to the vitamin aisle, it was a little bit of shock and awe. There were about 50 different types of Vitamin B12 supplements I could take, so I just settled on getting a bottle of Men's One A Day. Read this for more on multivitamins. And don't take advice from a blog. Consult your doctor. 

Armed with my multivitamin, and some spinach, I was able to get my platelet levels up. Was there a causal effect? I have no idea, but it meant that I was back on track to be a PBSC donor. Dates and times were set up for the injections of filgrastim, and for the final donation date.

The rest of my life continued on normally. I coached, taught, got evaluated based on my teaching (I received a positive evaluation, which was nice), raced a sprint triathlon (race report here), and used my slow cooker.

Then the injections started:
Day 1: All of my appointments were in the morning, and fortunately for me, my appointments were during my planning period, so I didn't need to miss school. On the first day my dad came with me. The same nurse that had done my physical was there to do the injection, and we chatted about some of the same things. We went through a quick questionnaire, they took my blood pressure, and took a small sample of blood to establish a baseline of my blood count before the injections. You have an option of receiving the injection in your arm or in your stomach. I chose my arm, and in the needle went.

On the first day, you must stay under observation for 30 minutes to an hour after the injection to make sure that you don't have any adverse reactions to the filgrastim. There are some serious, but rare side effects. While my dad and I waited, I graded tests and he read the paper. After 30 minutes, I felt fine, and my dad drove me home.

At work, I felt fine until about halfway through the day. Then a small headache and hip discomfort started. An annoyance, but nothing more. My day continued as usual.

Day 2:
On the subsequent injections of filgrastim, you only need to go in for the injection, and there is no waiting to see if you have any side effects. This trip, my mom went with me. One of the perks of living close to home.

The nurse asked me if I had experienced any discomfort (I had), and to rate it. The discomfort was minimal, as noted above. After the injection, I dropped my mom off at home, and went to school. Throughout the day, different parts of my body would very mildly ache. At times, it would be my hips, or my back, or my ribs.

Day 3:
Today I received the injection in a different part of the hospital. For the first two injections, I was in the apheresis clinic, but today I was down in the cancer ward. The waiting area was filled with patients discussing their treatment options, what kind of diet they were on, and what their doctor was like. They were giving me a different perspective on what I was going through.

After receiving the shot, I went into San Francisco to help out at a Challenged Athletes Foundation event held at a cycling studio called Shift, organized by Meredith Kessler. A quick shout out-Meredith just won Ironman New Zealand in a new course record. The Challenged Athletes Foundation helps support physically disabled people pursue athletics. You can make a general donation to the event here, or make a donation directly to CAF here.
This is Matt Dixon and Meredith. Matt is a coach and trainer at Shift. If you want to get faster, you go to Shift. If you want to meet someone awesome, you meet Meredith. If you want to help out a worthy cause, you donate to CAF. Picture from Triathlon Magazine.

In terms of discomfort, this was definitely the worst day so far. Discomfort in my back, head and hips.

Day 4:
"You have really pretty veins. I'm going to send in the young nurse. Are you taken?"


Those were the words that greeted me as I entered the clinic for the last injection before the donation. I have received some unusual compliments in my life (you have a big back from someone who was applying sunscreen, and you have pretty toes from a TSA agent who asked me to remove my sandals going through a security checkpoint) but this was a first.  I had just gone for a swim with the EMJ team, been smoked by two former division 1 swimmers from Cal and Stanford, and I was feeling a little out of it. The nurses in the past couple days had told me that I have nice veins, which would make their lives easier on the day of donation, but in terms of getting complimented on my veins, this was new.

A few minutes later, a nurse came into my room, gave me my injections, and I went on my way.

The rest of the day was spent grading, tutoring, and trying to not feel like garbage. As mentioned earlier, the goal of the filgrastim is to get the body to produce extra stem cells, so the effects of the filgrastim add up. I felt progressively worse as the process continued, but on a scale of 1-10, 10 being truly miserable, I was a 2 or 3 at worst.

What is the patient going through while the donor is getting the injections?

Prior to receiving the cells from the donor, the patient has to go through what's known as the preparative regimen. This can start anywhere from 6-12 or more days before the patient receives the donation. During this process, the patient will undergo higher levels of chemotherapy and/or radiation with the goal of destroying more of the diseased cells, and to make room for the cells that they are receiving-this means that their bone marrow is destroyed. They also may receive treatment to weaken their immune system. Read more here. Here is a link about some of the side effects that the patient may experience going through the treatment.

According to the nurse that I talked to, the treatment is so severe that if for whatever reason I am unable to donate on the specified date, it is most likely a death sentence for the patient.

Day 5: Donation day

This morning, my dad and I went over to the hospital together. We met with the same nurses who had helped us before, and again, I was complimented on how pretty my veins were. I was given my final injection, had some blood drawn to determine what my starting levels were, and then in the needles went. For the next chunk of time, I looked like this:

In my left arm is a steel needle that is withdrawing the blood. I was not allowed to move this arm at all. The blood flows to the machine over my right shoulder, where it is spun down, then the stem cells are removed and collected. You can see what has been collected so far in the reddish bag at the top of the machine. The blood is then returned to my right arm. When the blood is returned to my arm, it is heated and mixed with some citrate, which helps prevent the blood from clotting.

Over the course of the day,  I had to sit like this. If I moved my right arm, the steel needle could move, causing problems/discomfort, etc. I could move my right arm around a fair bit, so I had my laptop with me. I got a little bit of reading and emailing done, worked on my French on Duolingo (a free app/website where you can learn a language), and talked with my dad. At around noon, my mom came and brought me a burrito and relieved my dad. My mom and I did some French for a bit.

The only hiccup occurred when there was about 45 minutes left in the donation, when the apheresis machine wasn't able to pull blood fast enough out of my left arm. A minor problem, as the nurse came over and adjusted the needle, and the last bits of time went by uninterrupted. After approximately 5 hours, the machine had filtered enough blood, and had collected this from me:
That is approximately 250 mL of fluid that contains my stem cells, plus whatever else has a similar density.

The nurse said it was a thing to have a picture of the donor holding the stem cells, so here I am. The bandage on my wrist is from the return line; I have a similar one on my left elbow. 

Then what? 
Usually within 24 hours, the patient will receive the donation. The patient will take it just like a blood transfusion, through a regular IV. All of the prep work has been done already, and hopefully the donation takes hold. The stem cells will start to produce the red blood cells, white blood cells, and platelets that the patient needs since hopefully all of the diseased marrow within the patient has been destroyed by the intensive chemo that the patient underwent. For roughly the next 100 days, the patient will stay in the hospital. During this time, the patient is at risk for getting infections due to having low counts of all blood types. After 100 days, the patient may be able to leave the hospital. 

I will not know the outcome for the patient for a while, and I may not ever know. After 100 days, anonymous contact is permitted through the NMDP. After a year, if both individuals consent, personal contact can take place. That is all an unknown right now. All is known now is that the patient will receive the donation, and it may give him a chance at a longer life. According to published statistics, survival rates are 30-60% two to three years after transplant.

After reading this, what can you do? You can join the bone marrow registry (click here). Out of all the people who are within the registry, one in forty will be called in for further testing, one in three hundred will be identified as a best match, and one in five hundred will actually donate. You can make a difference. Over the span of five days you may feel some discomfort. And at the end of it, you may give a patient a new lease on life.

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